The decision as to whether to have half of our son’s brain disabled was now in our lap. Many tests had been performed. 40 specialists at CHOP had reviewed the case and all had given the green light (not a single hesitation). Matthew was an ideal candidate for a Hemispherotomy. “If he were my son, I would be scared,” his neurologist told Joan, “But I would definitely have him go through it.”
And so, we were meeting with Dr. Kennedy, the surgeon who would perform the several-hour long operation. It was February. We had lots of questions for him, including this one: “Is Matthew getting too old for this surgery? Wouldn’t it have been better if we had it done a few years ago?”
“Right now, there is a 19-year-old young lady who is here in rehab. I performed this same surgery on her last month. She wanted rid of her seizures. And she is now seizure free!”
At that moment Joan and I were thinking the same thing. It is so hard to decide something like this for your child. What would he want? And how could he possibly know what he wants? We decided that this young lady, through her experience, would speak for Matthew. It helped us make a hard decision and to be at peace with it, thinking that this is what Matthew would choose if he had sufficient understanding.
Fast forward several months… I was having breakfast with a group of guys. It had been a little while since we had met together. I was sharing with them what Matthew had just gone through and the progress he was making and how he is now seizure free.
“What was the name of the surgery? And who did you say the doctor was?” asked my friend, Ross, sitting to my right. I answered.
“I think that’s the same surgery my granddaughter had. And that doctor’s name sounds familiar. I have to call my daughter and find out for sure.”
It was my turn to ask the questions. “How old is your granddaughter? When was her surgery?”
“19” and “The beginning of this year.”
Yes, this was the girl who had helped to pave the path – a young lady, Abby, also from Lancaster County. A few minutes later Ross was on the phone with his daughter, telling the story to her, and then passing the phone to me. “Please tell your daughter thank you. Her decision not only benefited her, but her story helped us feel comfortable with an exceedingly difficult decision.” In turn she thanked me for saying so. The recovery has not been easy, she told me, but Abby (at the time) had just achieved the ability to walk as much as two miles! So, with hearing the continuing story of her progress, she encouraged us again.
“Joan, you aren’t going to believe my story from breakfast this morning…”
One of these days we’re going to meet Abby. For one, her grandfather is determined to bring him to our church (Calvary) so his Adult Bible Fellowship can meet the one they’ve been praying for. Perhaps we’ll meet her at that time, if not before.
Abby is a paver in our lives. Though at the time she didn’t know it, she was helping to lay a path that would make our journey easier.
Matt is another paver. He is our Matthew’s cousin. He was at Lancaster Rehab recovering from Guillain- Barre Syndrome (GBS) and learning to walk again when Matthew and I visited him. It was in the Spring of 2020 and because of Covid our visit was by seeing one another through an exterior window and simultaneously talking with one another by phone. At the time, I had no idea that Matthew would face a somewhat similar ordeal.
Few, if any, have had a bigger heart for our Matthew than this cousin. This past weekend was Matt’s daughter’s birthday. Throughout the evening Matthew had watched the other children jumping on the trampoline. Joan proudly, but with sadness, watched Matthew encourage the other children. Jumping has been one of his favorite things in the world (whether a bounce house or trampoline). Just before we left the party, Matt said to our Matt. “I’ve got a surprise for you.” Realizing what he had in mind, Joan protested, “But he can’t climb in.” Undaunted, Matt replied, “We’ll get him in.” And that is the context of a clip from a video that we treasure!
The trouble with honoring individual pavers is that others on an exceedingly long list go unmentioned. There is friend, Russ, for example, who also had to learn to walk again because of GBS. (Russ’ story is entitled: A mile in my Shoes – Joan wrote the forward to his book). How supportive he and his family have been! He is one of those who, for months, never took off that purple wristband. And it isn’t just those who’ve experienced rehab – everyone on Team Matthew has made the path easier through prayer, encouragement, gifts, and acts of service (read back through our posts and you’ll see many examples).
Thanks to each of you for the paving stones you lay!