I don’t know if you are watching any of the World Special Olympics, but it is chock full of inspirational stories. It is bursting at the seams with determination and it’s spilling over with promise, pride and people prevailing. This is why I will not speak of Judah’s struggles this month. I will not dive into the pools of possible limitations. I will not elaborate on hardships or strife. Instead I will focus on us as a family, what we need from you, what will ultimately aid in Judah’s success and maybe even send him to the Olympics one day.
1. We are not special. We are not heroes, or brave or extraordinary. We are just a family who loves each other. We will fiercely protect our child as I know any of you would.
2. You can ask us about Down Syndrome. We certainly do not know all that is Down Syndrome but we are learning fast…and, as I tell my students “if I don’t know I’ll find out for you.” We are not frightened, embarrassed, or offended if you ask. In fact, we prefer it.
3. We are different but we are the same. We are, as my new favorite saying states: “more alike than different.” We still like a beer on the front porch. Our world does not spin on its axis revolving around Down Syndrome. It is a part of who we are now and we don’t mind talking about it….but we also still like: flip cups, family, friends, fun.
4. You can treat Judah just like any other baby. He doesn’t need extra coddling or comforting just because he has an extra chromosome. We still put him in time out, (kidding) lie him on a blanket while we do dishes, take him everywhere we go and let him self soothe to sleep.
5. Please ask us to hold our son…or if that’s not your style, ask to look at him. He will not break and let’s face it, sometimes his parents need one.
6.You don’t have to pity us. We are fine. In fact, we are better than fine, we are enlightened; enchanted even.
7. Thank you when you say you’re proud of us, but really, we should ALL be proud of each other for raising children. It is a fruitful yet formidable job. We all deserve a hell of a lot of praise for just keeping these munchkins alive. Not to mention being the reason they flourish.
8. Help support us supporting Judah. Misconceptions and misunderstandings swirl around our society. You know someone who has a baby with Down Syndrome. You have witnessed the testament to what Down Syndrome is not. You have the power to destroy the negativity if you come across it. The fact that you are reading this tells me that you are Judah’s advocate and I love you for it.
9. Just keep doing what you’re doing. I get real sappy when I start talking about how sensational everyone has been. It exceeds everything I think I ever could dream up…assuming you could dream up a situation such as this. Tears show up every single time. So thank you. Thank you for loving our son and us. Thank you for giving us time to process. Thank you for not deserting us when we were new to the racket and things were messy. Thank you for being our family, our friends, our rocks. I know It sounds cliche. It may even seem unfathomable,but, Down syndrome is the best thing that could’ve ever happened to our hearts, our faith and our perceptions. We truly are #downsyndromeblessed.
I started this post as ” Dear change, I don’t like you very much,” but then it occurred to me… this blog is meant to embrace joy. Not only in obvious events, but also the ones where joy is fully suited in camo. This isn’t that. This time shouldn’t be tear evoking. In fact, It should be a celebratory occasion….but I blink back some sadness none the less. Because, you see, change and I have never been very close. I hide from it whenever possible. Instead I cling to its nemesis: routine and familiarity…but I’m here now change. I am ready and the branch has been extended…
So it was like this…. like when you get your eyebrows plucked, hit the gym for the first time in a year, give up cheese, quit smoking…or any other painstaking process done in the name of self improvement. You come in all brave and excited ; imagining what the final product will be like. Then, it actually happens and it hurts. You have growing pains. You are sore and you are mad; tantrum mad. Although you’re relieved to know , you wonder why you even tried. Because in your mind you were just fine before and all this refurbishing seems like nonsense now.
This analogy most accurately explains all the sensitivities I have as transformation and I hold hands…..We are moving. I’m leaving my beloved Tipp hill after 17 fine, fun, fulfilling years. It is all glorious and exciting. But it is also stepping on the heels of losing my dog; another unsolicited, conference call with change.
Vinny stood for a time in my life. A time when I made the decision to take full responsibility for another living being….a time of independence, a time of becoming a grown up; sort of. Tipp hill represents the same. A time when I left the nest for the last time . A time when I made new friends who have become old friends. A place where life is a walking cliche of the TV show “Cheers” because everybody really does know your name. I am compelled to leave those times behind now and being forced never is favorable….but, I must march forward. I must chase change down and ask it to be friends.
As open spaces became harder to find in our house and we became engaged in an obstacle course daily…we knew it was time. When bundling, prepping and moving the kids to the on street parked car took longer than driving them to daycare…we knew it was time. When we looked around Tipp hill to find ourselves high school football players, reliving our glory days…we knew it was time. When our baby boy was born with special needs and we wanted him to have some back… it HAD to be time. Judah was the final straw. The camel has a broken back. It was decided that Judah will go to school with all of cousins. He will roll in the same district as the children of our friends. They will all be a force in Liverpool and when he enters high school, nobody will mess with Judah Craver.
So you see, all the logic signs are brightly lit arrows, leading us to the move …our new home is lovely too; really it is. But, no matter how you slice it, I still glare at change with distrust. I don’t do cartwheels over the extra space or the good deal. Instead, I am sensitive and sentimental and so I mourn all that will be lost. I linger on all that will be missed. I covet all that was.
I will be fine though. We all end up fine no matter what don’t we? A little more cautious maybe. A little more careful, pensive, protective, sensitive, sappy, possibly even jaded… but we all end up okay. Knowing that makes me more than okay. Mid mini-tantrum, our computer screen was like a beacon. I stopped to take in pictures scrolling of baby Judah in the hospital. Not hospital where my new baby was wrapped up like a taco. I’m talking tubes and machines everywhere hospital. That’s when the bricks came tumbling. This move is nothing. It is not a major event. It is a test where I will come out learning something. Not a battle to be fought. I shook my head as if to say “get over yourself.” That’s when I went to bat for change…for a change 🙂
I will be more than fine actually. I will be in love with everything new house, I know me better than anyone. If there is anything I am, it is self aware…so I know in time I will cannonball right into the future. That being said, the process cannot be rushed. I will not go quietly and embarrassingly, I will not go gracefully. Losing a piece of yourself, a part of your past, is hard, no matter how bright the light is that lay before you. So here’s to one for the nostalgic, sensitive ones. Our path waits for us and we must march on… but we cannot be rushed. I need a little time to contemplate on a bench nearby. Not to worry change, I promise I’ll catch up
Well it happened it again. Those of you in the club know what I am about to reveal. You must. After all, I’ve heard it more than a few times and I’ve just been added to the roster. I can’t even imagine what you magical, munchkin, veteran parents must have witnessed.
Okay, let me set this up correctly. I recently was referred to a doctor for some belly stuff. I never met the guy. He was a stranger with a stethoscope and we were in the ” getting to know each other phase.” When he started rattling off questions about my job, if I was married and had kids, I thought we were having a chit-chat. I returned the niceties and asked about his family as well.
“What do you got?” he asked.
I replied, “2 boys.”
He countered: ” are you gonna try for that girl?” ( man people have balls!)
Me: “No! We’re done.”
Then the Doc: “how old?”
Oh, my turn…(meanwhile, I was treading water, head barely above it, secret still safe) “3 and 7 months.”
Doctor Ballsy: “Oh they’re young you can still go for that girl.”
Me: “well I’m 41.”
Prying Doctor: “well what do we give up at 41 now?” ( what the hell is with this guy anyway) Next, the bombshell:
“the boys, they’re both healthy???”
Yes, yes they are!!! (that’s what I should’ve said)…Instead, “Yes. My 7 month old has Down Syndrome but so far he is very healthy.”
Then, out came the doctor’s compressed face, like he was smelling something bad… “ooooo”
(Nice, doc. Smooth as a scouring pad.) Immediately I went on the defensive. “He is just lovely and healthy and getting therapy and doing lots of amazing things”
(Wait for it) The Dr.’s response: “so he has a mild case” (I mean did this guy even go to medical school?)
My rebuttal: “yes so far he is pretty high functioning” …In my eyes it is not ignorant for the layman to think someone can have a mild case of Down Syndrome. In fact, I asked Judah’s pediatrician the same thing… You can’t, so you know. You either got the chromosome or you don’t…..BUT for a medical professional to ask? That boggles my mind. If I wasn’t so baffled I would’ve chuckled.
At that point came the dreaded question. The one loaded like a pistol ” Didn’t you have the test?”
You know what his question means? It means you must not have had the test because if you did have the test you wouldn’t have had the baby. You must not have had the test or it was wrong or something??? You can see it in the Dr’s eyes, coaxing, “please let that be it.” In that moment, I would’ve given a limb to be one of the great ones who found out early. I would have relished the look on the doctor’s face as I filled him in on how I had the test. Sadly, that is not my story. I wanted to direct Dr. Misinformed to my blog, to pictures of Judah, to present medical practice…. but I didn’t. I just answered :” no I did not have the test.” Inwardly, I pitied the ignorance of this medical professional. I felt bad that he would never “get” what a game changer my Judah has been…and I remember smugly thinking ” ha,ha I’m smarter than you.”
Unbelievably, this was not the end of my head shaking, cringe worthy experience with the Doc. As it turns out, the doctor wasn’t quite sure about my condition. So, he recommended a procedure and he boldly declared: “I mean, we don’t want to chance it. You took one chance and that didn’t work….you know when your son was born.”
Okay so I have really kept my cool the entire appointment, but at this point, I kept picturing myself leaping off the pleather table and wrapping my hands around his neck. After I envisioned that about seven times (all the while he was still obliviously rambling) I moved on. My next thought: wow is this going to be an exceptional blog to write. So, thanks for the material Doctor Unenlightened.
Now please don’t misunderstand. The doctor wasn’t exceptional and the experience wasn’t exceptional. The opportunity to shine this light, however, was most certainly exceptional. My very own primary physician told me he was “very sorry” and asked if I “had the test,” My OBGYN’s eyes darted everywhere but to mine as I spoke of Judah in his early days. My mother-in-law told her Doctor about Judah and that Dr. asked if we gave him up for adoption. Yet, after every story I am still surprised. How is the medical community still so gravely uneducated???
I want to make them hold my little Bubba. I want them to see that grin that stretches across his entire face. I want them to watch his therapy sessions and see how hard he works. I want them to smell that warm, sticky-sweet formula breath on their cheek as he gives you kisses…and then, I dare them to ask me if I had the test.
Since I cannot traipse all over Syracuse making doctors hold my baby, I write this. I hope and I pray that Judah is shattering perceptions. I know that he is breaking boundaries and conquering hearts. I know that we are winning . Something else I know… we still have a lot of work to do.
Remember that one time when you had to ride the school bus with no one you knew? Remember when you moved to a brand new town? Do you recall how exposed your nerves were when you started that new job or a when a familiar face was not to be found on campus? What about how timid you felt when you sat by yourself at a restaurant while laughter swirled around you? Remember the way your feelings swallowed you whole when you felt alone, frightened, inferior? Ok, so those feelings to the tenth power, that is how you feel when you enter the new world of parenting a baby with Down Syndrome.
Now, think about that first warm smile you finally found across the room. Remember how it melted your fears into a puddle at your feet ?Or when you spotted a familiar face and sighed a relief that made you actually weigh less. What about when you shared one lunch with a new friend….. then two, then three and you wonder why you were ever so scared in the first place? Think about how some of your loneliest days were followed by meeting some of the very best that you have ever known…and that is what GiGi’s Playhouse means to our little Craver family.
It all started on World Down Syndrome Day in March, just four months after our peanut was born….and while we went to the event, twenty people deep, hoping our family and friends would shield us from any pain… we didn’t need it. We loved the support, and soaked it all in ceremoniously but we did not need it. We were met with knowing smiles and cozy handshakes; hugs even. We won gifts, exchanged stories, and while we protected ourselves by being with the ones who loved us unconditionally, we saw the joy that surrounded us. Others we didn’t know dressed in blue and yellow with their mismatch socks and they rejoiced, celebrated and did nothing less than beam about knowing someone with Down Syndrome. On that day, frowns were erased and replaced by giant, “they make it look so easy ” grins.
Our next encounter we braved solo. Bobby, Calvin,Judah and I packed ourselves up in the van and attempted GiGi’s for open play. I was nervous, jittery, afraid I would over-talk as if to compensate. So I overcompensated, wiped beads of sweat from my brow and had the time of my life. Hours escaped as I introduced, played games and took in beautiful black and white photos of others with that common chromosome. Calvin had a ball too. He didn’t notice a thing except for toys and smiling and friends. Ahh, a child’s life… that precious time before society mandates who is acceptable. We spoke to one marvelous young lady named Julie. She was an awe-inspiring advocate. She traveled the country and proudly gloated about her accomplishments. She handed me her heart shaped business card and she just happened to have Down Syndrome. She was a force. The whole ride home, Bobby and I could not stop sharing all of the virtue we witnessed. When we chatted about Julie, Bobby said that if he was speaking to her and not facing her, we would have never known she had Down Syndrome, so true,…..but she did and she was noble and she was our friend and everyone was majestic and they made me downright giddy. My heart lightened even a little bit more and I remember deciding… yes, this will be my cause too. It is everything that is right about this world, and I want in on the feel goods.
So, when GiGi’s had a family fun night , it was only fitting that we roll up with the all 18 of the Shore/Craver crew. We came in hot, with our traditional dishes to pass and 7 kids under 7. As we kept filing in I thought “uh-oh, maybe this is all too much.” After all, we were brand new to the world of the Playhouse and everything Down Syndrome….yet we were taking over some serious real estate. Luckily, just as I anticipated, everyone was terrific. This is not to say that we were flung into the spotlight where everyone ooh’d and ahh’d over baby Judah. No, it was better than that….we were just part of it. People grinned at us and we prattled on about the food, about the kids, about our jobs. Meanwhile littles of all ages and of all abilities whirled around us doing their kid things. Some things nice, some naughty and all so very ordinary. It was a peek into our future, a future filled with normality and specialty all at the very same time.
I think our latest rendezvous was specifically designed just for Bobby and I. It was a glorious fundraiser held at The Bull and Bear Roadhouse. It was complete with celebrity guest bartenders, a silent auction and shots for sale to benefit GiGi’s . Unexpectedly, even some of our friends showed up!! We were sponges at this event. We were able to see the reality that there is a part of life without the kids and without the guilt. I mean, lets not act like Bobby and I haven’t enjoyed an adult beverage since our little prince was born. We all know that would be a fib….but something spectacular happened here. Other parents who had children with Down Syndrome were letting loose too. They were reminding themselves that they were a couple once (first) before they had a child with special needs. They were celebrating the spark that brought them to it , the one that would guide them through it….and they (we) were having loads of fun doing it….Every giggle and high five screamed “you are allowed to have fun with this life.”….and thank goodness, because I can’t even begin to envision a life without fun.
Speaking of fun…….the reason I brought you to this little blog post today. I promise I won’t usually have ulterior motives, but on this day I do. Now that you know what GiGi’s Playhouse means to our family, I am hoping you will want to see the magic first hand. We have created a team for the fun run on August 22nd and it is appropriately named Team #joysofjudah. Our team will be running (I will be walking) smiling, cheering and supporting… all to help out Gigi’s Playhouse and ultimately our Bubba. Please join us on this day, we would LOVE to have you… and really, who doesn’t like smiling???? If you can’t accompany us, please consider donating to our new friends, our hope, our future. Judah thanks you from the bottom of his big, loving heart!
You can join here .
As always, thank you for loving us. xoxo