I have to offer a disclaimer on this blog. If you saw the video I made on Facebook, then you will notice that the pictures here are pretty much the same. In my defense, I needed to get them out. This day was like an exquisitely wrapped gift erupting with goodness. I had to just give you a peek inside until I had time to open it and all the feelings could pour from my pitcher.
I’d like to start this with an analogy. Apparently, in Super Mario Brothers there is some thing you do and you unlock this secret underwater world. I don’t know if it’s a code like: left, right, up, down B, B, B., or a special hidden mushroom you find. I’ve never found it and it very well could be urban legend. After all, I think my brother is the one who told me about this little nugget and he has never found it either. Anyway, if you were a Super Mario Brothers junkie like us, then you understand the amount of endorphins released when you finally reached the next world……..let alone if you could get to an unknown world that people didn’t know about………do you see where I’m going here?
Having a child with Down Syndrome is that code, it is that hidden mushroom. I have the privilege of being allowed in this secret underwater world that I did not even know existed! Let’s talk about getting the diagnosis. If you read Judah’s birth story, you now understand that it was a devastating blow and it was filled with: smiling, crying, caring, family and friends. What you don’t know, was that it was also filled to the brim with strangers. It was people who were a friend of a friend or part of the Down Syndrome community. It was our Facebook acquaintances who had someone in their life with a disability and people with DS blogs. All of these people all came rushing to our aid and they offered something no one else could; experience. These kind, knowing souls went out of their way to promise us that we would find joy. They gave us much needed advice and prayers when our Judah was sick with RSV (that’s a whole different story for a different time.) They sent us information, names of doctors and they bought us books. They embraced us with open arms and held on tight until our hearts could heal… and they knew it would. I didn’t quite grasp the massiveness of it then, but now, my heart feels so full it pushes a lump to my throat; that one that keeps climbing until tears are brimming. Now, you tell me…when have you ever had a rough day and had complete strangers flock to save you? Things like this do not exist in the regular world. We do not reach out to friends of friends to tell them that it’s okay, they’ll find another job or be able to fix their car. We do not message strangers to say that they’ll eventually be able to handle the loss of their loved one (or pet) or that they will someday have the family they have always dreamed of. This only exists in this secret world and when you are one of the lucky few who have received it, well then, you must also release it. I now have an obligation to pass around justified kindness and it is the best damn feeling in the world.
Some of my first experiences with Down Syndrome were on social media. As I sat in my hospital bed, Bobby on his cot and Judah snuggled in his glass bassinet ;we researched. We searched. I took to what I knew. Pinterest and Instagram gave me comfort as I found many who shared our story. The first blog I read was Kelly Hampton‘s and if you haven’t read Nella’s birth story, I recommend it. The beauty of her writing is intoxicating and the similarities to what we went through were remarkable. Actually all the people I found share similar scenarios. It is so wonderfully weird. There were many who thought they knew during their pregnancy and even more that shared our grief. Since those days in the hospital bed I have connected with so many more IG families. The result has been enchanting. I have never found so many good-hearted people in my life and am proud to share this journey with them. I am a better person because of them. When you see people like @rubysrainbow, who raised $121,000 in less than a month so that kids like her Ruby and my Judah can go to college… you want to do more. There are brave souls like thatdadblog who chronicles his journey with Will through hilarious pictures and touching YouTube videos. nothingdownaboutit and @meeshellphoto are absolutely stunning on the outside AND have a heart of gold. They share their journey through photography and blogs and raise money to help awareness for their boys. @happysoulproject is home to a darling princess named Pip. Pip’s mommy blogs, has a shop, does appearances and dedicates her life to helping others see life a “wee” bit differently in Canada and all around the world. There’s @lifewithrubyandconner who has adopted two littles with Down Syndrome and is an advocate for adopting those with special needs. Beautiful @nicoleoreste does not speak any English but our sons are the same age, share the same magic, and have made us break through the language barrier. @gabe.the.babe.and.co is my guilty little pleasure because that kid is so damn cute I could look at his pictures all day (plus his mom is hilarious.) I could go on and on about the different people I know in this world who’ve shown us so much. There is a model who has a son with Down Syndrome and siblings that rave about their brother or sister. There are countless warriors who share their stories of hospital stays with an uncanny way of still making you laugh. There are athletes and wine drinkers and most importantly, there are children who’s families love them in the grandest of ways. There are adults with Down Syndrome narrating a rich and full life. It is all there for the taking. Every single person is extraordinary. It’s not quite unicorns pooping rainbows, but it is damn close. It is a reality that I never knew was. It a place where people are generous with their stories,their hearts, their time and their commitment to this cause. Again, I have the honor of springing all this goodness back into the universe and it brings such complete contentment.
….And our family and friends, oh my dear family and friends. Well, they have the code too if they want it. Before Judah, I can say our relationships were like an angel food cake. They were light, and sweet ,and well… fluffy. Now our relationships more resemble a molten lava cake. They have layers and decadence and gooey goodness is just dripping everywhere. Everyone I love is dedicated to this cause. I keep trying to come up with my own words but I keep coming back to the Counting Crows lyrics “…and the kindness falls like rain,” except this kindness is a fecking monsoon!!!
Last but certainly not least, this day. World Down Syndrome Day. March 21st 2015. A day I never knew that was. A day that now will be significant and fufilling to me for the rest of my life. It was, in Calvin’s words, it was just marvelous. We rolled in deep…. Bobby, Calvin, Judah and I made our way, as well as my oldest and dearest friend Kristen and her daughter Emme. As we arrived nearer to the event, grown up catepillars danced in my belly. Tears welled up in all of us. They welled in anticipation, in the love we know we would be met by, in how far we had come. Gigis Playhouse put on the luminous event and their blue balloons bopped everywhere. My brother’s family and some friends beat us there. I swelled as I saw them embrace this new normal. They dove right in. They bought raffle tickets and waited in line to get the kids’ face painted. Get your shiny yellow slickers folks, that monsoon is coming again. Then…. a woman looked at me bleary eyed and longing. She ogled Judah and for a minute, I thought I knew her. Oh, I knew her alright. She had just found that hidden mushroom. She said that she just had a new baby with trisomy 21. In my overwhelmed state I forgot for a quick second that trisomy 21 was Down Syndrome. I rarely hear that term and this heart wrenched woman bewildered me. She was the first person to approach me at the party. I was taken aback, but recovered quickly when I realized she was in the club. I wholeheartedly congratulated her. This, by the way, is the only acceptable response when someone tells you that their baby has Down Syndrome. Another lesson learned (and felt) when you enter the underwater world. So, I scanned the room for this woman’s baby and asked if he was there. She told me he was born early, in the NICU and had heart problems. All the while she managed to barely keep it together. She was at the event!!! This I did not swallow until much later, but wow….that is acceptance and commitment at its finest. We talked. I threw it all out there. I consoled her, told her how far Judah had come since his illness, I assured her, I hugged her….and just like that my ticket had been punched. It felt incredible because it was my truth and because I knew it would be hers.
Gigi’s was fascinating. Happy people floated everywhere. Some knew Judah already. Many asked to hold him or who he was. I won 2 raffles!! After, I felt bad like I probably should have given one back for a redraw. In my giddy state I literally wasn’t thinking. I owe ya one Gigi’s!!! I looked at the many pictures I tried to take during the event and I focused on the background people, the ones I didn’t have a chance to meet, the ones I didn’t know. I searched to see if I was missing something and investigating for a hint of despair. There was none. This world really does exist!!! Now , my journey is still young and I am sure there are challenges that we will face, but I am so sure they will be outweighed by the splendor. With the apprehension of a too new couple moving in together, I want to say “I wouldn’t change a thing.”
As I googled “inspirational music” to pair my pictures for my slideshow, I found a gift. This gift was handed to me by a gentleman named Bill Withers in a song called “Lovely Day.”
I picked the song because the day really was lovely. I only closely listened to the song later and this one verse catches my breath still:
“When the day that lies ahead of me, seems impossible to face
“When someone else instead of me, seems to always know the way…..”
My Judah has always known the way. He has always held the code and he is the reason I will gladly spend my life paying forward his gracious gift.