Write a one-sentence letter to your younger self. 💌
Write a one-sentence letter to your younger self. 💌
The stroller. Judah no longer fits in a typical stroller. We rode out that double stroller deal for as long as we could… but being that the little brothers hold a “healthy amount of competition” it was time to let it go before someone got hurt. So, I looked into getting Judah his own sparkly new stroller. Judah can walk. He started walking at 18 months and his physicality is a beautiful strength of his….too good perhaps. I’ve mentioned before that Judah has elopement. Just as when a couple “elopes” they run away to get married, Judah runs. He doesn’t look back (unless it’s to laugh at you chasing him) and he gives absolutely zero about danger. Therefore, my little eloper must remain strapped, buckled, harnessed, and whatever else they got, into a stroller situation. Because I only know what I’ve been through and I have no shame in my game, I questioned my most favorite community. I asked others via social media what stroller they used for their child. A friend reached out. She’s a few years ahead of me in this game we call “extra chromosome livin” and she sent me a link about the stroller. The cost? $545.00 and an extra $70 for the foot rest AND an extra $70 for the canopy top. My friend let us use hers when we went to Disney to see if we liked it. It was ah.maz.ing.
Look. I don’t want pity or a go fund me or even anger towards the price. I am writing this to bring awareness, because if I didn’t have to learn this stuff firsthand I would never know these secret scenarios that special need families live with. There is a possibility that Judah’s services will reimburse us if we buy the stroller but I only knew THAT from poking around. And don’t get me started on services and the hoop jumping I’m still doing to get all that in place. It’s an insane amount of paperwork, trial and error, who you know, waiting, bitching, … you get my point. Here’s my main point though. Special needs are just that. We need extra, different, more expensive stuff. It’s the only way to do life, unless you never want to go anywhere or have any fun. If you know Bobby and I, you know that is not an option.
So all these extras have me thinking, what if you don’t have an incredible friend who shares her wisdom? Or a credit card to put a stroller on? Or extra cash? Or have a computer? What if you don’t know how to fill in the mounds of paper work or what’s out there for your child? . I am so vigilant about all things Judah needs because I don’t want to miss a step. I want him to have the best shot at this crazy life . But I have opportunities. I am lucky in that way. I feel for the people who unnecessarily struggle because they just don’t know.
One very expensive stroller makes quite the metaphor for our journey: we are just out here wandering around, trying to navigate needs of our special soldier and constantly being rescued by others taking a similar trip. It is a small price to pay for this decadent, fulfilling life and it is an honor to pay it forward to all those who come after us.
LET’S TALK: What is one service that would make your life easier?
You Are So Damn Special
If you live in the world of disabilities you’ve probably uttered one of the following phrases:
God does not give people with special needs to special people. I am not special.
You just do what you have to do .
You would do the same thing.
We are just a typical family.
…or any variation of the sort. How do I know? Because in my moments of humility while navigating I have said the same words. I’ve always felt like I’m reading the cliff notes to keep up with the ever changing world of #DownSyndrome and therefore unable to deem myself “special.”
Well, I’m here to call us out on all of our mild mannered modesty because I’ve realized that we are special damn it and we deserve that title.
No, Not everyone can do it. Not everyone is able to raise a child with a #Disability. Not everyone will. Some torn souls will make the heart wrenching decision to put their child up for adoption. And some of you reading this may be one of the special souls who chose to adopt. These are the stories that warm us…..But, let’s be honest. There are entire countries attempting to prenatally diagnose disabilities and www.cbsnews.com/news/down-syndrome-iceland them. So, the fact that you show up everyday is not ordinary or what anyone would do. You are as unique as the lovely human you are raising.
My son has Down syndrome. I was once told that it was the “Cadillac of disabilities” and I was told when he was just a week old that out of all the heart breaking disabilities , his is also heart warming. My point is this. Down syndrome isn’t easy. In my life there is There’s elopement, language delay, communication barriers ,safety issues, #SocialAnxiety and many many respiratory infections. And while I believe I deserve a pat on the back for not losing my shit on the daily, I do realize that in the world of disabilities there are more difficult roads to travel in not so comfortable vehicles. Regardless, we deserve those prayers, worry free nights out, compensation and celebration of how damn special we are!
….Especially the incredible people who: clean and operate g -tubes, give shots, live in the hospital, fight for services, know their child is going to die, own a wheel chair accessible car, restrain their child when they are violent, never hear their child speak. The “parents” who are stared at, the ones who’s doctors begged them to abort and the ones who disobeyed doctors orders to not resuscitate.
When you are thrust into the world of disabilities you see the gamete. I’ve seen so much goodness from caregivers. Please do not fool yourself into believing your work is typical, ordinary or otherwise. It is heroic to sacrifice for others …even if you made them. It is Godlike. It is other worldly. It is special. You are different. You’re child is different. We are not the same. I am tired of wearing that mixed up martyr mask. We exaggerate the downplay with an “aw shucks” and a “not little ol me.”
Let me be your voice of empowerment parents. You are doing something big while you navigate how to care for your child with special needs. You are showing love and empathy and most certainly have become a kinder person in this world. You advocate and celebrate and educate. You are changing the very definition of special needs just by being you. You are changing peoples minds and hearts. You are doing so much more than just showing up. Do not shyly and humbly deny yourself the compliments you so grandly deserve.
Instead, do what you would tell your kid to do. “Hold your head high and be proud of your special difference!!!!”
I’m in Wonderland
And behind the beauty of his almond eyes, delicious secrets are hidden….on how to love, and be loved. Secrets of perseverance and small celebrations. Secrets that burrow down deep to make your soul better and your circle richer. It is all a glorious slip down the rabbit hole into the most perfect wonderland. #lifewithdownsyndrome #downsyndrome #joysofjudah #dontwakemeifimdreaming