How do I explain?

How do I explain?

I witnessed a tough moment the other day – an interaction between my kiddos…..and it broke my heart. Boston requests a drink or food with PECS (a photo of his cup or bowl.) He either pushes the button under the photo and it speaks the words for him “May I have something to drink please?” […]

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Facebook has made me a HORRIBLE blogger. I want to apologize to all of you! I hope if you are someone who is (or WAS) a faithful blog reader that we are also friends on facebook so that you can see all the fun posts about Brooklyn, Boston, and of course the crazy puppy! I […]

So Much to Say

Seven years ago a friend of mine wrote this song for Brooklyn. Today it popped up in my facebook newsfeed for some reason and WOW – talk emotions flooding back! I wanted to share the beautiful words with all of you again today. Verse 1: Silent love, she quiets my soul. All my questions have […]

Life with Our Tubie - Changes

Life with Our Tubie – Changes

And so the change begins….. We received the “new” feeding pump bags this month. Those of you who have a kiddo with a feeding tube you know EXACTLY what I am talking about. For those of you who don’t, it seems that quite a few changes are coming down the road in terms of feeding […]

2007 yar of diagnosis

8 years ago

I wonder if our diagnosis day was not so close to her birthday if I would still remember it each year? Early on….sure,  of course – 1st year, second year, 5th year maybe. But now eight years later – should it still come to mind? Should my heart still hurt? And eight years…how can that […]

Double Digits

Double Digits

Today my beautiful daughter Brooklyn turns ten years old. Ten 1,2,3,4,5,6,7,8,9….10 DOUBLE DIGITS – what?!?! Where did the past 9 years go? It feels like just yesterday that she was wrapped up in my arms looking up at me for the very first time. Now, she sits here in front of me – a pre-teen, a […]

Prom and an attempt at normalcy

Prom and an attempt at normalcy

I am having a little bit of a freak out that my daughter is turning ten in a month. Double digits. I am not ready for that. Mainly because her birthday also means the anniversary of her Rett Syndrome diagnosis is just around the corner. I can get stuck in that “ugh, this sucks, why […]

Ragnar 4 Rett

Ragnar 4 Rett

This weekend six AMAZING women will we running 182 miles for 182 girls with Rett Syndrome in the ‪#‎SoCalRagnar‬ ‪relay race. They run because our girls can’t and because our hope is that one day they WILL! Brooklyn is mile 177  and her runner is Kristen,  we will be cheering her on from here and hope […]

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Autism Awareness Month

Autism Awareness Month

We are six days into Autism Awareness Month and I have not blogged. (I know – you are not shocked – I have been quite the blog slacker the past few months) Anyway, this is a tough one. I feel like I just “celebrated” World Down Syndrome Day – oh…because we did…just last month! Now…here […]