Today is a different kind of day. It is not one coated in that sticky sweet support that makes my blog do a happy dance. It is not the kind of day where Judah’s possibilities are endless, his something extra is a gift, and I see him as more alike than different. Today is not that kind of day. Today whispers “what if” in my ear on repeat. Today in the back of my head, other ideas are sitting down, having coffee and listing all the limitations that can limit. I know why these thoughts are sitting at my table, uninvited, despite the sign that clearly reads “confidence building comments only please.”
You see, thoughts are born from something. Words are typed because a thought was born, and our energy is what perpetuates it. We can deem it unimportant and easily will it to flee. We can be consumed by it and give that thought the power. Or we can do what I am about to do here today. We can acknowledge its presence, how it got here, maybe learn a little something and then send it back out into the universe from which it came
I recognize that I am struggling a bit . I know why. I know how this weekend played out and how it played a part in my current wavering…. I hung out with some adults who have Down syndrome Friday night and these two new friends were something special; inspiring even!!!! That being said, I saw the delays, the ones I don’t see with Judah yet….because, well, Judah is still a baby and with babies delay is the name of the game. Doubt nudged me a bit after that. Then there was the girl I saw with Down syndrome who was pulling people’s hair, and hitting herself in frustration. Judah hits himself when he is mad and quite often pulls hair. I stopped dismissing these things as silly naughtiness a bit after that. I told Judah’s therapist how he loves to make people clap and went as far as to say that he’s obsessed with it…she told me to look for signs of self stimulating because patterns and obsessions are a sign of autism. Today I’m a bit more speculative about our cool clapping parties .
Today I wonder. Today I’m a little more sensitive…today I feel maybe a little disillusioned with my grandiose plans for my juju. And that is ok. A day to contemplate and place that check mark next to reality is ok. I’m allowing myself today. Because tomorrow there will be no time for wallowing. Tomorrow we have work to do. Tomorrow it’s back to boundary busting business…and you have no idea how much I am looking forward to tomorrow.
I’m almost there. I said I was going to write every month for Judah’s birthday and I’ve done it. I’ve filled your news feeds with clinical information and a window to my soul. I’ve shared stories of heartache, and of life altering love. I’m already mentally preparing for the one year post. Just thinking about it about brings me to tears. I spend a lot of time these days reflecting, and honestly, it brings forth a pretty good size chunk of anxiety…so, I don’t want to go there… yet. Instead I’d like to keep it light this month. I’d like to keep my psyche out of the story because I’m in a fragile state thinking about where I was a year ago.
So, here’s some beautiful things I’ve learned over the last year:
Most children with Down syndrome are mainstreamed into regular classrooms. They have friends, go to birthday parties and get an education. I remember when my little (but much wiser) brother came to see me in the hospital right after Judah was born. He works at a high school in a small town. All kids feed into this high school, so all students are enfolded into the daily deeds. He said to me ” Beth, you know, nobody bullies kids with Down syndrome anymore. It is almost like they are the ones most likely to NOT be bullied. They are protected.” It is so different from just a few *ahem* years ago when I was in school. Although this was the least of my worries at the time, I still stared at my new, almost foreign, little life and breathed an audible sigh of relief.(thanks Kris)
People with Down syndrome can do what we can do. They read and write and problem solve. They think for themselves and are not “always happy,” despite popular misconception. In fact, anyone who knows Judah, knows he makes the most adorable, freaking, frowning faces I have ever seen in my life.
One new friend Molly shared with me how her daughter told her she wanted to read. So, they hired her a tutor and read she did. Catherine is a determined little girl. She set her mind to something, and by gosh, she did it! No wonder we are constantly impressed by these miraculous little beings.
There is a boy named Jay Nothnagle who also had his parents hire him a tutor….so he could drive. He has his license and has his own pick-up truck that he tools around town in. He is not the only one, by the way.
You want more you say? 250 colleges have programs across the United States for people with Down syndrome. There are courses that include everything from basic life skills to child psychology. There is a foundation, ruby’s rainbow. They work tirelessly so that some even get a free ride to college. People with Down syndrome can now get married (a few even have babies) they own restaurants and they sell paintings and pottery. They are elected into office and break weightlifting world records, not Special Olympic records; world records. They model, act and live a beautiful life on their own. There’s another foundation, #changingthefaceofbeauty . This remarkable community spends their days urging store chains. Their mission is to include people with all abilities in their ad campaigns, and it’s working!!! How’s that for unmasking delusion?
90% of these wonderful humans with Down syndrome are not being born because of false information. Information that is the antonym of everything I’m trying to convey here. People with Down syndrome love their lives and they are advocates for themselves. They are also friends, brothers, aunts, sisters and coworkers. They are awe inspiring and they astonish.
All of this is in the realm of possibilities as Judah nears the ripe old age of one. There is so much he has already accomplished. So, let us all try to lay off the labels a little bit and instead let’s learn. Let’s learn how to separate a person from their disability and let’s let go of limits. You see, if we give our little kites an unlimited amount of string, who knows how high these babies can fly?
…and just like that he taught himself to sit up the day after his 11 month birthday
Finding The Joy 