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.
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.......
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?
