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.


  1. 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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