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When I Realized My ‘Typical’ Child Has Special Needs

The days were long and the nights were brutal. The first year of our youngest child’s life pushed my husband and me to the brink. We barely slept, and when we were awake, we could barely make decisions beyond those that were about the care of our child. We tried not to talk about the pain we felt, but it leaked out at the worst times. I’m certain we’ll physically feel the toll it took on us for years. And to make it worst, we could see no light at the end of the tunnel. I remember telling my husband that for every mountain we crossed, a new mountain grew bigger in front of us. It was overwhelming.

As we wallowed in this new life with a critically ill child, we began to slowly accept new realities. Our new child’s life may be short and certainly complex.  He will likely take years to do simple tasks, and the fear of congestive heart failure would always loom. We mourned. We mourned for the loss of a child who was still alive. We worried about the pain we know he’d have for most of his life.

Then we woke up.

I’m not entirely sure how the change occurred, but I know it happened late June in 2014. I remember looking at my oldest child, who was 3 and half years old at the time, playing with toys in his room. It was in that moment I realized he had “special needs,” too. His life was finite, too. He deserved as many resources as we could give him. And nothing that I envisioned for his life was guaranteed. I had accepted that I may not have one of my children forever, but forgot that my healthy, typical child’s future is not set in stone either.

I had traveled to the depths of despair so many parents of critically ill children had done before me, and I realized I had two children who were fragile. I knew my time with one of them would be precious. But the truth is, my time with both of them is precious. And my time with either child can never be promised.

That day, I stopped mourning the loss of my critically ill child’s future and started celebrating the lives of both of my children. I accepted that there are going to be challenges. And I accepted that one day in the near or distant future, I may experience the most painful day of my life. But right now, I’m celebrating the fact that I’ve been given two wonderful boys with no guarantees.

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