Parenting, special needs parenting, Williams Syndrome

Williams Syndrome Wednesday: Missing Milestones is Messy

missing milestones Williams Syndrome Wednesday

williams syndrome missing milestonesMissing milestones is a messy business. Obi is behind. This certainly comes as no surprise. She’s a preemie. She has Williams Syndrome. She’s been doing it from the start. Or not doing it, I suppose – whatever ‘it’ is on any given day.

But each new milestone not met is another little stab to the heart. I have a few different groups of Mom’s that are part of my regular social circle. Most of their babies were born in and around the same time as mine – or around when she was due, anyway. Some have newer babies. And one by one these babies move through each of the stages. Check, check, check. And then I find a new baby to look to as being Obi’s “age” (now these babies are about 12 weeks) although they are, at that age, already bigger than she is.

I can’t help but compare – it’s in my nature. And I’m missing the feeling of ‘I totally get where you’re coming from’. And, if I’m being honest, I miss being the first one to check a box (Bubble was quick to meet all his early milestones – check, check, check).

Obi’s OT was here last week and assessed her at meeting half of her 4 month milestones. All her little friends have long passed her by. Some are crawling. Some are rolling with intent. All are laughing and grabbing and babbling and, and, and. And we’re going to a hearing test, having OT come to the house, looking for other interventions. We’re missing the summer days under trees at the park, missing play dates and coffee dates. We’re missing typical and normal and expected.

I’m missing the feeling that everything is going to be ok because things are going as they should.

I’m feeling uncertain, facing the unknown and fearing all sorts of things that may or may not come to pass.

I’m missing the days before we ‘knew’ it was Williams Syndrome, even if I ‘knew’ it was something.

I’ve read a lot about the joy and love and happiness that WS kids bring to the world and I’m not yet sure when that part starts.

Right now, aside from my beautiful little peachy pie, all I can see is what we’re missing.