Scared

I’m sorry I haven’t written much on here lately. I have a good reason.

 

I’m scared.

 

We head to Cincinnati in about three weeks to start the discovery process that will hopefully lead to Evie eventually having tracheal reconstructive surgery and trach removal.

We’ve NEVER had to wait more than 2 weeks for a surgery before.  It’s always needed to happen rather quickly and so my freak out had a limited life before the surgery was here and then done with.

We’ve already waited three weeks and we have three more to go. I don’t know how moms do it that have to wait months for surgery.

I have this “usual” process that I go through before surgery and I thought it wouldn’t start up until about two weeks beforehand, but instead it’s just stretched out over a longer period of time.

 

Sidenote: I hate that I have a usual process for a surgery.  I hate that we’ve gone through this enough times to know how I react.

 

Anyway, so I usually start with scatterbrained anxiety. I get overwhelmed with all the little things of daily life because we’ve got this big HUGE thing coming up.

Then I have to spend some time giving myself a pep talk that I didn’t do anything that caused Evie to have CHARGE. God has His own plan for her and it’s not all about me.

Then I get obsessed with her weight (even more than usual). It’s like having a secondary eating disorder, having so much of my daily life revolving around her food, feedings, vomiting, weight gain or loss, etc.  She’s going to lose a considerable amount of weight while in Cincinnati so it’s even more important that we get some more meat on her.

I’m terrified that she’s going to get sick before we go, so that’s got me hand sanitizing like a maniac.

Not to mention we have NEVER been away from home that long with Evie!  The planning! The packing! If we forget something, it’s not like we can just pop into Target to grab some medical equipment!

I’m also slightly freaking out that their testing will show that trach removal is not possible.  That would be hard. And these guys are the best in the world. There’s no second opinion after you go to the best.

 

But the big thing I’m doing is trying to avoid the elephant in the room: the thought of losing Evie.

 

These aren’t big surgeries. The surgeries themselves are not the danger. It’s the anesthesia. CHARGE kids are extremely complex and sometimes they don’t do well being put under. That’s part of the reason we work so hard to combine procedures so we can avoid anesthesia as much as possible.

Now, Evie has done well with her surgeries since she got her trach. She’s done fine during and when waking up. That gives us a little bit of reassurance, but not a ton.

I don’t think I’ve mentioned it on here before, but the death rate for CHARGErs is about 30% for the first five years with most of those being in the first year.  That’s close to 1 in 3! And as devastated as we are in the CHARGE community when we lose an infant CHARGEr, there’s that part of us that says “Thank you, God, we are past that stage” and we want to believe we’re in the clear. But then an older CHARGEr dies and it hits us all even harder.  We know we’re not in the clear. We can’t pretend that those things only happen to “other” people, that our child will be exempt simply because they are ours.

 

And you’re probably thinking, “Megan, you just need to trust God with this.”

 

I do trust Him.

I know that whatever happens, God is good and will help us through it.  He always has in the past.

 

But I’ve also watched friends who had to say goodbye to their children. And I know it would hurt.

 

And I’m scared of that hurt.

 

I’m scared of missing her every day for the rest of my life.

 

I’ll try my best to keep you all updated, but right now I’m just going into full distract-myself-from-thinking mode to get us through the next few weeks.

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9 thoughts on “Scared

  1. Thank you Megan for opening your heart to us. We will continue to pray for you. We have no idea what you and Ty are going through and never will. We just leep praying.

  2. You are so brave and so strong Megan. You are such a good mom and a loving person. God will continue to help you through each day. Praying for you and Evie and your whole family.

  3. May the Lord bless and keep you. I understand your anxiety… not sure it will help, but I just preached on the last verses of Matthew 6… Practically Living by Faith. God loves us, cares and promises to take care of us. Here’s a link to our sermon audio… it’s not a very good quality… but listenable.

    http://www.sermonaudio.com/sermoninfo.asp?SID=319131752210

    I know we can theoretically tell ourselves these things… and that that’s not the same doing it. Hoping it will encourage you.

  4. Megan,
    I totally understand your fears. The anticipation is so hard. It is NOT lack of faith but simply that awareness. Maybe it is how we prepare ourselves for all of the possibilities. My daughter had 4 heart surgeries before she was 4 years old. It never got any easier. She did wonderful through all four surgeries. Start your lists of what you will need to take with you for her medically, to play with, to soothe her…..and make sure and bring plenty to distract/fill time/comfort for yourself. If you can bring healthy ( and nummy) snacks for yourself for when you can’t get out of her room for a meal. I would put a photo(not too small so it is obvious) of my daughter healthy at the head of her bed so the staff would see the ‘real’ her and not just the patient laying there.
    Let people know what prayers are needed…..update as you are able.
    Know that you are loved and cared for, that God is holding all of you close & with more love than we can imagine…
    God’s peace to you.

  5. praying for evie, you, daddy, sister, gramma and grampa and all the doctors.
    God has you all in the palm of His hand, stay strong and yes, we’ll continue to pray 🙂

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