I have been “what if-ing” myself to death lately. Lest you think this is some kind of new swear word (which it very well could be, given our track record – check out these posts), rest assured it is not.
What ifs happen when you try to plan a future move and keep coming up with ‘what if’ situations that stop you from moving forward. Imagine a chess game where every move is a compromise – you both move forward and lose at every move. Really, that’s life. Problems happen if you over-think things, or just react emotionally. Chess is a balance of intellect and emotion – so is life.
The problem right now it the what ifs have us paralysed. We’re not moving forward because we’re stuck in the past and present. Our future is so complex and unthinkable that we are what if-ing ourselves to death.
For those of you that are regular readers you know our super-powered family has some serious special needs. Little Miss Adorable has Prader-Willi Syndrome. This genetic quirk means that Little Miss Adorable has seriously low muscle tone, and she is losing the ability to feel full after a meal.
Little Miss Adorable’s meals are carefully monitored, we follow a dietician’s advice, we have a world-class pediatrician, we have a dedicated occupational therapist and we live in a community with amazing preschool programs. We are lucky to have such amazing resources. People from around the world move into our community to have access to these resources. Truthfully, we have it all – excellent medical care, excellent child development resources.
Which is fine, but…
We want to leave it all behind.
Hubby and I will always turn toward the unknown. When we drive down the highway of life together we take a lot of detours. We will always take the scenic route, just to see what else is out there. This means that we were happy when Hubby left his unfulfilling job of 19 years, went back to school fulltime and started a whole new profession. No problem, no what ifs, we just did it.
And we haven’t looked back. We both think it was the best decision ever. We embrace the unknown and chase change. So why the what ifs now?
Things are not as clear cut now. Little Miss Adorable? Her needs are a piece of cake compared to my son, Mr. Sensitive.
Once we got over the initial shock of Little Miss Adorable’s diagnosis are realised she was medically stable we decided to leave the city we live and work in. Our jobs are pretty portable, it would just mean we’d get re-established in a new district. That was fine by us. We were up for a change.
And leaving the city meant that we could stretch our housing dollars further and live in a place that could meet Little Miss Adorable’s needs. We wanted country living. Fresh air and an active lifestyle. Low muscle tone? No problem, we’d buy her a pony for her own therapeutic riding exercises. Insatiable hunger and food seeking? No problem, we’d live about 10 miles to the nearest store, even the most determined person with Prader-Willi Syndrome couldn’t walk that distance. A larger home meant that we could design the kitchen the way we wanted – a butler’s pantry with a lock on the door so all food would be inaccessible to Little Miss Adorable. Prader-Willi problems solved.
And it was a bonus that our family and friends lived in the country too. That’s how we discovered Little Miss Adorable loved riding horses – she was riding a friend’s horse (with our friend carefully holding Little Miss Adorable) and it changed Little Miss Adorable completely. Little Miss Adorable’s whole body – muscle tone, alertness – improved so much she looked like a different child. She sat erect and was so proud. She waved to us like a queen on her throne while the horse walked around the ring. We knew this was the life for her.
Everything made perfect sense – until we received my son’s diagnosis of Duchenne Muscular Dystrophy.
Now the team of medical professionals we once were happy to leave behind become even more important to us.
And living a life to the absolute fullest also becomes more important to us.
Because time is limited – months and years tick by. And Mr. Sensitive’s muscles break down, get sore, and cramp. He just turned five. By the age of 12 most boys with Duchenne Muscular Dystrophy have lost the ability to walk and use a wheelchair fulltime.
What happens with Duchenne Muscular Dystrophy is the muscle cells in his body will break down over time, as will happen to all other people. But, unlike most other people, the cells in Mr. Sensitive’s muscles will be replaced by fat cells, due to a deletion on the dystrophin gene.
This means that over time my son will lose the ability to use his muscles.
Think of everything you use your muscles for: walking, eating, breathing, pumping blood through your body. Imagine that your muscles will eventually stop working. What will happen then?
In the past, most boys with Duchenne Muscular Dystrophy did not live past their late teens. Now, with aggressive medical care – through the use of steroids to preserve heart function and ventilators to help breathing we can expect Mr. Sensitive to live to his late 20s or early 30s. And medical technology is changing this age limit all the time.
Wheelchair accessibility is the way to go. Healthcare takes on vital importance, and what ifs become scary. What if his ventilator is accidentally disconnected? What if his heart stops beating?
The social spectre rears its head – where will he make friends? What if they’re all online? What if rural living means social isolation? What if no one visits him?
What if, what if, what if.
What about now? Or two years from now? What about all the years in between? Should we just sit around saying what if?
What does Mr. Sensitive want?
For those folks that want to really see the insane analytical obsession of my mind, as I struggle to make decisions, check out these links: