Sweet Redemption June 16 2018, 0 Comments
I’ve written about her before. A sweet soul that was perfectly placed in our path to be the hands and feet of Jesus not only to, The B, as she affectionately called him, but to me. A sweet soul who has turned into a dear sweet friend: her name is Kim and she was Bryer's Physical Therapist.
Kindly, gently and ever so positively (and patiently) she helped us navigate the unchartered waters of Bryer’s 11 months. She was assigned to us at 6 weeks as his NICU PT and somehow managed to follow him onto to every floor he landed, always showing up with a smile and a plan…and maybe even a homemade card from her daughter, Maddie. She even followed us home. She went through all the red tape and head aches it would take to become Bryer’s in-home PT. This, of course, was all in addition to her full in-patient case load, not to mention her own 3 year-old and 1 year-old. It’s not a normal something for a therapist to do.
Into our home she came, just the same, with a smile, a plan and a tender persistence that could quietly rival an olympian. Tears are falling as I remember these moments.
We were most certainly a team, the three of us. We all had goals and targets. Diligently she would craft our weekly plan, making small tweaks here and there, adjusting in accordance to progress or lack there of. She always erred on the side of optimism. I’m not sure I recognized it as being overly optimistic at the time as I don’t think I was functioning in reality. I kept forging ahead with hope, the earthly kind, full of healing, progress and development.
One day, in late spring, we were sitting together on the floor with Bryer lying on the ottoman between us checking-in on progress and discussing the next few months.
“Do you think we can get him sitting up by his 1st birthday?” I asked. I had been daydreaming about the possibility of one of those iconic 1st birthday pictures.
She looked up at me and smiled, “We can certainly write that down as a goal!”
That’s all I needed to hear. “Ok, then. How can we make that happen!?”
He was 7 months with no head control and not rolling over. I now realize that she knew it was not a realistic goal, but she didn’t say so. We were going to work towards it anyway. B and I worked everyone of her plans tirelessly without fail, unless he was admitted to the hospital. It was to no avail.
Justin and I, our family, and Kim were doing everything in our power. I think for anyone, but maybe even more so for someone who thrives on hard work and achievement (me…and Kim), it was the most spirit crushing, disheartening, pitiful, maddening and grievous of times. Little did we know that his brain had begun its deterioration and there was absolutely nothing we could have done. Soon the onslaught of Infantile Spasms would come like a wrecking ball in August and he’d be gone by September. There would be no iconic 1st birthday pictures to be taken on October 17, 2013.
Let’s fast forward to the early summer of 2017.
Our new addition to the family, our son Arrow, was nearly 18 months. Having been diagnosed with Tuberous Sclerosis and fighting seizures for his first 13-14 months (he has his own story:), he was behind and honestly we hadn’t been told he was certain to catch-up. He was noticeably delayed and it was concerning. We had him in OT, PT and Speech therapies. At his 12 month check with the clinic in Cinci, his preferred method of transportation was rolling. He wasn’t crawling, let alone walking. He also didn’t have any words. We were scheduled for our next big developmental evaluation at 18 months and I had set some big goals to reach by then. I so badly wanted to take him walking into that next appointment.
For any of you who have had slow walkers or developmentally delayed babies, you are familiar with the milestone markers and timelines. For walking, they give a normal range to be something like 9-18 months. I was holding onto hope that Arrow could slide in right at the very end of the normal range for walking. Perhaps he would then be labeled as “caught up” or on the right track and maybe that would give us a better idea of his overall prognosis. MAYBE, the doctor would look at us and say, “Looks like Arrow is going to be one of the more mildly affected ones…” or something like that.
We upped his Physical Therapy and even started a new and additional method of therapy. I worked and worked with him, but he just seemed stuck. I was discouraged. It just so happened Kim and her family came over for pizza one night in late May. We discussed his lack of progress and my goal of him walking, now with MY 2 week “deadline" closing in. Mind you, she wasn’t his therapist.
In true Kim form, her wheels started turning. Pretty soon she had come up with a plan to come evaluate him and then the week of our church’s VBS, in which her kids participate as well, she’d do 5 straight days of intensive therapy each evening. It was a brilliant idea.
For 5 straight nights, we met at church, got our kids dropped off to VBS and then stole away to the empty nursery for a 30 minute session. She took a different approach from what our other therapist were trying. She wanted to get him to stand-up in the middle of the floor instead of relying on pulling-up. If we can get him to do that, the walking will come, she said.
You guys. By the the third day, after jerry-rigging a supportive harness out of ace bandages and giving us home-work to do, he was wobbly, but getting up to stand. It was magical. His proud smile, our whoops and cheering him on. The amount of progress he had made in just three days was astonishing.
On the 5th and final day we arrived at VBS and met Kim. As he was crawling around, she went up from behind and prompted him with an “Up Up! Arrow, up up!” and he got up. Not only did he get up, he walked over to Justin who was standing about 20 steps away.
And then I crumpled into a complete mess right there in the middle of the thoroughfare. I excused myself to the bathroom and tried my best to reel it in.
Watching Kim, watch Arrow get up and walk is is difficult to describe. The look of victory, of love and the pureness of pride on her face as she held both hands towards heaven and cheered. I was flooded with memories of how HARD we worked with and FOR Bryer and I could see that she was too. All the brain racking and tweaked approaches. Letting me put “sitting up by 1st birthday” on our sheet as a goal. Celebrating the tiniest of progressions, that were really not progress at all. And then finally saying goodbye hours before he left us. She held him, ran her fingers through his hair and kissed him goodbye.
The B, all the work she had poured in yielded him no physical gains. I can imagine she was left feeling as helpless as I did.
He blessed us with a bit of redemption that 5th day of VBS 2017 and boy was it sweet...and beautiful and sacred...and healing.
Arrow walked into that Cincinnati appointment the following week (June 15, 2017) at 18 months 1 week old. As my son, Sander, would say...