Good Things For Gwendolyn

November 24, 2010 by Victoria Strong has been a bit heavy of late. And while all of this is going on for Bill and me, we try really hard to not let it be part of Gwendolyn's life. No, Gwendolyn is 3 and should get to be just 3! And like most 3 year olds, the world is her oyster and fun can be found everywhere! So I wanted to write just about Gwendolyn and some of the good things that are part of her life right now.

Gwendolyn's Good Things:

1) Swinging on the swings. Gwendolyn has always loved the swings. She loves going to the park, but the swings at preschool are somehow extra special. I always take her off bipap, suction her, and then get her out of the stroller and, without fail, flocks of little girls come running for a chance to push Gwendolyn (and her Mommy) high up in the sky! I hold Gwendolyn in my lap and the little girls use all their might to push us (I help) and Gwendolyn excitedly looks to see who is pushing her. And then we take turns and give our friends pushes, too.

2) Snack time and feeling included. Gwendolyn loves feeling included. She loves doing what the other children are doing, even if she does it in a different way. As long as there is a resemblance to her peers, she is happy -- and proud. Snack time is the time at school when everyone sits around a table and listens to a story. They start by passing napkins (Gwendolyn wants one), passing cups (Gwendolyn holds one), passing snack (Gwendolyn wants some of this, too). She watches what everyone is doing and has surprised me by demanding peanut butter and pretzels, carrots, celery, and is excited to have me help her taste these treats -- just like all her friends.

3) Friends thinking about Gwendolyn. Gwendolyn absolutely loves when friends approach her, talk to her, tell her something, or ask her to play. At the Thanksgiving party this week, one little girl excitedly grabbed two spots at the table and said, "Gwendolyn come sit by me!" and then immediately noticed that Gwendolyn needed a napkin. And one of my favorite exchanges was with our friend Owen. He enthusiastically told us first thing in the morning, "Gwendolyn and Owen dress up and Gwendolyn's Mommy and Owen's Daddy laugh really loud." And so we did. We tried on hats. Picked out shirts. And we laughed and smiled hugely!!!

4) Racing with the boys. Last week the school put out all the tricycles, some cones, and a mini gas tank and we watched as they sped around the parking lot. Gwendolyn gave me a big "Ah-huh" when I asked her if she wanted to try. And so we gased up the stroller and headed out, swirving around the bends, cheering for our friends, and the faster we went, the more Gwendolyn squealed. It must have been that high octane fuel. smile

5) Dancing in the car. Gwendolyn is a creature of habit. The first thing she does when we put her in the car is look up at the sun roof ("Open please"). Then she looks at the radio ("Turn it on please"). Then she looks at me ("Hold hands please"). And then as we start driving to school or therapy she tells me to crank up the songs even louder and dance! She moves her wrists and taps her fingers to the beat and cracks up the louder I sing.

We love this little girl. And we love seeing her happy!

Talk About It

My Precious Grandson Conor also has SMA Type 1.He was diagnosed at 3 months and after getting thru the shock we found Dr John Bach on the internet...7years on after a lot of hospitalisations and day,s,weeks and months at our brave boys bedside he has a lovely fun filled life much like your precious little girl....I truly believe children with SMA have identical ways,as i read about each child its like a mirror image of Conor's lovely life....He loves loud music and wriggling along to all the good tunes,fave at min is the blackeyed peas...Tonights gonna be a good night!!!!Amongst many others....At 3yrs Conor was on Bi-Pap virtually 24/7 and his lung had collapsed was decided by the young man himself,his fantastic care team at Alder Hey Childrens Hospital,and his Mummy and Daddy for Conor to have a traecheostomy,within 5 hours he was watching Nemo and a day later our local Firemen called in for a surprise visit...Times have and will continue to be tough but Conor lives life to the full and recently became the proud owner of a motorised powerchair which has given him a new lease of life..he went on a zip-wire and got carried up Mount Snowdon with the Mountain Rescue for a training day...I do hope one day there will be a cure for this cruel cruel illness..Take Care,sending much love and strength from the Durkin Family in Liverpool,England..xxxxxxx
Posted by Julie Durkin on 2010-11-24 09:45:44
((((((((((((Gwendolyn, Victoria, and Bill)))))))))))))) I love love love this post!!! Thank you again for giving Gwendolyn as much of a "normal" life as you can!!! May you guys have a GREAT and HAPPY Thanksgiving!!! Until there is a cure! Kelly D < smile
Posted by Kelly D < smile on 2010-11-24 16:19:34
I too love this post! It is hard sometimes not to focus on all the negative around us, and I can't imagine how much harder that is when battling a terminal illness. I am sure it helps to turn those thoughts when you have someone as precious as G by your side reminding you not to miss 'the little things'. Thanks for sharing all these great moments with us, thinking of you and keeping you in my prayers. Hugs, Em
Posted by Emma on 2010-11-24 17:25:07
Happy Thankgiving to Bill, Victoria, and Gwendolyn, I loved reading all about the good things. What you do to provide Gwendolyn with a great 3 year old life is an inspiration. You give her your all 100% of the time, and she glows from the life you provide her. Hoping you have a wonderful Thanksgiving celebrating with friends and family. Love, Mari
Posted by Mari aka "Thorney" on 2010-11-24 18:48:02
I love showing Brodie pictures of Gwendolyn in all her "costumes". Also, Sesame Street has made a comeback in our home and I always think of G when Abby's Flying Fairy School comes on!!
Posted by Dani G on 2010-11-24 19:28:29
Oh how I love this girl! This is a wonderful post. Such a typical girl with her routine in the van. You all are so brave and inspiring.....making me want to try these things with Hayden. Watch out swing cause Hayden is coming!
Posted by Jennifer Calafiore on 2010-11-25 09:51:50
Oh we love hearing about how Gwendolyn loves life and what she is doing to have fun! It always brings a smile to my face!!
Posted by Kristen on 2010-11-25 13:52:58
Princess G has so much to offer. She obviously loves life, why? because of her parents and the love they have for her . She has done so much, a lot more than most 3yr. olds. She`s happy because the two people who love her most in all the world have taught her to love life, and given her the love and security a chid needs. God Bless you all. Carol
Posted by Carol on 2010-11-26 01:50:25
What a sweet Princess for sure! Gwendolyn is such a blessing!
Posted by Lisa on 2010-11-26 07:47:48
Thank you for these ADORABLE stories and pics!! It's wonderful and so heartwarming to hear how Gwendolyn's friends love and include her in everything. ...and she is SO beautiful! I know that all of us, sitting around our Thanksgiving tables yesterday, when asked to say what we are most thankful for, included our precious sweetheart and her family in our words, thoughts, and prayers.
Posted by Sheri on 2010-11-26 17:36:42
[...] weeks ago I posted “Good Things For Gwendolyn” about some of the fun, positive things in Gwendolyn’s life. I have seen other bloggers make [...]
Posted by Good Things For Gwendolyn Gwendolyn Strong | Gwendolyn Strong on 2010-12-11 08:01:37

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