Supporting families with special needs
I read a story this week about a mom who was struggling with the moment her daughter’s wheelchair was delivered. Her distress was not so much over the wheelchair itself, but had more to do with realizing that her daughter would need it for the rest of her life. In this month’s podcast, Dr. Lorna Bradley calls this kind of experience the circle of grief. As parents we all face those moments when we witness our children going through great trials, and it can break our hearts. For me, moments like this often occurred in a doctor’s office, at those baby wellness checkups where they measure your child from one end to the other and then give you a whole spate of statistics about how they are developing. Really, it’s the moment when they tell you how your child stacks up against other children that can be nerve wracking. It can be a moment of pride, but it can also be heartbreaking to hear that your child is falling behind other children their own age. For me it was never a shock or a revelation to hear; it was just another moment that confirmed our reality. Perhaps at some level I was thinking that if I just took my son to one more therapist or one more doctor it would change his diagnosis. Instead the doctor gave us the facts, which brought me painfully back to earth.
These moments are typically shot through with emotion and reflection, and while calling these episodes the circle of grief highlights the way we often feel, the fact is we encounter a similar circle with moments of great joy as well. Those doctors’ visits I mentioned sometimes came with predictions of future difficulties. Things were going to be hard for our son to accomplish; we were even told there were certain things our son would perhaps never be able to do. So when his hard work and determination and the dedication of his therapists led to a breakthrough, our joy was just as powerful as our grief in moments of discouragement.
Have you ever noticed that a seemingly simple task can quickly grow exceedingly complicated? Of late, we've been trying to arrange a trip with my whole family. Gone are the days of one car, Dad as the benevolent dictator and a few suitcases. We're all grown now, so this means multiples of everything: families, requests and demands and yes, even challenging problems that require sensitive handling. Negotiations for the excursion are now underway. For example, I had to guilt my sister into coming - but the persuasion comes with a hitch; if my brother bails out, she will too. I find it funny that while we've all grown up under the same roof with the same parents, we're all so very different. But, what else is new? When I look at my own children, I see three very distinctively unique people. Our tendency is to think that we treat them all the same, but the reality is that it's just not possible.
When I was a boy, the last day of school was by far the best day of the year. Teachers couldn’t give you any more homework for three months! And you didn't have to hand anything in that was past due. It was too late. Your fate was set, whether good or bad.
But the best thing about the last day of school was knowing that when you woke up the next morning, it would be summer vacation! I would always try to sleep until noon every day that first week of summer, but it usually didn't happen because my dad would have projects lined up for us to work on. Still, my friends and I would ride our mini-bikes all over the neighborhood. When we were younger it was our bikes, and when we were even smaller, Big Wheels (does anybody remember those?) We got soaked running and playing in the sprinklers and of course freaked out when we heard the ice cream man. We'd run into the house to beg money from Mom. We crammed so much activity into each day that the three months of summertime seemed to last forever – or at least like a whole year went by before school started again.
At some point during summer, we'd go on The Trip. You know what I'm talking about. Dad would take a week off from work so the whole family could go camping or visit relatives. If we went camping, we had a list of all the necessary supplies and checked them off one by one. Can opener, check! Coffee, matches, band-aids; check, check, check! All the essential items were packed into our homemade recreational vehicle, which was an old potato chip delivery truck my dad transformed into an RV. We called it the "Big-O" because it was orange. And then off we'd go on an adventure!
I come from a large Latin American family. Strictly, we’re something of a melting pot, but we mostly identify with my mothers side of the family. My mom came to the United States from Guatemala in her twenties, met my father, and married him. My father’s side of the family is small while my mom’s side calls anyone who ever stayed at my grandmother’s house a cousin. Any family wedding would require a large hall just for our side to be able to come.
Some years after all of my mother’s four siblings had moved to the US, so did my grandparents. Though my grandfather died when I was still young, my grandmother, (who still mostly speaks Spanish,) is still kicking at 96 years old.
My family had a summer tradition of going on a camping trip to a lake in Northern California. We would take up five camping spots with all of our campers and water toys for a week of playing in the water and soaking up the sun. Everybody would come, including my grandmother.
When Kyle, our oldest, was about two, my wife and I decided to go on the summer trip. Thankfully, my parents offered us a bed in their RV so we could have a place for our son to be out of the dirt if he needed, since he couldn’t walk or get around without his own brand of scooting.
While in the RV one afternoon, my grandmother turned to me and told me the story of one of my cousins. She told me that when my cousin was young she wasn’t walking like me or my other cousins so they rubbed egg whites on her legs and in no time she was walking just like us.
I have to confess I didn’t take this story well. I yelled at my grandmother “My son has cerebral palsy! Egg whites are not going to make him walk!”
