Having a hard time

June 16, 2011 by Victoria Strong

Having a hard time.

I don't know if it is the June gloom or if being in the hospital has messed with my mood, but I'm in a funk. And it's a low one. The reality of SMA is weighing heavily on my chest like a load of bricks and I'm having trouble catching my breath.

For such a long time we've been plodding along. Every day that Gwendolyn is healthy helps me move forward... put one foot in front of the other. There was a time when I wouldn't leave her side. I was afraid to be away from her for even a minute. I was afraid to take her outside. I was afraid to have her around other people. I was afraid and that fear paralyzed me. I think I've come a long way since then -- we, as a family, have. I know Gwendolyn and her joy for life is the reason. And somewhere along the way I let go of fear... and Gwendolyn helped me with that, too.

But, that doesn't change the reality. SMA is terminal. And while I don't allow that to define Gwendolyn, it is impossible for it not to creep in. It makes living a "normal" life difficult. It makes every milestone enormous. It makes every good thing more tangibly pivotal. It makes every illness petrifying. I know that life is precious for everyone and can be cut short at a moment's notice. But the difference is I know that life will be short for my child. And sometimes that can be overwhelming.

It has been a brutal year for SMA. Far, far too many children have lost their lives to this disease and this year seems to have been especially unrelenting. Some children we know and many we don't, but there is a regular reminder that SMA is terminal.

Last week our friends the Liston's lost their nearly four-year-old daughter, Brynlee. We've known Brynlee since Gwendolyn's diagnosis. She was a firecracker -- spunky, smiley, beautiful, and strong -- much stronger physically than Gwendolyn. She was healthy -- in fact, just days before she passed away she got to have her first sleep over party with her cousin at her aunt's house. And then suddenly on a regular day, with no signs of illness, she went into cardiac arrest. I didn't even think about this being a possibility for a child so small. But this is SMA.

In April, our friends, Kate and Mike Van De Loo, lost their baby, Ciara, to SMA. She wasn't even one yet. The Van De Loo family are just like any family. Ciara was their second child. They had a regular pregnancy. She seemed perfectly healthy when she was born and then boom -- SMA. Ciara seemed so strong. They took such good care of her. They had great doctors. But sometimes that isn't enough. This is SMA.


Just a few weeks later, SMA claimed the life of Sydney Potjer. Sydney was one of the children we gifted an iPad to last year. I think my favorite part of the bio her mom submitted about Sydney for the giveaway was, "Her favorite words are I don't need help or I can help you, let me try." She was six-years-old. This is SMA.

These are just three of the amazing children this disease has claimed recently. There are sadly many more. And they are smart and funny and strong and brave and someone's entire world. Loss is such a defining part of the SMA community that children are referred to as warriors while living and angels once they have passed. And while I still have the gift of defining Gwendolyn as a warrior, it pains me every single time I write it. No three-year-old should be defined as a warrior. They should be laughing and twirling and singing at the top of their lungs and throwing temper tantrums and completely naive to what warrior means. I want to be able to say, "This is my daughter Gwendolyn and she is an SMA survivor." No, I want Gwendolyn to be able to say that. And not with an ellipsis inferring "for now."

Talk About It

Huge hugs Victoria, it breaks my heart that many of us learn to hold our children tighter and appreciate them more at the exprense of other precious little lives. The faces in the pictures ARE someone's precious to infinity and beyond child. While we "get that" at our house we have broken hearts for all families that live with such harsh reality everyday, every hour, every minute...... We intend on screaming from every point we can to make everyone aware of this cruel disease. We know that the more people that know and understand the quicker this disease will be a memory. We see children and families that work everyday to live beyond the disease. They humble, inspire and frankly, keep us grounded in our lives. Keep being the awesome warrior parent that you are! Your not fighting alone even when it feels like you are, Like in the story of Horton, we are the "Whos" and we are screaming.........we are here! We Are Here! WE ARE HERE! Huge hugs to your family and especially the incredible Miss G!
Posted by Penny on 2011-06-16 12:47:52
Victoria - Its ok to have days like today the stress of dealing with SMA can definately be overwhelming. We lost our sweet baby boy Cody Andrew Munz three years ago today on 6/16/08..He was just 4 1/2 months old but had the brightest smile and personality you could imagine. It brings tears to my eyes to read about children and families that experience this terrible disease. Will be thinking about you and your family today ! I dont know you or your husband but we are friends on facebook and it is amazing all of the things you do to spread the word about SMA and to raise moeny to help find a cure. Maybe we can meet some day as I am in California often for work and I would love to meet Gwendolyn.. Take Care..
Posted by Matt Munz on 2011-06-16 12:50:35
ok, I'm in tears! this has been a horrible year and so many families have lost their precious babies to this horrendous disease. i am sorry that you have been struggling to stay positive, bey hey - that's SMA. I know my perspective is completely different than yours but I have days where I feel like a warrior and other days where I just want to order the damn wheelchair and get it over with. I slipped in the kitchen a couple days ago and went down hard. It upset me for a while, falls always do. But then I assessed the damage, or lack there of. My thigh was sore but both ankles and knees were ok. I was thankful. Thankful that once again, nothing was broken or torn. Thankful that I would not need to sit in the ER for 5 hours. Thankful that I would not need to get around my house on my scooter because I couldn't walk. I think I am starting to get a handle on this disease and how it affects me. I think with SMA all you can do is be thankful for the little things. Keep your head up gorgeous, you are an amazing woman doing amazing things! Be thankful for the small stuff and don't sweat the big things. Try to be happy in the now and not worry about the whens or what ifs. You can't control them and all they will do is drive you mad! Love you, kiss G for me!
Posted by Laurie on 2011-06-16 12:52:39
strength---courage----determination----words cannot adequately express how I and many others feel about you, Miss G and Bill. But the first three words sum it up as best as I can describe. Feel what you feel---let come in waves as it does---snuggle miss g and love her as you do minute by minute. I keep you in my heart and prayers daily. thinking of you oh so often....sending you positive energy and so , so much love! be as well as you can.... Lisa smile
Posted by Lisa Prokopetz on 2011-06-16 13:09:34
We all get in an SMA funk now and is alright to be sad, angry, scared and confused. We move on from that and start living life again and take the joy from the time we have now. Prayers will be said for all of the SMA families that have lost a child....praying for Gwendolyn to feel better and for her Mommy and Daddy to feel better too. :o)
Posted by Tammy Duke on 2011-06-16 13:18:19
Just sending love and prayers and lots of it, because we truly know,it is about all we can do for you right now,my sweet,sweet friend. *Heading to SB for the Buddy Walk on Saturday.Thought perhaps I could do a quick drive by and run to the door,give you a hug and give Miss G a little something we have for her.Let me pressure and PLEASE say no if you are not up to it.
Posted by Zoey's mom on 2011-06-16 14:34:23
[...] Having a hard time June 16, 2011 By Victoria 5 Comment [...]
Posted by A Must Read Blog by Victoria Strong, Mom of Gwendolyn. This is SMA. | A Journey with Maia & SMA on 2011-06-16 14:37:14
This past year truly has taken it's toll on so many of these kids, many are close to us here in Utah. At first you want to distance yourself from it all because it doesn't hurt as much. Sooner or later you start to explore the sma community and these people become a part of your life, a part of your family. It's been so hard to see so many pass away this past year especially those that are Riley's age. It feels like I'm holding my breath now not wanting Riley to be next. He is so full of life and it kills me to see him robbed of that. I too want him to say that he's an SMA survivor, but even though he may not survive the disease itself he did survive so many challenges of it.
Posted by Becah Ogden on 2011-06-16 14:45:57
Posted by Dorothy on 2011-06-16 15:12:08
Sending some love to you and your family ------>
Posted by Elizabeth Wagner on 2011-06-16 15:26:12
Ah honey....I am so sorry. I know how the reality can come and just smack you in the face sometimes. It sucks. So much. Hugs.
Posted by Devon on 2011-06-16 15:36:45
Victoria, I am so sorry. I am sorry you have to have days like this, sorry you have to live with the reality of SMA each and every day...noone should have to and I hope in the near future noone does. I cant understand the depth of your pain but in the way that I can I share it with you. Love, hugs, strength and prayers for you and all the other SMA families out there....Em
Posted by Emma on 2011-06-16 15:45:38
Victoria, I speak of you and Gwendoyln on a regular bases to friends and sometimes to perfect strangers. When I am feeling low, because my son and Grandsons have moved to Seattle, I am reminded of how lucky I really am to have a healthy family. You are such an inspiration to me because of your constant, endless strength and your fight for SMA, to help so many others with your unselfishness and love. You are really a REMARKABLE woman!!!! I question the reason why YOU have been given this heavy burden, but I do know YOU WILL make a difference. Give Miss G a big hug for me and know that you always in my thoughts........
Posted by peggy cameron on 2011-06-16 15:54:11
I wish I had words that could come close to comforting you. But times like these are when words fail miserably. I find since SMA and Chloe words fail me most of the time. Gwendolyn, you, and Bill are lights for many of us. I know these feelings- oh Victoria- like I wrote them. The weight is almost unbearable. The knowing and waiting.....I found I could barely enjoy Chloe those first few months. I kept waiting for something to happen. And now that she IS gone, I look back and wondered how I survived. I wish we didn't have to know eachother this way. I hate it. It is more than most people can bear. I pray for your strength and peace. Love you all.
Posted by Corinne on 2011-06-16 16:39:47
I'm so sorry to hear that you're in a funk. SMA SUCKS and you have every right to feel like that. Let it over take you for a while and then you'll snap back because you are AMAZING! Know that you are loved and that you are being sent positive energy from all over. Many, many prayers are being said for you and yours. ((((HUGS)))) You know where to find me!
Posted by Kristen on 2011-06-16 18:10:43
Patience, confidence and faith... These words came to my head the day my son was diagnosed, Thanksgiving of 2008. They came right when I looked into his eyes, mine in tears, his' sparkling with that inner light they have. He was intubated for the 70th didn't matter. He was about to be trached...didn't matter...his bone marrow was depleted because of all the many antibiotics he had...didn't matter. Prognosis, 9 more months at the most...didn't matter. Time stopped. His eyes blinked in that particular way. He looked into my soul and then: "patience, confidence and faith...daddy, everything will be alright. Because we love each other. This is my purpose, to teach how to love..." Those 30 seconds had my whole grief. Those only 30 seconds. Then, Virgin Mary came to my head. She was assigned the task to bring his firstborn as Son of God. At 16 years of age, knowing that her life was not going to be easy, and pottentialy she will see her son death, she didnt hesitate. She didn't ask for time to think about it. She didn't. Didn't asked why. She looked at the angel, and said "yes". She embraced her son's purpose even before he was born. She suffered, but thanks to her decision of patience, confidence and faith, she changed the world. How can we feel punished, or cursed, or somehow angry when we see the big picture? Our kids fulfill their purposes even before they are born! They don't need college to start changing people's lives; they just breathe, and smile, and look inside everyone's souls. I feel blessed, and so we all shall...
Posted by Oscar llarell on 2011-06-16 18:14:10
Oh my gosh Victoria! Did you happen to read my post on Rudy's Beat today?...almost verbatum to yours! Thank you for your honesty and for the encouragement it brings to another mom in pain. Know that I share your burden tonight and lift all the Strongs up in prayer....always but especially so tonight....I'm also praying for sun! Blessings, Trish
Posted by Trish on 2011-06-16 20:04:00
Victoria, You, Gwendolyn and your family are in my prayers. I've gotten to "know" your family through Mike and Kate and all the wonderful advice, help, support you have provided them. Thank you for all that you do! I wish there was more I could say or do, but please know that not only is Gwendolyn an inspiration, but your whole family is! SMA is the most horrible disease I never thought could exist; but all these families brought together because of it are united in our fight to beat it! Again, you are in my thoughts and prayers. Leah VanDeloo
Posted by Leah VanDeloo on 2011-06-17 07:24:37
It always amazes me how when a parent of an SMA child writes about their child or their life, they are writing about my child, my life. Although the names are different, the stories are so similar. It's as if you have read my mind and taken the words right out of my heart. I have come to realize that caring for a child with SMA is like having Post Traumatic Stress Syndrome. Every time your child gets a cold it brings you back to the day they were first diagnosed. When other children stare, when you make a decision to keep your child home from school, etc., all of these bring me back to day 1, the day doctors told me "your son has SMA Type I and will die before the age of two". The good days are truely GREAT days....but when that bad day slips is truely bad. It' s not normal to have fight for your child every day to receive simple services or an education, to worry as much as we do, to totally give up your life to improve theirs, to lose your privacy...but it is what every SMA parent does, and we wouldn't have it any other way! I couldn't imagine my life without Nicholas or my other two healthy boys. And I will continue to fight for him and other SMA children until SMA ceases to exist! We will have many bad days ahead of us......but we so look forward to the GREAT days!!!
Posted by Kathleen Piazza on 2011-06-17 08:30:11
I wanted to add one more Nicholas wll be 18 years old in September....NEVER GIVE UP!!
Posted by Kathleen Piazza on 2011-06-17 08:31:28
Victoria, My heart is crying for you and all th other SMA families. You are so open when you express your feelings, giving us a small glimpse. Our prayers are with you all. --Mari
Posted by Mari on 2011-06-17 18:44:50
Thank you for bearing your soul. SMA takes such a toll on all of us. Wishing you strength and happiness.
Posted by gettyowl on 2011-06-17 21:24:47
It must be really hard to watch your child struggle with such a terrible syndrome. Although I have only had the privilege to meet Gwendolyn once, your blog has truly educated me and my family, not only about SMA but about the struggles and fears in raising a child with any health issue. I have loved watching the creative ways that you have broadened Gwendolyn's horizons. I know because of you that I have learned to appreciate the little things in life so much more than before. Thank you for sharing and I know that God holds your family in the palm of his hand. Your blog enriches my life and those of my children as we learn to appreciate each moment and to glimpse the world through a different lens.
Posted by Christy Pinuelas on 2011-06-18 17:42:27
I did not have access/time for internet on the past few days, so I just read this. I am sorry you were feeling like this, it seems that SMA parents take turns in feeling up and down. One good thing we have is each other, so please know that even though we are all very far away you are close to our hearts and we really feel and understand your pain. Thinking of you and sending lots and lots of hugs!!
Posted by Marcela on 2011-06-20 21:15:07
Oh, V. You know you just made me cry. Hugest hugs to G, and a hug and a glass of wine to you and B. xoxo
Posted by Cass on 2011-06-20 22:23:44

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