Today was a good day. My Dad got off the respirator, and even moved out of ICU and into his "old digs" on G6. He still has far to go, but it is so nice to see him start to improve. And to know that his horrible thirst will soon be a an end!
Joel had a great day, too. He slept outside while a friend and I fixed up the yard. (No weeds in my flower bed!!) And was awake a bit out there too. He got some cuddles from my friend, while I wiped the inside of a very disgusting car. (Seriously, seeing the inside of our car would be enough to convince you that 1) trolls exist, 2) they can drive a car.) He even fell asleep in her lap. And he was contented all day and was full of smiles and babbling.
It was a good day. I am thankful.
You know what else I'm thankful for? Joel can still hear enough to respond to voices. I don't know where his hearing is at for sure, as his last hearing test was in January. But I know he still responds to sound. And though I should really get him in to get his hearing tested again, I am very grateful that he can hear and is happy.
It was a source of great agony to me when I first learned that Joel might become completely blind and deaf as well. It just seemed too horrible for words, the thought of my baby cut off like that. Then I found out about cochlear implants. This implants bring hearing to people whose ears are no longer functioning. I felt an overwhelming sense of relief. No one could restore Joel sight, but he wouldn't have to be in both silence and darkness. But Joel would not be eligible for this surgery until he was at least 2 years old.
So, while I didn't bother asking God for a healing that I knew would never come, I did ask Him to please keep my little boy with enough hearing to make it until he hit two years of age. That was it. Just that he'd have at least enough hearing to be ok with hearing aids until implants were possible.
At almost 18 months, they tested Joel with a highly accurate test, a sedated ABR, to measure his hearing. I was sure that they would find it had decreased. I expected we'd need some hearing aids.
But we didn't. Joel's hearing was fine. And now Joel is just about 2 years old. He has one month to go. God has answered my prayer.
I'd like to ask those who pray, to make an "add on" to this. I'm no longer certain if Joel's health would be good enough to handle surgery for a cochlear implant. I don't even want to think about the sort of fight we'd have on our hands if Joel was deaf and we decided to try for an implant. And I sure don't want to have to make such an agonizing decision.
So please pray for Joel's hearing. I'm asking God to keep his hearing at a level that can at least be helped with hearing aids, right until his last moments. Of course, being well enough for a serious surgery would also be fine. I'm asking that my little boy will never have silence along with the darkness. That is the main thing. Next week I'm going to schedule a hearing test. So please pray!
If you read and remember, I wrote in a blog awhile back that I wanted people to pray that Joel would not suffer in the end. I'm asking for God to take him quickly, without a long, drawn out illness or decline.
It's a tough prayer for me to pray. Sure, I don't want Joel to suffer. But asking God for this feels like saying it's ok for Him to take him NOW as long as he doesn't suffer. But I don't want to give him up NOW. I want to keep my baby. And as long as he seems so happy, I'm going to want to keep him. Nothing but suffering will make me feel willing to let my baby go.
Catch 22. And I'm making it hard for God to answer this prayer too. I'm not "helping" Him at all. By which I mean that I could have just "ignored" Joel's breathing difficulties and I don't think it would have been long before he would have been too tired and his body would just have gone into respiratory failure. I'd never have felt right about that, plus like I said, I would never willingly give up a single happy day, and I would have ended up losing a few, like the one I just had today.
So it is a hard prayer. It feels so out of control (yeah, I know, like I was ever in control!!) to ask for God to take Joel so quickly. No warning, you see. But I really don't want Joel to have to suffer just so I "get used to the idea" that death is imminent.
Hard, but I'm going to pray it. I'm asking God for all the good days possible. And that when the good days "run out," that God will take Joel home with out too much pain, illness, or suffering.
Will God answer this prayer? I really don't know about this one. I sort of thought God might answer the one about Joel's hearing, and I'm so glad that He did. But this one, I just don't know.
And I feel guilty asking. I think every parent on the support group is praying for this. So why should I get it? I know children that have been sick, sometimes it is a long, drawn out battle. I hope if God answers this prayer with a yes, no one will hold it against either God or I. I wish very much that every child that dies would have a peaceful death.
Whoa! Look what happens when I sit down and write with no actual plan in my head!!! I go from "It was a good day." to "Every child should have a peaceful death!!!" Yikes! I'd lighten the mood, but I can't think of any good jokes right now. Though maybe someday I'll tell you about my Most Embarrassing Moment. Caroline Phillipson has already hear about it, but since she is preggers, I'm banking on it that she'll not remember anyway. Right, Caro??
So having lightened the mood (I hope), let me say that I am grateful for a good day. No, make that a terrific day. I remain grateful for amazing friends who come over and help in so many ways. I'm grateful that my Dad is doing better. And that he can soon quench his thirst! I'm grateful Joel can hear my voice. And I am grateful for every single smile!
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