When people asked me last summer why I was delivering Jack 3 hours away my response was “I am just following the yellow brick road”. It felt as though everything was laid out already… I just didn’t know where I was going. For us, this is faith. To walk step by step trusting God will lead us. Turns out the brick road doesn’t stop after your child is born! 🙂 It’s strange because when my daughter was born, I still thought I was somewhat in charge. When you have a child with special needs though, all control you thought you had goes away. And you are left with either trust or fear. I choose trust… today. I choose surrender and thankfulness.
Jack is doing amazing. From holding his head up
to learning to roll over (still needs some help but is getting stronger!)
He is all smiles all the time.
One major change since my last post is that we will be traveling to Boston, MA at the end of this month to meet with one last group of surgeons. Once you start talking to families that have gone before on the Apert journey, two places keep popping up for great care of our little ones: Dallas and Boston. Both teams have tremendous knowledge of Apert Syndrome. Honestly though, after hearing that the team in Dallas does not accept our insurance as “in network” discouraged me. Then I was having some trouble getting responses from the office. Nothing major – not enough to say to anyone “don’t go there”. But enough for me to question what my life would like like after the surgeries… would I be constantly fighting insurance companies and things? Is paperwork my new part time job? No matter where I go this is my new reality. But it did get me thinking. Boston was becoming more and more intriguing for these reasons:
1) They are a children’s hospital vs. a doctor’s office
2) They are the same group of 6 surgeons each in their own field but often work together (there are 2 plastic hand surgeons that do the surgery together, etc…)
3) They do not require dressing changes after surgery due to the way they use skin grafts
4) The hospital is considered “in network” for our insurance company (big bonus for me here)
5) Boston has been my favorite American city since I was a girl
6) The hand surgeons have been trained by a doctor who is considered the “godfather of the Apert hand”
7) I have peace.
I know there is always something more we could or should do for our kids. When Jack was born, one fear I had was to not regret any decision we made. I didn’t want to get 6 months in and think to myself “what if I had gone to Chicago, or Dallas, or Boston…” I feel at rest though now. Each doctor, each meeting, each conversation with friends and other Apert families has been God shedding light on the next step. I am eternally grateful for a God who is faithful…
One cool story that I have to document is that a couple weeks ago… I was struggling in a big way feeling overwhelmed by all of Jack’s needs over the next 20+ years. Most of the time, I just revel at his smiles and accomplishments… but there is that lingering reality of the fact that he will endure more physical pain that I ever have.. than most people in their lifetimes will. I felt paralyzed. I wasn’t making any of the necessary phone calls or appointments I needed to make for my family. I didn’t even tell Seth my deep struggle: I was not doubting Jack this time… I was doubting God. I was doubting that He would really take care of us. I felt abandoned, to be dramatic… I felt like it was up to me to figure out the insurance stuff.. the surgery stuff.. the breathing stuff… the sleeping stuff… (oh, and this was while we all had the flu and it was about to blizzard)
And then I got a knock on my door. People don’t typically drop over unannounced these days (though I do welcome surprise visitors!) It was an elder from my church… I was a little nervous that he was going to be delivering bad news or something. I explained we were all sick to try to make myself feel better about still being in my pajamas and all the lights being off at lunchtime. He handed me an envelope “this is on behalf of the elders…” he said.
I opened it up and it was a check from the benevolent offering (gift offering we take as a church each month to help families in the congregation in need). My jaw dropped. “Could this be God?” I asked myself. I could almost hear His voice in the room, “I know all of your needs child… so rest… rest in me… I will not ask you to go somewhere that I have not already been. I love you and your family… I will not leave you.”
Only God. my friends… only God could speak so specifically to my heart full of love and worry… God doesn’t expect me to be a perfect mother… or else we wouldn’t have needed Jesus. He does want me to receive from him though – to stop trying to do life on my own.
I am thankful to be in a church that strives to love others and looks out for people like me. It was pretty humbling to be the receiver of such a gift. Part of me wanted to say “we’re fine… we don’t need this… give it to someone else…” and then God was right there again, “Shannin… be grateful. I am your provider…”
And so… we leave for Boston in three weeks.