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. 


Thursday, June 2, 2016


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.