When we were on vacation, we received some news that isn’t great.
Don’t worry: Solly is healthy and happy and nothing about that has changed. I’ll write more specifics later, but, in short, we were notified by a specialist that Solly might not be a candidate for SDR, a potentially life-changing surgery that would permanently eliminate his muscle tightness. We have to do some legwork – a sedated MRI and a consultation in St. Louis – before we know the answer.
But, this post isn’t about SDR. It’s about how I deal with potentially bad news.
When you parent a medically complex child, you quickly learn that this life is an emotional roller coaster. One day your child does something amazing, something that doctors predicted he would never be able to do, and then the next day, his journey takes a step backwards – or, on some days, many steps backwards. As easy as it is to wallow in bad news and feel down about whatever that backwards step is, I’ve found that allowing those negative feelings to stick around is not only not productive, it also tends to rub off on Solly and Bea. If I choose this route, no one is happy and we remain at a standstill until I’m able to dust myself off and move forward.
Back to that phone call during vacation: When I hung up the phone with the specialist, I turned to Mike to fill him in on the conversation and tears immediately began to stream down my face. I wasn’t necessarily upset that he might not be a candidate for SDR, I was simply tired of things being so difficult for us. I grew quiet, yet inconsolable. Mike parked the car in the garage and grabbed the kids out of the car, encouraging me to sit in the car until I pulled myself together. As I sat there, I remembered some advice my cousin Marie posted on this blog in the early days when I was struggling to come to terms with our journey. Her advice:
Take five minutes a day to be pissed off – cry and feel sorry for yourself. Then stop and count your blessings.
These words of wisdom have pulled me through more upsetting situations and blue days than I can count. It seems simple enough, but taking those few minutes to allow myself to immerse myself in sadness gives me the opportunity to address what’s upsetting me, accept it, and move on when the timer goes off. This approach helps me to be a better Mom to my babies, a better wife, and a better support person for others on a similar pathway.
If you were wondering what blessings I’m counting lately, here are a few:
- Solly is happy, healthy, and making huge strides. He’s already surpassed all expectations – and I have no doubt that he’ll continue to amaze us.
- Solly has an amazing Dad who is supportive, loving, and all around awesome.
- Solly has a sweet and sassy sister, who is also happy and healthy, and although she likes to pick on her big brother, she also likes to help him when he needs it.
- Solly is walking all by himself in his gait trainer.
- Solly can ride his adaptive tricycle all on his own.
- Solly is communicating in his own way – and even showing us that he loves us by giving out big ol’ smooches.
- We’ve discovered alternative therapies and treatments – stem cell therapy, HBOT, Anat Baniel Method, intensive therapy, hippotherapy – that have already proven to be beneficial for Solly’s growth.
- We’re surrounded by loving and supportive family, two nannies who are like family, and a team of therapists committed to helping Solly be his best.
And when all else fails, I just look at these two together and all sadness disappears: