I avoided this day for weeks... I wanted so badly for him to be able to communicate, to show us something, to PROVE he was in there. In there the way we know he is, and finally to be able to show others his voice.
I even went as far as to switch days with Eric at home. Eric and I share the work/home days each week so we both have the opportunity to work and be home to teach and take care for our babies. It has been such a blessing for all of us, although sometimes tricky with scheduling. I have loved getting to watch the kids grow under Eric's leadership as well as have the personal space to step out of our home to pursue research and work adventures.
The day had finally come that I had been hiding from. I know God is able to do so much more than we could ever ask, I have seen him start a heart back for goodness sake. We know He is Father and He is capable.
But I also know that His timing is not always my timing.
His timing is perfect....mine is often impatient.
We had gotten an eye gaze device for Drake months ago. With Drake, and Vivian's, extremly limited physical ability coupled with them being non-verbal, they have a very difficult time communicating.
We know them, and people that care for them know their likes and dislikes. But to someone that doesn't have that intimate time with them, and even some of their doctors, most of D and V's communication relies on our family to be their voice.
This device would change that.
It would allow them to inch forward and burst open their opportunity to "talk" to us....all.
The device took months to get in, and weeks to set up the in person training appointment. And to be honest, when we did the original trial, Drake did very poorly. He wouldn't engage, he wouldn't follow prompts to look at different cues on the screen. His seizures were coming often making it hard to get him to focus.
He was trying his best....but I feared deep down that his best wasn't enough this time.
Drake's therapist are some of the best advocates for him and some of his biggest prayer warriors and cheerleaders.
We all wanted it so badly for him...
The speech appointment came and through some misalignment of schedules, I was home that day and Eric was working. Remember I told you that I had been intentionally avoiding this therapy? Isn't God faithful even when we aren't?
Silly now that I think of my lack of faith. And just like God...He even allowed me to be the one to see it...even in my full doubting Thomas mode that had robbed my joy for weeks.
I got Drake situated in his therapy chair, trying to make his legs and body as comfortable as I could, while his speech therapist readied the device.
We pulled him close to the table as to allow the device to fix in on his eyes and we toggled through some of the start up screens.
Much to our fear, Drake was not wanting to engage. His eyes were fixed on the top right side of the screen. He was not responding to our cues or even trying to engage the screen. Our precious therapist moved him back, centered her face in the device, checking everything to make sure the device wasn't failing and giving Drake the full benefit of the doubt.
I, on the other hand, could feel the tears walling up. Living with two children that have terminal diagnosis requires so much faith on a daily basis. Living in that blind faith, emotionally, can feel like living on a tree branch. We know our God is able and capable. We have watched Him preform miraculous works for seven years now. I dont ever, EVER, want to seem like I question His ability or power.
But we also know, after seven long, hard years. Some things are a no...and sometimes, He allows us to see that it is just a "not right now" no, to soften the blow.
Watching the disease continue to take things from my babies daily, as we await God's perfect timing for healing and treatment that we diligently seek...comes with battle wounds that God is consistently mending and healing in us.
I didn't want this to be another cut...salt on the wound that I knew deep down was there. I wanted so badly for my babies to be able to tell their own story. I constantly see them....I see them standing tall, a picture of health, sharing their testimony on a stage...Their personal testimony of how great our God is and how awful their odds where.
Another five minutes come and go, and still no engagment from Drake. I felt the pressure rise in my chest as the wave of defeat came pressing in.
In those next few moments, we had to choose.
Do we...double down on blind faith and stand firm, breaking the branch from the added weight.
Or give up...give up another piece of our hope. Surrendering to the statistics and the odds that we fight against everyday.
Well...
I felt God stir me forward..
And we doubled down.
The inevitable branch did break...
and our boy flew.
I pushed back the feelings that were trying to flood in, and grabbed a chair and started unbuckling Drake from his therapy chair. Due to bubby's extreme scoliosis sitting in chairs, even with every adaptation we can create, is still very uncomfortable for him. Most days we can barely get him in the chair for 20 mins before he starts to cry and wants out.
I picked him up, which is quite the feat the bigger he gets, and I sat him in my lap and scooted us back up to the device. With his body up against mine, I held my head to the side not to distract the device and I used my shoulder to support him. We used to take him to neurofeedback lessons when he was a baby and we had to do this as his little body was too small for any chairs. He was one of the youngest kids they had ever treated at the time and we had to make it work.
I talked to him as I hugged his waist and I told him we would do it together.
"Lets try again, bubby. You've got this, and we are right here with you".
We waited....
and waited....
And then he began!
His little eyes centered and then he began smashing the pies into the characters' faces. We all lit up with excitement as his personality started coming out as we watched him go back to the ones he liked while also listening to the requests we were giving him.
More than once I asked our therapist if this was really him doing it and not a demo mode, because I couldn't believe how he had come to life.
We have had two different sessions with him now and each time he is exceeding our expectations and each time we all end in tears...
Running the long race requires endurace that we are still learning to maintain. I never thought we would be still pressing, still praying, and still seeking a breakthrough almost 8 years later.
Drake and Vivian are worth fighting for....our Savior is worth waiting on as His timing is better than anything we can beg forward.
But please pray with us for our endurance.
Caring and loving Drake and Vivian come naturally. Our bodies are now physically adapted to the challenges of their daily care, all while caring for our home and family.
Please pray for our endurance to hold on to the hope of healing.
Fighting back doubt...carrying everyone's disbelief as you watch the months trudge forward. It is heavy and some days...the devil wins our fears and we lay a sliver of hope down.
And then some days through God's goodness and mercy.....
We get to see hope restored by a young man that by all medical standards shouldn't even be alive. A child that doesn't talk, although I am learning he is going to have plenty to say. And who physically is still working on holding his head up at almost eight years old.
But man...the story He is writing through Drake and Vivian.
They sure do teach this Mama how to have faith that can move mountains. To have faith in a Savior that can do the impossible and chooses the forgotten and lowly to spread hope that restores the bones.
Hope in our Savior.
Galatians 6:9
"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up."