I loved being pregnant. Even though Case was a surprise, I just couldn’t get over the kicking, rolling, and hiccupping that delighted me each day.
When he was born, he had those round cheeks, full lips. I wanted to breathe him in every time I saw him. I could have snuggled those cheeks all day long. It was a little tough to snuggle through a ventilator and then an oxygen cannula, but you make it happen.
He changed my life from the moment he entered it.
And when he was diagnosed with MPS, he changed it even more.
More doctors’ appointments, more tests, more therapy, more school meetings, more medical equipment, more frightening ER visits….
More sweetness, more delight in each moment, more joy at every accomplishment, more appreciation for life and those who choose to enjoy it with me, more life….
Is it fair to say that the child who brought the potential for death also brought the release of life?
There are now some more simple tests for chromosomal abnormalities like Down Syndrome (read more here) and people will be able to detect conditions in the privacy of their own home, deciding whether or not to keep this child. It is fair to say that this testing potential will increase over time and could someday include the conditions that many of our children suffer from.
Do we really want our society devoid of those with disabilities? Devoid of special children with MPS, with Down syndrome, with other special gifts? When most people agree about how much they enrich the lives of their families and everyone around them, do we really want them just not to exist?
Don’t they take delight in their accomplishments, albeit they may often be tiny from the world’s perspective? Don’t they cherish a cheek’s brush and a mother’s soft kiss? Much more than they would cherish not living at all?
A child can change your world. He can change the world around him. Change almost everyone he comes in contact with.
Special things are things that we cherish, that we don’t want to lose, that we show the world how amazing they are.
Maybe special needs are just that … special.