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Off Kilter

August 13, 2010 by Victoria Strong

So I am having one of those weeks. I just feel spent, emotional, lump in the throat. Gwendolyn is doing okay -- not 100% yet -- but thank goodness not going down hill. We have had a few choking scares and I don't think I will ever get used to saving my daughter's life. And there is the anxiety of something more lurking. All of it just makes me feel off kilter. We live a life of tightrope walking -- balancing being a regular parent and exposing Gwendolyn to a life of meaningful experiences, navigating her special needs in a world that doesn't really know what to do with someone quite this special, and living with the constant painful reminders that our time with Gwendolyn has an expiration date. I know, I know -- we all have an expiration date. But to live every day as if it may be the last time I kiss my precious child...well, it is different and it is painful. I always say that I am fine when Gwendolyn is fine. When she is off, well, the mortar holding us all together starts to crack. And when that happens my mind wanders to the thoughts of how am I going to cope without her. And, well, that just makes me feel exhausted. We are laying low this weekend. Catching up on sleep. Hoping to do something special for Gwendolyn since she's been cooped up. Hoping Gwendolyn feels up to it. And the big plan is just to be together as a threesome. I always feel better when I'm surrounded by my favorite two people.

PS - On top of the Mr. Stickies, this week Gwendolyn also hyper-extended her knee going down the twisty, twisty slide with Daddy. Daddy is just a bit too big and her little knee got tweaked...although the twisty slide is her favorite! This happened on Saturday and she is still in a lot of pain, so we took her to the doctor yesterday and now she gets to wear the big ace bandage. Poor munchkin.

Talk About It

oh victoria....sometimes this roller coaster of life is hard to take. Although I don't know the depths of what you deal with on a daily basis I do know that you handle life with such dignity and grace. The what if's and not knowing can take your mind to places far off---something that just can't be helped. Just know that there are so many of us here that love and support you!! Enjoy your weekend as a family and we send our love and hugs to all of you! be well... Lisa smile
Posted by Lisa Prokopetz on 2010-08-13 20:39:25
I've always found the best way to find my place is to just spend time with my favorite people too. Knowing that others are there to support helps too. That's where we all come in, sending you love, strength and prayers and of course lots of hugs. I'll be thinking of you tonight hoping that you get some rest and wake feeling calm and at peace.
Posted by Kristen on 2010-08-13 20:44:48
Hoping you have a wonderful weekend laying low with your two cuties!!
Posted by Eva on 2010-08-13 20:50:01
Victoria, You and your two favorite people, of course, are very much in my thoughts. Sending you lots of positive energy! Hope you all get some well-deserved rest this weekend and that next week looks brighter already.
Posted by Meike on 2010-08-13 21:12:46
Victoria, I can't even imagine . . . My thoughts and prayers are with you. I hope you three can find something fun to do this weekend and that Gwendolyn feels up to it. I know she loves to snuggle with you both, so maybe snuggling on her new big girl bed is she wants to do? Whatever you do, enjoy smile Lots of love, Mari
Posted by Mari aka "Thorney" on 2010-08-13 21:31:37
Poor munchkin and poor munchkin's folks.... I agree; worrying and wondering, while staying upbeat and a step ahead of SMA is truly exhausting, especially when you're trying to squeeze in so much LIFE into an unknown amount of time. In case you need a reminder, you and Bill are doing an INCREDIBLE job, not only with Miss G and her special needs, but in parenting, period. And then there's the fundraising, etc., etc., etc., etc., on behalf of a BUNCH of other folks. And trying to stay connected to a mountainbilly smile Sending big hugs all the way from North Carolina....
Posted by Helen on 2010-08-13 21:31:44
Sending you love my sweet friend.Sending you love.
Posted by Zoey's mom on 2010-08-13 22:49:35
Poor G with the knee to cap off her already slightly off week! You guys need a break. Hopefully laying low is what you need and can just cuddling, read and watch some TV spending some time together while everyone get back on the mend. Keep up the amazing and honest job. You've got a lot of supporters, for what it's worth...
Posted by Robin on 2010-08-14 07:08:29
Hoping that three of my favorite people enjoy their weekend together. Love from the NY cousins.
Posted by Margaret on 2010-08-14 07:25:48
I've been thinking of you and Miss. G. a lot recently. I too find no comfort when people quickly point out that any of my three SMA-free boys could die at any time. We face death every day and it's not easy. A friend of mine whose son has cystic fibrosis called it "chronic grief." She sent me an excellent blog post about it one day. I'll try to find it and send it your way. Lots of love from NC.
Posted by Christy on 2010-08-14 07:31:38
I can see how you would feel off kilter with that amount of stress! It would make the majority of us immobilized, so I commend your strength and perserverence to give your child such a beautiful life. I think it is a wonderful idea to just be together as a family and "chill", some well down time to recharge the battery. I wish you a wonderful weekend. Glad to read that G is holding her own. Saying lots of prayers for her!
Posted by Jillian on 2010-08-14 08:07:05
Oh I am so sorry about Gwendolyn's knee.. those things happen and it makes you feel so bad. I know what you mean about being "off Kilter". This past week a little boy here, passed away he was just a little younger than Jonas. Whit was actually there and it has brought home some emotional thoughts. I feel like all we ever talk about is what will happen next with us and Jonas. Lump in throat! Anyway, I hate that you guys are feeling this way and I hope that something fun will come your way soon! Keep smiling! Hugs to you all!! and a kiss on the knee from Jonas!
Posted by Lindsey Coleman on 2010-08-14 08:07:14
I am right there with you this week and weekend Micah has had the Mr Stcky thing too and has had a couple choking episodes. I will never get used to it either i hate seeing my baby turn blue. I too have been thinking those thoughts and crying my eyes out this weekend. My heart goes out to you and your family always but this weekend especially. Get lots of snuggles this weekend and lots of smiles! we love you guys!
Posted by Chelsa Marshall on 2010-08-14 08:57:36
I know. I know. ((hug))
Posted by Cass on 2010-08-14 09:16:46
Victoria, I know it's impossible to grasp the level of worry and stress and fear you face every day, and sometimes you need to take care of you as well. Rest and revel in the beauty and love of your amazing family, and feel the uplifting support, strength, and surrounding presence from all those of us who just love you 3 so much.
Posted by Sheri on 2010-08-14 10:05:41
i think it is just one of those weeks regardless for ALL parents. i am the proud mother of a 7 1/2 month old girl named Zoey and we had our first "scare" this week as parents. She took quite a tumble this Thursday and cracked her head. It scared the living daylights out of my husband and I. She was back to her usual "wild monkey" self within hours. I cannot even begin to imagine the emotional rollercoster that you and BIll experience on a day to day basis. I hope my husband and i can be half the parents that you two are. Gwendolyn is very lucky to have such wonderful parents that take such excellent care of her smile By the way, I don't blame Gwendolyn for loving the twisty slide. They're the best ones to slide down!
Posted by Molly on 2010-08-14 12:46:16
Have been thinking about you all especially today and hoping you're having a nurturing family weekend with lots of love and hugs.The big circle of love and care around the three of you from all your dear friends and family is humming today, we love you xxxxx
Posted by Clare on 2010-08-14 14:04:05
Sending lots of prayers your way... Hope everyone gets better soon. Will Gwendolyn be decorating her bandage? I think some pink and purple stickers would make her knee feel much better! smile
Posted by Legally Fabulous on 2010-08-14 16:52:11
I am glad to hear Gwendolyn is seeming to be feeling better, and now I hope you and Bill will be able to start relaxing and resting a bit more too. I can't imagine what you are feeling, how you are dealing but you are doing amazing and being so strong. There will be times your mind wanders to the 'what-if' etc and that is totally normal and expected, but I am sorry you even have to have those. I am thinking of you always and sending my love, strength and hugs to you all. Em
Posted by Emma on 2010-08-14 17:35:33
Think of you often. We just lost our little granddaughter, Annie, on Oct 6th with SMA. The last 6 months has been a roller coaster of feelings. Praying for a cure for SMA. Take care. You are great parents.
Posted by Shelia on 2010-08-15 10:11:23
I hope you guys got to have a restful weekend...poor sweetie. I hope her knee feels better.
Posted by Devon on 2010-08-15 20:17:02

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