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Moving Forward

April 18, 2010 by Victoria Strong
We are doing okay. Gwendolyn is back to wanting books and songs and helicopter rides. But it is going to take us a good while to fully recover from that episode. Sheer minutes, perhaps seconds, rallied in our favor yesterday and it is difficult not to think of the what ifs.

This isn't the first time we have nearly lost Gwendolyn. The first time came just two weeks after Gwendolyn was diagnosed with SMA. We had no idea what we were doing, she was still sitting up in her car seat, and she simply choked on her own saliva. Luckily we were across the street from the emergency room and had literally just met with our pulmonologist and so Gwendolyn got immediate support and help -- and we did, too. She has since had other chokes and even though we now know how to handle them they still scare the life out of us. But, this time was different. She didn't choke yesterday. She simply stopped breathing. We have analyzed and reassessed and discussed and rehashed and basically what it boils down to is our little girl was off her BiPap too long and simply got too tired to breathe on her own. No warning. No sound. She just stopped.

This time was also different because Gwendolyn is now old enough to have a deeper understanding of what happened. She was clearly scared when she was resuscitated and even hours later she was clingy and wanted reassurance -- and I don't blame her. And the hardest part is although she made no peep that we could hear, I believe that in her mind she told us she needed her BiPap, she told us she was getting tired, she may have even screamed for help...and we did nothing. We talked to her about it all, told her that we are so sorry, that we didn't hear her, that we know she was so scared, that we always love her...and she listened and needed to hear it. She needed to know that it wasn't because we were ignoring her.

Some time ago we watched the film The Diving Bell and the Butterfly (not really sure why we rented it as it hit way closer to home than is sometimes good for us). Even though it is not about a child, that film has stayed with me and I try to remember the lack of verbal communication from Gwendolyn has no connection with what communication is going on in her mind. Gwendolyn's cognition is exactly like any other 2 1/2 year old, she just can't get any of it out. And for Gwendolyn, who endures so much on a daily basis, I can only imagine what she wants to tell us.

We feel heavy, we feel shaken, we feel so very fortunate that we still have our little girl. And we also feel acutely aware that she deserves the very best life we can give her while we still can. It would be easy for us to be so scared that we go into lock down mode -- we've done that many times before -- but she deserves more. Life moves forward and she wants to be part of it. So today we will hide our emotional bruises and do something fun for Gwendolyn.

Talk About It

I can't wait to hear about what fun thing you're doing today with your incredible girl.
Posted by Margaret on 2010-04-18 10:11:16
It is so heartbreaking to know how close you came yesterday. I am shaken, too... I've been thinking of you guys nonstop. I too would be so upset at the thought that she was probably trying to ask for help and couldn't. Im sending lots of love and prayers your way... xoxo
Posted by Samantha on 2010-04-18 10:16:15
I don't know how you do it. My own heart dropped when I read that post yesterday and I am simply a stranger who adores your girl. I pray all will be well and that she, and you, will be comforted. I wish I could do more.....
Posted by Misty on 2010-04-18 11:54:42
I think about you guys several times a day... You both are incredible for all you do for SMA, but most of all, for the amazing things you do for sweet Gwendolyn. Hugs to the princess for me.
Posted by Danielle on 2010-04-18 11:59:50
As it has been said before---before your family name is perfect for you! S T R O N G!!!!!!! Persevere--dedicate---love----all of the attributes that make you such a truly wonderful family! Praying for continued strength for Miss G. Be well... Lisa smile
Posted by Lisa Prokopetz on 2010-04-18 16:29:33
I cannot even imagine how you and Bill do what you do, but I do know the why. I've been thinking about you all since reading yesterdays post, and parying for you (which we do every day.) I hope you were able to enjoy your outting, as a family, today and Gwendolyn was in her very happy space of being with Mommy and Daddy outside having fun and experiencing a world full of new adventures awaiting her. Thank you the update. --Mari
Posted by Mari aka "Thorney" on 2010-04-18 17:33:24
You guys. Ugh. ((hugs))
Posted by Cass on 2010-04-18 17:59:07
I am always so amazed at how you work so hard to know Gwendolyn and what she needs and what she says when it would be so easy to think that because you can't physically hear her that she has nothing to say. You are all blessed to have one another. I'm so sorry that you all had a rough day and glad that you were able to deconstruct what happened.
Posted by Robin on 2010-04-18 20:52:22
"Some see a hopeless end while others see endless hope" ~ author unkown It's great to be in the company of people that see endless hope! Give G. a hug from us Canadians!!
Posted by Brad Fisher (Father to Shira SMA Type 1, almost 5!!) on 2010-04-18 21:11:45
As 'mommy' n 'daddy' to Gwendolyn all I can say is U are amazing. Yes, the movie title really its home. She is 'our precious princess' n I know how strong she is. Hugs n extra kisses to all!
Posted by Auntie Weez on 2010-04-19 06:37:36
Praying for good days ahead. I have a question. Would it benifit Gwendolyn if she went on a "Vent"?
Posted by Lisa on 2010-04-19 06:44:30
I just read your post and I am so sorry that all of you had to deal with that. My heart goes out to you. I'm glad that Gwendolyn is doing better. I can't wait for a day when there is no SMA. Much love to you and Bill and give Gwendolyn lots of hugs and love from us.
Posted by Jennifer on 2010-04-19 07:05:24
I love what Brad Fisher had to say... so true. Love you guys and am keeping you in my thoughts and prayers.
Posted by Theresa Portugal on 2010-04-19 09:50:23
Many prayers for Gwendolyn, your husband and yourself from South Alabama.
Posted by Blanca Shore on 2010-04-19 10:25:31
Don't know how you guys do it - but you are an inspiration and example to us all, about what's really important in life. I think about you guys everyday and hope for the best for all of you. XOXO, Leigh
Posted by Leigh Hope on 2010-04-19 10:27:12
Prayers go out to your entire family! I have been a long time "visitor" but never commented. But Gwendolyn has really touched my heart!! May God continue to bless this time that you have with her!!! Thinking of y'all always, from Georgia.
Posted by Courtney Raines on 2010-04-19 10:30:35
You guys are truly an amazing family.
Posted by Jack on 2010-04-19 15:10:51
Victoria, what you wrote in this post about communication really jumped out at me. I'm fully verbal (probably *too* verbal if you ask some people!) but as you know I just got my new Permobil with the Ride seating system. While the posture it puts me in is exponentially better for my posture and long-term health, it's taking away my ability to use a regular mouse & keyboard. So I've been thrust into the world of assisted communication devices and software, and WOW… it's amazing what kind of stuff is out there these days. Have you had Gwen assessed with an OT/speech therapist to work on making it easier for her to express herself? I have no doubt that the tech is available, or that she's bright enough to master it. When our bodies don't work, our only power comes from our ability to communicate. As Gwendolyn gets older and understands more, two-way communication will be vital to her emotional health. Hang in there...
Posted by Becky on 2010-04-25 13:41:13

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