Well, today I had to go sit down with the units neuropsychologist and do an interview/evaluation of Gracie. He asked me questions and I had to answer whether it was something she COULD and WOULD do RIGHT now. Not two months ago...but now. It was wonderful to think back to when she first got here and all the progress she had made. At the same time, it hurt. Way down , in the deepest part of me. The part that I have tried so HARD to bury, because I AM so thankful for every positive step she has taken.
It was one of the hardest things I have ever done, saying "no" to these kinds of questions: Does she walk unassisted? Can she run without falling? Jump up and down? Bend over and pick something up without losing her balance? Remember details of the day without prompting? By the time it was over, I felt like I had answered, "SHE USED TO." at least 200 times. Then came the really hard ones. These are the questions that are haunting me right now and causing the tears streaming down my face. Does she go to sleep happy? Wake up with a smile? Does she wake up frequently in the night? Does she cry in the night? Does she get scared very easily? Is she over attached? Does she have nightmares?
The past two days she has woken up very happy. It reminded me so much of before. This morning, she woke up and was turned toward the wall. She didn't even roll over to see me, she just said "I waked up, Mommy." We had a great start to the day, cuddling, getting her clothes out, and reading the Bible. Then I had to take her to the potty. The first problem with potty time is that she for some reason is still stuck on not using her own toilet. The second problem is that she CAN'T feel whether she has to go or not. So, she really does not want to sit on the potty. Much crying ensues. I sing "The Wheels on the Bus", trying to make her sing along. If that doesn't work, we move to the B-I-B-L-E. Usually by this time she has gone, and we can continue on our day. Next is breakfast...so we go to the dining room. Usually, she eats about two bites of her food and then wants a drink. A lot of times she chokes when she's still a bit tired, and then she no longer wants to eat. So, back to the room we go to clean her up. I hear "this is not my room. that is not my bed. that is not my sink." before we're anywhere near it. She does let me get her cleaned up though...and then it's time for Keppra and to get her blood pressure taken. Just as we finish all of that, thankfully a play person usually comes. I make our beds, get a cup of coffee, and sit down to read some more Bible. Josiah gets to the hospital and we start our routine. When Grace gets back, we have to keep her occupied EVERY minute or she will get hurt. Gone are the days of sitting her down with a dolly or toy and letting her play. I have been SO looking forward to getting home and back to church. Today I started to think about what church will be like. I won't be able to leave her for Sunday School or church, because she needs one on one. If I take her in her wheelchair, she'll be bored out of her mind and crying to get out. She would also be much higher in the air than the other kids and unable to reach the table. She can't have snacks anymore unless I am right there to watch her.
Tonight, she REALLY broke my heart. A little girl was here with her parents, visiting her grandma. She was almost 2, and Gracie wanted to play with her so badly. It was 9pm though, and the parents were ready to go home. Grace stood at the door and cried, "Don't go in the moving room, Bella. Don't go." She has tons of fun here, but she misses KIDS.
***I'm sorry if this comes across as complaining. I really don't mean to complain...I am SO thankful for how far she has come, and I know that every day is just going to get better. She amazes me every minute of every day. I just meant to tell of some of the big differences there still are from before to now.***
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2 comments:
Michelle~
Thank you for your comment. I am looking forward to reading your blog! I did read this particular entry and it broke my heart. I too, have had to endure the extensive lists of "what Aviana cannot do" and also thought to myself, "she used to" I am so sorry for all you have been through and will pray for your little Gracie!
Take care as best you can!
Hi Michelle,
I don't know if you remember me, but I'm Dalton's step-mom (Rick and I got married at the church last May...... our littlest one was born with cleft lip and palate)We have been praying for your family, and thinking of little Gracie constantly. We have spent a great deal of time at Strong, and at the Ronald McDonald House up there (which is an immesurable blessing... I can't say enough good things about the RMH of Rochester). My heart has echoed the words you shared. When I let myself compare her development to other kids her age, it's so hard. (Usually those moments when I let myself are when I am physically and emotionally spent from Dr's visits and a lack of sleep...) After her surgeries it would break my heart to see her regress..... all of a sudden she'd no longer be doing things she had been doing before surgery. I'd be sooooo thankful for her safety during surgery, and for all the amazing blessings God has given me in Sierra, but at the same time, it seemed so hard to imagine having to redo everything.... relearn everything,... to walk faithfully down this path where God is leading us. I'm a planner, and it's hard to not know what the future holds, but I trust God. He has provided oppertunities for me to be able to help so many others because of what we went through, and I've learned so, so much. I always think of the last part of the "Footprints in the Sand" poem... "The LORD replied, my precious, precious child, I Love you and I would never leave you! During your times of trial and suffering when you see only one set of footprints, it was then that I carried you."
If there is anything we can do, please let us me know. We are praying for you and Gracie!
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