It’s almost that time. The time I have been anticipating, and
dreading, since Bennett’s diagnosis of CDKL5 Deficiency Disorder. The time when
strangers will know instantly that he’s disabled. The time when the stares,
comments, and judgements will start.
Up until now, Bennett is “just an adorable, sleepy baby” to
the average person he meets. We get “Oh, isn’t he adorable!” comments from passerby
mixed with big, smitten smiles. I’ve grown away from my feelings of insecurity
and scrutiny when he was an infant and now we merrily go about our day, not giving
a care in the world what other people may think or say.
It’s almost that time to get a wheelchair. I knew it was
coming. His therapist has been mentioning it for months. Every time I thought
about it, I would feel a mixture of excitement for my baby boy to have the
support he needs, and a feeling of pure devastation that this is WHAT HE NEEDS.
I have a child with a lifelong, severe disability. He is most likely to never
walk, talk, or feed himself. He also has daily seizures that seem to be getting
worse as he gets older. At 2 ½, most parents are contemplating which preschool
to send their children, not which wheelchair to buy them. I feel like I want to
keep him in his little stroller, his legs hanging out, his head reaching over
the top of the lining, until he can’t fit anymore. I want him to continue to
look like a cute, sleepy toddler to the average person, not a disabled toddler
who keeps his eyes closed because of his blindness.
It’s almost that time. Do we just get an adaptive stroller
and put off the inevitable wheelchair, or do we dive right in and get the
wheelchair van so we don’t have to do it a couple of years from now, anyways? I
want to do what’s healthiest for Bennett, his father and I, and his caretakers.
I’m beginning to think that the best choice is sitting right there in a lump on
my heart. I think that it’s time.
You are such a great Mom. I have confidence that you will choose what is best for your son...I don't know how hard this is for you but I see your commitment, your energy and your fierce love you have for your sweet baby boy who did not deserve this illness but he sure got a family he needed and deserved.
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