On August 5th, 2013, I was inducted into a VERY exclusive club. This club was very different than any club I ever thought I wanted to be a part of. Hell, I never even knew this club existed before then! What club am I talking about? It's the club you get automatically inducted into when you are blessed with a child who has special needs. It's an elite club of people who get the see the world a slight bit differently than the rest of the population. I, and many others, call this club "The Lucky Few", and I couldn't agree more with this choice of name.
There's this moment that I am assuming every new parent has when they find out their child is going to be born with Down syndrome. There's this moment where you feel like this imaginary link between you and all your friends and family that have had children before you gets ripped to immediate shreds. Every single thing that you thought you would have in common with them in regards to being a parent melts away and you are left with this cavernous fear of the unknown. You feel like nothing will ever be the same for you. You feel ... different. You feel ... isolated. You feel ... flipping terrified! Your entire imagined future has just taken a serious detour into the unknown.
For me, in this moment of feeling like I was literally drowning in my own anxiety, that's when I turned to the one place I knew I could get some answers. That place, for better or for worse, was the internet. You see, one of the biggest, and shallowest, feelings I was dealing with after finding out Ben had Down syndrome, was the feeling that no one would love my baby. I knew I would love him, I already did love him, but I was terrified that no one else would. I was afraid they would shy away from him, not want to hold him, not want kiss him, love him, cherish him the way everyone does with new babies. I was terrified that everyone would think of him as ... I'm embarrassed to even type this ... something to be pitied, something to be "sorry" for. I mean, how come you never saw babies with Down syndrome? I had NEVER seen a baby with Down syndrome as far as I knew. I knew lots of adults, but no babies. Why was that? Where were they all at and why did they suddenly seem so hidden? I needed to know. I needed answers.
I opened up my browser, and I typed in "baby with Down syndrome" into Google. The VERY first picture, as many of you know, was a picture of sweet Pip from www.happysoulproject.com. Pip was sitting there in her diaper, on her stairs, with the biggest ear to ear grin I had ever seen. I immediately started stalking the blog that this beautiful little light was shining from, and my heart melted. PEOPLE LOVED HER. EVERYONE LOVED HER. This little beauty was loved by so many people because of who she is and what she happens to have takes nothing away from that. If anything, it makes her a little extra special. You can read more about that here or here.
Let's fast forward to many months later. I've had Ben and all those silly, outrageous thoughts are gone. I KNOW my friends and family love and accept him. I KNOW how ridiculous it was to think they wouldn't. However, there are still things that only those in "The Club" will understand. When I found Pip, she saved me. She LITERALLY saved me from heading down a deep path of negativity that I may not have come back from the same. I am forever grateful for finding her, but I am even more grateful for finding her Mama, Tara. Tara was the first member of "The Club" that I interacted with. Reading Tara's blogs and through comments back and forth, then emails, then messages, I found a kindred spirit. I found someone that didn't just have a child with Down syndrome, but also understood exactly how lucky she was to have been blessed with her. I found someone that understood how hard it can be at times to hear time and again what your child will or will not do. I found someone that understands exactly why you celebrate like it's 1999 every single mother scratching milestone that your child achieves. I found someone else that, without even talking to, I know just understands my story.
Once I found Tara, it was like I was hooked! I wanted more! I wanted more friends, more people that get it! I wanted to meet more people in this club I was just inducted into a short while ago! And let me tell you...I wasn't disappointed. I started The Down Syndrome Diary and now I have no less that 24 Moms and Dads that I am honored to call my friends and each and every one of them gets it. I can reach out to any single one of them any time of the day and ask anything. I can ask about skin problems, and eating troubles, and you name it... and they get it. The get why my worries are different than most parents, they get the nuance of this particular issue, and they just get me. I have parents with babies that I can bounce things back and forth with now, and I have parents of adults with Down syndrome that give me such hope and love for what my future entails. "The Club" is something to be reckoned with my friends.
Unfortunately, most of these amazing people I met live nowhere near me and our clubhouses reside mainly on blogs, Facebook, and Instagram. That's ok with me, I will take it. However, a few weeks ago I had the chance to meet, face to face, the first friend I made in "The Club". I grabbed my passport, hopped in my car, and headed up into Canada on a Thursday night to attend a fundraiser for Happy Soul Project. If you know me, you know just getting me out of my house on a weeknight is a task, let alone heading into another country!
I walked into this bar, by myself, knowing absolutely nobody. Over in the corner, I spotted Pip. I walked over and found her sweet little face snuggling up to her Mama, my friend. I gotta admit, I was feeling a little stalker-ish at this point, but I pushed those thoughts aside and introduced myself. I can't really describe the emotions I felt, but when you get to meet somebody that unbeknownst to them, changed the way you look at the life path laid before you, you get a little emotional.
A few hours later, once the hustle and bustle of the fundraiser slowed down, and once I got my fill of hugging and loving on Pip, we got to have a few beers and chat. My friends, there's just a peace you get by sharing your stories with someone whom has also walked in your shoes. I just can't describe it, but it's just ... peaceful. It just makes you feel whole. I just makes you happy.
On my way home that night I thought about "The Club". I thought about Tara's crazy friends that I immediately loved, I thought about the laughter echoing from Noal as we were playing Big Bad Wolf and allowing him to knock us out by blowing through a straw, and I thought about Pip reaching out and wanting me, a complete stranger, to hold her while Tara took a picture. Mostly though, I thought about how amazingly lucky I am to have found someone that I can look up to. You see, it's not just about Tara having Pip that puts her in "The Club". It's the fact that Tara knows that having Pip is the greatest thing that could have possibly happened in her life. It's because Tara knows, and lives her life showing that, in her words, "Down syndrome is the greatest blessing I never knew I wanted."
I love that I am in "The Club". I am so proud to be a member, and I know that I will spend the rest of my life doing everything in my power to be the advocate I know I can be. I do it for my sweet Benjamin, I do it for all the new Mamas and Daddies out there that might need someone to show them what "The Club" is all about, and most of all I do it for me.
T - Thank You for Leading the Way xoxoxoxoxox
