Friday, May 10, 2013

Days like today

It's been one of those days. It all started out well enough. Reagan slept the whole night last night. She woke this morning serious but OK. Then she started with the crazy laughs. Her body was super tense. Couldn't hold still for a second, gnawing on her fingers nonstop. She made it through the morning without any incidents, then this afternoon I ran to the store with Ryan and I get a call from the nurse. Reagan is SCREAMING in the background. I panic...is she injured, did the nurse drop her, did she bite herself, did her tube get yanked out???? The nurse can't even hear me asking her questions because of all the screams. Finally she tells me that she just went from laughing to crying! I told her to give her Lortab and then headed home. Before I could even get home, the nurse texted me telling me she had stopped (before she even gave her the medicine). She was still VERY tense, very stressed, but at least she wasn't crying. She stayed this way until about 15min after the nurse left. She started with some whimpers and then went into full blown screaming crying (holding her breath til she turned purple)!! The tears were flowing (from both of us).  It's just so heart wrenching. I gave her Clonidine and then Lortab, but nothing was helping. I felt completely and totally helpless. And it's times like these that my mind starts to wander...to places I don't need to go. The "why Reagan"? Why does she have to go through this? It's not enough that she's severely disabled and can't walk, talk, eat...it's not enough that she suffers from an incurable disease...she has to suffer. I hear people (with disabled/medically fragile children) say all the time that if given the chance, they wouldn't change anything about their child. Not me. I admit that I am a far better person for having lived this life. I'm closer to God, I love Reagan (and Ryan) more deeply than I ever could have, but if given the chance, I would want my girl healthy...whole. I hate that she has to suffer. Other kids her age are running and playing and laughing and she's sitting in a chair, having to be restrained so she doesn't hurt herself because the pain is so bad! Don't get me wrong...I know we are blessed to still have her here. I know far too many that have lost their little ones much younger...I know more that are fighting for their lives in the hospital right now. But there are days (like today), where I just long to be that "normal" Facebook family...going on wonderful vacations, having mother's day tea at school, going on dates with my husband. It's tough. It's isolating. And days like today, I'm sad and wish for more for my girl. As for now...she's calm and she's sleepy. And for that, I am thankful. Praying she gets a good night's sleep tonight and wakes feeling much better tomorrow.

1 comment:

Heather said...

And I failed you once again. And I am sorry.

the day just got away from me. And I bit ago I see I missed a call from you to FaceTime. True?

I know you would change it because you love her just that much. I know you would do anything for her and I know you are grateful and feel blessed. But you are human. And to watch your child, endure days like these, is unfair. Unfair to her and her precious body.

I wish those normal things for you. I truly do. And I understand, on my level and in the world of disability that I live in, I do understand.

Prayers for a restful night and a better day tomorrow.