Today Super Joe turned two. He is truly no longer a baby. And although he is the baby of the family and I automatically call him my sweet baby boy, he is truly a toddler now (well, a crawler, but you know what I mean).
He was so tiny when he arrived three weeks early. Well, at least he was tiny at 7 pounds 11 ounces compared to Thomas Henry who arrived two weeks late and weighed in at 9 pounds and 4 ounces.
Joey arrived quite yellow and spent almost a week under the bili lights. I remember how he didn't open his eyes for weeks and what felt like an eternity.
I remember being so amazed and so grateful that he arrived alive.
The growth he has had over the last year is incredible. At times it seems slower than watching paint dry, but when I remind myself of all that he has been through it is actually remarkable that he has such a fighting spirit and hard work ethic towards learning and growing. This year has consisted of his auditory brain stem response, ear tubes, eye surgery (another possible eye surgery), leg braces and much more. None of it seems to phase him too much.
|His first birthday.|
Tommy is who made me a mom and Joey is who is making me a better person. I see the world in a different light. I only thought I was a compassionate and empathetic person before Joey arrived, but it has taken his trials and tribulations to really help open my eyes to what it means to have true challenges. His little life has helped me understand just how marginalized individuals with disabilities are sometimes made to be. How those who may have physical or mental challenges need strong voices and advocates to help make this a better and more compassionate and accepting world. It's not a role I signed up for, but it is one I now cherish and am committed to.
This last week I had a few unusual conversations. Conversations that if I had encountered them a year ago I might not have handled very well. It seems that not only has Joey grown a lot this year, but so have I. Perhaps I was still angry or grieving last year. Maybe I was mourning the unfairness of him having to have heart surgery and having to work so much harder at every little thing. Whatever it was I feel like I am moving to a new phase. A new stage. Less anger and more advocacy and explanation. More compassion and grace for everyone I meet. Did I know this much about Down syndrome before we had Joey. Absolutely not. How can I expect everyone I meet to know the preferred language and the preferred terminology? Instead, I hope I can be a good role model. Someone who can help provide information and awareness.
Last week I had another parent look at Joey and say, "Is he Downs?" Aside from the incredible grammar issues with that sentence, I was a little taken aback. "Why no, he is not Downs," I replied. "His name is Joey." You see, this is a very large percentage of the world who truly see the disability or diagnosis first. I can only hope that with kindness and grace that I can help educate and explain and eventually help make the world a better place for Joey to live in. A world where people see him (and many do!) for his incredible smile, his funny personality and his awe-inspiring perseverance.
The question after the "Downs" was, "How severe is he? Does he have total Downs?" Hmmm.... this is such an interesting question. I gave my usual response plus a little more, "Yes. He has it 100%. It is kind of like being pregnant. Either you have Down syndrome or you don't." Then to the severity question, my new response, "I compare it to everyone else. Each person has their own strengths and weaknesses. Some people are really smart in math. Some are better in English. Joey will develop his own strengths."
I hope these are good responses. Anyone out there have any other suggestions?
The final weird/funny/bizarre question I received last week. I was talking to someone I just met and the topic of kids came up. We talked about Joey and his upcoming birthday. Then the person looked at me and said, "Is your other son Downs?" Again-- it was just so interesting. I am trying to look at things with more humor and less defensiveness. I just smiled and said that Tommy does not have Down syndrome.
In the meantime, Joey celebrated his 2nd birthday with a small gathering of a few close family friends and in-town relatives. We also celebrated this next "step" (pun totally intended) by picking up his Super Joe leg braces today.
It's going to be another exciting and incredible year for Super Joe!
Happy Birthday, Joseph David! We love you and are so incredibly proud of you!