Today was my first parent/teacher conference! I feel like I went through a rite of passage and am now REALLY, fully an adult.
The meeting was only supposed to be 20 minutes long. But when there are 14 people in the room, all of whom have something to report, that timeframe becomes a joke.
And I’m not exaggerating. 14 people were in the room – therapists, psychologists, social workers, paras, parents. Each and every one of these people discussed how much potential L has, how very smart she is, how sweet and loving she is.
Turns out she creates a bit of crowd everywhere she goes at school – and not just because she is rarely without at least two adults by her side throughout the day. Kids flock to her – they want to hug her, help her, play with her. Young children are drawn to her. I’m not surprised to hear this as I see it happen everywhere – at the laundromat the other week, two girls started following Lily around as she wandered aimlessly from washer to dryer and back again. They wanted to touch her hair, sing to her, interact with her. Lily loves this kind of attention. And she usually reciprocates the hugs and kisses.
This kid is walking love. Pure and simple.
Back to the parent/teacher conference where we discussed all things Lily. The therapists informed me of her progress, of her ups and downs (which are constant, unfortunately, and part of what is expected of her diagnosis), of her struggle to communicate, her struggle to sometimes swallow or walk a straight line or climb a stair. But she’s a trooper and even though she may be frustrated and/or tired, she tries and tries. I updated everyone in the room on the numerous doctors appointments we’ve recently had – what the swallow specialist, neurologist, Rett specialist, dentist, and gastroenterologist had to say about sweet L.
And we were only supposed to meet for 20 minutes?! Ha. We were in there for an hour and a half and could have kept going.
I walked away from that meeting confident that my sweet kid has a loving, supportive, hard-working and extremely knowledgable group of people teaching her. And felt so grateful.
blueberriesandgiggles 
Bravo, my beauty.
Your daughter has much to contribute to this world, God bless her.
Love!!!
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Thank God Lily has you on her journey! You found just the right people to help her.
That L is a walking love machine super girl!. We are all so fortunate to have her in our lives! xoxoxo
Sounds like you picked the perfect place for her to thrive! Way to go L!!
Thank you for your blog.
I’ve been worried sick about my daughter since she was 6 months old. She has never reached her milestones on time although she does reach them.
She has little control of her arms, they don’t necessarily flap but they are always raised making strange movements. She also has other development issues but she is determined.
My daughter did qualify for Early Intervention and we go twice / week. We are trying to get her to a neurologist but the wait is long.
One of my biggest fears is that she had Retts. I try to put it out of my mind but you know your kid and you know there is something not right.
I’ve been trying to take one day at a time without breaking down but it’s hard. I came across this blog and just thank you. Thank you for being positive. Your daughter is beautiful and it gives me some hope for my little girl.
I’m so glad you found your way here. I remember when ‘Rett syndrome’ was first raised while we were at the hospital getting one of the many EEG’s she’s undertaken. I wanted to punch the Physicians assistance in the face. But you know what? I’m so glad we now know what is going on with Lily. I still have to take things one day at a time while also trying to plan for the future – not knowing what the future will hold. But no one knows what the future may hold. So breathe, love your sweetie and do your best to take care of yourself with all that is going on. Sending love to you and your little girl.