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Sharon Kippers Female Port Colborne,Ontario Canada: Favorite

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Finding it hard...

Started this discussion. Last reply by Sharon Kippers Mar 1, 2011. 6 Replies 0 Favorites

I am finding it harded to keep myself from feel down lately. Both my sons have dmd, Austin the youngest was diagnosed last year. I think I just need to vent. Lately all I want to do is run away. I…Continue

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About me:: I am a stay at home mom. I love my job and i wouldn't trade it for the world.

About my family:: We are a family of 5. Oldest is a girl, and two boys. Both my boys have been diagnosed with dmd 2 and 4. I stay home and look after my wonderful kids.We are a very busy bunch.

Name(s) of child(ren)/individual(s) with Duchenne:: Shaun, Austin

Age(s) of child(ren)/individual(s) with Duchenne:: 0-3, 4-6

City:: Port Colborne

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My boys

Posted on April 25, 2011 at 9:28pm 2 Comments 0 Favorites

Well here I am again. Getting frustrated with my son Shaun, lately he has been very moody and not sleeping and does not listen. Probably the age and steroids. Being so patient but it is wearing thin. I think that he is starting to realize that he is different.

Then there is Austin my 2 year old. He is so sweet and always smiling. Thankfully he does not have to start steroids anytime soon. Then I will have two moody boys. I'm bad saying all this stuff.

I just wish this huge…

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Struggling with emotions I can not hide

Posted on February 21, 2011 at 8:46pm 7 Comments 7 Favorites

Struggling with emotions I can not hide.

I don't know if I can hold back the tears today.

Well I get to watch your son run and play.

I know I have two special boys

Always happy and smiling

All I feel is angry

What makes you think I have the heart for this?

Why have such confidence in me?

I know that I can handle this

I have the strengh I guess

But some days it is hard on me

To watch them always…

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At 11:49am on April 11, 2011, StaffStephanie Matthes said…: Hi Sharon,

No, oral steroids do not cause nose bleeds. Nasal steroids can, but not oral.

Best, Stephanie

stephanie@parentprojectmd.org

At 11:49am on March 9, 2011, Andrea Cleary said…: Hi Sharon,

I just watched the Clinical Trials Webinar from Feb. and saw your question, and recognized your name.

Just wanted to wave hello.

Andrea from Montreal

At 11:58am on February 28, 2011, Jessica Divin said…: Hi Sharon, I actually live in Chicago but grew up in Buffalo. In fact last summer we took our son Ben and the girls to Crystal Beach for the first time so we weren't too far from you! We will be returning to Bflo this summer to visit family again. Ben was just diagnosed a year ago and some days are still overwhelming especially when I start thinking about the future. I will say that we are in a better place now than when we first heard the words dmd and that this website has been a lifesaver for me. Please take care and contact me if you ever need to vent. I find that other dmd families have been such a blessing for us! Take care!

At 8:35am on February 21, 2011, Marian Lamberson said…: Hi Sharron, I am so happy you found us here. We live in Ottawa and go to CHEO and our neurologist keeps us updated in the trails happening around here. My oldest is 9 and my baby is 4, they were both diagnosed, and myself as a carrier almost three years ago. Life since then has been full of up and downs. The kids are happy. That's the best news. I am also pregnant with a little baby girl due in June. I never thought three years ago we would be adding another baby. Anyway, just wanted to touch base with you, and let you know that there was another mother, with two affected sons ( a poodle, a cat, a hubby, a mortgage and another baby on the way, like I didn't have enough on my plate ) close to you. An older man with older kids told me that life would return to a new normal eventually, and it has. And it will with you. Take care my dear!! Marian

At 2:57pm on February 17, 2011, Andrea Cleary said…: Sharon,

I like how you say that you stay at home while your husband works, like it's not work with 3 kids, especially 2 DMD boys! Self deprecation, I know it well. Your work as a mother (though unpaid) is valued, especially by your kids (even when they don't always show it). Please remember that . ;-)

Best regards, Andrea