Thursday, July 21, 2016

Lamenting

We 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.
(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.)
Lamenting.
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)
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.
And with the other I scream aloud. THIS IS NOT OKAY.

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.

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.
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.

So although I have always strived for my blogs to be honest and real- they might not be so pretty for a while.

Because it just isn't okay that my daughter has tuberous sclerosis. autism.
It is not okay that pneumonia almost killed her.
It is not okay that the med that helped her progress had such horrible side effects. And now isn't an option.
It is not okay that she cannot talk to me, or tell me her needs, her likes or how her day was.
It is not okay that she has seizures.
It is not okay that appointments, medicines, and therapies fill her day.
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"
IT IS NOT OKAY. IT SUCKS. IT IS BROKEN. AND UNFAIR. and my heart is broken over it.

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.




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Wednesday, June 29, 2016

Scars and Wounds and Messy Stuff.

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.
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.
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. 
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.
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.  
I started reading a new book today.  Here is an expert from it.
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
And so I haven’t blogged- because who wants to expose their gaping open wound?  Am I right?

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.  
I will leave you with this. A sweet picture of Emmaus "singing" as Adele blasted on my phone today. Girlfriend loves some Adele. 

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Thursday, June 2, 2016

Marked.

Part 1- Reflections 

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. 

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) 

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. 

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. 

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. 

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. 
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. That she would not be scared or afraid.

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.




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Monday, April 25, 2016

Burning hearts

My current Jam https://www.youtube.com/watch?v=Q_cX0-wBoGs  (thanks JB)

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.
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. They asked each other, “Were not our hearts burning within us while he talked with us on the road and opened the Scriptures to us?”
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.
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.
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.

Anyway- these are just my sleep deprived- ICU mom ramblings. 
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. 



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Thursday, April 21, 2016

God 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.
https://www.youtube.com/watch?v=nYP8b7p3I64

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.
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.
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.
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.
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.

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.

"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"


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Sunday, March 27, 2016

Easter Sunday- When you are standing in "Saturday"

Easter
Have you seen this? 
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. 

I have been in a little bit of a funk around Easter and today I think I finally realized why. 
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. 
But I keep coming back to "Saturday". 
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.  
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?" 
These hard things feel very "Saturday" to me. 
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. 
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. 
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. 
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. 
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. 

Happy Easter dear friends! 
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Thursday, March 10, 2016

Boogers, 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)
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.
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)
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.
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.
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)

I often find myself just standing in my living room thinking "Is this really my life? What is going on right now?"
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.
So my serious questions are.
1. Why is there so much snot in parenting?
2. Doesn't it get cold stripping down to your birthday suit every time you go potty?
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)
4. I know you are judging a little for wiping my kid up with sock- yeah it's okay- I am too.

That's all. It's almost the weekend people. Hang in there!

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