tag:blogger.com,1999:blog-47622324592221476192024-02-02T04:24:01.526-06:00Land of LaLAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.comBlogger410125tag:blogger.com,1999:blog-4762232459222147619.post-26542126783767233462017-02-05T16:10:00.001-06:002018-02-05T14:02:25.233-06:00Standing up without falling apart<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; line-height: normal;">
<span style="-webkit-font-kerning: none;">This year has broken me more than any before. I have often felt alone. Yet I am still confident we are moving in the right direction as a family. It is hard when relationships change and fall away. It is hard to accept that differences in belief, or philosophy, or perspective might truly be greater than any commonality or connection can hold together. And my perspective, and expectations in some of my relationships have shifted drastically this year. And it breaks me up. </span></div>
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<span style="font-kerning: none;">I have felt so bound by the ropes of Tuberous Sclerosis. A fear of loss I have never faced before this year- and the anxiety it produces after its threat has past has not ceased to be present. And in all of this I keep coming back to the fact she is not mine to keep. </span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">But the heaviness that comes with the words “incurable disease” have settled in. </span></span></div>
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<span style="font-kerning: none;">Along with the continued daily grind of therapies, school schedules, doctors appointments, and illness. </span></div>
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<span style="font-kerning: none;">A few weeks ago during worship at church I so clearly saw this picture of me laying in a dark room curled up on my side. Truly unable to move. “bound” by the weight of this disease. By the isolation it causes, the strength it requires, and the lack of understand by those I wish understood most. Bound by the feelings of inadequacy, of being overwhelmed, and knowing despite all my efforts it would never be enough. When I say the room was dark. I mean black. Like when you walk from a bright room into a dark one and are momentarily blind. Jesus entered the room. Silently.</span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">He just sat next to me, taking my hand in his.</span></span></div>
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<span style="font-kerning: none;"> He didn't lead me out, he didn’t tell me to get up. He just made it known I was not alone. By not pressing me to get up, his gesture showed me it was okay to be in the season I am, that my dark place was understood, and it wasn’t shameful. But his presence gave me a clear picture that He who bore it all for me on the cross- was with me even in my earthy conflicts. </span></div>
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<span style="font-kerning: none;">This weekend at another church event we were encouraged to write our places of shame onto a note card- our places where we didn’t feel enough. Of course I wrote about this. After I did immediately this image of me in the dark room crept back into my mind. Except a door had been opened, light flooding into the room. Jesus slowly stood next to me and said- </span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">“Let’s go. When you are ready, lets head into the light”. </span></span></div>
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<span style="font-kerning: none;">If you don’t do the “prayer thing” or have a relationship with God- that’s okay. You probably know me and know I’m not crazy. So just take this for what it is- to me. </span></div>
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<span style="font-kerning: none;">I have so much to grieve (and equal amounts to be so very thankful for, but grief is still valid in this world, that is so different that what was planned). Recently my counselor challenged me with the idea that I could grieve these things, without falling apart. Which seems impossible, because they are dark and heavy, and energy zapping. </span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">So maybe this is my attempt to do that. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">(Or maybe it is just a completely discombobulated blog)</span> </span></div>
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<span style="font-kerning: none;">When Emmaus was in the hospital even after she was off the vent things were dicey. She had ICU delirium. (Caused by the large amount of meds, and very little rest she was actually getting, content stimuation, ect) One night I went home after being at the hospital for a week plus. Feeling exhausted I stayed at my parents. Because I just needed help with the girls. I got a panicked call from Dan in the middle of the night. Telling me to come. That he was afraid she was dying. Basically she was stiff, posturing, screaming, totally out of her mind withdrawing from meds, without appropriate management basically. I raced to the hospital fearing the worst. When I arrived she had finally quieted after close to an hour. Dan was sitting behind her holding her as tightly as He could. He was sweating, crying. </span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">These moments. These things. That fear. It haunts me. </span></span></div>
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<span style="font-kerning: none;">I won't soon forget the nurse with her foreign accent saying “we aren’t sure what is happening” as I raced down the highway at 2am. Me shakily asking her “is she dying?”. Those things just don’t go away. </span></div>
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<span style="font-kerning: none;">However, in a busy life, that never slows down, these things aren’t easy to process. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw7uUXKx1K_9dieviQGlp3qPMid7m5O-GHGLM95Ito-twTHguxW7nJ87wEAjr1EaE4w5TSELvNG65oqzkV-tPkeJ5jVh2MdfNmnjXh44Cxg5OtxETqbUFdb1PRG0w1gHUYnl4ANuXRvOc/s1600/IMG_8417.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw7uUXKx1K_9dieviQGlp3qPMid7m5O-GHGLM95Ito-twTHguxW7nJ87wEAjr1EaE4w5TSELvNG65oqzkV-tPkeJ5jVh2MdfNmnjXh44Cxg5OtxETqbUFdb1PRG0w1gHUYnl4ANuXRvOc/s640/IMG_8417.jpg" width="640" /></a></div>
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<span style="font-kerning: none;">I want to stand up. To walk out the door into the warm sun. But I think I have a lot to let go of before I have the strength to get to my feet. Even after these things are processed and released- they surely will have left me marked. But I long to get back to the capacity I had before this. I need the emotional space all of this takes up to be free again. </span></div>
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<span style="font-kerning: none;">So I am gonna try to grieve these things, without falling apart. </span></div>
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(Although I have been weeping as I write this inside of starbucks for an hour #awesome. Next time I will write in a less public place) </div>
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LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com2tag:blogger.com,1999:blog-4762232459222147619.post-59260804021360595262017-01-27T19:08:00.001-06:002017-01-27T20:18:48.425-06:00thoughts for today.<div class="MsoNormal">
<span style="font-size: 14pt; line-height: 107%;">The weight
of the world is not mine to carry. But </span><span style="font-size: 18.6666660308838px; line-height: 19.9733333587647px;">some days</span><span style="font-size: 14pt; line-height: 107%;"> I feel it on me. <o:p></o:p></span></div>
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I couldn’t sleep last night. I fell asleep on the couch
around 10. Woke up at 12 and headed to bed. Dan remained on the couch, because
once he falls asleep it is game over. There is no convincing him to move. I couldn’t get the day out of my head. When
you have a child with complex medical needs and learning needs a lot of things
have to work together to give them what they need. And yesterday I realized
some of those things had fallen apart. As I sat in bed recounting the day, wondering,
wishing. I couldn’t stop the tears from
flowing. Even now typing this I feel them creeping into the corner of my eyes. <span style="font-size: 14.0pt; line-height: 107%;">Her therapists become like family</span>.
The love they have shown her, the skills taught, the assistance they have given
us, it runs deep into my heart. And when they leave suddenly it breaks me. And
then I am left wondering- my sweet girl that loves these people so dearly does
it also break her? Has she been watching the video of her favorite therapist 100x
a day because she misses her? Or just because she likes it? And truth is- I
will never know, because she can’t tell me.
I knew this transition was coming. But we intentionally chose to keep
her in the same place for an extra school year, just give her and us a year of
ordinary. Last year pummeled us. We left it feeling bloody and bruised hoping
for a little bit of rest this year. Last night I couldn’t get my mind to rest
and I felt myself more than anything, wishing I was holding Emmaus, breathing
in the smell of her sweet hair. So I got myself out of bed and went and got her
and brought her in to sleep with me. The
peacefulness of her slow deep breaths, feeling her chest rise and fall, the
warmth of her next to me- it reminds me that it all will work out. That I am
lucky she is here with us. (FYI she might have smelled more like poo than sweet- but I still enjoyed my snuggles) <o:p></o:p></div>
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Sometimes this stupid disease makes me blind to the little
moments. I see big picture things that need to get done. My whole world becomes
a huge to-do list of <span style="font-size: 14.0pt; line-height: 107%;">yucky
paperwork and therapy goals</span>. All while trying to manage Emmaus’ health.
When I look at my calendar and see 3 specialty doctor’s appointments in a month
and know we will likely have another two for illness it makes me break out in
hives (okay not literal hives). It feels like a fight. Always a fight. And then
when you add the current political climate, man. I just feel the weight of it
all on me. I love justice. In my core I believe in doing the right thing. And
in a world that is so broken. With a daughter whose genetic code is so broken-
that feels heavy. <o:p></o:p></div>
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I have to step back and remember. <span style="font-size: 14.0pt; line-height: 107%;">I am not doing this alone. </span>We have a whole
community behind us. We have support. And though what felt like firm foundation
might be a bit weak at the moment- my foundation truly was never in Emmaus’
school or her treatment plan (although it is lovely when those things feel in
order). So in these times I have to come back to my TRUE foundation. <o:p></o:p></div>
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<span style="background-color: white;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;">He tends his flock like a shepherd:</span></span></div>
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<span class="indent-1-breaks"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background: white; line-height: 107%;"><span style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"> </span></span><span style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"></span><span class="text"><span style="background: white;">He gathers the lambs in his arms</span></span></span></span></div>
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<span style="background-color: white;">and carries them close to his
heart;</span></div>
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<span style="background: white; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large; line-height: 107%;"><span style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"> </span></span><span style="box-sizing: border-box; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"></span><span class="text" style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background: white;">he gently leads</span></span><span class="apple-converted-space" style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background: white;"> </span></span><span class="text" style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background: white;">those
that have young.</span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large;"> Isaiah 40:11</span></div>
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This road we are walking isn’t easy. But it is helpful to be
reminded that I love and serve a God that is gently leading those who have
young. Me. (Thanks to my besties for directing me back to my true foundation
via the most hilarious text thread that talks mostly about pizza and how we desperately
try daily not kill or screw up our children. Oh and poop. There is lots of
conversation about poop. And there is some encouraging scripture sometimes
too.) <o:p></o:p></div>
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com1tag:blogger.com,1999:blog-4762232459222147619.post-24282070164780094742017-01-02T08:21:00.001-06:002017-01-02T08:21:58.186-06:00Reflections on 2016<div style="font-family: helvetica; line-height: normal;">
<span style="font-kerning: none;">I feel I would be amiss to not reflect on 2016. While I haven’t done much blogging this year it is a goal to blog a bit more for the next. </span></div>
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<span style="font-kerning: none;">While the masses count 2016 a terrible year and even for us personally it has been rough. I can’t help but be grateful as we exit 2016. </span></div>
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<span style="font-kerning: none;">This year has held a lot of change for our little family, in the midst of hard things, I am proud of Dan and I stepping out in faith, selling our house, and moving to live next door to friends to work on intentional community. That was hard. It wasn’t the smoothest of transitions, our families thought we were crazy, but we knew it was the right choice for us. </span></div>
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<span style="font-kerning: none;">Dan rocked his Insurance licensure exams in the midst of Emmaus being in the ICU. And successfully changed careers this summer. </span></div>
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<span style="font-kerning: none;">As I reflect while it is intertwined with hard things, more it is a reflection on the the growth that has occurred this year. </span></div>
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<span style="font-kerning: none;">This year I learned that my child is not mine to keep. That I must be willing to submit her life (all of their lives I suppose) to the Lord. To hold them openly in the palm of my hand, and trust that even through the darkest nights God will not leave me alone. </span></div>
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<span style="font-kerning: none;">I have learned that my family stretches far beyond those who I share DNA with. And we have people who will show up. To pray. To mow. To bring caffeine. To sit with a very unsettled child in the middle of the night to give us a break. </span></div>
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<span style="font-kerning: none;">This year I have begun to focus on what it looks like to the be healthiest version of myself possible. Instead of thinking I am super-human and need not pay attention to my own needs, I have started focusing on my physical and mental well being. I am working on good boundaries, clear communication, and physical health. We have started to rest weekly as a family. To pace ourselves, to give ourselves permission to slow down. I am learning have to take care of myself if I am going to be a pillar for my family, and strong for my girls. </span></div>
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<span style="font-kerning: none;">I have spent half the year with an amazing counselor processing everything from the foundations I learned in my childhood, to major differences that are had in some of my adult relationships. Processing grief, loss and why I feel alone when clearly I am not. Really plowing the ground of my heart, emotions, and spiritual life to allow fresh rain to fall on it. </span></div>
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<span style="font-kerning: none;">I have traveled a lot this year. Which, if you know me well breathes life straight into my soul. I went to New York to advocate, teach and meet some wonderful other TS warrior mamas. I took a trip with my Mom, Shiloh and sister-in-law Sarah to California. Dan and I got an amazing get away to a five star resort in the ozark with some of the best food that I have ever eaten. And we took the most magical family vacation this December. 2016 converted me to a Disney Lover. I see many more trips in our future. </span></div>
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<span style="font-kerning: none;">I have started working with a new ministry, my contribution primarily being on their social media side. </span></div>
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<span style="font-kerning: none;">While 2016 has held some of my deepest, darkest, hardest moments. I am so proud of all that has happened as well. In fact, I feel like I dominated this year. Wasn’t always fun, or easy, but overall it was good! </span></div>
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com1tag:blogger.com,1999:blog-4762232459222147619.post-3407836882672163502016-08-31T21:43:00.002-05:002016-08-31T21:43:26.215-05:00The JungleI knew it would come. And when I felt it coming I was proactive. My breakdown, after Emmaus being so sick, after the chaos of the home repairs and move. I knew it would creep in. So here I am faithfully attending counseling. Again. Counseling- you know, the magical place you go to spent hundreds of dollars to iron out the wrinkles that reside in the depths of your being. Every week I feel like skipping. Every week I show up. And after the fifty minutes of hard work I leave more aware, more raw, leaning into this vast expanse of grief that resides in my life.<br />
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I feel guilty for grieving. Somewhere I have the belief that because God spared Emmaus' life I should only be thankful. And I am indeed thankful. But also there is the ever present grief that is like a veil over my life. The internal struggle in the fact that she SHOULD NOT have the battles she does. That the brokenness of Tuberous Sclerosis isn't fair. It is not right. And in a whole perfect world- it just wouldn't be. This spring I went from "knowing" that it was likely I would out live Emmaus (someday). To the very real reality of- "she literally she could get sick enough that it could happen any time". Bam. That is a lot to deal with.<br />
<br />
Anyway- today during counseling my counselor was weighing in that he felt a tension in holding this grief with me. His natural bend was to suggest we should find a way to figure it out, but that in all reality this just isn't a grief you deal with, and move on from.<br />
When I was 21 and broke up with my ex boyfriend who I was SO SURE I would marry. Who I cared about more than even myself at the time- it wrecked me. HARD. So I went to counseling to try to pull myself back together. And I grieved, healed, and moved on. I have been expecting to do that with this grief. But the truth is, when you are grieving your child's life long ailment, her struggles, how it has changed and impacted your life, and the hardness that is brings- it isn't a "deal with it kind of grief". My counselor called the grief I am dealing with "Wild" and something just clicked.<br />
<br />
My grief is wild. Just like the love I have for Emmaus is wild.<br />
<br />
If you know me you know I love clean, but whimsical landscapes. I would always choose for my yard to be manicured, but with some purposefully whimsical landscaping. Lanterns hanging from the trees, a stone path to walk along. Neat. Tidy. But room for a little contained wild.<br />
<br />
But the grief of having a child with a chronic disease. The grief of special education, and of silence from her sweet face. The grief in every seizure, sedation, surgery, med change. The grief in the very real prospect of losing her. That isn't a whimsical landscape. In fact it is a FREAKING JUNGLE. <br />
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I keep trying to prune the jungle. And then I get so discouraged and annoyed that all my pruning isn't doing much. And I even wonder if my inability to prune the jungle is because I am weak. But LET'S BE HONEST trying to prune the jungle is kinda impossible. It is never going to be an organized, whimsical landscape.<br />
So today I start trying to live in the jungle. (I hope there aren't many bugs. And if there are I am gonna need some DEET. Forget your essential oils. I need DEET. I hate bug bites. Bugs. BAH- I digress)<br />
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Anyway- these are today's thoughts on grief. It is wild. And I need to learn to live and thrive within my grieving. Because it isn't going anywhere. It isn't a grief you fix.<br />
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-16418796756910574972016-08-20T21:27:00.003-05:002016-08-20T21:27:15.631-05:00My Three<div class="separator" style="clear: both; text-align: left;">
Today Shiloh sweetly helped Emmaus get her shoes on. Without being asked. In fact- I don't think I have ever asked shiloh to help Emmaus get her shoes on- so it was likely all her idea. She put them on her all by herself with Emmaus trying to kick her in the face the whole time. Then checked with me to make sure "are dey on da white feet mama? Or are dey bakwards?" Shiloh also has started praising Emmaus for things. Which might just be the sweetest things I have ever encountered. She also tried to encourage Emmaus to eat her yogurt last night by doing the "airplane" into her mouth. I want to be more like Shiloh. *Maybe not the whiney, typical three year old melt down parts. But I want to be able to see what people need, and help meet their needs. She is just the best sister!</div>
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And then there is this. I mean o.emmmmm.geeee. She now thinks she is a big kid. And it is rude. And cute. She also has such a sweet relationship with Shiloh. They will be besties I have no doubt.<br />
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I am so thankful to be the mom of these sweet girls. And I am thankful they have each other. </div>
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...A cord of three is not easily broken. </div>
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-46213837569294481602016-07-21T19:58:00.001-05:002016-07-21T19:58:33.346-05:00LamentingWe moved. It was perhaps one of the most chaotic things I have ever planned. In fact, nothing went as I planned- imagine that. I cried. Multiple times. I literally felt by the end of the weekend that I had been run over by a truck. So by the time Tuesday rolled around I had done a bit of processing and I found myself sitting in my counselors office lamenting about the woes of moving, of disappointment. And how following this crazy season of life my margin for rolling with the punches is much thinner.<br />
(I realized about a month ago that in all reality I am just not okay after our scare with Emmaus- and so I needed to talk about it. Dan and I had previously seen a great counselor- so I called him up and bam. Here I am again sitting in his office every Tuesday.)<br />
Lamenting.<br />
What does that even mean? That is what he has challenged me to do. Lament. (It means: To express one's deep grief about. Or to express deep regret or disappointment about something considered unsatisfactory, unreasonable or unfair)<br />
So I lament. Holding with one hand the very truths I believe so deeply- God is good, He loves me, and He wants good things for me.<br />
And with the other I scream aloud. THIS IS NOT OKAY. <br />
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And you know what? I don't feel like it's okay. I am sure I will find my peace again with the life I have been given, with the reality that my daughter has tuberous sclerosis and that life is often just hard. But right now, it just isn't okay.<br />
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I like things to be pretty, to be smoothed over. And so even when things are hard I like to be able to focus my heart on hope. The good. The way God has provided- cause my has He ever provided for us.<br />
So learning that I can have a heart of thanksgiving- and still truly wrestle with these things and not have it be smoothed over feels hard. It is raw and rough and ugly.<br />
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So although I have always strived for my blogs to be honest and real- they might not be so pretty for a while.<br />
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Because it just isn't okay that my daughter has tuberous sclerosis. autism.<br />
It is not okay that pneumonia almost killed her.<br />
It is not okay that the med that helped her progress had such horrible side effects. And now isn't an option.<br />
It is not okay that she cannot talk to me, or tell me her needs, her likes or how her day was.<br />
It is not okay that she has seizures.<br />
It is not okay that appointments, medicines, and therapies fill her day.<br />
It is not okay that I have to explain to Shiloh why Emmaus can't talk. Or hear her pray that "Mae Mae would have no seizures"<br />
IT IS NOT OKAY. IT SUCKS. IT IS BROKEN. AND UNFAIR. and my heart is broken over it.<br />
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But. God is Good. He loves me. And He wants good things for me (And Emmaus!). And in my lamenting- I will never cease to believe or say that. Because it is all I know for sure.<br />
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-88637961422668517312016-06-29T20:48:00.002-05:002016-06-29T20:48:40.867-05:00Scars and Wounds and Messy Stuff.<div class="MsoNormal">
In the middle of the night last night as I was comforting my
almost 11 month old for probably the third time that night, laying there with
her on top of me because that is the only way she would quiet down and sleep, I literally had the thought “I sure don’t like you as much as I thought I
would when you were an itty baby” WOW. That
is what 5 years of unpredictable sleep has done to my thought process. Don’t worry- I liked her again this am when
her chubby self got to belly laughing.
The funny thing is- three kids in you would think I would have an idea
of why the heck she was up so much last night, but I just have no idea. Teeth?
Ears? She just want to snuggle? I DON’T EVEN PRETEND TO KNOW. I swear these kids might be trying to kill me.
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We sold our house. We have been thinking about moving for a
year or so, and before Emmaus got sick started the process and well now it’s
done. We will be renting in a nearby
city close to some friends of ours (like our back yards touch) for a
while. The rest will depend on schools
for Emmaus and where God leads us in reality. </div>
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Our house sold fast. 8 days. Which felt like 100. On day 7 I
cried to my sister-in-law about how “of course our house wasn't selling fast
because nothing is that easy for us” (insert deeper issue/feelings I should sort out). We had one offer before that which was so low
it was a bit offensive. So I was feeling
quite defeated. Beat up. We had close to 75 showing in 8 days and so we
basically weren’t home for a week- and then, after my meltdown we had a great
offer the next day. </div>
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Let’s be honest- I needed to have the meltdown. Like my wise
sister-in-law pointed out I am a do-er.
I am calm in crisis, I get what needs to be done taken care of and then
I move on. And sometimes moving on to
the next thing (Like selling our house right after our daughter was incredibly
ill) might be a way of avoiding dealing with all the feelings and emotions one
is bound to have after such a traumatic event.
Cause let’s be honest- who wants to take their downtime to “work out”
all that tangled mess of feelings? So I am going to say that our house being on
the market longer than I expected (I
had a bidding war, opening weekend sale in mind) was the Lord’s grace to me so
I could begin to deal with my junk. </div>
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See the thing I have realized over the last few weeks is
that even though I have grown into dealing with the fact my daughter has a
rare, complicated, and incurable disease.
Seeing the reality of just how
sick she can get, and facing the fact that one day I may have to say goodbye to
her while I remain on this earth is just a little more than I can even begin to
process. I have faced the grieving that
has come with my expectations of my family and life being so very different
from the reality of them. But this- this
is a whole new set of wounds, of disappointment, of anxieties and fears. </div>
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I started reading a new book today. Here is an expert from it.</div>
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Scars are easier to talk about than they are to show- with
all the remembered feelings laid bare. And rarely do we see wounds that are in
the process of healing. – Brene Brown</div>
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And so I haven’t blogged- because who wants to expose their
gaping open wound? Am I right? </div>
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But- I also realize I am not alone in these experiences. We
all have open, gaping wounds. They might
be different than mine, but they are present. And being vulnerable and open even in the hard
stuff is important to me. So there it
is. </div>
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I will leave you with this. A sweet picture of Emmaus "singing" as Adele blasted on my phone today. Girlfriend loves some Adele. </div>
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-56020975949338406852016-06-02T20:56:00.003-05:002016-06-02T21:09:56.416-05:00Marked.<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; line-height: normal;">
Part 1- Reflections </div>
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I thought she was going to die. I had a conversation with mom my in a dimly lit Ronald McDonald room about how sick she really was and that was the first time I had spoken my fears aloud. Later- after she was intubated- but still getting sicker I picked up the first Laura Ingalls Wilder book- Little House in the Big Woods and started crying- hoping I could read it all to her before she died. I started reading it aloud to her that afternoon. </div>
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We knew she was sick, she had been inpatient with pneumonia for five days without much improvement and then the team of doctors finally pulled the trigger to have a chest tube put in on day six. She had a late afternoon procedure and was well enough before hand to go stroll the halls in the wagon, oxygen hooked up, and to visit the playroom. And then she went down for her chest tube placement. I was so nervous before it- which is saying something. I don’t get nervous. I think maybe I was less nervous about her having brain surgery. I warned the surgeon, and the anesthesiologist that her platelets had been dropping and asked them to check them before starting. The medical team she was on was fine, but they were a little to focused on pneumonia- and what pneumonia looks like in normal- non TS kids- and how pneumonia acts in these kids- and despite my mom instinct and me repeatedly saying “Hey- I’m noticing this- or this- or this is how she typically responds- they made it very clear they didn’t want to “look for issues” (nor did I- but I thought we could at least address the issues that were presenting) </div>
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I feel like I am in an odd place being both a pediatric nurse and Emmaus’ mom. It is a total blessing- but I also know too much. I feel kinda paranoid and crazy when it comes to her, afraid the doctors are saying things like “oh her mom is a nurse, so she's worried about everything” but honestly- my instinct hasn’t been wrong yet- so I guess I should just get over that. And it seems if it is rare, and unlikely, it probably isn’t that far off base for her. </div>
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That night after her chest tube placement things got really bad. She had gone back up to a med-surg floor and she just got sicker and sicker. She was so white, and totally not alert. Her respiratory rate slowed, and she wasn’t even waking up when painful things were happening. Honestly- when I think back on that evening it is a huge blur. She was fine and we were just waiting for her to wake up from the sedation, eating a pizza- and then suddenly it was clear that she wasn’t waking up, and maybe it wasn’t because she was sleepy from sedation. Her C02 monitor was alarming non-stop, making Dan on edge. It was bad. I puked in the bathroom. I couldn’t stop assessing her. From head to toe I was going though everything I could think of over and over. I kept trying to stop thinking like a nurse to simply be her mom, but I knew things were moving to slowly- she was going downhill too quickly. Outwardly remaining calm inwardly losing my shit. That night was rough- but the pain team doctor was amazing. Someone told me maybe she had once been a nurse? I literally thought she was an angel- that if I searched for her she might not truly exist. She does exist by the way. </div>
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Finally we got her to the ICU. But even then, with the best physicians things kept getting worse- for days. At one point I researched low albumin in critically ill children and found a study done about how it increased the mortality rate. I stopped reading. </div>
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Finally things started getting better. X-rays looked better, fevers reduced. And then came the med psychosis- ICU delirium. I think the fear in those long days was worse than the fear of her dying. Seeing her so scared. Terrified. So terrified it would cause her heart rate to sky rocket to over 200, for her muscles to become rigid and posture. These drugs- they are a powerful thing. And when your system reacts poorly to them it is intense. I told someone she was ‘out of her mind’ and I meant that literally. I have never seen her eyes so dark- so wild. </div>
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<span style="-webkit-text-stroke-width: initial;">Just yesterday she was scared of something and trembling. It took me back. Back to those long days and nights of fear. Of whispered pleads and prayers that her mind be protected. That she be would be calm and not feel alone.</span><span style="-webkit-text-stroke-width: initial;"> That she would not be scared or afraid.</span></div>
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Here we are almost a month after coming home. She is happy and basically back to normal. But for me- things are just different. I have been marked by this experience. Marked by truly fearing she might die. Marked by feeling no matter how loudly I voiced my concerns, waved my arms- they were overlooked- dismissed- I don’t know I have ever felt so powerless. Marked by knowing I gave her a med- choose a risky med for her in hopes it would giver her seizures freedom, that it would allow the words she knows to be spoken-that in turn made this sickness go from a common cold to a terrible pneumonia. There are occasionally times in life when there is a “before & after”- a true life changing event. And I feel that this was one. I am changed because of this illness we battled. And I am grateful-even though weary and war torn- we are all here together on the other side.</div>
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-85024361062982665872016-04-25T08:50:00.000-05:002016-04-25T08:50:05.669-05:00Burning heartsMy current Jam <a href="https://www.youtube.com/watch?v=Q_cX0-wBoGs">https://www.youtube.com/watch?v=Q_cX0-wBoGs</a> (thanks JB)<br />
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Emmaus came into this world with a labor of love. A labor that was maybe my truest moments of communion with the Lord. A time where I knew the nearness of the Lord, and knew he heard and cared about my request. Where as her mother my body broke for the child I was carrying. With every contraction I allowed my body to submit to the process that was a new life entering the world. I pled with the Lord that night and into the next morning that she would be born healthy, that she would be spared from the burden of sickness we suspected was present in the very core of her genetic code.<br />
Her name had been in my heart for a long time. I heard a sermon at church about the road to Emmaus. The idea behind the passage in Luke 24 is that after the resurrection Jesus walked with the disciples and they didn't recognize him. He spoke scriptures and truth to them, and then only after they left him did they realize it was him with them. <span style="background-color: white; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px;">They asked each other, “Were not our hearts burning within us</span><span class="crossreference" data-cr="#cen-NIV-26024AE" data-link="(<a href="#cen-NIV-26024AE" title="See cross-reference AE">AE</a>)" style="box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span><span style="background-color: white; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px;"> while he talked with us on the road and opened the Scriptures</span><span class="crossreference" data-cr="#cen-NIV-26024AF" data-link="(<a href="#cen-NIV-26024AF" title="See cross-reference AF">AF</a>)" style="box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span><span style="background-color: white; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px;"> to us?”</span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwgTfIsTf9R6BBfJVeyd1encXykTjNnzM8FOvtpQmlmulnzWvP1VIu7qSdf9E6hIeVNlsCrN5y_rznacZWVAndq-JwMi5hmsGRY0ircuSceskbhf0gxMgoZ59bTfyjdrZelgc-anulumM/s1600/family-6.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwgTfIsTf9R6BBfJVeyd1encXykTjNnzM8FOvtpQmlmulnzWvP1VIu7qSdf9E6hIeVNlsCrN5y_rznacZWVAndq-JwMi5hmsGRY0ircuSceskbhf0gxMgoZ59bTfyjdrZelgc-anulumM/s320/family-6.jpg" width="213" /></a>Dan and I were engaged the first time I brought up our hypothetical daughter Emmaus. He immediately said "hell-to-the-no" It's weird I get it. But then I just kept on it and he grew to love it too. And it was actually him when we first found out about tuberous sclerosis that said "well, her name is clearly Emmaus!" We knew along the road that we wouldn't always know the Lord was walking with us. But looking back we would surely be able to see he was there all the time.<br />
This girl. She has increased my faith. She has caused my heart to burn for the Lord. To know that this world is temporary, broken, and full of sickness and death. But that this world is not my home. I was created for the world that is coming.<br />
This week I have had to submit to the Lord that Emmaus is his child. I have once again had to say "Lord I trust you, and will submit to your will for her-for me." Emmaus in my life is a spiritual catalyst. She makes me seek the Lord, because there is no way for me to try to control her, or the outcome of her life. I cannot sit in fear over her life. Because I have no control over her life. This doesn't mean I haven't been afraid. Just that I cannot live in a place of fear.<br />
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Anyway- these are just my sleep deprived- ICU mom ramblings. </div>
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I won't claim my Emmaus is changing others, or making their hearts burn for the Lord. But she has changed me. And that is enough. </div>
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com2tag:blogger.com,1999:blog-4762232459222147619.post-79069737516477283562016-04-21T17:44:00.004-05:002016-04-21T17:44:50.601-05:00God is Good all the time. First. This is my current Jam- You should give it a listen. The whole CD is great. But man- this song.<br />
<a href="https://www.youtube.com/watch?v=nYP8b7p3I64">https://www.youtube.com/watch?v=nYP8b7p3I64</a><br />
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I could write all about the nitty gritty details of the happenings in this ICU room for the last several days- but instead I will just say Emmaus isn't doing well, and we covet your prayers for her, and us.<br />
I don't know that we have ever faced such a trial. Everything about this sickness has tested and tried us. It has been harder than brain surgery, or endless seizures, developmental delays and autism. And at least for today I don't even have encouraging news. But I did just want to write out a thought real quickly.<br />
Even through this. In crazy times like this. When every day for the last three we have gotten worse and worse new about Emmaus' health, even when she is not getting better, even as I sit in her ICU room where she lay pale, intubated, and sedated- I just want to make it clear that God is Good ALL THE TIME.<br />
This sickness, this pain, her underlying tuberous sclerosis, this was not God's plan. These things are a result of brokenness, of sin being a part of this world. And while it is hard- really hard to live in the midst of this- God has taken care of this too. He has already sent his son, he has already paid the ultimate price to take care of this brokenness.<br />
As her mom I have so many emotions. So many fears, and unknowns. The one things I do know I have a God Father that has not forgotten about me. He has not forgotten about Emmaus.<br />
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So- I know this is a bit preachy for my normal post. But this is what is on my heart today- so I figured I would share it.<br />
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"For God did not give us a spirit of timidity or fear, but He has given us a spirit of power and of love and of sound judgement and personal discipline abilities that result in a calm, well-balanced mind and self control"<br />
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com2tag:blogger.com,1999:blog-4762232459222147619.post-34415667044855253952016-03-27T14:33:00.004-05:002016-04-07T06:34:01.829-05:00Easter Sunday- When you are standing in "Saturday"<div style="text-align: left;">
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Have you seen this? </div>
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It came up on my Instagram feed this weekend. It's the idea that we wait and mourn the resurrected Christ but Sunday is only a few short days away and we soon will celebrate the risen Lord. </div>
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I have been in a little bit of a funk around Easter and today I think I finally realized why. </div>
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I keep thinking about this "Sunday is coming" idea. I am so thankful that we have the Hope of the Risen Lord. That my sin has been defeated and I am promised eternity because of his death and resurrection. </div>
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But I keep coming back to "Saturday". </div>
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What happens if even though it's Easter Sunday-I am stuck in a Saturday mindset. A place where brokenness is still very real- where sickness and death still sting. Where I am waiting and anticipating good things, but am still very aware we are in the midst of some tough stuff. </div>
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Lately I have been hit hard with the reality of raising a child with significant special needs. And yesterday Shiloh asked for the first time why Emmaus doesn't talk. Dan explained why and she responded with "Maybe someday she will talk daddy?" </div>
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These hard things feel very "Saturday" to me. </div>
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I love that Shiloh's natural response was hope. And while I fully recognize the hope that Easter Sunday brings- my life is in a place of Saturday currently. </div>
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A place of navigating the effects of having sweet Emmaus in our family. In learning how to navigate her disease with her sisters, the beginning of having to guide them through the delicate journey of understanding that comes with a sibling like Emmaus. </div>
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I often think about eternity. Jesus coming back, or us joining him in heaven. And the health, healing and wholeness that will be. I think about Emmaus, her running and talking and never being sick. I think about the aches and pains that plague my body and my heart and how those won't exist when "Sunday" comes for the final time. </div>
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I know I am not alone here. The reality of standing in Saturday- looking forward to the fact "Sunday" is coming- but knowing it may not come for a long time. </div>
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I am thankful for the hope of Sunday. In the truth of the resurrected Lord. What I guess I am trying to say is this- if this Easter morning you are finding yourself in the depths of Saturday. In the midst of sickness or death and in the reality of this broken world, in a season of hard things. If you, like me are caught off guard by the sting of these things even on this Easter morning- you are not alone. </div>
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Happy Easter dear friends! </div>
<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-68922392910006292852016-03-10T22:44:00.000-06:002016-03-10T22:44:29.528-06:00Boogers, Poop, and Work Clothes.Today I spent probably five minutes trying to scrape a booger off the pantry door. Why the heck was there a booger on the pantry door? As I chatted with my best friend about my lengthy booger scraping session she said she once tried to scrape a multitude of boogers off her daughters wall with a paint scraper, and it turns out if you spray salt water on them they reconstitute into wet boogers and wipe right off. That woman seriously knows everything. It's kinda magic. (You're welcome for that tip-courtesy of her of course)<br />
Tonight as Shiloh was sitting on the potty screaming "I DON'T HAVE TO POOP!!" (Even though she had been doing the poop dance for an hour) she unrolled the ENTIRE roll of toilet paper. THE WHOLE ROLL. Oh and of course she's sitting on the potty without a stitch of clothing on cause it is the rule of two year olds everywhere that it is impossible to use the bathroom while wearing clothes. She then proceeded to try to negotiate TWO suckers if she pooped. Defeated I agreed to whatever she wanted if for the LOVE of all that is good and holy she would just poop. She earned exactly zero suckers.<br />
Whenever we go out I take our diaper bag which is my college backpack so that we can fit all the stuff we need for three tiny humans. Sounds like a good idea huh? Well how is it every single time we are out the baby poops out of her diaper? I'm serious- how is that possible? And every single time I do not have a single diaper for her. And I have no wipes. In fact it turns out the diaper bag actually only has a pair of socks, 18 month pants (which no one has fit in for over a year) and a 4T t-shirt. Oh and an orange that is now petrified into some sort of potpourri or something. And lots of crumbs. Oh and I found a pair of Shiloh's shoes that had been MIA for about a month. (I will give myself a little credit- I do have Emmaus' emergency seizure med in the backpack - which even if I never have wipes- I do ALWAYS have that)<br />
Today I literally wiped spit up off my baby with a sock I found in my car that one of my other children had at some point taken off. Because I couldn't even find a napkin.<br />
I truly used to be much more organized. But that was back when I only had one child. I am not organized by nature so it's just gone downhill with each baby.<br />
This morning as we tried to give Emmaus her meds (she's currently on a med strike so it's SUPER fun to give her all her meds) Dan put her on his lap, and when he lifted her off when we were done he was covered in oatmeal that had been stuck to her bottom that we hadn't noticed. Which leads me to this reality- whenever I get dressed for work it is only a matter of minutes before someone comes and wipes snot on me or the baby spits up on me. I can stay in PJ's all day and that never happens- I put on work clothes- BAM. SNOT EVERYWHERE. (Luckily it's just scrubs and I'm probably gonna go to work and get snot on me anyway- but seriously. every.single.time)<br />
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I often find myself just standing in my living room thinking "Is this really my life? What is going on right now?"<br />
I don't even know why I'm writing about this right now. Although-If you have a kid, and definitely if you have more than one you can probably relate.<br />
So my serious questions are.<br />
1. Why is there so much snot in parenting?<br />
2. Doesn't it get cold stripping down to your birthday suit every time you go potty?<br />
3. Does anyone have an actually good diaper bag system? (And I mean someone who has multiple kids- non of which are self sufficient- and all wear different sizes ect)<br />
4. I know you are judging a little for wiping my kid up with sock- yeah it's okay- I am too.<br />
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That's all. It's almost the weekend people. Hang in there!<br />
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com2tag:blogger.com,1999:blog-4762232459222147619.post-29596224764434359432016-03-06T11:29:00.000-06:002016-03-06T11:29:11.725-06:00From the overflow of the heart the mouth speaks. It has taken me decades to calm my words. You know those powerful little things that so easily come flowing out of our mouths? And still I often fail at filtering my thoughts before they flow from my lips. I am often unaware of my tone, and have to apologize for "being snippy" as Dan calls it.<br />
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You know that old adage "the apple doesn't fall far from the tree?"<br />
Well I have an apple to my tree. Her name is Shiloh.<br />
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At two and a half years old that girl is beyond verbal. Her though processes surprise me every day and to say she is a sponge soaking in every detail, every word, every situation is probably an understatement.<br />
We have been working a lot with Shiloh on using her words wisely. I am still not sure when I give her my big speech of "how we speak to others" if she really gets it. But I am going to keep giving it anyway.<br />
At two years old it baffles me that she can spew such fire out of that sweet little mouth. And then turn around and say such sweet encouraging things a few minutes later.<br />
It reminds me of the true power that lies in our words. And as I strive as her mama to shape her heart it forces me to check on the state of my own heart..<br />
<span style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif;">Good comes from a good man because of the riches he has in his heart. Sin comes from a sinful man because of the sin he has in his heart. The mouth speaks of what the heart is full of. Luke 6:45</span><span style="font-size: x-small;">)</span><br />
To check what is coming out of my mouth.<br />
Am I filling my heart with truth and life? Or am I letting my sinful, selfish nature rule?<br />
Our words can bring life or death. And it is up to us to make sure our hearts are full of things that even in our weak moments would speak life.<br />
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To shape, and mold and encourage our Shiloh will not be an easy task. She is emotional and passionate, she knows what she wants, her likes and dislikes and she is firm in those opinions.<br />
She can be so loving, so kind and tender.<br />
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She has the unique ability to sway the mood of a room with her mood, with her actions.<br />
To engage those who typically sit on the sidelines.<br />
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I have a feeling she will be the most anchored piece in our "cord of three". So to teach her where her strength comes from, that her true anchor is the Lord, it will not be easy. And in parenting her, teaching her- and realizing in parenting we must first check on ourselves. It's sure a humbling experience!<br />
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She will do great things. She will march to her own beat, and lead those around her. We just have to tame the wild, unbridled tongue. (Although I'm sure it is a journey that will take decades)<br />
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-13893963378956999632016-02-25T11:42:00.000-06:002016-02-25T11:47:14.828-06:00Reflections from 20. I have been thinking a lot about turning 30. I didn't realize how much it would make me think about all that happened in my 20's. So I thought in honor of entering the next decade of my life I would share a few of the major things I learned in the last.<br />
Overall I think my 20's was a decade of beginnings. I began a career, a marriage, and parenthood. I believe my 30's will focus a lot on growing these things.<br />
So here we go- things I've learned.<br />
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<span style="font-size: large;">On Love</span><br />
Don't make someone your priority if you are just their option. No matter how hard you try, you cannot make someone love you the way you love them. Loving them really well does not mean they will love you well. Sometimes it is really hard, but walking away is probably the right choice.<br />
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Love is not a feeling- it is a choice. You have to wake up every day and CHOOSE to love your spouse. And if you can find someone who is willing to do the same with you, who you really enjoy, and who makes you happy. MARRY THEM. IMMEDIATELY.<br />
<br />
<span style="font-size: large;">On Money</span><br />
Don't owe people money. Not the car people, or the student loan people, or the people at VISA, CHASE, AMX or MASTERCARD. Or your mom or dad, or sweet little grandma. Just don't owe people money. Work hard. Pay off the money you owe, and then don't owe people money ever again. It's weird to be debt free- and it's amazing.<br />
<br />
Give your money away generously. If someone needs something and you can, buy it for them. Skip starbucks, resturaunts, and other luxuries- take care of the people around you. (And then they will take care of you too)<br />
<br />
Prepare for the unknown- IE unforseen medical expenses- yes it stinks to spend your savings on medical expenses, but not having the added stress of not knowing where the money will come from is kinda a big deal.<br />
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<span style="font-size: large;">On Sickness/ Loss</span><br />
Sickness happens. Genetic disorders happen. Autism happens. People die. It wasn't "Gods plan". In fact, HIS plan didn't include sickness- because he didn't intend for this world to be a place of sin and brokeness. However, it is. Sickness just happens. It's not your fault. Just do your best with the card's you've been dealt. Try to learn and grown and prosper in all circumstances. Cry when you need to. Be a comforter to others when that is called for. When you feel like you might drown "Just keep swimming".<br />
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<span style="font-size: large;">On Rest/Work</span><br />
Work from your Rest. Make having a day of rest a TOP priority in your life. Four hours of doing something that seems restful to you once a week can make all the difference- more than four hours- is seriously amazing! When I say have a day of rest- I mean PUT IN ON OUR CALENDAR- and schedule around it, it is that important.<br />
It is okay to say no to things. An overly packed calendar doesn't really mean a fuller life, just a busier one.<br />
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<span style="font-size: large;">On God</span><br />
God loves me so incredibly much. He wants good things for me. And even if my plan, and what happens are really really different, it doesn't change the goodness of God. There aren't many constants in life. But the truth that God Loves me, and He wants good things for me are some that never change.<br />
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<br />
<span style="font-size: large;">In general</span><br />
Be kind to others- you catch more flies with honey than vinegar.<br />
Be honest. (While still being kind)<br />
Be generous.<br />
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-84020498081249163122016-02-10T13:47:00.001-06:002016-02-10T13:47:31.716-06:00Bed time reflections.I don't often put Emmaus to bed. It just happens that as our nightly rhythms line up I generally put the baby to bed and then spend some quality time just with Shiloh before it's her turn, and Dan takes care putting Emmaus to bed.<br />
But a couple nights ago I was on triple duty and got to put Emmaus to bed. We have a very specific rhythm with her as sleeping in general isn't her strength and bedtime has always been rough. Currently we tuck her in and sit on the floor or her room till she falls asleep. As I sat on her floor in the dark with one hand resting gently on her head I began thinking about Emmaus' life, and how it has changed me.<br />
I pondered the struggles we daily face, and the hope and beautiful life that comes with it. Sometimes I am still surprised by the fact I have a child with Tuberous Sclerosis. That at the "ripe old age" of 24 my body had a genetic hiccup while Emmaus was being formed- and TS was the result. It just seems crazy to me.<br />
And while TS is something I wish we didn't have to deal with, the lessons it has taught, the community it has gathered, I wouldn't give that up.<br />
I considered my girl, somewhat trapped in her own body. Limited by her lack of speech yet, so aware of what she wants and needs. I considered how she has changed my perspective. How she has taken my overly competitive nature and shut it down. How she has taught me to not judge others on what appears to be, because we truly never know what is going on in someone else's life, or their home. She has taught me to be compassionate to those around me, to lend a helping hand whenever possible. To give to others generously, because so many times we have been on the receiving end. <br />
I sat and prayed for her. For hope to be her story. For her life to be abundantly happy! For words to form freely and be expressed freely. For her to read and write.<br />
In the chaos of my current life stage it is rare to have a completely quiet focused time. It was a sweet time to sit and reflect and just pray for her.<br />
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-22389606180131884282016-01-28T21:39:00.000-06:002016-01-28T21:39:01.048-06:00Good People<div style="text-align: center;">
To be known. </div>
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To be loved by a tribe. </div>
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A sisterhood that was made in the awkward years, through fights where no blood lines tied you together, just the grit and hard work to make it through. </div>
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I count myself lucky to have these women. The ones who pull me up. Who daily connect with me to make sure my mind (and my children) are still intact. </div>
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The ones who have cried with me over love lost, stood next to me as I promised forever, have quietly encouraged me as I have welcomed babies into the world, who have cried with me over the imperfections of genetic codes, and celebrated the beauty of this life we live.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinCU99XBiVTE1XgsrscEkwL89S0b7pHQzOK67d9hcP4KwHnZOyaR5-lQNj4aviaMpLYl3MSDa3cCmxk0MfVBItwkzTEJye198Q6yNX19OsXEzemcbTS77cmfEcIBt4G4g4tWnnn30DWck/s1600/IMG_5554.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinCU99XBiVTE1XgsrscEkwL89S0b7pHQzOK67d9hcP4KwHnZOyaR5-lQNj4aviaMpLYl3MSDa3cCmxk0MfVBItwkzTEJye198Q6yNX19OsXEzemcbTS77cmfEcIBt4G4g4tWnnn30DWck/s640/IMG_5554.JPG" width="432" /></a></div>
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They have fed me, clothed me, and loved me through the hardest of growing pains. </div>
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My people- they are good people. </div>
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-29984985094455308752016-01-27T20:46:00.000-06:002016-01-27T20:48:17.813-06:00Stand Strong Weary WarriorAll around me the battles seem big.<br />
The whining and crying and deep deep frustration from my four year old, who is fighting so hard daily to be known, to be understood.<br />
The two year old ears that find it hard to listen, the two year old will that finds it hard to obey, and the two year old soul that needs oh so much attention, tenderness, patience and fierce love.<br />
The baby who loves to be close to mama in the hours of the night when all should be sleeping.<br />
The ones who are over tired, over booked, over worked, discouraged and financially strapped.<br />
The ones fighting for their lives, their health, waking daily in an uphill battle, but not giving up.<br />
The ones mourning the loss of life, gone to soon.<br />
The ones waiting so tenderly for the call that a baby needs a home, and that home is theirs.<br />
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The battles are big. They are hard and heavy handed.<br />
Stand Strong Weary Warrior.<br />
You are not alone in these deep places.<br />
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Thank you Jesus- for Your grace abounds in deepest waters.<br />
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-69713475428528012042015-12-18T14:06:00.001-06:002015-12-18T14:06:18.027-06:00Motherhood. Who knew. I have to remind myself almost daily that these years are suppose to be the crazy ones. That having little kids isn't easy. It feels like time just rushes together and yet somehow the two hours from 4pm-6pm last an eternity.<br />
I looked at my work schedule for the first six weeks of the new year and instantly felt overwhelmed. Desperately searching for when I would "get a break". Truth be told I never have worked so many hours since becoming a mom. And while I know I am exactly where I am suppose to be, the demand of it all feels heavy. It seems impossible to be in charge of so much and to do it all well.<br />
It is funny. I have always dreamed of having a family. A big one. I didn't always want to be a nurse, or have a love for sewing and crafting. But I always wanted to be a mom.<br />
And yet the mom job is so much harder than I ever imagined. It seems crazy to me all the self sacrifice it takes to "have exactly what I wanted".<br />
Of course I figured I would stay home, have endless funds to do fun things with my kids and take vacations with them- all my kids were of course healthy, and EXTREMELY well behaved and they were all excellent sleepers- and the sickness-you know, the endless runny nose, cough and fever that never leave small children- yeah that didn't exist in my mind.<br />
(I am giggling writing this. But it's true! It's kinda what I dreamed this life would be like!)<br />
Instead I am humbled daily- serving the tiny humans I created. Working hard outside our home, while trying to manage everything in it. Driving what I call "the bus route" to and from Emmaus' school each day. Working to try to understand what she needs and her frustration at a low level. Pleading with my two year old to stop crying, whining, and to try her food. Annoyed when my baby is still waking to eat multiple times a night. (Seriously we need to sleep train- but I am just too dang tired!) <br />
I have to remember to stop and enjoy the stage we are in. Even in its hardness. To take a look around and be less overwhelmed for the housework that never ends, the sleep that never happens, and the snot that is ALWAYS on my clothing.<br />
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Motherhood. Who knew. </div>
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-53310080746731934422015-12-01T23:04:00.001-06:002015-12-01T23:04:19.943-06:00So much sickness. I haven't written because I have no words. And well I have three kids and I'm working basically full time so I just haven't had the time or energy.<br />
It has been a hard few weeks. We are going on 7 weeks of sickness. Real sickness. A viral pneumonia for Emmaus that resulted in a hospital stay for a week. A week after she was released I had a kidney stone that required surgery and me just feeling crummy. Then I got shingles- cause that's likely. Followed immediately by a significant cold. All the while Emmaus still hasn't completely gotten over her sickness, shiloh and the baby have had colds too, which means no one is sleeping, or happy and we all are overall just pretty miserable. Then Sunday Emmaus spiked another temp and has a pretty bad respiratory infection again.<br />
Oh- and apparently postpartum anxiety is a thing? I never knew! I am about the least anxious person in the world and suddenly my mind races to the worse case scenario at all times and I am terrified of all the very real things happening around me, no matter how unlikely they are to actually happen to me.<br />
I am discouraged that we have affinitor (Emmaus' new med) sitting on our kitchen counter. And since it has arrived she has not been well enough to start it. It feels unfair. All this sickness feels personal. Like an attack. (I'm sure it is). Emmaus has been pretty darn healthy for over a year and right now when we have this med to try all of this sickness has come out of no where. It stops me, makes me pause and once again realize no med will heal her. It makes me put my trust back in the Lord. All of this sickness drives me to pray. To ask for the Lord to rescue me from these trials. To ask the Lord to heal her, to take this burden from her. Because I simply cannot do anything else.<br />
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This mothering gig can be lonely. The days are so long. The whines and cries so loud. And when I am alone with my tiny humans all.day.long. I sometimes forget I am not alone in this. I think the isolation in motherhood of having small children is intense. But I am not alone. I know so many of you that I know personally and that I haven't ever met are fighting the same battles. The daily grind of raising tiny humans. Fighting to find the joy in little moments surrounded by mass amounts of chaos. I mostly like chaos, but all of this sickness I can do without.<br />
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One last thought. I realized I HAVE to start taking care of myself. I take care of everyone else. But I neglect myself. And I am not just magically going to start taking care of myself! I must form the habit of doing this. So, I've started drinking water. (Coffee doesn't count as water- who knew?!) I have started taking vitamins. (A prenatal, vitamin D, and Magnesium- to help combat the anxiety) I am trying to get to bed earlier (cause sleep...duh). And I am washing my face every day (which I have never done in all of my life) Basic huh? A little sad I didn't do any of that stuff before. But I have to start somewhere!<br />
A couple more goals- (Also EXTREMELY basic)<br />
-Go to the dentist every 6 months. Because I pay to have that benefit, so I should use it- also I never EVER EVER want to have to get 5 cavities filled again. (Yes- I had five cavities, cause I rarely go to the dentist and I had to get them filled (while I had two cancer sores) between having the kidney stone, and getting shingles- I'm tellin ya it's been a FUN month!)<br />
-1 day a month get a babysitter and be kidless. And rest, or do something that feels life giving to me!<br />
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Okay I lied. One more thing. If we aren't facebook friends or you haven't seen it yet- go check out <a href="https://www.blogger.com/%3Ciframe%20src=%22https://player.vimeo.com/video/147234376%22%20width=%22500%22%20height=%22281%22%20frameborder=%220%22%20webkitallowfullscreen%20mozallowfullscreen%20allowfullscreen%3E%3C/iframe%3E">this video</a>. Our church gave us the opportunity to tell our story. And the hope that we have in raising a child with special needs. And despite this post being a little gloomy we truly are so blessed and do have so much hope in our lives.<br />
<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-11126931763535939022015-10-29T14:17:00.001-05:002015-10-29T14:24:11.639-05:00Chronic Crisis <div class="MsoNormal">
For the last few months I have been thinking a lot about
being a family that lives in “Chronic Crisis” if you will.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
We all will have “acute crisis” in our lives. You know, an
unexpected illness, hospitalization, job loss, even a baby being born I think can
fall into this category.<span style="mso-spacerun: yes;"> </span>A time
when as a family, or a person you just need a little more support from those
around you.<span style="mso-spacerun: yes;"> </span>But after a few days,
weeks or months things return to normal. </div>
<div class="MsoNormal">
I think as a society we generally are really good at
attending to acute crisis around us.<span style="mso-spacerun: yes;">
</span>We bring meals, send gift cards, offering to babysit, clean, do laundry,
ect.<span style="mso-spacerun: yes;"> </span>It only takes a few
minutes/hours out of our lives and we can see the tangible benefit to those who
need the help. So naturally it makes us feel good to help out! It’s rewarding! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But what about the family that due to any number of reasons
lives in “chronic crisis”? </div>
<div class="MsoNormal">
Four years ago I didn’t even know this was a thing.<span style="mso-spacerun: yes;"> </span>And honestly sometimes I just feel like
a wimp and wonder if I am just making this all up. But I don’t think I am. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We are a special breed- and we need extra help. Always. Now
I am not talking about the level of extra help that those in acute crisis
need.<span style="mso-spacerun: yes;"> </span>But we need something that
is harder I think- we need consistent help for years on end.<span style="mso-spacerun: yes;"> </span>Lets be honest, there is nothing
glamorous about helping this type of family. Its like choosing to loose weight
with diet and exercise (the hard, long way) instead of with a fad diet (the
quick, instant result way). </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Having a child with significant special needs makes our life
look a little different.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
*Routine is important with kids, but when you add a special
need it often is the most important. </div>
<div class="MsoNormal">
*Sleep is rare. And I don’t mean we had to deal with the
infant stage, the cry it out/ not wanting to go to sleep stage, ect. I mean for
years now it is RARE for Dan and I to sleep through the night. We have had
seasons of almost no sleep, but even at its best sleep isn’t a consistent
thing. </div>
<div class="MsoNormal">
*We are always on high alert, and high entertainment duty. Emmaus does not have the ability or attention span to give us 15 minutes of her being content. We are always watching for a seizure, catching her when she stumbles and desperately trying to avoid meltdowns. IT IS EXHAUSTING. </div>
<div class="MsoNormal">
*Do you remember the stage where your kid couldn’t
communicate what they wanted? And they were super frustrated about that? They
would have meltdowns over everything? Yeah- we are there. And have been there
for years now.</div>
<div class="MsoNormal">
*We deal with the normal illnesses kids get, but then on top
of that we are constantly adjusting meds for seizures, and working on the
things kids who develop typically just learn- so we do extra therapies, and
lots of practice. </div>
<div class="MsoNormal">
*We pay our normal bills, then spend time chasing down
medical bills, resubmitting them to insurance, applying for financial assistance
programs when insurance denies things, emailing doctors, therapists, and
pharmacies- because inevitably we are almost out of meds and our shipment
didn’t come….AGAIN. This administrative roll (I jokingly say I am Emmaus' administrative assistant) takes A LOT OF TIME!</div>
<div class="MsoNormal">
*We work extra shifts to cover specialized preschool,
couples counseling or even to pay for a vacation with our spouse. </div>
<div class="MsoNormal">
Let me just speak to vacation (as it is kinda a sensitive
subject for me). Living with chronic extreme stress makes our marriage fragile.
So taking a few days away together isn’t a luxury. It is a necessity. We are
committed to making our marriage work and so having a few days of rest, away
from the stress of it all is important. So if you see us on a couples trip or
family vacation, its not cause that is a luxury to us, its because it is a
necessity. It’s because we realize a few days away, will make all the
difference in our ability to be married and do it well, or to parent well. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So how can you help a family in chronic crisis? <span style="mso-spacerun: yes;"> </span>I asked some families who also have kids
with and live in chronic crisis. Here is what they said when I asked what
they wished people understood/how they could help. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoListParagraph">
<span style="background: #F6F7F8; color: #141823; font-family: Helvetica;">*I find people will often ask how they can help, but I
cannot think of simple way to respond. I would like people to understand,
jumping in by just doing simple things is great- make a meal, offer to be
around to help, clean my house, or if they are brave and capable offering to do
bigger things like watch my kiddos?</span><span style="color: #141823; font-family: Helvetica;"> <span style="background: #F6F7F8;">I have a hard time
knowing what ways to ask for help and I always tend to take everything on
myself even though I am drowning. I think I am so focused on the big crisis I
feel I am wading through I can't see the simple practical ways people could
help me, so I just do it myself. To help me, I need people to be pushy because
I am always 'fine' and don't want to burden people, plus I am honestly blank
when people ask me how they can help. </span></span><span style="font-family: Times; font-size: 10.0pt;"><o:p></o:p></span></div>
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<br /></div>
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<span style="background: #F6F7F8; color: #141823; font-family: Helvetica;">*The biggest realization I wish people would
see is that while we still have our child, the grieving doesn't end, it is like
an ocean. Sometimes we have calm periods, and without explanation, TSC reels
its ugly face reminding us of diagnosis day all over again.<br />
We’ve been most touched by an extended family we didn't even know we had. A
coworker of my husband had been sharing my son’s journey with his church 2
hours away from us. Unbeknownst to us, they held a fund raising at their church
for our family, raising $4,000 in a church congregation of 100</span><span style="font-family: Times; font-size: 10.0pt;"><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Times; font-size: 10.0pt;"><o:p>*</o:p></span>Consider what you realistically can do for our family. And
offer to do it. Consistently. Let us
decide if this thing is helpful to us at this point. If we decline let us know
you love us and want to be a support us. If you think of something else at
another time offer again.</div>
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<span style="font-family: Times; font-size: 10.0pt;"><o:p><br /></o:p></span></div>
<div class="MsoListParagraphCxSpLast">
<span style="background: #F6F7F8; color: #141823; font-family: Helvetica;">*A Lot of states offer respite care- and a lot
don’t or there is a huge waiting list. Ask if the family gets respite care! If
they don’t ask if you could help. Let them go to the store (a task that can be
nearly impossible with a special needs kiddo), do some yard work, go on a date.
Because to just get a babysitter isn’t feasible. We don’t know when a seizure will
start and not end, we have to trust someone capable of giving meds. </span><span style="font-family: Times; font-size: 10.0pt;"><o:p></o:p></span></div>
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<span style="background: #F6F7F8; color: #141823; font-family: Helvetica;">*I have a neighbor that texts me every week asking if I need
anything from the grocery store. </span><span style="font-family: Times; font-size: 10.0pt;"><o:p></o:p></span></div>
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<o:p>Supporting a family, choosing to stand next to them, choosing to help long term isn't for the faint of heart, it isn't easy- and honestly, I don't know that I would be/am any good at it. But it is a pretty amazing gift. And those of us living in need of consistent help are forever indebted, we are amazingly grateful. </o:p></div>
<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com1tag:blogger.com,1999:blog-4762232459222147619.post-66777881241542447642015-10-22T21:12:00.000-05:002015-10-22T21:12:15.073-05:00Survival of viral pneumonia and other thoughts. Today as I arrived at the hospital to pack up miss Emmaus and bring her home after our week long stay for viral pneumonia there was a mom laying in the middle of the parking lot cradling her son. He was obviously delayed, non verbal, a husky seven year old, weighing close to what his mom weighed. She was half trying to get him up, and half patiently waiting, cradling him. As I approached asking if she needed help, she calmly replied "He's just having a seizure. I just have to wait until he comes around and then we can get out of the way."<br />
I sat with her as he became more alert. He looked at me intently and reached out to pat me. I told her he reminded me of my daughter. The mom confided his seizures scare her. I told her I truly understand. It was just a few minutes, but to make a simple connection, in a moment of true helplessness for that mom who was watching her boy battle his own body- for her not to be alone in that moment- isn't that what this life is all about? I found myself asking how do I best support those I live with on a daily basis? For the strangers I meet?<br />
I often wonder what it will be like as Emmaus gets older. Will I be that mom cradling my sweet baby as she has a seizure in the parking lot- other people totally freaked out, and that just being our normal? I sometimes fear her getting big, because I know it will be harder for Dan and I physically. It is one of those things I try not to think about much, because I know I do not have the grace to handle those challenges yet, but will in time.<br />
<br />
This has been a week of us needing help. Lots of help. We have had meals brought, so many people babysitting, people cleaning, grocery shopping. Our tribe stepped up. We were not alone.<br />
Although it wasn't an ideal circumstance both Dan and I reflected on truly getting quality time with Emmaus this week. Since we have three girls we rarely are 1 on 1 with her for extended periods of time and to truly have that time was a blessing. Even though her words are few she has a great sense of humor and I truly think she's funny!<br />
She would request things and then laugh and say "Nooooooo" if it was something she couldn't have. My mom taught her to fake snore- which truly is her making a "shooooooo" sound. And whenever she would lay down to sleep she would look at me out of the corner of her eye and do this.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUrhyphenhyphenebUEtJ9m_JVvW2BT_1uyfgavEBYe6b5Sd8EwtWOvYxLYZUc8gKfwWYrrZx4AGB_G5g3X1Wh7siQXjRr6n8gnFIgGorjXhIosBIIQGtWYuG8erl6R0vGoh1-itY_h8SG_5nYYIwYc/s1600/IMG_5585.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUrhyphenhyphenebUEtJ9m_JVvW2BT_1uyfgavEBYe6b5Sd8EwtWOvYxLYZUc8gKfwWYrrZx4AGB_G5g3X1Wh7siQXjRr6n8gnFIgGorjXhIosBIIQGtWYuG8erl6R0vGoh1-itY_h8SG_5nYYIwYc/s640/IMG_5585.JPG" width="640" /></a><br />
This week thanks to our amazing support we truly smoothly sailed through the challenges of having an infant, a two year old and then Emmaus in the hospital. It wasn't easy, and my mommy heart was definitely pulled in three as I felt each girl needed me in their own way. (Some being more vocal about their needs than others!) But we survived and I am so thankful that tonight we are all under the same roof.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT6SfRlBgKOk7jbkvNEHoCuP0DeDilw32jAZuFW6h77jboLGGL2rPFIQaigfXSTyxndU90Fqqug-GYFqAo7lrla-fWqHdi2SQ8By1k69v1M-1Z-yHjs1kN-xzGLCBy2_eVjOv_ckfvl1o/s1600/IMG_5573.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT6SfRlBgKOk7jbkvNEHoCuP0DeDilw32jAZuFW6h77jboLGGL2rPFIQaigfXSTyxndU90Fqqug-GYFqAo7lrla-fWqHdi2SQ8By1k69v1M-1Z-yHjs1kN-xzGLCBy2_eVjOv_ckfvl1o/s640/IMG_5573.jpg" width="426" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUrhyphenhyphenebUEtJ9m_JVvW2BT_1uyfgavEBYe6b5Sd8EwtWOvYxLYZUc8gKfwWYrrZx4AGB_G5g3X1Wh7siQXjRr6n8gnFIgGorjXhIosBIIQGtWYuG8erl6R0vGoh1-itY_h8SG_5nYYIwYc/s1600/IMG_5585.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvYE_Xgao-rj66AfAoDMVg6q13I6aTsxXbMEotLufhxxPQgP5MRu2dsJacFCktkSA5MYDnwaKBr5prYOSgrDIiM9gG6xJz7qCKuHUfO_wsWEJ3KmYGORE_6tIH0pfL87SmpqnKlZBV5Qo/s1600/IMG_5578.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvYE_Xgao-rj66AfAoDMVg6q13I6aTsxXbMEotLufhxxPQgP5MRu2dsJacFCktkSA5MYDnwaKBr5prYOSgrDIiM9gG6xJz7qCKuHUfO_wsWEJ3KmYGORE_6tIH0pfL87SmpqnKlZBV5Qo/s640/IMG_5578.JPG" width="640" /></a></div>
<br />
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com1tag:blogger.com,1999:blog-4762232459222147619.post-41799020383350361942015-09-27T22:59:00.000-05:002015-09-27T22:59:09.065-05:00Back to work I go!<div class="MsoNormal">
I have no idea how eight weeks have passed since Lennon
arrived.<span style="mso-spacerun: yes;"> </span>I officially start back
to work tomorrow and I would be lying if I said I wasn’t a little sad about
it.<span style="mso-spacerun: yes;"> </span>This is the first time I am
returning to work after having a baby and am truly excited about my job, and
not longing to stay home like I have after the last two babies. But it is still
bitter sweet. </div>
<div class="MsoNormal">
I know I am entering a season of work, where the wide open
space in our schedule that came with me being on maternity leave will
disappear.<span style="mso-spacerun: yes;"> </span>I will be forced to
buckle down, be super organized and our schedule will have to be as planned as
ever to pull off having three very young children, two different work
schedules, Emmaus’ school and therapy schedule, meals to plan, not to mention
church and social schedules. <span style="mso-spacerun: yes;"> </span>I am
excited about the opportunity to meet some of the financial goals we have set
for ourselves. To get back on our feet a little after a self-funded maternity
leave. All while doing a job that I am really loving! </div>
<div class="MsoNormal">
I know I/We can do it. But there is a little fear that this
transition from 2-3 that has gone so smoothly is about to get hectic, and
hard.<span style="mso-spacerun: yes;"> </span>I know my capacity to handle
things gracefully will get thinner just because I will be working.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
Last year Dan and I had one of the harder years of our
marriage. We went to A LOT of counseling to get things figured out, to learn to
communicate again, to grieve the loss of a typical life- the type of life we
had planned before Tuberous Sclerosis became part of our reality.<span style="mso-spacerun: yes;"> </span>And I am just kinda fearful that things
will get shaky and unstable again. <span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
I think even being aware of these fears is good.<span style="mso-spacerun: yes;"> </span>Finding ways to safeguard against them,
ways to plan a head and take some of the stress off of things when I can-
simply by not waiting till the last minute to get things done. </div>
<div class="MsoNormal">
<o:p> </o:p>Planning ahead doesn’t come naturally to me. So here goes
nothing!</div>
<div class="MsoNormal">
But, seriously. 8 weeks already? <span style="mso-spacerun: yes;"> </span>How is that possible? Please slow your roll baby girl. Things are going by too quickly! </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv3RtgICDtEpYsfVUNSzi-1f91Wcid7dILUPmx0whJwBg5whv5aKbVClffwdzjUsjDc0jYZpo_VDUoBTohEezi84YU9U8Vpd2qbSciWbew4811ev6RDx-tZequsiiGULw0nLrAQXC3y-4/s1600/12039460_10102570957637251_2407965482550768994_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv3RtgICDtEpYsfVUNSzi-1f91Wcid7dILUPmx0whJwBg5whv5aKbVClffwdzjUsjDc0jYZpo_VDUoBTohEezi84YU9U8Vpd2qbSciWbew4811ev6RDx-tZequsiiGULw0nLrAQXC3y-4/s320/12039460_10102570957637251_2407965482550768994_n.jpg" width="320" /></a></div>
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<br />
<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-76106737234969665302015-09-11T13:18:00.004-05:002015-09-11T13:26:40.460-05:00Lennon Jean: A Birth StoryLennon. From the start you were a surprise. You were outside of our timeline- but in God's perfect way, your existence, your entrance was just as it was meant to be. This is the story of your birth.<br />
<br />
Pregnancy number three. This was a hard one for me. I wasn't in the best shape at the beginning, I wasn't planning on adding a new member to our family so both physically and emotionally this pregnancy was hard. Your body naturally remembers pregnancy oh so well. So with each life growing, your body is a little more stretched, your muscles a little less strong and this was no different. I slept amazing this pregnancy. The whole time. And that may have kept me sane.<br />
Mentally I didn't really let it settle in that we were going to have a new baby until about mid June soooo around 34 weeks? We had some pretty intense stuff happening in our lives, job change, insurance change, autism diagnosis, large medical cost, new school and therapy regiment for Emmaus, and I just couldn't deal with pregnancy too- so once all of that was settled I let it sink in that in a few short (except for the last 9 days) weeks I would welcome a new little one.<br />
<br />
I had gone 9 days late with Shiloh and it was pretty mentally hard for me. So this time I was determined to make the best of things even if I was late. And for the most part I think I took the waiting in stride. But waiting is hard. Always.<br />
<br />
I had a few days where I thought I was in labor, in fact enough of them that I was beginning to feel like the woman who cried labor. I mean this WAS my THIRD baby, and I had waited for labor each time, so you would think I would know what was fake vs real... but no. More than once I got everyone excited for nothing. I had a feeling it would be a fast labor so the last few weeks I wasn't super willing to be far from home. I just knew I would need to be close to the birth center when things picked up.<br />
<br />
August 3 (9days overdue) I was showing more signs that maybe this would be the day. When I would have contractions- which wasn't very often they were hard and hurt, which was a change from the previous days.<br />
By the evening I decided to go ahead and get checked, I still wasn't having super consistent contractions, maybe every 20 minutes, but they hurt. I just truly wanted to make sure I wasn't 8cm or something, really just wanted to gauge how quickly I needed to get to the birth center after things picked up. I was a "stretchy" 5 but baby wasn't super low. I had been a 4-5 at 39weeks.<br />
<br />
At 850 dan put the kids to bed and I was laying on the couch thinking "THESE CONTRACTIONS ARE SPACING OUT!! THIS BABY WILL NEVER COME." I was wondering if we should go walk up and down our street to see if I could get them going or if I should just go to bed.<br />
Dan came and sat with me on the couch, and put his hand on my belly. We chatted for a minute about how much she was moving, I wondered if she would be our last, if these movements of a baby in my belly would be some of our last to experience together. Then she really MOVED. I think the word is engaged. I had a hard contraction. Decided to get up and go to the bathroom- which was difficult, and by the time I stood I had another hard contraction. After it passed I walked the 20 feet to the bathroom and was dry heaving by the time I got there, shaking, my teeth chattering, and I had another contraction. My labor literally went from "is this peetering out" to "woah, I'm in transition". Dan's mom was called, our midwife (who was at home 25+ minutes from the birth center) and our dear photographer- all of which jumped into action to get where they needed to be so this baby could come.<br />
I had been praying for time, for time in labor, to adjust, to have the communion with the Lord that I have experienced the last two times. That it wouldn't go so fast that I couldn't cope. My labors in the past have been very peaceful. They truly are some of the most beautiful experiences of my life. So I really wanted to have a similar experience this time as well.<br />
We got to the birth center before the midwife and waited in the parking lot.<br />
I had texted her at 9:15 while we were driving to the birth center requesting she drive fast.<br />
I had lost the feeling in my hands at some point on the way to the birth center. I could fist my hands, but not relax them, they were totally numb, and so was part of my face. This of course freaked me out. I mentally did an assessment on myself (Yes I am a nurse even in labor). And of course told Dan if I passed out to call 911- I'm sure thats exactly what he wanted to hear while we are alone with our photographer in the parking lot- (Although I'm thinking okay- at least he isn't truly alone if I do pass out!)<br />
Assessment-<br />
Okay, I can feel my feet, my contractions, my hands and arms are numb, but I still have some strength in them, my blood pressure doesn't feel high. I feel calm and not panicked, so this isn't anxiety related.... I don't think I'm having a seizures or a stroke, I feel really mentally sharp, surely in these situations I wouldn't feel mentally sharp? (Yes hilarious I know)<br />
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The midwife arrived and we got into the birth room at 9:38. I hollered for them to start the tub as we were walking back. (I'm bossy what can I say).<br />
I pretty quickly got in the tub, had a few contractions, listened to some worship songs. Around 10 I asked dan what time it was- I felt it was going so fast. It was, but my timeline was off so it calmed me down thinking I had been there longer than I truly had. At 1011 my water broke, and immediately the sensation in my hands and face returned. I guess the pressure from my amniotic sac was compressing something in my spine? The midwife checked me I was at 8cm. But felt like I needed to push.<br />
A few minutes later I started pushing and two or three pushes later her head was out. (If you are into natural birth and ever get the chance I highly suggest a water birth- SOOO much gentler than a land birth- sorry for those of you who are reading this thinking TMI- you may want to skip the next few lines)<br />
Head was born no problem, and then the midwife had a little trouble delivering her shoulders and I couldn't move enough in the tub to help- so I "hauled ass" as I like to say- out of the tub so I could get into a better position for her to be delivered. Her shoulders were very easily born after I moved. I know it sounds a bit chaotic, but it truly was a beautiful birth.<br />
Lennon Jean Ballew<br />
Aug 3, 2015<br />
10:22pm<br />
8lbs 8oz, 21.25 inches long 14" head<br />
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(A whopping 1hour 32mins from "Is this actually labor to birth" )<br />
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She is a relaxed little one. She is by far my easiest and most content baby. I will be interested to see how this plays out in her little personality. She has been a seamless addition to our family, so far a much easier adjustment than when we went from 1 to 2. Her sisters are in love. We are in love. Mothering her feels so natural to me.<br />
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I don't have enough space on our old ghetto computer to download the birth pics and post them on here, but if you are interested I am linking to the incredible video and photos that were done by <a href="http://allisoncorrin.com/">Allison Corrin Photography. </a> This is the second birth she has captured for us, the images are beyond beautiful and priceless to us.<br />
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<a href="http://allisoncorrin.com/birth/dan-laurisa-the-arrival-of-lennon-jean-kansas-city-birth-photographer/">Link to her blog with the photos</a><br />
<a href="https://vimeo.com/135453554">Link to the amazing video she put together</a><br />
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-12157678428597825412015-06-07T22:44:00.000-05:002015-06-07T22:44:08.026-05:00A few thoughts about vulnerability and needing help. We had some friends over this evening and were talking about vulnerability. Being vulnerable, needing help is often seen as weakness. How many of us are guilty of running to the grocery store when we need an egg, a tsp of vanilla or some other ingredient mid-batch of cookies instead of asking a neighbor for help.<br />
Dan and I were both raised to be fiercely independent. We learned early to take care of ourselves- (Not that we didn't have parents also taking care of us, we did, but we also had parents who valued raising independent children). To work hard, and honestly, it is very humbling to need and ask for help. <br />
I remember when Emmaus was pretty little feeling super overwhelmed. How could I manage to work, care for her and meet her medical, developmental needs, and manage all of the doctors, insurance info, ect. A friend who is the mom of 8 came along side me and told me mothering even one is hard (THIS IS A WOMAN WHO HAS 8 KIDS!!) and that its okay to need help. I remember feeling so relieved that it was okay to need help. So my long journey to break my pride started and the first little bit fell away.<br />
I don't see it as weakness when other people need help. In fact I love to help people. I am a fixer, a do-er. Yet, in myself, for our family I struggle with it. I kinda laugh now thinking about that time. And have all sorts of grace for myself! Of course I was overwhelmed! I had a new baby with a medical complexity who was ALWAYS seizing. She rarely slept between eating at night and seizing. I had never been a mom before, which is a hard transition anyway, and we were pretty financially stressed. In that time we had to buy a new car and we moved. UMMMMMMM sounds like a lot to me!<br />
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So much has changed since I wrote my last blog. Honestly- it has been a head spinning few days.<br />
So here is what's happening. We found out that the school Emmaus went to from age 2-3 has an opening. (She still goes to therapies there once a week) We didn't love the public preschool she attended last year- although it was free, so that was a perk! However, they do not use ABA therapy so we would have to do both public preschool and the in-home ABA for next year. Which, is just a lot for a 4 year old!<br />
So we are planning to send her back to her the first developmental preschool she attended 3 days a week in which she will receive ABA, PT, OT & Speech all integrated into her preschool day.<br />
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We still are having to make some major changes. I will start working more hours so we can pick up insurance through my work. This is okay. It's not ideal while adding baby #3 and adjusting to that, however, it will provide us with a sustainable way to provide for Emmaus' therapy needs. My bosses at work are basically amazing and are working with me to make this happen before baby.<br />
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So instead of looking at a 12,000-15,000 cost for ABA therapy through October. We are now looking at about that for a year! It still is a lot of money, but much less than we originally were looking at.<br />
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Some friends of ours have set up a Go-fund-Me account to help us off set these costs. Again- we are learning to chip away at our pride and be grateful for the help. And be grateful for the opportunity to learn to ask for help, and accept it.<br />
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Sometimes I look at where we are in life. How different parenthood is than I imagined. The challenges, sorrow, loss and joy I have learned in being Emmaus' mom. It is all so different from what I imagined. So much harder- but better. I am better because of her. Being Emmaus' mom has made me very weak, it has taken a lot of help, (And she's not even 4!) but the community we have gained along the way, the humility we have learned in accepting help, and the joy we now have to be able to give to others when we can is pretty cool.<br />
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Here is the<a href="http://www.gofundme.com/w8wwbg"> link to the go fund me site</a>. Don't feel like you have to give. We feel very supported either way and know the money will work out. It always has before and we have faith that this time will be no different. Thank you in advance to those that can/want to give. We are very grateful.<br />
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0tag:blogger.com,1999:blog-4762232459222147619.post-50618851908762692682015-05-24T00:43:00.001-05:002015-05-24T00:43:23.884-05:00Where we are, and what the plan is...Earlier this month Emmaus was diagnosed with autism. Tuberous sclerosis is the leading genetic cause of autism, so we have known from the start autism was a possibility. However, Emmaus has always been pretty social so I haven't really thought much about it. In the last six months we have become more concerned about some of her behaviors. She has become much more stressed in social situations and when we try to take her out of her regular routine. She also has developed a lot of repetitive behaviors. Luckily she has remained an excellent snuggler and truly loves being with people, she just often has a hard time knowing how to engage with them- especially with peers.<br />
We booked an appointment with our local children's hospital to have her evaluated and without a hesitation they said she has autism.<br />
I knew the diagnosis was coming, but was kind of surprised by how hard I took it. When your child has a incurable genetic disease there is a lot of rolling with the punches. As parents it is our job to protect our children, to "make things all better", to educate them, love them, teach them to become independent. And with TS so many things I cannot make better, I cannot heal her. I cannot stop the seizures from coming, or the tumors from growing. I cannot figure out what is wrong in the middle of the night because she can't tell me why she is crying. However- I felt we were being intentional about her education, her therapies. And then when you find out actually this whole time we haven't been speaking her education language. So not only does she have a developmental delay, but we have been educating her in the wrong language? Yeah. That didn't sit well with this pregnant mama.<br />
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The recommended therapy for Emmaus is "Intensive ABA therapy". It is a therapy that has been proven to improve the social, functional and educational abilities of those with Autism. It is their language so to speak.<br />
The great news is that there has been a huge push for insurances to cover ABA therapy. It is even government mandated in many instances. So I felt hopeful we would easily be able to get her the therapy she needs. <br />
However- the insurance we have does not have to comply with this rule for a few reasons. I kinda feel bad for the sweet lady who had to tell me that on the phone when I called to check our benefits- cause I lost it. Full out 30+ week pregnant woman sobs. <br />
We have done a lot of research on therapies. And have found a wonderful in-home therapy group. This group will address her speech and fine motor needs in an ABA approach and work with her (And us) to teach appropriate social skills, to educate her in a way to improve her independence, language, ect.<br />
This therapy isn't cheap. The recommendation for Emmaus is a minimum of 10 hours per week. 2hrs per day. We are hoping to start with 6 hours per week through the summer plus a 3 hour per week social skills play group. Which will run about $2,500 per month for June and July. Then when school starts back up in August we will just do the in home hours. Starting in October when I go back to work after baby- the hope is that I can receive benefits through my work for our family since they cover this therapy.<br />
I am not even stressed about the finances of all of this. 2000-2500/month? It's literally laughable. Because honestly- we are so far away from being able to afford this each month.<br />
We have prayed a good amount about this whole things and feel peace in moving forward. We will be applying for several grants to help lower the cost. And literally the day after we decided to move forward a friend called with TWO $500 checks towards Emmaus' therapy. If you are reading this and feel compelled to host some sort of therapy fundraiser for miss Emmaus let me know. We would welcome that. We are open to ideas and options to get this funded through September. <br />
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Dan and I are both really glad we can work hard and provide for our family. We have had some very generous help along our journey so far, don't get me wrong. But mostly we can work hard, provide for our girls even with the medical expenses and we do okay! But this- we cannot do alone. If timing for all of this was different, maybe I could increase work ours now, switch insurances now, ect. But this just can't happen till after I am done with maternity leave. So I am excited to see God work. To see funds come in, therapies happening and growth for Emmaus!<br />
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<a href="http://s896.photobucket.com/albums/ac161/nutty97/Blog%20designs/?action=view&current=signature-1.png" target="_blank"><img alt="Photobucket" border="0" src="http://i896.photobucket.com/albums/ac161/nutty97/Blog%20designs/signature-1.png" /></a>LAhttp://www.blogger.com/profile/16817313972251034539noreply@blogger.com0