Not wanting to let her go

With all of Hannah’s medical appointments and everything, Daddy and I agreed that I would not go back to work yet.  Even though the medical bills are starting to pile in and we had to get Daddy a new car because his 8-year-old car finally bit the dust, we figured we are still going to be okay through the beginning of the new year without me working.  

Truth is, I hate not being around Hannah.  I love rocking her in my arms, having her fall asleep on my chest, seeing her smile when I come to pick her up from her pack-n-play, staring at me walk around the house while in her swing, stroking her face and hair, and just gazing into her beautiful eyes.  I’m not obsessive about it, as I don’t mind letting her stay and visit with our neighbors for an hour or two or hang out with my husband.  But when I do have her with me, I just want to be with her…play with her…hold her.

There are many times during the days that I forget that she is sick.  I have even gotten to the point where I don’t even notice her “tire” anymore (her spleen is so enlarged that it is sticks out the side as well as her liver).  I am always reminded when she has her little breathing episodes, which sound like asthma perhaps (going to talk to the pediatrician about that one next week.)

But I find myself getting caught up in what is going on when there is talk about the future.  When we opened her savings account for college, talking about going to elementary school, sharing clothes with her big sister when she is older.  I find myself freaking out a bit thinking “will she make it that far?”  And then, like now, I get completely crushed. 

I hate that all the diagnoses on the table have the potential of taking her away from me before she has a chance to even become her own individual.  I just keep thinking that it just can’t be possible.  I mean, why would God put us through so much to get her here, 11 years, only to take her away? 

The not knowing what is causing all of her symptoms is the worst.  I feel like I could better deal with whatever it is if I knew WHAT it is we are dealing with.  I hate thinking about the worst-case scenarios because with her symptoms and matching possibilies, they are too realistic and just suck. 

I feel like I can’t treat her normal yet.  I don’t want to put her in her crib in her room yet because I just want to keep her next to me at night, just in case.  She’s almost 4 months old, and I know she can’t sleep in that pack-n-play forever (and the crib won’t fit in our room).  I just don’t want to let her go.  I’m not ready.  I’m so afraid.  I’m just not ready.