missing milestones Williams Syndrome Wednesday

Williams Syndrome Wednesday: Missing Milestones is Messy

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.

3 Comments

  1. Erin

    July 26, 2013 at 12:37 pm

    I you ever want to talk feel free to contact me. I have a son with WS who is now 21. I totally understand and can completely relate to your posts. It will get better, but you are totally right to take this time to be pissed off. There is a whole future ahead to figure things out, and you will figure them out. I would be glad to lend an ear or provide suggestions when/if you are ready. – Erin

    Reply
  2. Nancy

    July 26, 2013 at 2:18 pm

    Your blog came up in my Google alerts for WS this morning. I know almost exactly what you are going through, only we didn’t have a diagnosis until my son was 17 months. I kept telling the doctor something was wrong, but nobody listened. He hit all of his milestones late, and each doctor visit was very depressing because of this for quite some time long after his diagnosis. The joy for me came slowly like everything else, but — oh baby, did it come! I have learned that our celebrations are so much sweeter when they come. My son is turning 9 this year. Hope Obi grows up healthy and strong. I know with 100% certainty she will be happy! I bet you will be, too. Hang in there and know you aren’t alone.

    Reply
  3. Tina

    May 30, 2015 at 8:51 am

    Hi my son David is 40 and has WS he wasn’t diagnosed until he was 27, he is a gregarious, friendly guy who has never met a stranger. We have been very lucky in having a very supportive neighborhood, friends and family. He has had many health challenges and continues to have more, resulting in me being a typical “Dr Mom” hang in there, each child is different regardless of there disabiilties or abilities
    Tina

    Reply

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