Thursday, August 29, 2013

Where we are with TS

A little about our current reality with TS- the stuff I don't blog about much-because its ugly and hard.

Today as I drove home with both girls in the car Emmaus got upset. I really have no idea about what. One minute she was happy and smiling and the next minute she is freaking out.
When I say freaking out I mean beating herself in the head (no- not patting her head, but literally beating her head with her hands or fists) pulling out her hair- (she literally has a bald-ish spot on her right side because she does this when she is upset) and then biting her arm. She BIT HER OWN ARM FOR A MINUTE STRAIGHT- I was afraid she was going to break the skin!
All the while I am nicely asking her to stop- asking her what is wrong, trying to appease her with her favorite music- and praying to the Lord that she would stop. Stop because my heart is slowly breaking as I watch her physically hurt herself because she is upset.
She has few words. And none to express frustration. And her mind doesn't handle being upset like the average two year olds does.
ALL BECAUSE OF TS

Since her surgery I tend to say "She is doing SO well" when people ask how she is. Because truth be told she is! She is developing! She isn't seizing multiple times a day-heck she isn't seizing multiple times a week. She is walking around furniture, she is walking if you hold her hands- and while I think it will be a bit before she walks on her own- she is progressing!
WE ARE SO PROUD OF HER.

Sleep is still a challenge. Thankfully due to a stricter routine she is napping better- nights are still a crap shoot. Bedtime itself is much better- but rarely does the girl sleep through the night. A few times a month she blesses us by sleeping all night. And then a few times a month she blesses us by EXTRA quality time and stays up all night long.

Generally we feel like our lives are kinda normal. But then there are times when we notice she doesn't play with her peers the way she should. When we wonder how much she understands when we talk to her. When she hurts herself while I am driving and I am unable to intervene, that we realize we are still in a battle with Tuberous Sclerosis.
It didn't end with brain surgery.
Brain surgery wasn't curative medicine. It was palliative medicine.
(Palliative- to reduce the severity or symptoms of a disease)
There is no cure yet for TS.
Which is a harsh reality for me.

We are thankful for our sweet girl. For the unconditional love and wet kisses she has given to her sister. For her snuggles-I seriously watched her crawl onto the lap and snuggle another mom she has met twice today! She is a love bug.

But we know TS is still with our sweet girl. So while we say "She is doing really well" cause she is- we say that meaning- in the scope of having a disease without a cure "she is doing really well".

We have a long road to go. But it is a blessed road to walk with a sweet girl.
Our TS walk in in two weeks. Would you consider donating to help us move forward with research to find a CURE for this disease? A cure for Emmaus.

HERE  is my fundraising page for the TS walk. I am way short of my goal- cause I kinda just had a baby and made my already crazy life a bit more CRAZY- so I slacked on the walk fundraising this year. Any donations would be GREATLY appreciated!

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Tuesday, August 27, 2013

Little babies

I had the realization today that I have TWO very young children. I know technically they are two years apart- which is pretty normal spacing- but in reality they are like 16 months apart? Less in many aspects?! I don't know how "old" Emmaus truly is developmentally.
But I had this realization while holding a crying 2 year old, and making "goals" with her occupational therapist at school and then realizing my newborn is screaming bloody murder two feet away and I had failed to notice- and then I found myself holding both, able to comfort neither- and the OT shifting the attention to me and saying "I have no idea how you are managing". YEAH. Me either- but you win some you lose some- and she caught me in a losing moment - ALTHOUGH- to my defense we did get to school on time- Hell I managed to enroll the kid in school. I WIN.
Although she did look like this with her mini cheerio beard when we got to school. Let me tell you- stick with plain cheerios! Honey nut are like little self adhesive O's and get stuck EVERYWHERE!!
I may be pondering my small children too much- because I definitely left our van door open today while I stopped into work. Just forgot to close it. You know what a task it is to close those  automatic closing doors! 

Everyday when I get Emmaus from school they tell me how great she slept! Today she slept a whopping TWO hours! ummmm I don't rememeber the last time she napped that long!! 
Oh- thats right- cause it was NEVER. (fine rarely)
Most of her naps occur in the care and then I hang out till she wakes up. 
(Which I always thought was STUPID- but really- I get to sit there in silence and read, or play on my phone- WITHOUT getting whined at because the toddler wants my phone) 
I win again!
 Shiloh may have developed baby acne- due to her daily "face lickings" (kisses) from Emmaus. I probably should wash the poor kids face daily- poor second baby. She probably needs a bath- considering I don't remember when her last one was. 
 Tonight we had an impromptu dinner with some good friends. Well it was Brinner (breakfast for dinner).  And then an impromptu dance party afterwards. We are trying to be more intentional about living and sharing our lives with others. Whether that be dinner- or just time spent together. But to live in REAL community with others- not just cyber community! 


 And I will leave you with this. A true pic of my current reality. Nursing one baby- snugging the slightly bigger baby. I don't know how I am doing it- but I (we) are. And yes my hands are full, but so is my heart. And yes I freak out occasionally with everyone needing me. (And touching me- I am just not a huge physical touch person). But I wouldn't have it any other way. 


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Friday, August 23, 2013

A word about timing

I don't know if you all remember this one time- about two weeks ago where all my FB status' and instagram picture were of me being really frustrated that I was still pregnant?

ohhh... you recall that starting almost 4 weeks ago?! Yeah- okay so I didn't handle the end of pregnancy the most gracefully.

But luckily the Lord had grace for my impatience.
In fact- like always his timing for Shiloh's arrival was incredible.

Last summer we visited our family in Maine. And during that time Dan and I had a very hard conversation about planning our family- and decided to wait a few years to try to get pregnant again.
At the time Emmaus was not doing very well. She was seizing a lot and extremely behind developmentally- and falling further behind every day.
I have always wanted a big family and kids close together in age. So us deciding to wait, made me a very heart broken mama.

Then out of no where (despite the use of protection) we got pregnant the next month. I was shocked. I was afraid Dan would be mad- but of course he wasn't. He was just as excited as me. He is a good man like that.
I carried that sweet babe for 7 weeks and then miscarried. I was devastated. Not because of the miscarriage itself. I understand that miscarriages happen- but just the loss of hope. I felt that when I became pregnant unexpectedly it was the Lord saying "Laurisa- I know the desires of your heart, and I have given this baby to you as a gift" And then just like that- this hope, this gift was gone.

I knew Shiloh's birth would be redemptive. It would be a celebration of a healthy baby. A birth free from the fear of TS, the fear of the unknown that comes with knowing your baby has a major medical battle ahead of her.
Even the fact we had a girl was redemptive to me. Healing. I was so thankful that Emmaus would have a sister.

When I filled out the birth certificate for Shiloh. One of the questions was "date of last other outcome" meaning a miscarriage. So I started thinking that it was in August of last year- and probably that same week she was born. And sure enough when I looked it up- I started miscarrying on August 7.
Exactly a year before our sweet Shiloh arrived.

I love how God's faithfulness works in my life. How his timing is perfect. How he makes ALL things NEW.
Shiloh means Abundant Peace- Elizabeth Means "My God is bountiful, oath of God/ Fullness of God"

I think that is exactly right. This baby is such a blessing. The Lord is Good- he is bountiful and full.

Faithful. Redemptive. He has not forgotten the cry of my heart. The hard things, the burdens and pains, and he does make those things right.
The Blessing of a healthy little girl. And given to us 9 days late- but on a specific date- to remind me of the Lord's goodness.
Incredible.
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Tuesday, August 20, 2013

DOS

Lots of people have been inquiring how we are adjusting- so here it is.
Emmaus is in the middle of a developmental spurt at the moment- which is both exciting and exhausting. She has new opinions, but isn't able to communicate them well- so gets frustrated easily, she has taken to climbing EVERYTHING. And since she is not the most stable child- and cannot easily get out of these high spaces- I cannot have her out of my sight- OR I may find her standing on a chair at the stove trying to turn it on, scaling the stairs/railing-hanging off at a 45 degree angle -sitting on our side tables- hanging off the side of the couch-standing on her toy chest.
You get my point. She is brave.
LESS CLIMBING MORE WALKING CHILD!

Emmaus is SO sweet with her sister. 

She loves to kiss her- and initiates this on her own. (Kiss = lick). She loves to be near her. When we burp Shiloh, Emmaus likes to help and pats her back along with us. She loves to stroke her head, and just be near her. She "talks" to her in the sweetest voice- her tone gets lower, and she gets quieter. It is truly such a fun thing to watch.
One funny thing- is when Shiloh starts crying Emmaus thinks it is funny. She laughs with this ridiculously low toned slow laugh. It's a chuckle really. And its hilarious.

Here is a great picture of my daily life. 
 Having both of them by myself has been interesting- I thought I would be more overwhelmed, but it is going pretty well. Yesterday we even made it to the doctor for a quick visit by myself! Emmaus having school twice a week has been a blessing! It is nice to know after a busy day with both of them the next day is a school day and I will only have one.

Shiloh- She is pretty much an incredibly easy baby so far. She is an awesome nurser. And not having to worry about her weight (like we did with Emmaus) has been AWESOME! Since her first night home she has consistently slept 4-5 hours in a row at night. UMMMM I am not sure how I won the sleeping lottery with this child- but WOWZA- it's a blessing. (Emmaus hasn't slept a solid night since Shiloh was born- but what else is new!?)

So far we are just enjoying our new life. Enjoying sweet Shiloh- and getting to watch Emmaus love her so well.
I feel that I have gained a new amount of patience- because I only have two hands and cannot feed a baby and help my toddler at the same time. I am learning grace for my own capacity- and patience for Emmaus' capacity to handle things. I am learning to calmly explain to Emmaus why she has to wait- and understanding her lack in ability to communicate brings on whining, and grumpiness.
And most importantly I am learning when to just call it quits and head home, change activities, give up on a battle.

Yesterday I started working on taking care of myself too.  Here were my key actions
-Eat more than a bite of your toddlers mac & cheese and a few bites of dinner (LIKE SOME PROTEIN)
-Drink more water than other liquids
-Remember that coca-cola isn't a food group.
-Sit down, lift the toddler as little as possible

Lots of learning. Lots of loving.

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Thursday, August 15, 2013

HATE & BEAUTY

I cannot stand it anymore. 
The hate. The bullying. The corruption of sweet little minds
-even if unknowingly. 
Teaching our young to hate, to bully. 
If we treated others like we treat ourselves Ellen would do a huge campaign against it. It would be trending news, and no one would put up with it. 

During this pregnancy I got some stretch marks- I had two from my pregnancy with Emmaus and this time I added several more. And when they first started to appear I was so mad. I was angry with myself for starting this pregnancy heavier (I mean the bottle of wine I shared with my husband every night pre-brain surgery may have contributed) but still stress or no stress I should have been thinner, weighed less, been in better shape. So I was mad- at myself. Some phrases like "my body is ruined" or "sorry babe- my tummy is gonna look all jacked up now"or "I hate my body" may have escaped my mouth.  Never did I give myself an ounce of grace. 

I have always been a self hater- all my friends are self haters (mostly), my mom, my grandma. Pretty much most women I know hate themselves- or at least their appearance. 
We diet, we work out like crazy, and yet still at our most fit-we pinch the skin that is on our hips and scream about how "fat we are". We look at the laugh lines on our faces and see wrinkles (yes I know I am 27-but they are there). 
And don't get me started about how we feel about changing bodies during pregnancy and shortly there after! 

Well one night during my last trimester I was completely humbled by this obsession. By this self hate. 

I got to thinking about my precious daughter. How lovely she is. How God made her so beautifully. And how I want her to know her beauty- and I don't want her to hate herself too.  Her disease causes lots of skin abnormalities. She has spots that are a little raised and bumpy, she has area's of hypo-pigmentation, and she has the potential to get several other skin complications. But I never want her to think she is not lovely, not beautiful because of these things. 

Yet I think the "abnormal" markings on my skin- the very thing that let my body change and grow to house my beautiful girls- are horrible, ugly, and unacceptable.

So what message am I truly sending her?

So I say enough. 
My body is incredible. It has helped create, grow, sustain, and nourish two children. It was beautiful before I had babies too- even if I wasn't the "perfect hollywood size" or I am short. 

I refuse to hate myself any longer. 
Simply because I refuse to set that example for my daughters. 

All my "self hating" friends were damaged by having idealistic expectations put on them- whether by themselves and the media, or many by their mothers- and not always intentionally by their mothers- but if your mom hates XY&Z about herself- and you grow up knowing you have your mom's chin, her torso, and her calves-then you will learn to hate those things too. 

How do we make a cultural change for our children? I think we have to start with ourselves. We have to get comfortable with our selves. We have to see our own beauty. We need to be healthy, but not only physically healthy- mentally healthy. 

So I am continuing this journey I started a few months ago. 
To teach my daughters how beautiful they are- to be comfortable with myself first- so they can learn to be comfortable with themselves. 
So my sons (future ones of course) can learn that a beauty is not just in a woman's appearance. 

I know I am not alone in this self hate- or the desire to break this cycle- to give my daughters the gift of truly knowing they are beautiful

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Wednesday, August 14, 2013

Shiloh

It's been a week- and I have written this blog about 100 times in my head, played over the details, trying to decide if I should let the pictures speak? Or spill every detail. So instead of planning- I will just write.

First let me say- the photo credit for the birth goes to Allison Corrin Photography. She did an incredible job-and if you at all are thinking about doing birth photography- I would highly encourage it and encourage you to use Allison. She did an incredible job! Check out her business page HERE. 

I had a hunch about 3pm that baby may make an appearance that night. I had publicly scolded my uterus on facebook earlier that day-and apparently it listened. I had a few errands to run and since neither Emmaus and I were able to nap- we went ahead and did those. I called my midwife to give her a heads up. When dan got off work I let him know I thought baby would arrive that night, we went on a walk when he got home and my contractions picked up. I made a call to the midwife again, saying yes, things were picking up. About 7pm I decided I wanted to go to the birth center to be evaluated. My mother in law arrived at our house about an hour later to watch Emmaus and Dan and I headed to the birth center. My cervix had changed, I was now 5cm dialated (I had been 4cm at my last appointment) and progress was being made so we stayed at the birth center to labor.

As the evening went on things progressed. 
Natural Birth is not about "staying in control" 
It is about letting go of it. 
About relaxing, about letting your body do what it is so incredibly capable of doing. 
It is about saying no to fear, and learning one contraction at a time to make peace with the journey you are on. 
I was surrounded by love. 
By my mom, and closest friend. 
By women who love birth, who daily help women become mothers in the most incredible setting. 
By my husband who never stopped praying, encouraging, or holding my hand. 
Who with me was most excited to meet our new little love. 
Many prayers escaped my lips. Pleading for help, giving thanks for the miracle of a healthy baby. I have learned in the last few months that choosing thankfulness even in the pain helps make the road more clear. 
(At one point I may have snapped and yelled about "people leaning on the bed"-just to show the other half of the picture)
And then very quickly -our little love arrived. 
8/7/13 12:26am
So anticipated. So wanted. Finally with us. 
And Born En Caul- Our Blessed, Lucky, baby.
(Although I think I am the lucky one)
Relieved to not be in labor anymore, and excited his baby was here....We both forgot- then after several minutes I remembered- We did not know if we had a daughter or a son. 
A little girl. Dan new it all along. I was surprised, and elated. 
A sister for our Emmaus. 
An unspoken desire of my heart. 
Two girls to giggle, to learn and grow together. 
Shiloh Elizabeth
8lbs 10oz
21 inches

And then when the sun came up, and the two year old with it- 
we headed home for the sweetest of meetings. 
Only gentle touches. And a couple un-captured smooches 
Sisters.

This labor was different than Emmaus'. It was faster, and harder, and while with her I had time to adjust to each new phase- this one quickly evolved-it was more intense. It was redemptive to have a birth were the NICU was uninvolved and fear of the unknown was absent. To get to completely celebrate a new baby and not have to celebrate a baby while mourning the presence of a disease.

She is loved & we are lucky she is ours.

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Monday, August 5, 2013

41 weeks

How I got here.... I do not know. 
41 weeks. 
That is 14 days later than Emmaus came. 
(Bless that child)
I haven't had the best attitude.
-Like this one time when I cried for like an hour cause I couldn't find a shirt I wanted to wear-
(and maybe yelled at my toddler- humbling to ask your two year old to forgive you)
-Or this other time (from week 39-40) when I was so grumpy all week because I didn't have a baby-
-Or this one time I was literally angry at my poor unborn because of their presence in my uterus-

But I feel like I may have turned a corner. 
You see- I am learning patience. Learning contentment. 
I am learning I cannot control things, and the disappointment that I have when "my plan fails" is purely due to my unrealistic-or uncontrollable expectations I have set on myself. (or my unborn/uterus)

Funny thing- is this lack of control of the "uncontrollable" things in my life should be easy right?!
I mean- my toddler has a random genetic disease, has had brain surgery, countless seizures, ailments, ect ect. 
And yet- I am STILL a control FREAK. 
It seems the Lord is being faithful to me and helping me work through that. (again)


It is a little awesome to tell people at the store or wherever that I WAS due last week. They are all shocked and flustered and suddenly fear a baby's head popping out from between my legs. 
They look at me like WHY would you go that late- won't they induce you?

I just wanted to say a little about that.
If you have read for long- or know me at all- you know I am very pro-natural birth. I seriously was blessed to have an incredible natural labor with Emmaus despite the concern for her health.  It seriously was one of the most sacred times in my life. To have to die to myself, trust the Lord with every single contraction, and let my body do it's work- seriously changed me. It was the most holy communion I have ever had with Jesus. And I cannot wait to do that again.
This week will hold some interventions to get baby out if baby doesn't come soon. I thought about doing castor oil today but, decided it wasn't time yet for intervention, and I would rather wait a couple more days to see if labor sets in and enjoy my days with Emmaus.
My body is making change. I am 4cm dilated. Baby- just needs to be more fully engaged in my pelvis.
I am confident this baby will come. I trust the Lord to provide safety for me and this babe. And I am so excited to meet him or her!

Also a small shout out to my husband. He is seriously incredible. If you have met him you know this- but for the rest of you- He is an incredible husband like INCREDIBLE. He loves me so well. He is patient, he is extremely self-less and incredibly forgiving.
(And his incredible ability to be a completely engaged and present father makes his husbanding look poor- cause he is just that incredible of a dad)
I clearly married up.
In the last weeks he has been so patient and supportive. He has slept on the couch so I can hog the whole bed, been on daddy duty most moments he is home so I can have a break/nap/be extremely pregnant.
You are a good man babe. Thanks.

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Thursday, August 1, 2013

Waiting- and the poopy day.

So while I wish I was posting a blog about our sweet new addition- Instead I will tell you an awesome tale of one of the craziest mornings we have had lately.
So This is VBS week- which is a blessed event that for years to come I am sure I will look forward to! 5 straight mornings of my child being gone in the summer- and to learn about Jesus, sing sweet songs, ect!
So Emmaus went on monday and loved it. She was bubbly and happy all day, took a nap, was a little chatter box AND I got the morning free. AWESOME.
Then Tuesday morning at 1am- it all fell apart.
Emmaus woke up screaming- I went up to check on her after a couple minutes and the poor child is kneeling on her bed, staring at the wall, screaming bloody murder and batting at the air. Well- my brother had night terrors- so I assume this was the same. It took a good while for me to get her calm. I tried holding her, and speaking softly to her- to which she smacked, pinched and bit me- then I tried singing her this song she likes about Jesus- same result and finally I decided to pray for her-and once I started praying she calmed down and woke up and sweetly started stroking my face and saying mama- in a very sad relieved way.
Well the night continued- she didn't sleep well, I was awake due to crazy pregnancy insomnia that has set in, and it was long. Anyway- finally about 4 I am guessing we fell asleep. (*to give Dan credit he was with her for a bit- but I figured I would let him sleep since I was wide awake anyway- and I would take over trying to get her back to bed).
Anyway- She woke up early- and was very excited I was in bed with her- she sat up, sweetly "oooohhhed mama" and then I heard her tummy rumble- I sleepily put my arm around her back to give her a hug- and then I felt it happen.
THE HORROR OF LIQUID POO SEEPING OUT OF HER DIAPER ONTO MY NOT YET FULLY AWAKE ARM....
TALK ABOUT A RUDE AWAKENING!!
I calmly got up, got my arm wiped off, started chucking clean things out of her bed- so I wouldn't have to scrub every stuffed animal and blanket, I asked her to stay in bed (which is I am sure she didn't comprehend) and walked to the door to call for back-up. To which I find the door LOCKED. 
Well- the lock is on the outside and we lock her in at night so she won't open the door and fall down the stairs. Dan had locked it out of habit when we traded. 
THEN I PANICKED....
Suddenly I feel like the room was very small, (her room is huge) smelled incredibly like poop, I was gagging, horrified by the left over poo on my arm. Trying to keep her in bed. Hollering for dan- convinced that he won't hear me, that we will be locked in the poo filled room without help- her crawling all over. 
HECK I will probably have a baby in the poo filled room. 
Well- dan saw me on the monitor squatting by her bed, heard my hollering- and figured I was in labor so came running.  (thankfully)
Of course we got it all handled- it did turn out to be a "crappy" day and she definitely had the bug that Dan had the prior week- but we survived- and my house got DEEP cleaned. 
Probably some nesting/I can't handle the amount of sickness that has happened around here lately.

Can I just say- being a mom is by FAR the most DISGUSTING job I have EVER had! 
(And I am a nurse! And I have worked with adults who are pretty funky- but NEVER have I been poo'd on while not fully awake in a locked room) 

So what I am saying is....We are having fun around where while waiting for baby! 
(Who is now 10 full days later than Emmaus was) 

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