building on the journey

building on the journey
Our family...just waiting to add our sweet smiling little girls!

Wednesday, February 6, 2013

every step you take

We all say, "Now, don't take this personally..." all the time, right before we make a really assinine remark. Yes, assinine. Think about it. When you KNOW you are about to ping on something that is precisely that, personal, you say, "now, please, don't take this personally." That doesn't excuse it. It really doesn't.

With that said, I often have to have really hard conversations with people about their children and I've learned that honesty is always better than being wishy washy. It's never easy, but when I know that honesty will help put a family and a child in the best position to experience success, it is the right thing and I can do it, but I also always want to make sure I truly understand exactly what "success" means to that family. The definition of "success" is very different for every family, but especially for a special needs family. I also often have to have conversations to explain my viewpoint as a parent of a child with special needs. I try to maintain a level of perspective to remember that while all children are special, not everyone can truly understand my, or any, special needs child or family. They don't really know what it's like to have therapy after therapy, week after week. Or, what it's like to worry about crazy nonsense on the internet about vaccinations and to worry about your child's heart condition and the nut down the street who is afraid of thimerisol and canary pox so didn't vaccinate her child for influenza, whooping cough, chicken pox or measles, mumps and rubella. They don't know what its like to go into sessions with professionals that are pretty much 100% centered around all the things your child CAN'T do and not all the great things she CAN. They just don't really know. They sort of know, but not really.

But, it hit me tonight what had really been bothering me all day... well, for months, actually... A conversation has been bouncing around for months and I really, REALLY try to separate my job from my Mom job... but, the true value I bring to my job, is my Mom job. (at least from my perspective, I'm sure my peers disagree, since I pull out the soapbox and jump up and down on it, on a regular basis) But, I get it. I get the "thing" that our athletes and parents need from sport... I get why what I do for my "job" is so essentially important. It's really not about the medals, or, sorry work, the sport itself, it's about the tiny, everyday victories that led to that medal and to being on that field.

You see, I know what it's like to work for months on end on the most basic skill with my daughter and to see her "fail" over and over and over and over and over, but within each "failure," there is success. RayLee walked at 21 months of age... months after most "typical" children and slightly before the average age of walking for most kiddos with Down Syndrome. It was 21 hard-fought months, filled with tedium and therapies, and "baby pilates," as we called them, and hour upon grueling hour of teaching her to brace, to pull-up to place her feet and to let go.... just to fall one more time, or even to refuse to even try it because she too was afraid of one more "failure." Then, to add salt to the wound, we watched the "typical" children of our peers walk with barely any coaxing. Shoot, Sophie, our youngest, walked at 8 months and we didn't work with her one time... she naturally learned to walk... it was, quite literally, the next step of her development. With RayLee it was hard-won and worth every single second. That is how RayLee learns every single little skill. EVERY SINGLE ONE.

So, when we have a competition and the athlete tosses the ball in the air 20 times and doesn't make contact once, I get it. I understand why that tedium that others see as a waste of their time is so valuable. There is a mother and/or father waiting somewhere in the stands or along the sidelines who is so absolutely beside themselves that she is out there holding a racquet, standing on her own on the court, grasping that ball, tossing that ball... The victory is in being there. The victory is in the grip. Do you know how long some individuals have to work to even be able to grip the ball? Have you ever tried to teach someone to grip a ball? Have you ever known the frustration, the fear, the victory of watching someone try to learn something as basic as gripping the ball? The victory is in the toss. If you think the grip sounds hard, try the toss... The victory is in every single time she misses, yet tosses again without ever giving up. The victory has very, very little to do with her place of finish or whether she gets to go on to a higher level of competiton. The victory was the walk out into the spot light, the stance, the grip and the toss... who cares about the hit, the victory was in the being there.

Right now, we are working on a million and one skills at once as RayLee approaches turning 4 years old in 6 days. We spend the evening working on the enunciation of everything because while she is at least starting to really try saying more words, it is a challenge to get her to speak around anyone other than our immediate family and her closest teachers because she is so frustrated when she is not understood. We also focus on holding her pencil correctly, as her tiny little hands barely have enough muscle tone to hold her pencil in a toddler grip, much less the true strength to master the appropriate penmanship grip that designates she has advanced to meet age level expectations. At the same time, she has yet to really master climbing up and down stairs, so at the age of 4 years old we take every opportunity to practice the stairs on her own. The other night at a ballgame with very small attendance a guy said, just loudly enough to be, well, assinine, "why don't they just pick her up?" You want to know why? Because, guess what, this little girl has worked so hard to walk up and down the steps by herself that as she takes each step she quietly giggles and says, quite proudly, just barely loud enough to hear, "step." with the biggest damn smile you've ever seen. That's victory.

And, while a part of me wants to knock the guy's teeth out, another part of me is silently celebrating with my own ginormous smile because every little RayLee victory teaches me more and more about what is important in life. It isn't the smartass 3 people back, it's the two people right behind her that are also smiling with every step and intentionally blocking the jerk. It isn't the bad thing that happened at work or the friends who let you down or the pants that are a little tighter (or a lot) than you'd like, the important thing is every step she takes. Every smile. Every little, tiny, taken for granted success that other families don't even notice that we celebrate with applause, laughter and a lot of hugs and kisses.

So, someday when someone questions why my kid plays a sport in which she can't even hit the ball, I'm going to remember that little giggle, that ginornous smile, and that proudly said proclamation and I'm going to support every step you take, my beautiful little RayLee girl.

Keep teaching me, I still have much to learn.


  1. Very inspiring Jill, and well written. What a great mom and person you are! : )

    Emily (Bonnell) McCarthy

  2. Hello:) I started reading your blog because Tabitha caught my eye on the Reece's Rainbow website. We have a few things in common and I would like a chance to email you if I may:) I am not familiar with blogs or how any of this works so I would prefer not to leave a bunch of information here. I think I signed up correctly and your comment back will go to my husband's email account (he is the one with a google account and I can't figure out how to do it otherwise) and then I can respond.

    Whitney Wassink

    1. Sorry, I don't mean to seem completely paranoid, but do you have a facebook account or anything for me to verify you are who you say you are?? Sorry, just always a little cautious of the anonymity of all of this. Thanks.