I’m still here!

Oct 18, 2011

I just realized it’s been awhile again. I really need to get in the habit of updating this blog, don’t I?

As far as recent events in the Vender world…

Adrian hasn’t been traveling for work as much, which means everything to me. And his job is great! He was selected as a speaker at a big name web conference in NYC and went out there to present last month, I was so proud of him. He is remarkably talented at what he does. I’ve kept busy with Claire and taking care of our home as usual, and also with my lovely side blog Hey Little Birdie. I’ve also found the time to do some crafting, baking, and try some new recipes, which keeps me being me. We’re gearing up for the holidays and wishing for cooler weather. We plan on going to the pumpkin festival this weekend and Claire is going to be an ASU cheerleader for Halloween.

As far as an update on Claire, I don’t really want to go into the seizures too much. It’s just too hard to talk about and I feel like I have to talk about it with EVERYONE. Family, friends, therapists, doctors, social services, strangers. I want so much for the focus to be more on Claire as a person and not on her disabilities. Let’s just say this past summer has been absolutely heartbreaking in terms of the severity of her epilepsy, we are trying new medications again, and as always will not give up fighting for her freedom from these awful seizures. We are participating in the Phoenix Epilepsy Walk next month, here is a link if you want to donate to Claire’s team. And if you live in the area, we would love to have you join us and walk! It should be a fun time, you can bring dogs and strollers too.

A few other fun recent happenings with Claire is that she has been grabbing things when they are touched to her hand and she does this activity we call her “loco legs” where she gets jingle bells on her ankles and kicks and dances like crazy. It is beyond cute and silly. I took a little video of it, so I will have Adrian help me upload it. I’m also warming up to the idea of Claire attending special needs preschool. Two of her therapists work at the one we would send her to, and they report that her teacher is wonderful. I’ll have to go sit in and visit soon to get a better feel for it. It is honestly hard to think about, every time a new milestone arrives my heart hurts all over again. It’s difficult to see your friends’ children going through these normal childhood transitions and to mourn all over again for what happened to Claire. I know it is something that will continue throughout her whole life for me. And although it is a sadness that may never completely heal, I am slowly learning how to cope and process it better. I definitely feel different about that grief than I did when Claire was first born. I hate that so much has been taken from her, that she has to go through such hard circumstances, that she has seizures daily… but the love I have for her is greater. Just one smile or tiny reaction from her brings me indescribable joy. She is unbelievably brave and drawn to music, two traits she got from her amazing daddy. She is stubborn (especially with therapists) and loves to be silly, which she got from me. I love who she is. And I hope as time goes on, we will get to share more of what makes Claire so special with the world. She really has a lot to teach it.

Here are some more recent pictures:

 

by | Categories: family |

6 comments | leave a comment

  1. Allison
    October 18th, 2011 at 3:04 pm #

    Claire is getting so tall and lanky! It is so fun to see them moving on from being toddlers into ‘kids’ and losing the baby face and the baby thighs is definitely the hallmark!! Say hello to big girl Claire!!!

    And thanks for including the Golden Girls… they always make me smile 😉

  2. Yasmine
    October 18th, 2011 at 5:57 pm #

    I love me some Claire smiles. and I love me some Lily, so I love these pictures. I love the picture of Lily in the background, cause she cracks me up.

    I love the picture of Claire and Chloe, Chloe is saying “teach me how to do Loco Legs Claire!”

  3. Kavita
    October 18th, 2011 at 8:08 pm #

    Nicky, that post really touched me. You have an amazing talent with words and showing your raw side. I hurt for you and at the same time I feel admiration and respect for you. You are one amazing woman and that Claire – she is brilliant! I continue to believe in her future, in the possibilities, in the anticipation and the ‘what could be’s’. I love how much she has impacted your world and the worlds of those around her – even my world. 🙂

    Thank you for posting those pictures! I can’t believe how much she has grown and how tall she is getting! And her smile – it is just so precious!

    Love, love
    ~k

    x

  4. elizabeth
    October 22nd, 2011 at 1:16 pm #

    I can’t believe how big Claire has gotten! She is so cute and always dressed so fashionably (is that even a word?!).

    You are such a great advocate and voice for your daughter. Here’s to staying positive that the future holds only the best for your family 🙂
    -elizabeth

  5. Amber
    October 24th, 2011 at 8:01 am #

    Hands down Claire still has the best hair of anyone I know. And the Golden Girls crack me up! Love it. Miss you guys!

  6. Sarah
    November 13th, 2011 at 7:13 pm #

    Such a sweet family post. Very satisfying to read the goodness stirring between you all. Thanks for sharing. =)

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