Scary Saturday Morning

April 17, 2010 by Bill Strong
I'll preface this by saying that Gwendolyn is okay, but this is a Saturday morning that we'd like to reflect on, learn from, put in perspective, and put behind us.

This morning Gwendolyn stopped breathing, turned completely blue and cold from head to toe, and was lifeless for several minutes.We deal with varying levels of life-critical emergencies on a daily basis and we've somehow grown accustomed to jumping into EMT mode and saving Gwendolyn's life. But this one was major.

Luckily, we were both at home and I screamed frantically for Victoria's help immediately. I shook Gwendolyn a bit, suctioned her, and started using the cough assist machine to get some air into her (it kind of works like CPR would -- forcing air into her lungs). Victoria was there in seconds and after several cough assist rounds we finally started to see and hear some slight signs of life. I went to get the oxygen, which we haven't used in over a year, and by the time I was back Victoria had Gwendolyn on her bipap and I could finally see some color starting to come back through her body. After a few minutes more she opened her eyes -- completely disoriented and terrified -- and once the oxygen was running through her bipap I could tell that she was starting to breathe on her own again and that I wasn't going to lose my daughter -- not on this Saturday morning.

We've seen Gwendolyn close to the edge too many times in her short two-and-a-half year life and we've saved her from varying levels of emergencies almost every day. Regardless, we live every day knowing that some second, some day, some germ, some equipment malfunction, some choke...much too soon...Gwendolyn will stop breathing and, no matter how prepared we are or what we do, it won't be enough to save her life. We dodged a huge bullet today and are really shaken up and emotional about the whole episode. But when we come out the other side of these horrifying experiences, we are acutely reminded of how fragile our time with Gwendolyn is and that the only thing that matters is cherishing every single short second that we do have left with her. As the brutal reality of SMA has forced us to learn, there are many things that are completely out of our control, but how we decide to spend the time we have with Gwendolyn is something that is completely up to us.

Gwendolyn seems to be feeling a lot better this afternoon after a much needed nap and lots of additional snuggles. She's off of her oxygen and her stats are back to normal. It's truly incredible how resilient she is to what SMA puts her through. We're looking forward to walking down to the Earth Day festival and enjoying this beautiful day together as a family -- we all need each other an extra amount today.

Talk About It

Those scary times are just that - SCARY. I'm so glad you were both available and knew what to try. Hope the Earth Day fun helped balance out the morning!!! Lots of hugs for all of you - 'Lucy'
Posted by Helen Baldwin on 2010-04-17 15:53:51
I'm glad G. is ok!!! Hugs to all of you!! People don't realize how intensive the care is for an SMA type 1 child and what you have to do on a daily basis. Healing thoughts headed your way!
Posted by Brad Fisher (Father to Shira SMA Type 1, almost 5!!) on 2010-04-17 16:37:16
So glad Miss Gwendolyn is doing okay. Those are scary times! Twice I have just forgone the CA for some reason or another and started the mouth to mouth because it was faster! Gladd Daddy and Mommy were able to get things moving and Miss G breathing! Take care and get a good rest after so much excitement!
Posted by Jennifer Goodson on 2010-04-17 16:59:27
I'm so glad Gwendolyn is recovering so quickly!! I can't imagine...You are amazing inspirations. Hugs and Prayers to all of you <3
Posted by Laura D on 2010-04-17 17:03:14
I can't imagine how scared you must have been. I hate SMA. I'm glad she recovered so quickly. I'm sure it takes you longer...I know I'd be shaking for days. I hope all of you were able to relax a bit and enjoy the festival. Your'e in my thoughts.
Posted by kristine on 2010-04-17 17:21:44
I'm so glad and relieved Gwendolyn is okay - what a terrible thing for such a sweet little girl to have to endure. Please know you're all in my family's thoughts and prayers.
Posted by Chris on 2010-04-17 17:40:54
Posted by Dorothy on 2010-04-17 17:41:28
Love to all three of you. I hate SMA.
Posted by Margaret on 2010-04-17 18:10:41
I am SO sorry to hear about Gwendolyn (and your) very rough morning, but thankful to hear that she made it through ok. We will be saying some extra prayers for all of you, hoping that this is just some isolated incident. XOXOXO - Meri and Aaron
Posted by Meri Phelps on 2010-04-17 18:15:14
You are an amazing, incredible, beautiful family. Glad that little sweet G is ok!
Posted by Meg on 2010-04-17 18:35:32
You all are in my daily prayers and I am thankful that today turned out better than it looked.
Posted by Peter Ackerman on 2010-04-17 18:38:37
I am speechless! I am so glad Gwenolyn is OK and in such awe that you were able to stay level-headed and save your daughters life!!!!! I only hope that when that day comes (which it will), we can follow in your foot steps. Extra hugs for you all today!
Posted by Jaime Goodenou on 2010-04-17 18:47:13
Sending additional thoughts and prayers your way, and am so glad she is okay.
Posted by Holly Noble on 2010-04-17 18:54:47
Having experienced first hand the short life of a young child with a terminal disease (Cystic Fibrosis), I understand and I couldn't agree more with what I just read.
Posted by Jessica Gaynes on 2010-04-17 18:56:09
So glad to hear that Gwendolyn is okay after that horrifying ordeal! What a tough little cookie smile She is blessed to have amazing parents like you guys! Hope you enjoyed the festival, hugs to you all!
Posted by Barb Zahn on 2010-04-17 19:06:22
oh boy... i have a horrible feeling in my stomach after reading this.. so so very sorry that this is something you have to deal with daily and that today was a very very scary time for your family. amazing you guys and many other type 1 families are so quick to react and instinctively know what to do. not sure i would. ((Hugs))
Posted by Melodie on 2010-04-17 19:19:49
Im so glad to hear that she is okay. I cant imagine going through life like that. I know that someday I'll be there but i often pray that those days don't come. I look at you and your wife as inspiration for what may come but like always your family and all the others are always in my prayers.
Posted by Blanca Shore (mother to Bama SMA2) on 2010-04-17 19:28:08
Sending you guys lots of hugs! So sorry about the episode . . . very difficult for others to understand just how frightening these times are unless they have dealt with it. Even though I have seen it too many times to count, it gives me a chance to step back and be so thankful for the life that is breathed back into our sweet little ones. You are amazing parents and you will know how to handle these situations because you know her so well. Sending you our love!
Posted by Sarah Turnbull on 2010-04-17 19:42:19
You are always in my thoughts and prayers. Keep fighting Gwendolyn! xoxo
Posted by Lisa on 2010-04-17 20:00:28
Oh my gosh! I was thinking of Gwendolyn last night and to discover how close this was, is frightening. You are a very blessed family and Gwendolyn is double blessed because her parents were able to handle this time so well. You are all in my prayers...Enjoy every moment that you are given! Hope this afternoon was a joy as you created more beautiful moments together!
Posted by Bonnie Zamora on 2010-04-17 20:14:04
You are always in my prayers. I am thankful that you were able to think and act so quickly, so you can all keep fighting for another day. I hope the festival restored you. Sending lots of love your way.
Posted by Nancy Goodman on 2010-04-17 20:37:49
There are no words. I can imagine the state you were in. I'm so glad she's okay. ((hugs))
Posted by Cass on 2010-04-17 20:59:42
You guys are amazing parents! So glad she is alright. I can't begin to imagine the emotions you both felt today. Just reading your blog made me cry...again! Owen has been talking about seeing Gwendolyn for days now (he misses her), we need to get those two love birds together. Hugs to all three of you. xoxoxo
Posted by Terri Anton on 2010-04-17 21:23:27
oh my goodness, I'm so sorry, how terrifying. thank goodness Gwendolyn is ok now. I hope you all have a very restful and wonderful weekend, you deserve it!
Posted by Rebecca Young on 2010-04-17 21:58:14
So so so sorry that this is your reality. Snuggle Gwendolyn extra tonigt and try not to let the fear steal any of your joy! Working to being awareness to SMA for Gwendolyn and all her friends. Penny
Posted by Penny on 2010-04-17 22:01:32
Oh Victoria and Bill! Tears are streaming down my face at the thought of what happened... Thank God, thank God she is okay... I can not begin to imagine how scary that was for you... Im so glad she is okay. Poor, sweet little girl. Please give her an extra hug and kiss from me...
Posted by Samantha on 2010-04-17 22:20:35
I am so glad to know that Gwendolyn is OK. Thank God you were both home. You are such wonderful parents wit how you handle it all day-by-day and your love for your daughter multiplies day-by-day. I hope, after the morning you had, that you were able to enjoy the Earth Day activities and have family fun. I do have a question. Is Gwendolyn able to let go of the fear of what happened to her and understand why it happened? I apologize if this is too intrusive, I'm simply curious as to howmuch she understands the SMA she has. Keeping you all in our prayers. --Mari
Posted by Mari aka "Thorney" on 2010-04-17 23:31:40
Our hearts and prayers are with you guys....we know that feeling all too well and we want you to know that we are sending you vibes of love and comfort today as you try to recover from that terrifying episode. Much love and hugs to all three of you, Melanie, Jason and our angel Emersyn xoxoxoxoxo
Posted by Melanie Klomp on 2010-04-18 06:54:53
Sending our hugs and love your way!! Life is always put back into perspective after I read your daily reality. I am so so sorry that you had such a horribly scary experience...I cannot even fathom how you must have felt. Miss Gwendolyn is the luckiest girl to have such amazing parents. Keep on hugging each other and I hope that you enjoy the earth day festivities! Be well.... Lisa smile
Posted by Lisa Prokopetz on 2010-04-18 07:22:17
Oh my goodnessPraise the Lord she is ok now. Hug that sweet big girl for the Dorris family for us.
Posted by Lisa on 2010-04-18 09:14:34
I am so sorry you had to go through that, and ever have to go through the motions of saving your daughters parent should have to go through that! I am so glad that Gwendolyn is okay and that she has both of you there for her. Thank you for sharing these moments with us, no matter how hard they are to read, it certainly helps put SMA in perspective and teaches us all to appreciate life, our children and families a little more all the time. Love, hugs and prayers, Emma
Posted by Emma on 2010-04-18 09:30:01
Sorry you all have experienced this but so wonderfully joyous you knew how to react. Super job!!!! SMA is a crazy deal and you all continue to navigate it well. It does get easier (I think) as our kids become more savy and can communicate easier with us. Again, great job!!!! Dani, Beth and Frank Pruitt
Posted by Beth Pruitt on 2010-04-18 18:18:37
I'm with Margaret - I hate SMA. You have all of our love and support. We're always thinking of y'all, and of beautiful, courageous Gwendolyn. Love, Jon G., Kelly, Camie and Alli
Posted by Jon G. on 2010-04-18 19:42:20
Dear Victoria and Bill, I pray more and more each day for precious Gwendolyn, but especially for both of you. Although we have never met, other than email, I do know the terror you are experiencing...I am Zane's grandmother. It is an incredible life you are giving your angel...the love she receives from Mommy and Daddy is staggering.!! GOD BLESS THE STRONG FAMILY, Catherine Dunlop
Posted by CATHERINE DUNLOP on 2010-04-19 08:43:03
So much hits me out of this--the reality of having to live life in a place we would all hope to spend just as little time as possible, your love for Gwendolyn so clearly displayed in your expertise and response, the commitment to love without guarantee of outcomes, etc. Thank you for the model you continue to be to all of us navigating life with kids facing such challenges. Peace to you all this week, Rolf
Posted by Rolf Geyling on 2010-04-20 15:50:08
Victoria, I've been gone awhile too with a crashed hard drive - now all fixed - and my heart is pounding after reading this entry. You're right when you say that none of us not in your situation can even begin to imagine the fear you live with every day....but you counter it with courage, grace, and peresverance. I send you all hugs and kisses...and to above, fervent prayers of thanks.
Posted by sheri on 2010-04-30 22:30:30

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