At the beginning of this year, she had strep and a UTI but recovered quickly. In February, we saw two events that might have been seizures but never repeated themselves after that time. Then, in late March, as we prepared for Joy’s 11th birthday in April (we celebrate all month with Joy 😊), we started to see what we feel are true neurologic signs of the beginning of her decline. Let me explain.
One evening when I arrived to visit Joy, she was on oxygen and very congested. I could tell she was warm and her heart rate was a bit high. This is NOT her normal so I asked for the nurse manager or a provider to come take a look. Eventually, we got the congestion cleared and her oxygen saturation levels rose a bit. They kept her on oxygen for a while and after a few hours, she was fine. Unfortunately, this started into a trend of her having these episodes a few days in a row then off for a few days and on again. We began to try to find out why this was happening. All of the tests and exams by providers were not turning up any specific causes. There was no danger to Joy immediately in any of the episodes so we knew we would just have to watch the trend and learn from her what this was. It became clear over time that it is likely neurologic as I mentioned before. Basically, our brain does some things autonomically, or involuntarily, and hers is misfiring sometimes. There seems to be no rhyme or reason as to when it happens. Much of it also has to do with not being able to cough or swallow well. Then her lungs have to work a little harder to get enough oxygen, then her heart has to work a little harder, then her temperatures raises a bit. It is a domino effect. This trend continued for the next few months into the summer. Over time, we also saw involuntary movement, tremor and twitches increase which is another sign I like to call “neurologic noise”. Because of this, in June, we raised one of her seizures medications, and I am happy to say that, at this writing, the medicine change has seemed to calm everything down. We have had less episodes with oxygen desat and less “neurologic noise”. Throughout April and May, we were getting less smiles out of her, but with the help of the medicine, she is smiling more again, depending on the day. There are good days and bad days, as often is the case with neurodegenerative diseases.
Of course, with these signs likely signaling the beginning of her decline, we have had to emotionally, mentally and spiritually process this new season of life. There have been days with many tears and heaviness but thankfully, this has not characterized our life as a whole. I continue to refer to grief as ebb and flow, and even though she is still with us, we are grieving the losses we know lie ahead of us. There’s such a fragile balance between processing those and not dwelling on what has not yet happened. I know we are not always maintaining that balance but there is grace, always sufficient grace.
We have no idea how fast or slow Joyanna will go through this season. We are not looking forward to the discomfort and pain for her caused by neurologic decline. But I look back and I do KNOW this, I watched God carry Philip through and eventually, heal him in heaven. He will do the same for Joyanna. I remind myself often that He loves her WAY MORE than we ever could.
This time of sorrow reminds me of one of my now favorite quotes from a song: “ The Lord will never waste our pain.” His purposes and plans are to take this pain and bring us good and Himself glory. He is worthy!
I’ll leave you with the full lyrics from the song, “Redeemer of the Rain.” Hopefully, it can encourage you as it has me many times. Thanks for your prayers!
Redeemer of the Rain
Song by The Collingsworth Family
Who doesn't wish for sunny days?
That the sky above us would never turn grey
But life isn't always sunshine
We have times that leave us asking why
And when the clouds roll in and tears begin to fall
There must be a reason for it all
Chorus
Redeemer of the rain
The Lord will never waste our pain
He brings beauty out of brokenness
And hope to our heartache
Healing out of every hurt
That invades our shattered world
We never walk through trials in vain
He's the Redeemer of the rain
Every problem that we face
Is sifted by the Father
Through hands of grace
He uses sorrow to draw us
To call us closer to His side
It's in the middle of the storm
We learn to trust
That He is always watching over us
Redeemer of the rain
The Lord will never waste our pain
He brings beauty out of brokenness
And hope to our heartache
Healing out of every hurt that invades our shattered world
We never walk through trials in vain
He's the Redeemer of the rain
Dark days we walk through
They lead a path for others
Leading them to the
Redeemer of the rain
He brings beauty out of brokenness
And hope to our heartache
Healing out of every hurt that invades our shattered world
We never walk through trials in vain
Oh, we've known His mercy long enough to say
He's the Redeemer of the rain