There's something that I have been wanting to talk about. Needing to talk about. And I decided that today - with my head foggy from a cold that Brian and I have been sharing - is the best day. Okay, maybe it's not the BEST day - this may come off as incoherent and nonsensical. Work with me, okay?
I am just a Mom.
Special needs Moms (and Dads!) are often put up on a pedestal. We get "God only gives special kids to special people" and "You're a saint" and many more very sweet platitudes that, frankly, just aren't true a lot of the time. I've read horrible stories about special kids who were given to simply horrible people that abuse and neglect them. And I've seen news stories about special needs kids whose parents are, shall we say, less than "saintly." So I always took those compliments with a grain of salt and told people, "If this was your child, you'd treat him just as you treat your other children. It's just something that becomes normal in your family! You do what you have to do to help your child."
But lately - since Gavin died and while my readership has grown - it's gone into overdrive. Everything I post... every photo I share... brings out the excessive compliments. I'm amazing. I'm so wonderful. I'm so fashionable and have movie star looks. Okay, no one said that.
It's making me uncomfortable.
I really, really don't want you to put me on any kind of pedestal or feel like I am any different than you. Because truly, I'm not.
On my Chasing Rainbows Facebook page, I've been sharing photos of Gavin from the last five and a half years. It's a slow process - I'm only on year two!! I've also been sharing things that we've used to help him... that we created to help him... that he used in therapy, etc. If I let it, the comments could easily explode my ego. But I know something that many of you don't.
From the day we brought Brian home from the hospital - when Gavin was 15 months old - we have had help at the house. We had an aide for Gavin Monday through Friday for the whole day. This allowed both boys to get attention... allowed me to feed a baby and know that Gavin was getting fed at the same time. It made it easier to take lots of photos and capture every moment. Most Moms don't have that and I know that we were very, very fortunate. There were times that I felt sad - even ashamed - that we had helpers. When I would wake up with severe stiffness from my Rheumatoid Arthritis and had to rely on these wonderful women to help me with the boys - it sucked. But having someone here all the time also meant that they really got to know the intricacies of Gavin's care and feeding and therapy schedule. You can't just hire any babysitter when you have a special needs child. They would need a couple weeks just for "Gavin orientation." We were so, so lucky - and we know it.
From the day we brought Gavin home from the hospital - the second time, when he was about five months - I've had a therapist in the house nearly every single day. Know what that means? I learned a lot. I got a lot of great ideas. They showed me ways to help Gavin... and showed our helper how to help him. Many Moms don't have that and I know that we were very, very fortunate. I've had a few original ideas over the years - clever way to help Gavin. But really, many of the things we did were ideas from a therapist, a teacher, another special needs parent.
Gavin's entire life was a team effort. It wasn't just me. This blog is mine - and I write from my perspective - and it seems very I, I, I. But there is also Ed. I try to maintain his privacy as much as I can and I wouldn't presume to speak for him which is why I don't write "we" as much. You should know that he became a Dad the second Gavin was born. He had barely held any babies in his life before Gavin - and there he was in a NICU with a baby who was tiny and had tons of tubes and needed a lot of help. Nothing seemed to phase him. He is a total hands on Dad to both boys. He even changed jobs after nineteen years (NINETEEN YEARS!) because he wanted to be home more to see the boys at dinner and be able to put them to bed. Many Moms don't have that and I know how very fortunate I am. How fortunate the boys are.
And Gavin always had an army of doctors and other practitioners that were there to support US as much as they were there to support him. Doctors that gave me their emails. Doctors that I cried to. Doctors that could see the bigger picture and helped me to see it, too. Many Moms don't have that kind of support... I was fortunate.
I am just a Mom. Just like you. I am thrilled beyond words that my blog has so many eyes on it now - but not because I want or need your praise. I feel like more eyes mean more people that have the chance to be affected by Gavin's journey... to be changed, even. I feel like more eyes mean more people that can learn all the things we learned. Gavin wasn't supposed to go out like this - he was making so much progress and we worked so hard to get him there. Ed and I could tell that he was on the brink of something big before he died. He had just started walking a few months before - something many never thought they'd see. We really believed he would have been communicating this year. For sure. It is bringing me comfort to share everything I can in the hopes that other parents out there - especially if they don't have the support that we had - will find new ways to help their own superhero.
I am not the superhero. I'm just the messenger.
So... the take home message tonight is this. Don't spend your time thinking that I am better than you in any way shape or form. Remember - I didn't do any of this alone.
(But p.s. - if anyone wants to tell me that they envy my fashion sense or that I have movie star looks, that would be cool. I would know you were lying - but we can keep that between us.)