Monday, January 11, 2010

Admitting IT...


All mothers worry about their children. They worry that they aren't eating enough, they worry that their children aren't growing tall enough or that they aren't fitting in at school. They worry that they aren't learning the right things fast enough or that they aren't potty trained when all the other kids are.

Since Faith was born all the normal things went out the window. I worried about growth but because she REALLY wasn't eating without being forced. I worried that she wasn't sitting up at one and a half and I worried that she wasn't using her hands like she should. We knew all those things were part of her diagnosis but the fear of the unknown is a hard thing to face especially with a special needs child. Most of these fears have subsided or been proven wrong or maybe been proven right but we learned to live with them.

I do have a secret fear that I don't normally share with.....well...anyone. It is something that I have not been able to overcome and it seems that the fear has gotten worse in the last 2 years. I hate to even put it in words......But I am admitting it, here, among friends who probably have dealt with similar fears so I know I am in good company.

I am terrified that we will find her in bed, not breathing... You know what I mean.

I know this is a painful subject for many of you as well as me....some have dealt with it in real life. As my best friend's mother did in July of 2007, she found her daughter, in her bed at home with her two babies still in their cribs, one morning that her husband was out of town. We all miss her terribly.....it has been so hard without her.
But this fear is a gripping fear, for me. When Faith was first born, her seizures presented as apneic episodes. Meaning she quit breathing and could not start again without CPR. As her seizures have increased in the last year, the fear has come creeping back into my head/heart. The seizures are different kinds with different presentations, some with blue spells that nearly gave me a heart attack~ Carl and I rarely go a few hours at night with out creeping in her room to check on her, even though we have a video monitor. I have noticed in the last two months or so that it has been hard for me to go in to her room. I have found myself asking Carl to go check on her, while I wait breathless....for him to say she is OK. If he hesitates or is too long coming out of her room, my heart starts racing.

I know a lot of people would say I was being irrational or overprotective or paranoid. And that may be the case...who knows. But it is a very real thing to me. She usually wakes around 4 or 5 and we put her in bed with us. Often I wake with her next to me certain that she is not breathing. I don't know how to get over this fear.....I know that GOD tells us not to fear but fear can be something that keeps you aware. And if you live with the reality of a special needs child it CAN be a reality you have to deal with. A reality that I have yet to successfully deal with.......
Is there anyone else out there dealing with this? How do you handle it?

6 comments:

Amy Genn said...

I've cried MANY times thinking of the horrible possibility that Eli could die young....it sickens me...
but I also know that he will have a perfect body in heaven. He will be whole and healed to praise God for eternity.

I find hope in that alone.

Katy said...

Well, they make breathing monitors for infants and I'm wondering if would work for a larger child.

If it's that big of fear, I'd talk to someone about it--get a pulse-ox for when she's sleeping or anything else that gives you piece of mind.

Cjengo said...

I get it! I check on Jude AND Emily in the middle of the night. Jude's cold hands scare me to death....

Amber said...

Thank you for being vulnerable enough to share this with us!
I think that talking to someone definitely helps. I was actually just "defending" my anxiety to my counselor yesterday...for most people they have anxiety over unfounded fears...ours are very real and possible. I'm grateful that she reminded me...real or not, it is not positive and we need to work on reducing the fear/anxiety.
As I am working on many of the same issues...I don't have a ton of good advice, can only say, "I get it"

The Henrys said...

My husband and I both fear this. I try to force myself to not think of it, but it rears it's ugly head every now and then. I still use a baby monitor and check on her a lot during the night.

Jen said...

Hi, just dropped in to say hi as saw your comment over on Maxs blog and agree with it. I can't comment because I am afraid I will say something stupid and hurtful because I have not been in the situation and can only understand from what you tell me. That is not the same as experiencing it and while I feel sick at the thought of what you experience I know it must be 100 times worse for you. Thank you for posting IT, very brave and you have helped one person to understand just a little bit more. Jen