This Moment.

September 02, 2011 by Victoria Strong

When Gwendolyn was first diagnosed, within two weeks we were hit like a ton of bricks with the reality of SMA -- a consultation trip turned into a month-long hospital stay at Stanford, new routines, new machines, a surgery, so much uncertainty, a failed ambulance ride home nightmare, a collapsed lung followed by another hospital stay, emergency after emergency, no time to think about any of it. We spent much of Gwendolyn's first year moment to moment. We had faced losing our daughter multiple times, we had seen what that may look like, and we knew that even with all the intervention steps we were taking, there were no guarantees. For much of Gwendolyn's first year we simply could not look out to the next day let alone a week or a month ahead. But then she got stronger. And then she wanted more. And so we did more and more and more. And each time we saw Gwendolyn's joy we pushed ourselves a bit further. We got over ourselves and held our fears close in so she couldn't see us tremble as we tried new things, as we ventured beyond what at one point felt impossible. And then we started making plans and we began looking toward the future -- toward Gwendolyn's future.

Having to pull back the last month (really the last several), not being able to do all that we had planned to do, has been difficult. When Gwendolyn simply doesn't have it in her to go, go, go, when she doesn't want to venture or push or plan, we are having to relearn to slow down and savor. I'm not going to lie -- over the last month I've felt scared and sad and filled with worry and, of course, I still do. But, something in me (and in Bill as well) has clicked, has shifted and we are laser focused on the now. I don't think we have ever taken any day with Gwendolyn for granted, but life gets busy and we allowed ourselves to let go and just live. We have had moments of feeling pretty bummed out about the reality, but right now we are choosing to ignore the fear and focus on this moment...because even in the wake of difficulty, there is nothing more beautiful than your child.

  • This moment. The look in Gwendolyn's eye (like the soulful knowing eye of a giant whale) that signals, "Get in bed with me, I need snuggles." And after climbing over chords and tubes and settling in next to my sweet big girl, feeling her heartbeat, kissing her little head, rubbing her tiny vertebrae, and recognizing without having to look that within two minutes she has fallen into a deep sleep. This is a good moment.

  • This moment. Overhearing Bill and Gwendolyn in their own routine -- talking like a robot during the morning breathing treatment, dancing to the Mickey Mouse Clubhouse "Hot Dog" song, singing princess ballads -- and hearing Gwendolyn squeal, though more faint than usual, knowing she's smiling and feeling loved and protected. This is a good moment.

  • This moment. Reading books to Gwendolyn together, all three of us piled on the couch. Watching her fingers tap in anticipation even though she's heard the story a thousand times. Asking if we should turn the page just to hear her enthusiasm and see the excitement in her eyes. This is a good moment.

  • This moment. Gramma's Tuesdays. Seeing how confident and certain Gwendolyn is when Gramma is around, an expression that says, "What fun did you bring this week, Gramma?" and "Look how smart I am, Gramma." And all the while Gramma builds up her confidence like only a grandparent can do. This is a good moment.

  • This moment. Just the words, "You have a special present from someone special" and seeing her stop everything, pull her interest away from all else and start tapping her fingers in anticipation, seeing her take in every word from the card, looking toward the wrapping as she does. And the moment she sees her gift, the way she feels proud and special and loved. This is a good moment.

  • This moment. Dancing. While she isn't up to being twirled around as usual, just lifting up her arms while she lies flat and moving them to the music -- up, down, side to side -- pressing our cheek next to hers for a slow song or supporting her little elbows so she can move her wrists to the beat and seeing how happy this makes her... especially when we tell her what a great dancer she is. This is a good moment.

  • This moment. The simple. The unplanned. The smelling of fresh flowers. The silly face Daddy makes. The "I love you" with a soft "Guh" back. This is a good moment.

We don't have any answers yet about exactly what is going on with Gwendolyn, but we are starting to see some improvements. We hope to know more soon... and we really hope to see Gwendolyn get her full steam back. But for now we are just savoring the good moments.

Talk About It

Oh my goodness, I'm a sobbing mess! You are such wonderful parents. I know how difficult it is to think about the future...I try to focus on the present as well. (I love that top pic...she reminds me of my Reagan!)
Posted by Tera on 2011-09-02 10:39:27
Beautiful post, beautiful moments. Even though you've had to slow down you have already done SO much, you have done the impossible and in the way you have inspired so many others going through the same! Going places and living life is amazing, but snuggling tight is even more, so enjoy!! Hugs!!
Posted by Marcela on 2011-09-02 10:45:50
These are truly beautiful moments. Thank you so much for sharing them.
Posted by Dani G on 2011-09-02 10:56:15
Loving you all so very much,in all of your beautiful, beautiful moments.
Posted by Zoey's mom on 2011-09-02 11:02:31
I can't imagine a world without our special, special children. It is impossible. They teach US everything that matters. Those little moments are all there is. I only wish SMA didn't have to be there for us to stop, slow down, and see that. Love to you all.
Posted by Corinne on 2011-09-02 11:19:56
This is such a beautiful post and so "alive". I can imagine everything you write....her tapping finger. To find out that treasuring every moment in life big or small and take the best of it is a beautiful gift.
Posted by Cecille Manson on 2011-09-02 11:22:47
Thank you for this beautiful and touching post. It is a great reminder of how precious every day spent with a child truly is. It is an inspiration to me to remember to always view my days with my children as a gift and a blessing. Thank you!
Posted by jessie prahm on 2011-09-02 14:04:39
Thanks so much, Victoria. Just what I needed to read today. I had one of those moments on the couch holding Rudy early this morning where I was just overcome by those dueling emotions: joy and heartache; beauty and terror; happiness and fear. It's had me very aware today of the reality of the journey we share with medically fragile children. You and Bill are such an inspiring example. Thank you. The moments are what counts.
Posted by Rolf on 2011-09-02 14:22:46
Oh my you heart is with you. I don't know what else to say, but we are thinking of you constantly! Can't wait to hear about more of all the moments! Big, big hugs!
Posted by Lindsey Coleman on 2011-09-02 14:49:08
Beautifully said. Stay strong and focused. Cherish those moments.
Posted by Jennifer on 2011-09-02 15:06:48
This breaks my heart! I have been following your blog for over 3 years now and I am constantly amazed by not only Gwendolyn but both of you! You are amazing parents who have made sure that Gwendolyns life is full of adventure and fun, knowing that anyday could be her last. I can't imagine going through this. I want to hug you. I want to make all of your pain go away. You are a STRONG family! You have made me cherish every moment with my children more then I ever did before! You have made me grow as a mother. I am constantly amazed by you! I am a complete stranger! I am only one person! Your family has touched so many lives, you have spread the word about SMA! Thank you for helping me grow as a parent! Praying for Gwendolyn everyday! Always in my thoughts.
Posted by Heather Lemke on 2011-09-03 02:23:24
I've been so concerned about Gwendolyn and both of you at this hard time. I have sending lots of healing energy and support to all of you. I know it's got to be hard but I'm sure your beautiful supportive attitude helps Gwendolyn while she doing her best to gain her health back. Much love to all of you.
Posted by MT Grandma on 2011-09-03 09:37:03
My mom told me early on 'One day at a time' I know that has been your motto too. Be in the now. We love you so very much sweet Gwendolyn. Keep getting better so we can have some more fun moments together. Hugs, love and all the good stuff to the 3 of you.
Posted by Jennifer Calafiore on 2011-09-03 15:34:10
You and Bill are such an inspiration to us all. Keeping Gwendolyn in our prayers, an you and Bill too. --mari
Posted by Mari on 2011-09-03 20:56:16
You guys are always in my thoughts and in my heart. Please give G a big kiss for me. Love you so much! Laurie.
Posted by Laurie on 2011-09-04 19:45:13
Thinking of you three all the time... thanks for sharing these moments so all your family and friends (even the ones you haven't met yet) can savor them with you. Sending hugs, kisses, & all my love!
Posted by Kelly Gillespie on 2011-09-06 07:08:57
This evening I had the opportunity to educate myself and tour Ms Gwendolyn's website for the first time! At a time when I am dealing with some serious issues regarding my Mom's Alzheimer's and my own health I never thought a 4 year old could inspire and move me to tears at the same time!! Peace and grace to Gwendolyn as she and her family travel this bumpy road....I am so blessed to having met this angel in our cyber world and pray that others come to be affected by her engaging presence. With love to Gwendolyn and Victoria & Bill!!
Posted by Janet Grace Thomas on 2011-10-16 01:07:26

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