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Mother's Day: Special Needs Edition

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Mother's Day for moms that have been thrust into a world that we never wanted to visit.

mothers day with special needs child in hospital

Homeschool Mom: I was at Children's Hospital yesterday with my two kids who have cystic fibrosis. We were in the waiting room, my kids wearing mini surgical masks to protect them from the germs in the hospital, and as usual they were acting like three-year-olds when they are actually ten and thirteen. They were rolling around on the giant couches arguing, bugging each other, and complaining about waiting too long and of course having to wear the masks. To them, the worst part about having a tragic, genetic condition are the smaller things. The things that I say in my obnoxious stoic mother way, "Be thankful that is your biggest problem right now." They have no idea what I'm talking about because everything uncomfortable to them is the worst possible thing. Swallowing Tylenol can be like the death scene from Camille to a kid. A young Mom sat near us and my daughter asked if her cute baby had C.F. and the woman said "No, he's been tested for it, they don't know what he has."

And she made me think about all of us moms who have been thrust into a world that we never wanted to visit or thought we would, and have become members of a club that we'd do anything to get out of. The day we found out our kids had cancer or C.F. or Down Syndrome or anything else that includes medicine and hospitals and tubes and sickness, we sailed to a shore that other moms can't imagine. Moms of healthy children wonder, "How do they do it?" I get asked all the time, "How do you handle it so well?" Well, I don't handle it so well, that is how I handle it. None of us do. We simply love our children and do the best we can to care for them, and the dailiness of that puts one foot in front of another and we go on.

So, I just wanted to give a shout out to my sisters who had to sail to that crummy shore with all the rocks and tell you that there are a lot of us with you here and we know that you flush PICC lines and ports and work ventilators and change oxygen tanks and suction breathing tubes, and can speak medical jargon like you've done residency. We know that you don't sit around crying all day because the truth is that there are not enough tears anyway to cover the fear and disappointment and sadness you feel for your children, just like you'd never stop crying for the orphans in Africa because their numbers and plight are never ending. Besides, we are too busy enjoying our kids just like the mothers on the other shore, the one we left behind. We know that we don't handle it because we are Super Moms; we do it because that is what we must do to care for the loves of our lives, our children. Happy Mother's Day!


next: Bittersweet Journey
12 comments so far | Post a comment now
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Charlene May 9, 2009, 11:55 AM

“We know that we don’t handle it because we are Super Moms; we do it because that is what we must do to care for the loves of our lives, our children.”

This sums it up for me. Thank you for this. My youngest daughter has Congenital Heart Defects. Last year I spent Mother’s Day in the hospital following her second open heart surgery in her young little life. This year I am just reflecting on that and am glad that she is well.

Lori May 9, 2009, 12:53 PM

Beautifully written and completely true to life from one who has lived this reality for 14 years. You have an amazing gift of capturing this life we live!

Nan May 9, 2009, 6:00 PM

Right on, Sister!!! It helps to have a wicked sense of humor, a fierceness (alas, more fierce than that wimpy “Sasha Fierce” who can dry her tears with wads of $), and some good hooch every now & then. There’s a great analogy of getting on a plane that’s destined for Tuscany with having your heart set on that and the excitement towards it, but then getting your plane unexpectantly rerouted for Buffalo, NY (no offense, Buffalo), and having to accept that destination, resigned to the fact that you will have to learn to find some other things to enjoy there instead of the Tuscan vacation you had been anticipating. It’s not something we asked for, or wanted, but we love our children, and make the very best we can out of all of our lives. You find some small victories & snippets of happiness in the most absurd & unexpected places. We still envy those with “normal”, or “healthy” kids & wonder why they got the perks we feel we also deserve, but I believe there is a reason for everything, and I certainly have lived more lifetimes than I thought I ever would in this one! You must look for joy wherever you can find it!

Barbara May 9, 2009, 6:02 PM

What a wonderfully written article! It allows the reader a short visit to that “other shore” and a glimpse into the life of a remarkable person and mother. We can all learn from her as we deal with the challenges that life throws at us.

Tina@SendChocolate May 11, 2009, 1:53 PM

Very well-written article, and I have felt a lot of what you write. I have 3 children, all with high-functioning autism. We don’t deal with the medical stuff, but we deal with the invisibleness of their condition: they LOOK normal, so why do they act like THAT? Must be their parenting.

Lots of fun!

T.

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Nancy Flanders April 25, 2011, 5:05 PM

Thanks for this. I have a daughter with CF and feel everything you described…


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