November 10, 2010 by Victoria Strong

We are spent.




We were coasting. Coping. Busy with a capital "B", but glad it was all positive, good stuff.

But. It's not all positive.

Gwendolyn is fine. Thank God. But "fine" in the SMA world is still an awful lot of life saving. And that is hard. Plain hard. Last night Gwendolyn turned blue in the bath. Nothing happened. She was simply too tired. She didn't take a nap. And simply because she was tired, she couldn't breathe. Even though she wanted a bath. Even though she was excited to sing princess music with Mommy and Daddy. Even though she was fine one minute. She was blue in the next and we were running her, still wet and soapy, to get her breathing machine back on. But, she's fine now. And so we breathe a sigh of relief. But, it takes a toll.

I sometimes find myself singing (in my mind) a song from one of Gwendolyn's current movie favorites, "Finding Nemo."

Just keep swimming, just keep swimming, swimming, swimming...

Because we have to. We have to carry on. Even though we sometimes feel knocked down, we have to dust off and keep going. Gwendolyn needs us. We need each other. And so we just keep swimming.

But, we are dealing with some other stressful things on top of SMA. Big stuff. And it is tough. Really tough. Navigating life with SMA is trying and testing on a day-to-day basis. There are no breaks or breathers from the realities of this disease. But "normal" life goes on around us and other stresses come in and out of our lives. We're already gasping for air with SMA and these other factors can sometimes push that stress level over the top making us feel like we aren't swimming as well as we usually do. And sometimes we feel like we can barely swim at all.

We are so busy with trying to give Gwendolyn fun and rich experiences, navigating preschool and new equipment, the pressures of normal life and regular obligations, and the breadth and depth of all the wonderful yet consuming things that are happening with the Gwendolyn Strong Foundation that we simply carry on because that's what we have to do. And sometimes we don't stop the way we used to to decompress. And we are feeling like we need to -- just a bit.

We have to.

Because when extra life stresses happen, well, we don't have much room for those extras.

Don't worry, we aren't throwing the towel in -- nowhere near that. Just stopping for a minute, trying to catch our breath, so we can...

Just keep swimming, just keep swimming, swimming, swimming....

Talk About It

I know exactly how you minute you think you have a handle on everything, and the next you realize you don't. We took Nicholas to his pulminology appointment yesterday afternoon and they told us to discuss what we would like to do when Nicholas becomes very weak and is hospitalized again. We've already discussed it and I hate being reminded that we have to make those decisions that no parent should ever have to make for their child. I feel as if I have been punched in the stomach when a doctor says this to me. My throat gets tight and I have to fight back tears and grab my child's hand and tell myself, everything is okay at this moment. I have to treasure every moment and not worry about the future for I don't know what it holds. Maybe someday there will be a cure for our kiddos and we can let go of these worries and stresses. For now, I guess, we will just "keep swimming." Much love to you, Strong family.
Posted by Jessica on 2010-11-10 09:59:57
I am so glad she & you two are OK. I can just imagine how scary that was- You two do a great job caring for her!!!
Posted by Hillary on 2010-11-10 10:03:08
Victoria; Wishing you guys a bit of rest and some serentiy in these trying times. Gwendolyn you and Bill are in my thoughts and prayers. You inspire so many people and I am so proud to call you guys friends. Wishing you the best Your Friend Stephen
Posted by stephen taylor on 2010-11-10 10:06:47
You guys are OLYMPIANS in the swimming event. You are winners - all three of you. You are strong (Strong) and you have grit that will always serve you well - whether the adrenaline is needed or not. You have put in the hard work (herculean really) and there is, and always will be, an Order of the Universe for this effort. Sometimes it is not fully apparent until a later time when you look back at all these years. Your mission serves many, and that is why it requires so much "giving" on your parts. You are a beautiful family, inside and out, despite the amount of energy it takes to make this important and loving journey.
Posted by Julie Brennan on 2010-11-10 10:08:30
I love you all so much! Hang in there and take all the time you need. I never want to regret overlooking the simple things like family time or story time or just time together because I was too busy with other things. Gwendolyn is such a lucky little girl to have the best parents in the whole wide world! Love and Hugs!
Posted by Jaime Gooden on 2010-11-10 10:22:11
hugs ................. and a few tears to you all. I just don't see how you do it all. I think I needed to hear that you are spent..... how could you not be. It just seems that you are "super family". Enjoy that sweet girl............. Penny
Posted by Penny on 2010-11-10 10:36:56
Your story is so so similar to ours,as are nearly all SMA stories...My brave Grandson Conor had so so many critical times as many famillies face every day!!!But all that changed when our precious boy was 3yrs old....He was so weak and on his bi-pap literally 24/7,and his little body could not cope anymore,even though his mind was so so strong..After much soul-searching and discussions with Doctors and care team it was decided with Conors say so to give our boy a traecheostomy...Fast forward 4years and our amazing boy is living life to the FULL!!!!He goes to school full time,loves Dinosaurs,Disney movies,and recently went on a Zip Wire whilst in his wheelchair!!!This little fella lives life to the MAX due to his Spirit of living life and the fact his Mummy and Daddy don't look at what he can't do...but what he can do..and that is Live Life to the full as you only get one make the most of it...I know Conor inspires people and hope his little story brings a smile to peoples faces..Love n strength from Liverpool,England.xx
Posted by Julie Durkin on 2010-11-10 10:59:15
Hugs hugs hugs ands more hugs. :( I'm sorry, sweetie. I know how tired you are. Wish I could come and take you out for lunch or something, just for a little while.
Posted by Devon on 2010-11-10 11:11:37
Victoria and Bill! You have my chin dropped to the floor of amazement how you can keep on fighting and still smile and look so good. How you keep on endeavor to get the best care for Gwendolyn. This is the kind of post when I want to console you by quoting the whole book that I gave you at the Chase Community celebration. It's an easy read and perhaps it can give you more strength and hope. This world is not it. There will be a paradise on earth where sick ones will be cured and dead ones will be resurrected, and it's not going to cost any money or be in need of expert-doctors because God and Jesus is doing it. Isaiah 35:5,6 John 5:28,29
Posted by Cecille Manson on 2010-11-10 11:16:41
Strong---strength---determination---dedication---beauty---love---You guys have all of these characteristics and soooooooooooo many more. You are tired---stressed---exhausted----understandably so, yet you keep on going---thriving. We all know the bundle of energy you and Bill are, but sometimes you just need to recharge those batteries and take a long breath. Feel the warmth of love through Gwendolyn's eyes and know that it is OK to feel this way. To the bravest people I know, honestly....sending you so, so much positive energy, love, and hugs. We are in your corner---and always will be. You have changed the lives of so many..... be well, Lisa smile
Posted by Lisa Prokopetz on 2010-11-10 11:47:30
Through tears I read your post and am just so amazed that you do all you do, are fighting 100% of the time and you still have to "keep swimming". I can only imagine how much you would like a break, how much you wish SMA didn't control your day, but you do all you for little G and I know the joy you see in her gives you the strength, the push, to keep doing what you are. I know you aren't looking for a pat on the back, you do this for your little girl and are happy to, but at the same time please know you are so inspiring. I will be honest, the last two days I have felt spent, frustrated with my girls, annoyed over the 'little thigns' and I know that happens regardless of our situations but this really put things into perspective. You "keep swimming" with an everyday uphill battle, and you do it with so much more patience, grace and love of life than I do....that is a hard pill to take but at the same time a truly good reminder to push myself more, to keep my chin up and not let the little things bring me down. Please know you are always in my thoughts and prayers and you have all touched my life so much...."Strong" doesn't do you all justice. Hugs, Em
Posted by Emma on 2010-11-10 11:51:00
Victoria, Bill and Gwendolyn, Remember that it is okay to take a break and savor the sweet moments. There are literally thousands of us out here thinking and praying for all of you all of the time. While you take the time to decompress, the rest of us will continue to keep spreading the word, to keep fighting...We all need a break sometimes. Thank goodness there is a growing community of us willing to support each other. Take some time to breathe, and know that you are supported, loved, thought about and prayed for. Wishing a much more enjoyable bath time and peaceful evening tonight,
Posted by Kristen on 2010-11-10 12:26:37
Tonight in the UK is a programme called the Pride of Britain awards ..... Having read your post and knowing what you do to KEEP ON SWIMMING ... you the Strong family so deserve an award for how inspiring you are to all of us touched by SMA .... keep on swimming, keep on fighting and keep on inspiriing. Thoughts and prayers always, Angel Mollie Whitfield's aunty ally-cat xox
Posted by Alyson Callis on 2010-11-10 12:32:57
Oh my friends.My life preserver comes in the form of love and prayers.I wish it were enough.I wish I could whiz up there and hug you right now.Well,I actually could and I would,in a moment.If I knew it would help.Hoping we can connect,before too much more time passes.You are all never far from my mind and always,always in my heart.Always.
Posted by Zoey's mom on 2010-11-10 13:16:52
Everyone needs a break- even super parents. You shouldn't even hesitate to take as much time as you need to be with your precious daughter and just live in the moment, in each others love. And while you take a breather be confident that the rest of your SMA family (those directly affected and those not) will pick up the pieces and carry the torch for as long as need be. Because that's what family does. Take care of yourselves and your beautiful girl. It's the least you deserve! xo
Posted by Lisa Moffat on 2010-11-10 13:27:03
After passing Jeffrey's 13th angel day last week almost commendably, if I do say so myself, I was greeted this morning by a comment on my post about that day that rattled me to the core. I deleted it but will be addressing it once I gather a few wits. I've been counting to 10 more than a few times today and refusing to let words reduce me to a puddle. I've almost succeeded. I now read about your time with Miss G in the bathtub, and I feel like I need to decompress with you. We likely all do. I am so, so sorry you're experiencing the agony of SMA in such a stark way. There's nothing quite like a blue moment to jolt us out of whatever glimmer of complacency we can only dream about when SMA is in the picture. Sending big hugs and prayers that you do manage to find a way to decompress 'enough' for your sake and Gwendolyn's. To say it ain't easy doesn't begin to paint the real picture. Helen
Posted by Helen on 2010-11-10 13:57:41
Oh, V. Wish I could hug you right now. Even though Autism is nothing like SMA, I get it. I know all about "just keep swimming". It's all we can do... xxooxxoo
Posted by Dani G on 2010-11-10 14:24:59
You three are a most remarkable family and Gwendolyn is blessed in all the areas of her life you strive to give her the best possible. It's important to stop and enjoy the day-to-day with each other. My heart breaks for you. I pray everyday for a cure to come now, not next year, but now! GSF has taken off and while it's very needed and very exciting, I can only imagine that you two are not getting a lot of sleep with all the work and fundraising going on. Do you have office help with GSF? I wish I lived closer. As a now retired E.D. I would love to donate my knowledge and time to helping. Love, Mari
Posted by Mari aka "Thorney" on 2010-11-10 15:45:04
We are praying for Gwendolyn and your family and continue to be so inspired by your example. We resonate with the feelings you express so well of dealing with a serious condition that sometimes rears its head in such scary episodes....that feeling of being stressed to the point where one more thing will is more than you can bear. Maybe some days it's more apt to say "just keep limping...just keep limping..." but that's what we do out of our love and commitment to our kids. Just comforting to know that we don't limp alone. Peace, love and comfort to your family.
Posted by Rolf on 2010-11-10 16:48:32
You tucked me in, turned out the light Kept me safe and sound at night Little girls depend on things like that Brushed my teeth and combed my hair Had to drive me everywhere You were always there when I looked back You had to do it all alone Make a living, make a home Must have been as hard as it could be And when I couldn't sleep at night Scared things wouldn't turn out right You would hold my hand and sing to me Caterpillar in the tree How you wonder who you'll be Can't go far but you can always dream Wish you may and wish you might Don't you worry, hold on tight I promise you there will come a day we will find the cure for sma Sending you all love and hugs! enjoy precious Gwendolyn, and when you get tired of swimming, please know there are thousands of sma lifeguards out here that love and care about you all. xoxo Caroline
Posted by caroline Lamont on 2010-11-10 19:23:39
This blog made me cry. I so know how you feel, I feel like I could have written that blog, but as you say we just have to keep swimming... It always takes a toll on you when you´re child is having trouble breathing, I hate it so much every single time, turns my stomach up side down, it really doesn´t get easier even though it happended 100 times before. Hugs to you all and you are such fighters.
Posted by Aldis on 2010-11-11 00:55:33
Victoria & Bill & Gwendolyn, while we cannot swim for you, know that there are scores of us out here, holding you in our hearts, praying for you, crying with you, cheering you on, being inspired by you, hoping beyond hope for you... you are never alone
Posted by roy donkin on 2010-11-12 10:17:09

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