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Healing My Heart…

April 01, 2010 by Victoria Strong
It seems every few months Bill and I experience a time of heaviness...periods when SMA just becomes too much to bear. Days when the cruel reality of the disease takes over and skews the perspective we usually have.

Usually when I see Gwendolyn, I don't define her by her disease. This is surprising actually as SMA defines everything about our life. But, when I see Gwendolyn, I see so much more than SMA. And I love what I see. I love her feisty spirit and her very particular opinions. I love how social she is and how much she craves interaction with others. I love the way she looks at me when I sing to her as if I have the most beautiful voice she's ever heard. I love that she is such a dare devil and always wants to spin, jump, and go faster and yet is always ready for a snuggle. I love that she gets so excited to read books and loves when we are extra animated in the reading. I love how proud she is after Daddy blows her hair dry and how she admires herself in the mirror and looks at Daddy with such awe.

But, as a parent I want more for her. I want the world to be her oyster. I want her to be able to take it on and makes it her own. But SMA Type 1 makes that oyster very limited. I don't love her less because of her challenges and I know she has a full life. But, I wish she could have more.

I wish Gwendolyn did not have SMA at all. I wish her muscles were stronger and she could spend hours sitting up and driving a power chair with ease so she could actively play with her friends, go where she wants to go, move on her own. I wish she could breath without the use of a machine so she didn't need to be attached to a battery or a power outlet all the time. I wish she could speak and tell me how she feels, even if it is crushing to hear her verbalize that she feels left out or feels hurt when people stare, at least I could help her navigate those complicated emotions. I wish SMA was not degenerative and I didn't have to live with the knowledge that as painful as today is, it is far better than it will be in the future. I wish I could assume that Gwendolyn would grow to a ripe old age. I wish my special, special little girl were just a teensy bit less special. And when I start to wish these things it all starts to spiral and sometimes it takes me to places that are dark and overwhelming.

But something miraculous has been happening. Although SMA and the impact it has on our life is not going to change, the kindness of others makes it less overwhelming. The kindness and generosity of others, some friends and some complete strangers, and their willingness to join the fight against SMA or fight even harder than they were before is humbling, inspiring, uplifting and healing...incredibly healing. The kindness of others actually heals my heart, puts my feet back on the ground, and shifts my perspective back to seeing the glow of my little girl and not the darkness of this disease. And then I can be a better mother and a stronger advocate to fight, fight, fight to end SMA.

Talk About It

That was beautiful Victoria. I think I would find myself in that "dark" place a lot more often. You always remind me to enjoy Katie and to appreciate all of my time with her. She may have some challenges, but we also have many, many things to be thankful for.
Posted by Kristine on 2010-04-01 16:14:52
Victoria
what a beautiful post...
thank you
Posted by roy on 2010-04-01 16:14:53
Wow, you never fail to bring the tears. I loved the line "I wish my special special girl was a teensy bit less special".....

I tell you from a complete in real life stranger your daughter is incredible. She was gifted with such a power, she can't help but to change lives and with your drive change the world.
Posted by Penny on 2010-04-01 16:32:01
It is so scary, being a mother, knowing that at any moment something could happen and take them away. I know it is much more real for you... I have laid awake many nights thinking how much of life is out of our control. That is a very hard knowledge. But having that knowledge makes you savor every single moment with them and to make it count... You are doing amazing, wonderful things. Things no one else (that I know of) has ever done for SMA.

You are not alone. There are so many people that love Gwendolyn and you and Bill. So many people who are fighting and praying for a cure for her...

You have created a beautiful, loving, exciting, happy oyster for Gwendolyn. That is all a child really, truly needs...
Posted by Samantha on 2010-04-01 16:43:12
Since Shira's diagnosis I too feel like I walk the razors edge. Darkness and light are more vivid than ever. The future doesn't exist for me because it means Shira might not be here and the past doesn't mean anything because it's gone. The gift is the present. Shira's illness has given us the ability to live completely conscious of the here and now. There are a lot of good people out there but my problem is the fact there are so many really indifferent people out there. If we all lifted someone up every day the world would be a different place. When you are faced with life and death as we are you see more acutely. I try and judge less and live more but I get hurt much more easily than I did before. I can't watch violent movies or the news anymore as its too filled with pain and suffering. When I see what's going on in most countries in this world like Haiti I scratch my head in wonder they don't even have enough tents and food to live in. I often wonder why there is so much resistance to the disabled and why if we aren't beautiful and able we are disabled. Shira has taught me to look past the body to the soul (neshema), the real person inside the space suit. I find i'm better able to relate to the people on the fringes of society more now than the people in "society" as they seem to understand what i'm going through. Many people care but the majority don't act beyond a feeling they have. It's great when people donate and help out but i'm going to be critical and say its not enough, not enough, not enough!!!! I wish I didn't have to explain what is wrong with my daughter, that she isn't asleep just lying down, she's not blind but she wears sunglasses to protect her eyes from the sun, she can speak but she can't enunciate her words, she uses a microphone because she is weak and doesn't have the volume to be heard, people just smile and walk away, you go to a park to swing and most of the people leave or walk away. It can be very difficult at times but I know Shira and I know she is a complete person. It's hard enough easing the pain of the school yard taunting with my regular son. My son talks with pride about his sister and her equipment and what she can do!
How many times have I been downtown and unable to enter a store because I can't get a wheel chair through the door or around the store? so many that I now know where I can go and where I can't go.
People have to start actually helping people with challenges more by actually thinking about them thereby creating a world they can access.
Ramble, ramble, ramble.............time for CPT, Oral therapy, and physio therapy!
Posted by Spinal Muscular Atrophy - Shira Fisher on 2010-04-01 16:49:04
Beautiful, wonderful, perfect. Thank you for saying what all of us in the SMA community feel so completely. Without our children, there would be so much LESS light than before. Even with the darkness that comes with SMA.....
Posted by Corinne on 2010-04-01 17:08:16
I know what you mean by going through the cycle. Some days you manage. Some days you can't. Some days the reality is so crushing as to be impossible to see any light around it.

This was beautifully written, as always.

Victoria, I wish I better knew how to express things, especially grief. I wish I could be over there for you to give you an empathetic shoulder, whether you wanted to scream, cry or throw things.

Above all else, though, I want you to know how much you guys mean to us. You represent hope, a fighting spirit, and never giving up. And I so know that those words mean nothing faced with your reality: they go nowhere towards healing your heart. But I offer them to you anyway, in the hopes that at some point perhaps they will help--give some beauty to the ashes.

We love you. Hugs to that sweet girl.

Devon
Posted by Devon on 2010-04-01 18:04:09
wow Victoria, how awesome that you shared such personal and pure feelings. those of us with special needs kids have such heavy hearts sometimes watching our kids be different... and sometimes we are afraid to say so. thank you for your courage and real heart. you and gwendolyn are teaching so much. the other day i thought of her as "Professor Gwendolyn"!
Posted by Barbra Mousouris on 2010-04-01 18:18:24
Today,when your heart is heavy,I send you love.Wishing all the while ,that that was enough.


Kiss your sweet girl from all of us.Hoping to see you again soon.
Posted by Heather on 2010-04-01 19:08:47
What a beautiful post, one I read through tears. As a mother we have so many dreams for our children, and having them be changed or shaped by a disease is heartbreaking. I think you are incredible, you always seem to look past SMA and what 'they' tell you will 'be' for Gwendolyn. You provide her with so many opportunities and such a fun, love-filled life! You, Bill and your sweet girl are such an inspiration to so many and the awareness you are bringing to SMA is incredible! I too wish SMA didn't exist, that families didn't have to have the fears and grief that it brings...and I pray a cure comes soon. Thank you for all you do, for SMA and for all those you inspire each and every day....Hugs, Em
ps.Congrats on the Pepsi Refresh-amazing!!
Posted by Emma on 2010-04-01 19:47:00
Sending you hugs and thanks Victoria! You are a wonderful and amazing Mother and person. You and your family have made me a better parent by realizing how lucky I am to have a toddler that can get into everything and scream at me - I sometimes forget to enjoy these moments. You have been blessed with Gwendolyn and the rest of us have been blessed to know your whole family!!
Posted by Amanda on 2010-04-01 20:29:14
Oh my goodness Victoria that is beautiful. Thank you.

Kisses to Miss G and great big hugs for you and Bill.
Posted by Margaret on 2010-04-01 20:31:04
This post brought me to tears. Saying an extra prayer for the Strong family tonight.
Posted by Legally Fabulous on 2010-04-01 21:37:33
Thank you for sharing your feelings with us in such a wonderful entry. It brought tears to my eyes and a better perspective of the things I feel should be different in my life.

Warmest wishes from Panama,

Katla Adams
Posted by Katla on 2010-04-01 22:00:49
Victoria, your words read like poetry. You and Bill have used your exceptional and inherent talents you were blessed with...to bring Hope and Joy to so many.
Posted by JulieB on 2010-04-01 23:23:35
Who knew all those years ago when we first met (oh man, it's about 20 years!!) that this would be our reality as adults, and as mothers? While SMA and Autism are so so so different, our feelings are so much the same. I can't think too much either, lest I wind up in that dark space, too. I go there way more than I want to. What helps me and heals MY heart is the love, support, and acceptance from others. Yes, it seems like that comes mostly from people who "get it", and get it the hard way. Thank you for YOU. Your love, advocacy and commitment to Gwendolyn is awe-inspiring.
No matter what, don't stop sharing your truth! Your story is changing the lives of others'!!
Posted by Dani G on 2010-04-02 00:06:32
victoria that was the most beautiful words i ever heard.
my best friend little boy
is five and he has duchenne.
even throught i have my challenge
all i want to is to have my friend
son to make his mark on this world, to have his oyster to.
our childern is special gift to
us, my friend son is a gift to me that is why i am decide my life
for him. iam not to move my body with chalenges but i can do it and will walk 13 miles just for him and rasie over eight hunderd dollars for him.kimmy
Posted by kimmy watters on 2010-04-02 00:15:10
As a very proud 'auntie' of Gwendolyn I would like to add that the miracle is Gwendolyn. All U have to do is see those 'Paul Newman' eyes N U will know what a miracle she is......to all of us.
Posted by Auntie Weez on 2010-04-02 01:55:15
Victoria, This was the most beautiful post. Your family, especially Gwendolyn, have touched our family in so many ways. Thank you so much for all you've taught us on every level of life. We keep all three of you in our daily prayers.

Love, Mari
Posted by thorney on 2010-04-02 05:21:52
Victoria, as always, your expression of your feelings is so beautiful and honest. Who knows why you, Bill, and Gwendolyn have been chosen to inspire us all, when so often, all you want is a normal, everyday life. We send huge hugs of comfort for the hard times, and love and gratitude for who you are.
Posted by Sheri on 2010-04-02 07:01:10

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