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Rett syndrome at War

Posted on February 26, 2022 by melelllan

No political comments or inflammatory comments will be approved.

As the eyes of the world turn to Ukraine, I am full of dread for those of our friends we’ve come to know over the years. Those whose children have grown up before our eyes and now are set upon by another relentless foe. On a larger scale, I am full of sorrow for a world and people who so often must deal with any myriad of hardships compounded by war.

I cannot imagine having a special needs child in a country where the roads and sidewalks are blown up and your child needs a wheelchair, an added obstacle to safety. I cannot imagine living in a country where life-saving medicine is no longer in the supply chain. I cannot imagine choices being made- a father running ahead with able bodied children and a mother staying behind with a child that is bed-ridden, all hoping that a bomb does not land on their building.

I am constantly reminded how fortunate we are in the US, a natural buffer to attack on both sides. By the mere fact of placement on the globe, we are constantly saved from invasion. So incredibly lucky. My thoughts are constantly turning to Afghanistan, Africa, Israel and Palestine among others, and now Ukraine.

I so often hear/read how horrible we have it here- the cost of this or that. I scoff at such pettiness. I’ve been to the Philippines. Once you’ve been outside the US to a country where a five dollar bill will feed a family for weeks, or a cardboard box is not for the homeless, but IS a home, how could you ever come back and not feel grateful.

And now we may soon be at war. What would you give up for our friends in Ukraine? What small inconvenience would you “suffer” so that those children we’ve grown to love, LIVE. When you see their President defiant, “I need ammunition, not a lift.” Would you pay more for gas, walk a little more, change just a bit, knowing that you will never, ever be bombed on, your children will never lose their supply chain of medicine, that you will never, ever have to choose to leave a child and parent behind to save the able bodied- so many of us live in a “Sophie’s Choice” free place.

Please, put all the inconsequential aside. Think of the innocent, those sweet Rett children whose families are being subjected to another foe. But, this is one we can help them with. Let’s find a way, each in our own way. I do not know the answers to how we can have world peace, but I do know we can all do our part for that hope.

Rett syndrome is already a war. No one deserves to have to fight more than one war at a time.