I watched a video a little while ago about a baby girl who was born without a heartbeat and not breathing. After 20 minutes, they managed to revive her but worried about the chance of brain damage. She had an abnormal EEG which they followed up with an MRI that was normal. I read a lot of the comments people left with stories of miracles that happened to them in similar situations but instead of feeling inspired or hopeful, it left me with feelings of jealousy and anger. Why hasn't my daughter received a miracle like this? Has she not fought hard enough? Long enough? Does she not deserve it anymore than the next child?
I know this is the wrong way to look at it and my heart should rejoice for those who have been healed and restored. It's just that it breaks my heart to look at my sweet girl sometimes and to see that she's obviously suffering and there's nothing I can do. One smile could make so much difference and we can't even get that. I used to think that there was a reason that we got her back, that she didn't die. I guess I thought that God was testing us to see how well we would take care of her and love her and that if we passed that test, she would get her miracle. Now I find myself wondering that if that were true, maybe we failed? People say you just have to "have faith".... maybe ours isn't strong enough?
I keep trying to remind myself that God works in mysterious ways and he doesn't always let us in on the plan. We're just supposed to keep trusting and believing and let him do his miracles in his own time. I know this is true. I'm just saying that sometimes it's hard not to question what He's doing (or seemingly, not doing). It's even harder not to wonder whether or not it will ever happen for her.
Lately, we've been faced with a lot. Analeigh seems to be getting somewhat contracted in her hips and her feet are bent to one side. You can't move them. With feet like that, walking will not be an easy task (if it's ever even a possibility). She seems to have an endless supply of secretions that may be the reason she's been breathing the way she has (almost as if she's hyperventilating). I thought she'd be through the storming by now, but it doesn't appear that she is or will be anytime soon.
ECI has been hounding me about speech and vision therapy and while I know they have good intentions, I have been wrestling with whether or not I believe it will do her any good. She was diagnosed with cortical blindness (which means her vision has been affected by the brain damage), so her brain does not recognize what she is looking at. If she can't understand what she sees, can she understand what she hears? How would she be able to learn sign language? If we can't get her off the vent to teach her how to speak, how will she ever communicate with us?
Some days I force myself not to think about these things because it's just too much. I try to make myself believe that the reason I'm not spending as much time with her lately is simply because I'm pregnant and just too tired. I think maybe I'm lying to myself and the truth is that I just feel too discouraged when I see her laying there with her heart rate up, respiratory rate up and cheeks flushed... and no smiles. There is always some demand on my time (which usually helps me hold it together) but recently, I wish it would all go away. I finally admit that I am sick and tired of scheduling doctors' appointments, returning phone calls, skipping over the cute outfit I know she would look good in because it will make her too hot, medicines needing to be refilled, etc. The list goes on and on. I've heard it said by so many that God only gives us what we can handle. I just wonder now, how many times do we have to cry "Uncle!" before we get a break??
I guess I'm having one of those crybaby days where I just feel sorry for myself. I had read blogs by other moms with babies/children with other serious problems back before Analeigh's brain injury and told myself I didn't deserve to feel sorry for myself because we were better off than they were. Now, I don't know that I feel that way anymore. There's always something wrong, something needing to be done and I'M TIRED. Physically, mentally, emotionally TIRED. I am fighting to be excited about the new baby coming, but really... it just stresses me out with the fear of whether or not I'm going to have to do this all over again. I don't think I could. I really don't. If I have to see the inside of a NICU again, I think I'll just.... well, fall apart.
Well folks, there you have it. The ones who appear to be "strong" aren't always what they seem. I don't always have it together and I don't have all the answers. I get tired of people asking me how she is because there just isn't much good to say. She just is. I apologize to any people I have snapped at while being questioned... it just seems like I've had to repeat myself over and over again between doctors, therapists, friends, family, nurses, etc. I've told the story a thousand times and it doesn't get any better each time. She still doesn't laugh, smile, talk or play. She doesn't get to go to the park, to birthday parties or family get-togethers. She doesn't get to have her ears pierced or wear pretty dresses to church. She can't drink a bottle or eat chicken nuggets. These things might seem trivial to some, but when your child can't do what so many take for granted... you realize just how important they are.
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