To the People Who Didn't Join Us on Our Special Needs Journey

One of the hardest parts of treading through this world as a parent to a child with special needs is the disappointment you can feel towards those you once thought cared — the people you thought would always be around. To count the faces that have disappeared over the years.

I understand this situation can be hard to understand, but then again I don’t. Your absence… it still hurts.

Time is flying by through all the medical tests and appointments, and I’m not even sure at what point you decided to leave. At one moment I was in a life that made sense, and the next thing I knew, I was hurdled in a different direction where everything’s different, where nothing is by the books. Holding on to the past or the people who lived there seems nearly impossible. Before you have a chance to say goodbye to one way of thinking, you’re already trucking down another path. A path full of constant leaping without thinking.

Every once in awhile I stop and look back, mainly to reflect at how far we’ve made it, but it’s hard to not notice everything and everyone who stayed behind.

The life I lived before my daughters diagnosis was such a different world. I’m not saying it was better, but it wasn’t like this. Honestly, I never had a clue this kind of life even  existed. It was happening all around me, and I was so unaware. I try to keep that in mind as I’m constantly dishing out the patience card. How could you really understand this life? How can I really blame you when you don’t? I was once you. Maybe at one point I would have judged me too.

Here I am, on the other side of the fence. The view is different. There’s no road map or tour guide; it’s a little slow sailing and a bit bumpy. I’d set off in a direction, unsure where it was going. Before I knew it, I was lost at sea. I couldn’t see land and I quickly began to realize I was never going back. Familiar faces began to dwindle. This was life now.

I wish I could say I have a big crowd surrounding my family who just knew when to step in or how to help out, who know when I’m  exhausted. I wish there were more maps to guide my way, loud voices cheering along the way. Witnesses who could view a child’s milestone as a gift and realize how amazing it can feel when you reach them. I wish life didn’t move so fast so I wasn’t constantly feeling like we’re lightyears behind. But it’s moving, and regardless the direction, so are we.

Embracing every moment of our life is key to survival. This direction I’m traveling is full of surprises. They’re not all good, but the ones that are, are moments like no other. I’ve got an opportunity to witness miracles, beat all the odds. We claim what is ours on this path, taking nothing for granted. Meeting new friends, saying goodbye to some old ones. This direction moves so quickly, yet goes so slow. I haven’t got a clue where it’s going or how I’m going to make it in one piece, but that’s life. Nothing ever happens like you think it will. No one can say for sure where our road will take us, but I hope one day we meet up and our paths cross again.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.