Proud mothers regularly post about the success and achievements of their kids. It’s normal to be proud of your children. Having a child with a disability means watching their progress like one would observe a flower opening under a magnifying glass. It is often painfully slow but you truly rejoice in each small milestone!
I find the hardest people to share Caila’s success with are the parents of other children with Down syndrome. Kids with Down syndrome frequently have many health challenges in addition to the cognitive challenges which further delay their progress.
Caila thankfully is unusually high functioning for her diagnosis and has no medical issues at all. It’s no doubt difficult for the parents dealing with more challenges not to compare. But Caila has so many challenges too. They are different perhaps but it’s difficult to watch your child so desperately want to be included and to see how hard it is. Caila is hyper aware of her challenges and lives with one foot in each world of special needs and typical and she struggles to fit in either one! I do try and be cognizant of what I post about Caila though – I do realize that compared to others, we are very lucky.
Several months ago, however, I posted something on a support group sharing the success of another child with Down syndrome (not Caila) and the group went wild with criticism about sharing this and how hard it is to hear these stories.
Caila was just four weeks old and we went to a wedding. I was devastated! I looked at the bride and thought would this ever be Caila’s reality? The next day I met a longtime friend for coffee and I was sharing my pain and she said “I am 36 and I don’t have Down syndrome but I am not married and my mom spends every hour of the day stressing about me.” It made me reframe. That’s life - everyone has challenges!
Would we really want to be a society where a cancer survivor should not celebrate publicly because others have cancer? A daughter should never share her special moments with her mom as others have lost their moms? An engaged couple should not celebrate because they have single friends?
Perhaps for all of us, the lesson is that sometimes, things are not as they seem. We make quick assumptions about people, circumstances and situations. We judge them, label them and put them into a box while not recognizing that there may be a much bigger picture. Don’t be so quick to judge. You never know a person’s true reality, perception and concerns until you walk in their shoes.
In honor of Down syndrome awareness month I am raising the issue of sharing and genuinely celebrating every person’s successes irrespective of their level of functioning. To truly realize that all of us are in this world for a purpose and as Rav Nachman of Breslev said, “The day you were born is the day God decided that the world could not exist without you.”
