On being the parent of a special needs child

I can't tell you how many times I've been welcomed to "Holland".

The poem is about the shock, pain, and mourning that one goes through being the parent of a special needs child. It ends with the statement that if you spend your life mourning what you no longer have (a typical, healthy child), you'll never be free to enjoy the child you DO have.

For me, the mourning comes and goes. Some people try to point out that there are others out there in much worse situations than what my family goes through. I am always aware of this fact. But it does not ease or negate my own pain.

Some other parents of special needs children are so GRATEFUL for all the little achievements of their child. We learn to never take the little things for granted. We know how HARD we and our children work to achieve the things that come so easily to others.

But my joy over Wee One's achievements is often mixed with heartache. I wish the little things and milestones weren't such a struggle. And I don't understand why I can't be more like the moms who are just completely joyous when they bear witness to such things.

Some of them were told their child would be a vegetable (!), or wouldn't even survive. They are thrilled to prove the doctors wrong, and every little thing seems like a miracle. I don't know why I can't share the same untainted awe.

I am grateful that the doctors never had such grim prognoses for the Wee One. They were very upfront and honest - they didn't know what the future held for her, every case is different. She was a very sick baby.

But at the same time, maybe the hope that Wee One might come through all of this unscathed is what taints the joy I should feel with each of her achievements. When it IS such a struggle to reach milestones, I am reminded that we are not "typical".

Many other parents also have a sense of faith that I do not. I often think faith would be a handy thing to help get me through this. But it's difficult to reconcile my upset at the unfairness of it all with any sense of faith.

I do, however, take time to enjoy some aspects of Wee One's delays. I get to enjoy her stages for longer periods of time. She is still my baby in many ways, even though she's quickly approaching 2 years of age. Parents of typically developing children often tell me that as soon as they get used to the current stage their child is in, the child moves on to the next one. They're always playing catch-up. The slower pace of Wee One's development lets me relax in ways they can't.

Still, I struggle with the constant balancing act of joy and heartache. I will probably always long for things to be easier for Wee One. But I am starting to let go of the life I hoped we would have. It makes the pain sting a little less when we notice more issues or delays. Sometimes not having an idea of where you're headed is less stressful than having a roadmap, and realizing you're off course.