An open letter to muscular dystrophy parents

It’s easy for me to sit here writing about my experiences when it comes to living with muscular dystrophy but what about the parents that live though every fall, slip, hospital appointment.

Muscular dystrophy can affect all ages at any point in life. Whether your child has been living with muscular dystrophy for years or newly diagnosed, i want you to know it’s okay, it’s nothing you have done or could have done differently, yes it will be a long road but it also isn’t the end of the world. It’s just the beginning, and there’s more hope than ever.

Being a parent is already one of the hardest but most rewarding jobs, then throwing into the mix your child having MD – No parent should have to balance a child’s desire to get up and play with the need to sustain muscles. You help with the physical tasks.

When your child gets old enough, there will be tough conversations – “You’re not going to be like everyone else.” They’ll start to notice that they look different. They might wish they could have taken care of themselves without relying on you. And wish your biggest concern was for you to have normal teenage drama. Plus the time will come when a wheelchair is needed.

I can’t stress enough parents, please make sure you also have conversations about the birds and the bees (sexual health), too. We are not immune from the same desires as others, it’s so important to make sure your child understands they are beautiful/handsome they can have children and get married if they choose to and address the topic within the context of your own beliefs.

As parents you never stop, you are a continuing presents that never fails to stand by – you are brave beyond measure and continually make the world a beautiful place. I am in ore when I watch so many parents some of you have even become friends, you do everything in your power to normalize your child’s life. It’s not easy – you’ll lose blood, sweat, and tears – but you show up every day. If not you, then who?

The smallest of moments are huge. We draw our strength from the way you fight for us – and keep your composure despite it all. My strength comes from my own mum, she is truly an incredible woman despite having Muscular Dystrophy herself. This never stopped her raising my brother or myself who she has had to watch and support go though living with MD – I was later on in life where as my brother was still very young when he was diagnosed.

You might find your days are often dictated by doctors’ appointments, meltdowns, physical inabilities, transportation conundrums, and school logistics, remember that there is more to life. Exposing your child to good friends and, when that time comes, even girlfriends. Make time to see that there is beauty within a world that doesn’t always see us as equal. as well as sharing stories of your own life and teaching life lessons, even if you don’t understand the point.

Whether they admits it or not, your child loves you. They looks up to you. Your actions make a bigger impact than you think.

You will smile more than you frown. It’s inevitable you will have tears of sadness but more of happinesses and laughter, but the moment you blame yourself and those around you, you’ve letting muscular dystrophy win, the worst thing to do is shield your child from the truth even if it goes against every parent feeling you have.

It’s not a misplaced feeling to have hope that a cure will be found. Modern technology and science has come on leaps and bounds and continues to as each year passes – yes it might not be in our life time so don’t place all your hope in one basket or you will be disappointed. You can hope that your child’s life will improve with modern technology, be enriched by friendships, and feel complete with a purpose, I have always believed the universe has a purpose and path for us all we are here for a reason. Don’t ever let yourself and your child think otherwise.

One last message to all you parents. Thank you for making daily sacrifices to improve our lives. We love you more than you know.

Kisses K

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