We still have a dream....

In light of tomorrow’s holiday and the inaugural events this week I have been giving a lot of thought to dreams. Dreams of hope, renewal, and promise. Dreams of what should be, of what we can accomplish, of what our future holds. This week there will be much talk of these dreams as regards our nation’s politics, economy and infrastructure. Of course these are issues of immeasurable importance to all of us, our children and our nation. But as Max’s mom, the mom of a chronically ill child with serious health issues, I have far more personal issues with dreams.

As the parents of a chronic kiddo we’ve had to teach ourselves how to dream new dreams – different dreams. As parents we all look forward to the arrival of our children with joy. The promise of a new, perfect little life gives us hope, the chance to dream of what our child will do, will become. But sometimes a visit to a doctor’s office can change these dreams in a heartbeat – in our case literally. I can still remember sitting in the parking lot after leaving the neonatal cardiologist’s office having just been told our baby was not “perfect”. In that very moment we started a mourning process – we mourned the little boy that would not be. Our old dream may have been shattered that early Tuesday morning in a parking lot in downtown Phoenix but we soon started down a new road in search of a new dream. We quickly stopped allowing our grief to define the remaining months of my pregnancy, surrounded by several pregnant friends that wasn’t always easy but we forced ourselves to do it. We started to educate ourselves about what Max would face, we sought out other families with kids who had Max’s diagnosis and we interviewed cardiac surgeons and visited Pediatric Intensive Care Units. While my friends were shopping for strollers we were shopping for a cardiothoracic surgeon (a week earlier I’m pretty sure we didn’t even know what they were!) But as we did all of this we gave ourselves and Max the possibility of new dreams. Much as we would not allow our grief to define us, we would not allow Max’s diagnosis to define him as a child or us as parents. So although Max would not be many things there were (and are!) far more things that he would be.

Our new dreams weren’t smaller, less spectacular dreams rather they were merely different dreams. There were several times when Max was extremely sick those first eight months in the hospital and there would be a gaggle of doctors, nurses and techs in his room doing some life saving procedure, crash carts included, and I would plead with God in a loud voice, “God, please, please save my son – I don’t care if he doesn’t grow up to be a doctor or lawyer. I just want him to grow up, even if it means he grows up to rob 7-Elevens, I just want him to grow up!” I remember this not only because each of those doctors, nurses and techs remind me of it every time I run into them in the hospital but because it’s when I came to realize that dreaming what my son would or might be is far less important than dreaming about who my son is. He is a little boy with a great BIG ego, sense of self, and exuberance that can’t be matched. If Max doesn’t define himself or his dreams based on his limitations why should we? Max will never be a professional athlete (personally I think that ship sailed long before we knew Max had health issues, with me as a mother agility and coordination were quixotic dreams at best) but he does have the spirit of one. Max will never be the fastest runner but he will be the most enthusiastic one. We’ve learned it’s not about what Max can’t do – it’s about what he DOES do and how he does it, always with zeal and his trademark smile on his face!

So this week as we hear all the talk about the fulfillment of dreams for our nation, we will continue to dream our new dreams for our son. New dreams, different dreams, but still very good dreams!