The girls have not sleep well in a long time. Emily and Abby are not up a lot individually, but 3-4 times a night, they each call me to help them get in a more comfortable position. When Jeff was here all the time, we each took a child and only got up with that one. Officially today, I've spent an entire year without him here most of the time. It's exhausting to have such consistently interrupted sleep. It's difficult to think clearly when all I can think about it how tired I am. Of course this is exacerbated by so much going on in my life.
The not bad part of my week is my sweet baby Hannah turning 18 tomorrow. I can't believe it. I remember the day she was born and the way I felt as I became a mother. I had that overwhelming "this is what I'm here for!" moment. Raising that tiny baby who has become this smart, funny, helpful, happy young woman is just as overwhelming. It has been a privilege to be hers as she has been mine. I'm excited to watch the ways the Lord will continue to shape her as He directs the next phase of life for her.
Abby is not doing particularly well with trying to increase her feeding rate. Her belly swelling is increasing significantly as we increase the rate what should be insignificantly. She doesn't seem to feel as well as she did in when we first started the new formula. There are too many days that she wakes up and I know she just doesn't look good. Her color's off or the nausea begins before I even get her out of bed.
Abby on a good day in therapy
She saw the Dr. on Tuesday and he said what I've started to understand, but wouldn't let myself think. The longer this goes on the less likely she is to recover. His phrase was "this may be her new address". I do not want to live here. It's hard enough just living in CP land, I definitely don't want to live in GI dysfunction land too. He wasn't saying she couldn't recover, it just becomes less likely. It's hard for me to imagine her better too. Her constant nausea reminds me every day that she isn't well.
If there is a positive note it's that she's stronger. That's very important because she's better able to handle set backs. I'm thankful for every good thing right now.
Speaking of set backs, I spent the day at the hospital with her yesterday. She hadn't had a good day Thursday, and Friday she woke up looking bad. Her belly was big, which is unusual for first thing in the morning. That usually happens as the day goes on. I took her temperature and it was 101.3. That's not good, so I called the Dr. and was told to take her to the ER. The possibility of a central line infection is too dangerous to wait and see.
My heart just dropped as I drove back to the hospital. I packed a small bag just in case, but I couldn't bring myself to really plan to be there. I know how important it is to go, but I want to be anywhere but there.
The blood work showed her white count had dropped significantly since Monday's blood draw. Other markers for infection were high. It didn't look like a central line infection, but something was going on. They gave her a dose of Rocephin (antibiotic) and let us go home. Thank God. They would have been happy to admit her to "watch" her for another day, but they were also comfortable letting her go home. She seems to feel much better from the antibiotics, so again, grateful.
And yes folks, there's more.
Emily. My smart, frustrated, teenaged child. I never want to get too much in to special education on this blog because it's another thing I could write a book about and this is already long. But it's all I can think about today, so I have to mention it. After and exhaustive meeting with her school on Thursday, the IEP team (which apparently I'm not a part of) unilaterally decided to move her from a general education track to a special education track.
General education is working toward a standard diploma. A student can be accommodated (very important word) by giving them extra time to complete assignments, flexible settings (quiet area), additional instruction etc. The curriculum can not be changed in any way. Gen-ed students take standardized tests (in Florida it's the FCAT).
A special education student receives a certificate of completion rather than a diploma. On this track, the curriculum can be modified to meet the student at their current level of performance. They take a standardized alternate assessment based on their modified curriculum. There's nothing wrong with this track if that's where a child needs to be. Abby is very happy learning at that pace. Emily loves the challenge of high expectations.
The problem is that Emily takes a long time on her computer to type her work. She rarely finishes typed assignments. When given non writing assignments in multiple choice form she does great. She's in the 80% in most subjects when given an alternate response method. Unfortunately, this is considered a modification. The fact that she understands the information is irrelevant. She can't answer the way other kids do, so that excludes her from general education.
I was LIVID! If she understands 6th grade work, leave her alone. She can't walk, she can't talk, she can't feed or dress herself, but she can think. She knows what's going on. Why in the world would anyone want to take away the one thing she's got going for her? We will go to what's called Due Process,which is the legal next step when we do not agree with the school's decision. I don't hold much hope for it. 80% of parents lose in Due Process.
Special education laws that are meant to protect the rights of kids like Emily somehow trickle down to exclude them from their educations. I wish I had time to be a lobbyist. I would love to work full time on this. As it is, I will call everyone from the White House to our local congress and school board on Monday and be told there's nothing they can do. I'll call anyway because my daughter deserves it.
So many years I've fought to keep Emily in general education and in a day it's all gone. If I wasn't so mad, I'd probably cry.
Jeff is here this weekend for Hannah's birthday. He took kid duty last night and I slept 8 glorious hours. If I didn't already love him, I would have fallen in love for that. We cleaned the garage and packed some today. We make as much as possible of these quick weekends. We are all hoping and praying that soon we will be together as a family.
I'm discouraged by so many huge, difficult situations going on all at once. I know that God is faithful, but I can't help but question what in the world He's up to. What do I need to learn or see in all of this?
I keep thinking about how ten years ago, we moved to Florida from NC.
It was the hardest time of my entire life. I felt completely alone with 3 year old disabled children, a precious, little infant who I didn't have nearly enough time for, and a busy 7 year old. I was drowning in such great responsibility. I felt abandoned by God, invisible to the world, and unrecognizable to myself. I was desperate for some measure of control over my life. It just wasn't there. Emily and Abby were full time work, my baby, Sarah needed me and Hannah was never a child who relished change. I crossed the Florida state line in tears. I couldn't see how I could ever handle so much by myself.
I wanted to quit. Every-single-day-I wanted to give up.
Every day I stayed.
One of those days as I blamed God for abandoning me with so much work, sorrow, grief, hurt, responsibility, even love that I didn't know how to give, I felt him ask "how can I abandon you if you haven't come to me?" I realized that I had stayed alone in my misery and only reached out to Him in blame. So I carried little Abby into a church and my life changed. I found my Savior, not in the building or songs, but in His people and His words. I had known of Him, but I didn't know me through His eyes. I hadn't been able to see Emily and Abby as He did. I was desperate to see them beautifully instead of broken.
During that time He began a great work of healing in me then. I have a confidence in my faith and a desire to be close to Him that I couldn't have imagined 10 years ago.
God could never be as distant to me as I felt he was in those first days here in Florida, but when I am so overwhelmed by responsibility, I begin to see myself as I was so long ago. Right now I am afraid of crossing the line as we move back to NC shedding the same tears of uncertainty I cried then. I am afraid of feeling so alone again. When Emily and Abby are doing well and we are in a routine, it's a lot of work, but we're good. I can handle it. I hate to say it like that because I know I never really handle it myself, but I like feeling in control.
After a year of seizures with Em and unbelievable digestive issues for Abby, I feel just as out of control as I did when they were three. I can't believe the Lord has brought me so far just to send me back in the same frame of mind I was in then. Maybe He just needs me to remember; to really know what it felt like to completely rely on Him. Not just trust, because trust is still my decision: I still have control as I choose to trust. Maybe I need to rely solely on Him.
There are no easy answers in life, but there is the One who creates all life, with His purpose and vision. I continue to lay my life before Him with all the joy and sorrow that a heart can hold and pray that He will work all of it out in ways I can't imagine.
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