Why It’s Important to Be Honest About Daily Struggles

Prudence Jones avatar

by Prudence Jones |

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I’m a glass-half-full kind of girl. It’s usually not difficult for me to look on the bright side of life.

Recently, I had one of those days where everything felt right. We are on top of my 2-year-old son Alfie’s therapies, he is loving day care, the equipment he needs is coming, I’ve been able to return to my pre-Alfie career one day a week, and we have all been enjoying some lovely weekends together as a family, finding fun playgrounds and things to do.

Even since the initial shock of Alfie’s diagnosis of LAMA2-related muscular dystrophy, I haven’t returned to that dark mental place. I don’t focus on the what-ifs or the whys.

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Alfie’s Facebook page is plastered with videos and photos of him smiling, laughing, kicking goals, and doing great all around — which he is! But sometimes I wonder if I’m positive to a fault.

I’m not sure I’m telling people the whole story. I’m not sure I’m allowing them to truly understand what it’s like. I don’t think people get how incredibly hard Alfie, and those around him, work so that he can smile, laugh, kick goals, and do as well as he is doing.

The contractures in Alfie’s ankles are not getting any better, even after serial casting, wearing ankle-foot orthoses for 10 hours a day, and using his standing frame and stretching daily. But I don’t let myself go there. I shove it away.

Soon, we will need a new vehicle to accommodate Alfie and his equipment. A vehicle we can’t really afford while I’m not consistently working, which we otherwise wouldn’t need. But I try not to think about it.

Alfie’s cough is so weak that he really struggles when he’s sick. A simple cold turns into pneumonia so easily.

Some days, Alfie is so exhausted that he can’t sit, he’s not his talkative self, and I struggle to think of ways to entertain him that don’t simply exhaust him more.

The reason I wonder if I need to be more honest isn’t because I want sympathy, and we definitely don’t want pity. Recently, I requested a support worker from the National Disability Insurance Scheme in Australia, where I live, but it was declined. The reason was that the things we do for Alfie fall under typical parental responsibility, and maybe we’d have more luck when Alfie is a bit bigger and heavier.

I wonder if we would have been more successful had I been more honest about our daily struggles. If I were able to better articulate Alfie’s needs, then perhaps he might not be still waiting for a wheelchair we applied for in April. I wonder if the truth would help fill all these gaps.

I’m still learning to navigate this advocacy role, but maybe I occasionally need to stomp and shout that my glass is, in fact, half empty, so that we have a chance at having a full glass one day.

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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.

Comments

Shirley Burghardt avatar

Shirley Burghardt

I have 3 adult children with adult on set type 1 myotonic muscle dystrophy and I would like to know if you have some information on that type to help me? They are girl age 58, boy 53 and boy 41. Please help me.

Reply
Marguerite Bridgman avatar

Marguerite Bridgman

Hello Prudence!
What a wonderful loving mom you are to Alfie!
Maybe you can re apply for this help with the true facts.
Would that be possible?
Worth a try.
I hope you can get some help. Never give up and keep pushing for your goal. Alfie is lucky and should be proud of his super mom and for sharing here so openly it.
I have F.S.H.D. muscular dystrophy.
I wish you success in your efforts.

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