I tend to do a double take every time I see a stroller. Weird I know. But there are lots of medical strollers and wheelchairs that have similarities to baby joggers–medical equipment is looking a little less medical lately, at least to me. So when something catches my eye, I am hopeful there is another parent out there just like me.
Often though, it’s just a regular ol’ stroller.
We are in a transition phase with Nathan right now. He’s three and a half and still small. His head especially is about the size of a nine month old. (That’s according to my very scientifically accurate measurement of seeing him next to a little girl at a play gym last week that just so happened to be nine months old.) He weighs about 24 pounds, and has for over the last year. He still easily fits in a stroller, sleeps in a crib, and plays with infant toys. It feels like we’ve been in the baby phase for forever–and I like the baby phase–but I know some awkward changes are coming in the next year. His favorite toys will likely not change, but he needs a new bed and a new ride (which means we need to use Bob more). Once we make the leap to new, more medical related options for him, it leads down a path once again very different from my peers. A path that I would not choose, but has been chosen for me.
Most toddlers don’t sleep in a tent-type bed because they can manage climbing safely in and out of bed. Most four-year-olds can manage walking at the mall without an over sized stroller or wheelchair. Most kids Nathan’s age can eat food by mouth and are potty trained. Mine needs special equipment and medical intervention to do very normal things.
This journey is so lonely.
I’ve found little communities of parents who have children similar to mine. I’ve had friends and family who have intentionally entered our world to help care for Nathan. And I’m overwhelmed by the ways our community has desired to get to know Nathan for who he is. I am so grateful for the support we’ve found, but it does not satisfy the desire, the obsession, I have for normal. That’s why I’m always on the look-out for other special needs parents.
If I lived in a world where everyone had a special needs family member, it wouldn’t be so hard to stand out. If everyone dealt with the daily challenges of caring for someone medically complicated, it wouldn’t be so lonely. If that were so, then it would just be normal. But it is not normal a normal path, and in that difference is where the tension lies for me.
I fight this tension. I want it to go away. Yet it only dissipates when I don’t press up against it and hate it so much. It drifts off when I decide to acknowledge it and name it. I am on a special needs path. My external circumstances may not change, but my internal heart can shift. My path may not change direction, but the way in which I walk it can. Have you noticed there is a similar tension in the Psalms? This week I’m finding peace and companionship in the words and songs of King David.
Keep me safe, my God, for in you I take refuge.
I say to the Lord, “You are my Lord; apart from you I have no good thing.” I say of the holy people who are in the land, “They are the noble ones in whom is all my delight.” Those who run after other gods will suffer more and more. I will not pour out libations of blood to such gods or take up their names on my lips.
Lord, you alone are my portion and my cup; you make my lot secure. The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance. I will praise the Lord, who counsels me; even at night my heart instructs me. I keep my eyes always on the Lord. With him at my right hand, I will not be shaken.
Therefore my heart is glad and my tongue rejoices; my body also will rest secure, because you will not abandon me to the realm of the dead, nor will you let your faithful one see decay. You make known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.
– Psalm 16 (NIV)
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!