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Preschool Photo Shoot and the Small Things

March 18, 2011 by Bill Strong

Yesterday, Gwendolyn had her preschool photo shoot. She took her class picture with all of her school friends and teachers. And then -- just like all of the other kids -- she excitedly took her posed solo shots sitting in her purple tumbleform chair in front of a cheesy faux windowsill setup smile She was so unbelievably proud. And I was so unbelievably proud of her. And it was wonderful. Gwendolyn loved it. And I loved it. Every second of it.

But I'd be lying if I didn't admit that it was a pretty emotional day for me. With Gwendolyn's SMA there are few, if any, trivial experiences in our lives. We live every day -- every minute actually -- acutely aware that there is a real possibility that it may be our last with Gwendolyn -- that's the reality. We've come to learn that there are many things that we can't control with Gwendolyn's SMA, but we try and put those aside and instead stay focused on those things that we can. And we try and cherish everything. And I mean everything.

"Good mornings" have a much different meaning these days as do kisses goodnight. And that simple walk or that swing on the swings or those ducks in the pond or that fun dance song on the radio or that infrequent storm or that sunset or that impromptu family dance party are all uniquely special family experiences for us. And we hold on to every single one of them.

Three years ago when Gwendolyn was diagnosed with SMA, I thought making it to preschool (much less attending) was an impossibility. Just like her power chair. And a 5,000 mile RV adventure. And Disneyland. And Sea World. And snow sledding. And her first birthday. And her second. And her third. Given the grim statistics of an SMA diagnosis and our own experience living in the SMA world and seeing so many children taken much too soon by this brutal disease, I know we are unbelievably fortunate to even have the opportunity to experience something like preschool and a class picture with Gwendolyn. That's never lost on me and never will be. And while I don't know what tomorrow holds for Gwendolyn or if she'll be a part of next year's school picture, I know for a fact that simple experiences like this are what it's all about for Gwendolyn. Experiencing. Living. Being part of it. And savoring the small stuff (and some pretty big things as well).

Yesterday was a very special day for me. For us. I'm so proud of you Gwendolyn and I love you to pieces!

Talk About It

What an incredible day! Thank you for always reminding 'us' to take each day like it truly is, a gift. I know I am someone who, I will admit, often takes those little things for granted.....but I thank you, Victoria, and especially little G for showing me what life it truly about! You are all such an inspiration!! Hugs, Em
Posted by Emma on 2011-03-18 08:26:07
We are so proud of you G!!! What a great milestone Bill and Victoria!!! The tenacity and heart you show in providing G with a life has not gone unnoticed!!! You are an inspiration. It's so deeply moving to experience these events. Give G a heartfelt hug from her Canadian friends and tell her how proud we are of her and how beautiful she looks in her photo!
Posted by Brad Fisher on 2011-03-18 08:54:00
I love reading all about G....so inspiring! Hugs!!
Posted by Marcela Vallarino on 2011-03-18 09:12:52
Oh what a wonderful experience! You are SO sending her auntie Theresa a copy of the cheesy faux window picture so I can proudly display it! XOXO
Posted by Theresa Portugal on 2011-03-18 09:59:44
I have to admit, I flew through each of those moments with my three children, without thinking a second thought. Thank you for the reminder to cherish the small things. I read your blog each day and am so incredulous of what Gwendolyn accomplishes. Thank you so much for taking the time to share with all of us. Until I became of your blog, I did not know SMA existed. Now I am inspired to take the time and to pause and be aware of all the challenges some people overcome on a daily basis. I know her photos will be beautiful. Thanks again for sharing!
Posted by Christy Pinuelas on 2011-03-18 11:28:19
Beautiful Gwendolyn - Thank you for reminding all of us that it's those small things that mean the most in life.
Posted by Jennifer on 2011-03-18 12:54:03
thank you. thank you. thank you. I thank you from every fiber of my being....honestly. After a very long and stressful work week and watching my lil sophie enter powerfully the "terrible two's" I felt beat down. I read your words and am reminded of my many, many blessings. My family, my children....the loves of my life. Tears well up as I write this.....you must know how deeply you touch so many of us that are so far away. I am thankful and honored to know such wonderful human beings....those who inspire and respond...who dedicate and lead.....thank you for sharing the beautiful pictures....Miss G is as beautiful as ever! Cheers to a wonderful weekend! be well, Lisa smile
Posted by lisa prokopetz on 2011-03-18 12:57:50
Beautiful as always!! Thank you for reminding me how precious life is, and to never to take anything our children do for granted, and to cherish every moment smile Love Caroline xoxo
Posted by caroline Lamont on 2011-03-18 13:47:26
We watch Miss G and her adventures with excitedment for you all! You never cease to remind me of all the blessings big and small that life brings us everyday if we just take the time to notice! Cheesy or not I think that cool preschool picture is going to be a WINNER! Thank you for giving us the window to peek in to your lives and share Gwendolyn's adventures! hugs!
Posted by Penny on 2011-03-18 14:54:03
She is just so sweet! You guys are just amazing. So very inspiring for us.
Posted by Jennifer Calafiore on 2011-03-18 15:51:41
Love it!! Hugs to you Gwendolyn! You're doing great sweetheart! smile
Posted by Sarah Turnbull on 2011-03-18 19:15:23
Greetings from Austin. I love hearing how Gwendolyn is doing and so happy for the opportunity to take school pictures. --Mari
Posted by Mari on 2011-03-18 22:29:56
What a powerful piece you have written. I am a grandmother and love every single minute of it. When i look at my grandchildren and remember back to when my kids were small i realize just how much i took day to day things so casually. When i read your blog and see how much you treasure your time with miss G i know how fortunate i am. God Bless you Bill and Victoria, to live minute to minute as you do with your precious bundle makes my heart swell, i`m so inspired by you both and i just love miss G. Thank-you for having the courage to share your joys and fears. Your all in my prayers. Love Carol
Posted by Carol on 2011-03-20 13:02:50
Dear Bill, Victoria, and Miss G., Thank you for the reminders to slow down, savor the moments, and give thanks for each and everyone one of them, Much love, Margaret and the NY gang
Posted by Margaret on 2011-03-20 16:50:53
Go Gwendolyn!!! This is an amazing day!
Posted by alisha on 2011-03-20 19:38:48
Couldn't help but think of Gwendolyn when I ran by my elementary school out on the course yesterday. I got so pumped up when I remembered how excited I would get about going to school each day (I hated weekends and summer vacation!), I'm sure Gwendolyn can relate! wink Thank you for sharing this blog with us, Victoria & Bill. Definitely got choked up with these pics (but when don't I?) Hugs from New Bedford! Magda
Posted by Magda on 2011-03-22 09:44:36
Thank you for blurring out the other kids faces! I am so tired of seeing kids pictures posted on the internet with no permission from their parents!
Posted by AnnaCH on 2011-03-25 07:56:49

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