As we’ve journeyed through, life, we have come to rely more and more on our faith to carry us through the good and the hard times. We understand only so much of what happens is truly in our control. We feel that God has brought each member of our family together on purpose.
It wasn’t by chance that Randy and I sat next to each other in home room the first day of our junior year of high school or continued as friends throughout college despite living 3 hours away. It wasn’t by chance that I’ve had the opportunity to assist both adults and children with special needs throughout my professional career.
And, most importantly, it wasn’t by chance that we’ve had an amazing little boy and girl placed in our home who help us grow into better people daily.
When we first learned we would be living in the midst of a diagnosis, I can remember how I felt our world would not be how we had envisioned it. As my sleepless nights were filled with the unknown I would pray… Lord let it be a mistake that they saw something missing from our child’s back, let his little head be free of the fluid consuming his brain, let it be the wrong picture.
I told myself not to worry; it will be the best case scenario. He will enter the world and prove everyone wrong. As we would watch his little feet and pray that they would show the slightest movement, we prayed they would be followed by more.
We have continued to pray that Jordan will someday leave his walker, kick off those heavy braces and walk. This prayer continues to be on our hearts as well as the hearts of those who love this dear little boy.
Gabriella has brought me back to those sleepless nights in her own way, only she keeps me up from wanting something to fill her tummy. As I’m drifting off to sleep, I will say a prayer. I’ve found that I need to focus my prayers to the moment. Moments that happen minute by minute and day by day.
It’s in these moments that I pray for Jordan to walk a little longer today without showing fatigue or to show us something new that he’s able to accomplish. These tiny prayers feel like seeds because seeds grow into flowers or may be as tall as trees. As we see the blossoms, we are aware that our God cares about the small victories in our lives.
He also cares about the big prayers as well.
Randy and I have been looking for a new place to call home for a couple of years. We have always dreamed of having some land to grow our family on. Of course our dream home has changed due to what our families mobility future may look like. We now have a small picture of what it may be because of Jordan’s use of his walker or maybe one day a wheelchair.
We’ve been looking into house plans for a while that will have wider door ways, an accessible bathroom, open for the use of his walker, and a floor that will tolerate some heavy use. We looked at several homes. But there aren’t many out there that meet the needs and wants that we’re looking for.
One cold rainy Sunday Randy and my parents went to look at some land. He came home frustrated due to the land retaining water. As we sat at the dinner table that night Randy brought his frustration and request to God through his prayer.
That evening as I was browsing a website I asked if he’d seen a specific property for sale. To our amazement, we found property that had been on the market for 5 days with the amount of land we wanted. It also had the extra perk of having some woods with a creek for our little man to throw his rocks in. God is good.
We also find ourselves praying through our Akron Children’s appointments. We entered our myelo clinic appointment ready to have Jordan perform for his doctors.
We were pleased to hear how they observed improvements in his walking with his armor of rear entry AFOs, a right knee brace and twister cables to assist with keeping his hips in line. His gait trainer also helps him wheel around the office. It’s crazy that it’s just another day at his office to help him walk around, something that we often take for granted.
Jordan also had a shunt series x-ray and CT scan that showed his shunt is working better than ever.
We also like to check to see if there are new ideas for Jordan’s everyday treatment. Making sure that we are doing what we can to help Jordan be the best he can be is one of our main mottos. We don’t want to become complacent. We want to push to find something new.
We feel that our team does as well. So as we continue on we will be busy looking at house plans, trying to find a builder and sifting out wants verses needs. It’s all a learning process, but it makes the journey that much sweeter.