Parenting is the journey from your heart being inside your chest to living outside of you in another human being. The journey is an amazing one consisting of an endless series of hurdles. At the top of each hurdle, we as parents hold our breath as we hope and pray our child lands safely on the ground on the other side. You know the hurdles—first steps, a bike ride without training wheels, the first day of kindergarten, a sleep over at a new friend, heading to middle school, first dates, driver’s license and the list goes on. The thing is, though, as parents we know the ground is on the other side and even if the landing isn’t soft they will be able to get up and jump the next hurdle most of the time. Sometimes, though, the hurdle is a little high and the landing is harder than our child can handle and we have to hold our breath until we are gasping for air wondering if we’ll ever be able to breathe again but yet most of the time they eventually get up and jump the next hurdle. It is a journey of ups and downs and special memories intertwined with heartbreak. But most of the time we know the ground is there and they will eventually get up and continue on with the journey.
Parenting a special needs child means taking a journey too, but the journey and possibility that the ground is on the other side and/or that our child will get up to jump another hurdle is a lot less certain. I feel like we are constantly climbing a mountain but wow does this mountain have wicked weather and terrain. There are mudslides and blizzards and sheer rocks walls that seem near impossible to climb. Sometimes when we are lucky we have a support system that gives us the tools that we need to survive the harsh conditions; other times we are literally left out in the elements to our own devices. I have to tell you sometimesit gets pretty cold and wet and lonely out in the elements, but sometimes you come into a clearing and it is the most beautiful sight you will ever see. I can promise you that special needs parents never ever forget those clearings. We might know better than most how fragile that moment is and how precious those memories are because at any moment the landslide will come and we’ll be swept back down the mountain—how far down we never quite know.
You always hear the cliché “treasure this moment,” but unfortunately as parents you don’t realize that the moments might not always exist. Caden was a preemie, and although his birth weight and initial vitals rivaled a full-term baby, within an hour of delivery he turned very purple and was rushed away. Over the next few days, he got pretty comfortable being held by the nurses and when we came home he fully expected the king treatment to continue and it did—he was held day and night. I can vividly remember thinking I just want to do something other than sit here and hold this baby for a few minutes. I had no idea that he would later develop autism, a condition that means he has a very hard time tolerating touch, let alone being held. But a few days ago he spontaneously ran over and hugged me around the legs, and because I now know how precious those clearings in treacherous terrain are, I could tell you what he was wearing, what exact part of my leg he hugged and even how hard he squeezed if you asked.
Need another example? When Caden was around a year old we would play a game. I’d tell him to say mommy and he would predictably say daddy. We’d do this several times before I’d say oh okay Caden just say daddy and predictably he would crack up laughing as he said mommy. There aren’t words to describe how badly I wish I had that interaction—that voice, that word, that laugh and smile---on video tape. I didn’t, though, because what parent expects that in a few months all language including the precious sound of a child calling you mommy would be gone. When we come to those precious clearings now we videotape them until the recording time runs out because tomorrow they could be gone—now we know to treasure the moments because we’ve experienced the loss.
The other thing about these clearings—they are so beautiful and peaceful that they give us a reason to keep hiking up this terrain. We know there will be other clearings if we just keep moving in the right direction. That’s why we spend so many hours in doctor’s offices, in therapists’ offices, at schools fighting for services, in human service organizations filling out forms, on Facebook entering giveaways, and even why we can make just about anything a therapy or learning moment. Caden adores bubbles; just so happens they are awesome for overcoming tongue thrust and working on mouth positions for articulation. Playing in the sand helps work on tactile defensiveness and fine motor skills while the crafts that he begs for work on hand-eye coordination. The swimming classes he takes teach him to swim while helping him overcome some sensory issues related to water, and Miracle League baseball works on peer interactions and rules while being a whole lot of fun. Did you know that you can use a Pokemon card to work on colors, numbers, and letters? Remember the part about being in the elements without all of the tools or safety line that we need, most of the special needs parents I know are pretty darn resourceful. We take what we can find, we get creative and we run with it. Criticize me for spoiling my child because he gets a video game for each and every infusion but we know that the anticipation of a game helps get him through the IV start and having the directions read to him while he watches YouTube videos about playing the game help him lay through 8-10 hours of infusion time. Plain and simple: it works and it moves us a whole closer to one of those beautiful clearings rather than pushing us back down the mountain.
Those clearings are precious and we’ll do anything and everything we can as special needs parents to get to them. Maybe you can also learn from our journey how much you can and should savor every precious moment. I don’t know how far up the mountain we personally will get, but I can tell you that no matter how hot or cold or slippery or steep the mountain becomes we’ll never stop trying to reach the top. I know the ground is on the other side of that hurdle, I just don’t know quite where yet.