Ben and I have made the decision to begin the process of permanently moving Joyanna from our home into The Children’s Center. They have already been contacted and things are in motion on their end. We'll keep Joyanna at home through the holidays this year, during which we'll travel to be with my family during Thanksgiving week and remain here in OKC throughout the Christmas holiday. This will give us some very special time with Joyanna during her last days at home. We have already met with nearly all of Joyanna’s doctors and they have been very supportive as we progress forward in this transition.
God has used several things during the past year, and especially the last six months, to shape our thoughts regarding His plans for Joyanna. During the beginning of the pandemic (when church was being livestreamed and outcomes were largely unknown) we mostly kept Joyanna at home instead of taking her to church. Ben and I would go to church when we needed to fulfill a ministry but otherwise, we would stay at home and livestream the services. During this time I was typically only going for a grocery run once a week. This meant that I was at home A LOT. Most of us were home more than normal during this time, but I didn’t realize that God was going to use this time to begin preparing my heart for the upcoming transitions and the process of grieving—specifically, that we would be walking the path towards the death of another child. Joyanna had been relatively steady for so many years that I had placed the progression of her disease in the back of my mind. As God reminded me, I used those days to cry out to God, honestly letting Him know that I wasn’t ready to walk the journey again, to tell Him that I didn’t know if I would be able to do it. Of course,He comes alongside us in so many ways to gently remind us that He will enable us through His grace and strength. Those days were hard for me, but God’s still small voice frequently reminded me I needed to trust in His plans…again. When school began in August, my heart was relatively settled and the concerns that I had about Joyanna at the time were actually resolved within months. I wasn’t entirely sure why God had already taken me through some of the grieving process, because in my limited understanding, the issues no longer seemed present. Now, in hindsight, I see His lovingkindness in all things.
Up until this summer, Joyanna’s neurologic status has stayed relatively stable but have watched her fast-growing body show signs of weakness due to limited activity. She has been doing bone density infusions for a couple of years now, and they have helped, but they can’t compensate for disuse. Throughout the last couple of years, she has added brace after brace to try to maintain muscle elasticity and avoid contracture. She has braces from shoulder to foot and has a schedule to wear them daily. Her spine has continued to curve with growth and gravity. As a result, her orthopedist has been discussing the possibility of surgery for a year now. We have tried to balance pushing her to improve physically and allowing her to be comfortable.It has become clear with the deterioration of her body that we need to allow her to be as comfortable as possible now. With this decision made, we will discontinue some braces that aren’t necessary, but others will continue to be helpful in certain situations.
Another reason we have chosen to move her into The Children's Center has to do with her height and weight and the increasing safety risk of continuing to care for her at home. She is hovering around 70 pounds and is just a few inches shorter than me. Physically lifting her is a concern because she is so tall and is essentially "dead weight" when we are moving her…and she is wiggly. It is becoming more and more difficult to transfer her (bed, wheelchair, bath chair, car seat, and other equipment). As she continues to grow, the risk that she or I will get injured continues to rise. I am so thankful for God's protection while lifting Philip and Joyanna all these years. Neither Ben nor I have had any significant injuries, but we have realized how difficult her care would become if one of us was injured.
An additional consideration became apparent this summer. Since her diagnosis in 2015, Joy has enjoyed relative neurologic stability, always responding well to medicines and staying seizure-free for the most part. Four years of the Brineura infusion have helped with the stability. The estimated loss of brain cells without the infusion is 15% annually, but the infusion lowers that to about 5%. This means that over the past 6 years, she may have lost approximately 50% of her brain cells. This summer, we began to see an emergence of involuntary movement that reminds us of Philip’s regression. We tried to raise her current medications, but they made the neurologic symptoms worse. So, we started a new medicine; although it has helped, she has not responded to the new medication as she normally would. We are beginning to see a downward trend in her neurologic health. She has a couple of evenings a week where we seem to have breakthrough increased neurologic activity despite the new medicine.
Besides these three main reasons, there are many smaller reasons and God’s confirmations in our hearts and the hearts of others from whom we’ve sought counsel. Many close friends and family members had also sensed that the transition of Joyanna's care was approaching. When I was sharing with my older sister about the details of the transition, I used the analogy that I feel as if I’m watching chess pieces move and I’m not moving them. I continue to use that analogy because it so aptly describes what God is doing at this time. It is His time for Joyanna to start a new chapter.
We don’t know what that means or what it will look like but we are confident that He knows. In fact, I have told many friends, I have so much peace that this is the next step, that I would be scared to put things off, just knowing they would be harder in the end, for her and for us. If we make this decision with His leading, then we are promised His presence and His grace for each day. God loves Joyanna way more than I ever could and she is in His hands. He will ultimately bring her healing in His time. I must trust that whatever she must face before that healing, He will also give Her grace to pass through.
For years, Ben and I have known that we would not have Joyanna continue to receive the infusions while living at TCC, though we did not know how the timing or circumstances would transpire. Once we made the decision to move her into TCC, we chose for her last infusion to be on December 15. When she is no longer receiving the infusions, we expect that seizures and other neurologic symptoms will increase, likely resulting in seizure medication adjustments coming up in 2022.
Here are the prayer requests that come to mind as this chapter closes:
- Please pray that Joyanna’s care team will be able to stay on top of the expected increase in seizure activity. We would like her to not suffer through seizures that may intensify too quickly for medicine changes to address. Thankfully, God seemingly has already begun to answer this prayer. The medicine the epileptologist chose to start in the summer is at a low enough level they could raise it quickly to accommodate seizure increases.
- When God led us to move Philip into TCC, he was no longer responsive and to our understanding, was not aware of the transition as a whole. This will not be the case with Joyanna. She will know she is not at home. This makes my mom heart struggle. But even as I say that, I am aware that God has been at work. Joyanna has moved into TCC four times already for temporary stays. This move will not be something completely unfamiliar to her, so I think she may not even realize or be aware that her time there is extending longer than her usual 1-2 month stay.
- Along with this is the understanding that she is still responding to us and her favorite things. It is important to us that she still be surrounded with the things that she has always loved and that continue to bring her so much joy. We are praying for the Lord to open the doors (of technology 😉) to us so that we can have remote access to control the media available to her in her bedspace. The staff at TCC are great about this but we would like the opportunity to take some of the burden of this area off of them because we know best what she likes listening to (since Joyanna is mostly blind at this point, she only listens to things, not watches). God has already begun to answer this prayer request and my husband is working on a user-friendly way to control audio from our devices.
- The last request builds again on the others. This is also my biggest mental hurdle. With Covid restrictions (also flu and RSV) firmly in place at TCC, Ethan will not be able to go to Joy’s bedspace once she moves in. He is 7 now and a daily part of Joy’s life. For her sake and his, my heart is hurting at the fact that he will rarely be able to see her. We can reserve a family room and bring her out to where he can see her (and have already made plans to purposely reserve this room on a scheduled basis). However, it is not the same as him being in her bedspace and being able to interact with her in the little things. He doesn’t recognize this yet (I’m sure he will be fine), but I do, knowing Joy won’t hear him and he won’t have the opportunity to do for her all the things he has been doing. He loves now to switch her music or movie out and sometimes crawls up on the end of her bed to watch a movie while she is listening.
Though this will be a hard time, we can already see that God is opening doors as He is closing others. God has given the opportunity to be more involved in the Family Advisory Council at The Children’s Center. We continue to have a great respect for this special place. We hope to minister to other parents and even staff with the love of the Lord over the next few months or years. We won’t see all the plans He has for us until we get to Heaven but we pray that we are fitted for His purposes. I appreciate my husband’s leadership in our family as we have walked this journey. I am reminded of a quote he said while preaching a chapel service at Heartland Baptist Bible College where he works. It describes our heart in this story that God has written for us:
“We wouldn’t have chosen for God to use us in this way, but we would rather He use us this way than not to use us at all.”
We appreciate your prayers always but especially now. We know we will be upheld in this hard transition time through your prayers. You are praying and He is answering!
Here is the song the Lord led me to sing at church in August:
I’ll Trust The Potter’s Hands
Here on the potter's wheel, I find myself once more,
My faults and frailties bring me here just like before,
With strong and loving hands the pressure is applied,
Oft times I tremble as He puts me thru the fire.
CHORUS:
I'll trust the potter's hands, He knows what's best for me,
He has a perfect plan these human eyes can't see,
He's the potter I'm the clay,
He knows just how much I can take,
When I face the fire again I'll trust the potter's hands.
His hands work deep inside and He makes no mistakes,
Though it seems I'll crumble down and I can hardly stand the pain,
But into His own design, He is molding me I know,
Though my world spins all around, the potter's in control.
And by His grace, I can still say Amen!