We had a busy and emotional week, the girls speech therapist called and said she could not make it today and I was secretly grateful, I am exhausted. My dear friend called and wanted to stop by today and I asked her not to. Though I really would love to see her, not this week though, I am poor company.
We attended Renee's funeral and the church was full of people who loved her. My mind kept going to pre-natal diagnosis and how many children were not born, many because of Down syndrome, many because of cystic fibrosis, Renee had both. Yet there with her grieving family were hundreds of people who loved Renee, people whose lives she touched and changed forever.
She was an ambassador for good will, love, and actually the hospital she spent too much of her young life in.
She was not the least among us, but a light in the dark, as many of our precious children are. I see her beautiful face and I think LOVE. What a legacy she has left us.
My own beautiful girls do this in their own ways too.
Meghan is our sweet and funny sweetheart. She also has a stubborn streak that no one can change. She comes by it naturally, her dad and I are also stubborn, or as my dad said, hardheaded. Mom used to tell him, "But she has a tender heart" and so does my Meghan. Meghan loves to shop, and she is gaining self-control and independence in stores for the most part. She sometimes gives her daddy a hard time. We shop for groceries at Trader Joe's for the most part, we need chemical free food, gluten free, and such, and they have more of a section at better deals. Trader Joe's is the only store where everyone is kind, understanding and supportive of our family. Another reason why we love it there. (not that I think everyone needs to shop there, it is too already too small and crowded *wink*)
We have been going to Trader Joe's since I finished chemotherapy and discovered I could no longer tolerate-or digest dairy, wheat, or anything artificial in my food. Meghan was 2 1/2 at that time.
Meghan knows where everything is at that store and she knows what we buy. She will move through that crowded store and get everything we need on her own. Everyone knows her there too, and they just treat her like any other kid. They of course notice she sports that extra chromosome, in fact, one of the cashiers asked us to help her pass an early childhood development class and she interviewed me about all three girls. Hope she got a good grade!
What I appreciate about that entire group of people working there is simply that they see my girls as children, complete, whole and they have never treated them like some people have.
Target can be bad, it is too big, too many people work there, always someone different checking you out. Amanda is not a fan of Target, when she gets nervous she will hide her face, play with her fingers,, or resort to her self stim behaviors she used at the orphanage. When she sounds like Darth Vader, we know she is overwhelmed. Thankfully that is becoming more rare. She loves grocery shopping though, Tom sometimes takes each girl individually and you can hear her singing when he inevitably calls me asking "What do we need again?"
How about Kara, well, Kara seems to think that picking up things off shelves and tossing them is the best and more fun thing ever! She is at the stage where everything needs to be touched and held, including apples, and other fruit, whoops, and the hand really is quicker than the eye. Kara has a nonchalant attitude about life, she enjoys interacting with people, if they take the time to engage her, but otherwise, forget about it. She has this very cute way of engaging me when she wants a hug. She tilts her head ever so slightly to the right and then jumps on me giggling. She has to be the best cuddle bug ever, and as we say "She is so squish-able".
Kara has been struggling with expressive language, that attitude of, yea, so what, who cares, does not help. She reminds me of a teenage boy...ever had one, then you know what I mean. It occurred to her speech therapist and I that Kara was not communicating because she lost language completely. Except lately she has been signing more words, vocalizing and trying to approximate sounds, she played the ba ba ba matching sound game with me for 20 minutes. Here's hoping we don't to the "two steps forward, three back".
Oh Amanda, we are all joking that every step she takes walking makes her stinker gene kick in more. Lately she has taken to screaming, LOUDLY, sounds like someone is killing her, but she is rocking on her doggie, calm as can be, she is just learning a new sound, heaven help us.
It is fun to watch her walking around, she looks like an 18 month old, and she toddles like an infant! She is growing very slowly, Meghan also grew slowly, Kara is the only one of our three that does not have any issues with gaining weight!