I saw the other day your Google search “I don’t want my medically fragile child,” brought you to this blog, and my heart broke. It broke for the pain you are undoubtedly suffering through. It broke for your child, who desperately needs someone right now. It broke for the fear, and the anger, and the frustration you are facing. It broke for the guilt that can swallow you whole when such fears are vocalized.
I’m not here to feed that guilt.
I’m not here to tell you how wrong you are, or wonder how a parent could ever say that about a child.
I know, that in the deepest, darkest recesses of our minds, we have all said and thought things of which we are not proud. Did I want a medically fragile child? No. But I wanted my medically fragile child. So I’m not even here to tell you that I understand. Because, I don’t. Not really, but that’s OK. If everyone understood everything, we wouldn’t need blogs, right?
I say that so you’ll know that I’m telling the truth. This isn’t sugar coated because I’m afraid of offending someone. I do that on a daily basis, so I have no worries about that. This is simply the truth, for me.
Being the parent of a medically fragile child is difficult. Terrifying. Exhausting.
It’s also incredibly rewarding. Fulfilling. Challenging.
None of us were given a manual on how to understand our children, or how to best deal with doctors. None of us came into this with a complete and complex knowledge of conditions and remedies.
We’ve studied, researched, cried, and rejoiced. We’ve read journal articles and reached out to others on the internet. We’ve mourned the loss of what could-have-been and we’ve celebrated the milestones our children never-should-have-met.
We argue with and simultaneously depend on doctors. We’ve cried when given a diagnosis and then resolved to prove.them.wrong. We’ve come to term with some of those “labels” and others we have, indeed, obliterated. We have honorary medical degrees.
Few of us asked for this. Even fewer of us were prepared for it. We weren’t “chosen.” We were made. We made ourselves.
Many of us would change “it” in a second if we could. Some of us embrace our children- medical needs and all- and would turn our back on a do-over. Regardless, we love our children, no matter how we feel about their condition.
We love the way we notice the tiniest milestones. We love the way we take nothing for granted. We love the way our children find joy regardless of their surroundings. We love the way our children teach us to love– without condition, without hesitation.
Yes, some of our nights are filled with tears.
But our lives are filled with joy.
Pure, life-changing joy.
And that’s the truth.
With all my heart, I wish you the best. I wish you peace. I wish you the clarity of mind to make the decision that is best for everyone– for you, for your child, for your family. I wish you the ability to see past the condition and find the child. I wish you the strength to love yourself.
I wish you all this and more.