So Nicolas is 8 now.  Yesterday, he was outside (nice weather in Illinois) and he called me and said he can't get up.  I usually help him up, but he said that he can't get up by himself anymore.  Feels like this has happened overnight.  I am so exhausted because I stayed up crying about this last night.  I'm not ready for this at all!!!  Again last night when in the house he needed me to help him off the floor while he was playing with our dog, and told me again that he can't get up off floor - that it's too hard for him now.  I thanked him for letting me know and that I would tell his doctors (Dr. Wong), but I'm a mess today at work.  This is ridiculously hard!!  What do I do?  Please anyone that can help me answer his question about this - please help!

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Liisa,

 

The questions and statements that our boys say are the heartbreakers.  Nicolas will say that he hates this disease, he asks why there's not a cure yet, he said he doesn't want to be on the placebo (or "fake medicine") for exon skipping trial, and yes, he has asked why God would want to let kids have these diseases.  There are times when I have to say "I don't know" and he still expects me to have the answers for everything.  Sometimes I wish he would just open up a bit more and concisely express what he's feeling, because I see him with his head down and sad face, but he just says he "doesn't want to talk about it".  I just can't imagine what he's going through,,,, 

There is of course no comfort that addresses the medical condition our sons have. We need, however, to not let the grief paralyze us, so disarm us that we cannot act whether it be to call Dr. Wong NOW or to make it clear to our sister that our child is not  an object of pity but a kid just like other kids and WE WILL EXCHANGE THAT BIKE!!!


Laura Hershey had and died from the effects of Spinal Muscle Atrophy. She had been an MDA ambassador when she was young. As an adult she saw the fear, shame, anger, pity, feeling helpless from the time when she was a child - all kept her from advocating for herself whether at the doctor's office, with the insurance company, at school or in a restaurant. Her poetry and actually her life speaks to empowering yourself in a society that wishes you would go away.

She accepted who she was and the cards she had been dealt and helped others to do so, but acceptance did not mean lying down and playing dead just to please others. It freed her and so many of us with, in my case, family members with disabilities, to speak up, push for what our kids need - get the car back in motion. It is an important lesson for our kids as well - feel what you feel, don't let others control you through pity and shame, no your care does not cost too much no matter what it costs, yes you really need that piece of equipment and oh well it costs $20, 000 and demand to participate in your own care, your own advocacy. Don't die before you die. Use the energy of grief and anger and fear to do what needs to be done.

Just as Pat Furlong has done. We are not all Pat Furlong's nor do we need to be. Just don't let yourself sink into the morass of depression and inaction, for your sake and as an example for your children.

 

Now where is that list of calls I have to make - that receptionist was so rude last time...DAMN

 

 

I think Connor's school can agree that I certainly have advocated well for Connor.  You bring up a good point about the financial side of it that I had not thought of, Ginny.  I need to take better care not to put a financial burden on Connor. On one hand, financial planning is a good thing to discuss with kids but I do need to not show so much focus on why we are pinching dollars right now.  Thank you for this reminder.

 

Thank you, Ginny!

Hi there,

My sons have recently been diagnosed with DMD aged 4 and the boy at 2...

Yes was very devasted with the news, my husband and l are very positive minded people.. Getting news like this is very hard to comprehend we were in the dark and lots of tears...  At first l thought the boys had issues with global development delay meaning didnt meat there milestones and no health professionals at the time could not detect this disease until l visited a development peditrian in Melbourne (Aus) he had the boys blood tested and indicated high CK levels..  My oldest son didnt start walking until he was 2 has speech delays. I knew at the back of my mind that something was not right. So l am very new at this l think the next step is that l the mother get tested and the boys first appointment is in July 2011..  I find this web site to be very supportive..  

 

I seem to get more information from all you lovely people then we do from the professionals who make so doom and gloom..  

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