Joy would’ve started school had the school year been normal. But… Well, anyway, they are still trying to decide what will happen with special needs education in Oklahoma City. Actually, I think everywhere they are trying to figure it out. We’ve known since the spring that virtual schooling will not work for Joyanna. We’ve received some surveys from the school district, so I guess they are working on a plan to determine what will be feasible for these kiddos. We’re not sure if that means home visits weekly or self-contained classes in school buildings. We’ll wait and see. That will determine some things for Joy going forward. She is not getting enough gait trainer time and has developed some differences. She is still trying to step when she gets in the gait trainer but without consistent practice, she is losing some stamina. She was walking up to four times a week in the spring before school was cancelled. Then, with coronavirus, therapies changed and we weren’t even able to make up ground during her TCC stay. It’s looking like insurance will not cover outpatient physical therapy without any documentation of progress in her goals. Oklahoma City Public Schools declared a start to school for August 31 but then announced that in person learning was not going to begin until November. This means no significant walking practice for Joy for a while so we talked to her doctor about where to go from here. He had some options for us to consider so we are working through those. One of the main problems while she was at TCC was that she was fainting when getting in her gait trainer. We thought it was because of the old TLSO (chest brace) that was too small. However, we got her in the gait trainer at the house and she fainted with her new TLSO on. This opened up a new avenue to explore—Why is she fainting? Her doctor has given us some tests to put her through and gather data so he can see what is causing the fainting and a trend to make sure what we’re dealing with. We must wait and see on this one too.
The thing with Joyanna walking is that this is technically what keeps her eligible for her infusion. If she is no longer ambulating, then the insurance company can technically deny the treatment. I had to take some time to process that this might be God closing the doors to this season. We have enjoyed Joy maintaining for years now but always knew in our minds that it would not last forever. We have been happy to have our smiling, wiggly girl be about the same for so long that it feels like anew we must process the effects of NCL. I am not saying that her infusion treatment is over, just that I had to personally process that it might be. And give that over to the Lord. That was hard. Several days of tears, prayers, telling God all that was in my heart and finally allowing His peace and His Spirit to work in my heart and bring me to a place of surrender. I am truly fine now with whatever course the Lord has for her to walk in. Without the treatment, Joyanna will follow a path similar to Philip, once again losing ability and body function until she would go to heaven. But all these things are in God’s control. We will continue to do what we feel we are led to do, and wait to see what God has in store. There are so many unknowns right now. Honestly, I wouldn’t want to keep Joy this way if it would make her journey later harder. I must trust that God knows what is best for all of us.
So not unlike other times in our journey, we wait and trust God for the unknown. Waiting for the big things, we must continue to accomplish the little things. Life is so daily! Lord, help us to live in truth and sincerity each day that we have, regardless of if we’re happy or sad, broken or whole, if things are known or unknown. Easier said than done…that’s why we need His help!
Rejoice in the Lord
Ron Hamilton
God never moves without purpose or plan
When trying His servant and molding a man
Give thanks to the Lord though your testing seems long
In darkness He giveth a song
I could not see through the shadows ahead
So I looked at the cross of my Savior instead
I bowed to the will of the Master that day
Then peace came and tears fled away
Now I can see testing comes from above
God strengthens His children and purges in love
My Father knows best, and I trust in His care
Through purging more fruit I will bear
O Rejoice in the Lord
He makes no mistake
He knoweth the end of each path that I take
For when I am tried
And purified
I shall come forth as gold