Love & Support On the Duchenne Journey

I often feel very in ore of single parents who are dealing with DMD daily. You are all amazing to me, I can only imagine how hard it must be not having a loving and supportive partner by your side – must be so hard at times. I feel so blessed to have my husband Mark by my side, he has been my rock for 25 years, constantly there with love and support. All our Marriage Mark has worked hard to keep a roof over our head and provide for our family – something we appreciate so much, more than words would ever explain.

Mark has been our protector and provider, and I have stayed home and been mum to our 5 children, for the most I do daily household tasks with no help from teenagers (another issue that I’m sure we can all relate to lol). My husband Mark helps out often with cleaning, cooking and the kids, he has always been a hands on Dad. I have never expected him to do these things, he just helps because that is the kind of person he is, he believes that all couples should share the chores, especially the children’s needs as they are his too.

Many people have criticized my husband mainly other men calling him a pussy, or whipped, under the thumb etc. This just isn’t the case, we have a loving relationship and mutual respect for one another, we share the load, are there for one another always supporting each other.

Life with kids is hard in general, then put DMD into the mix raising the stress levels. Mark has been there for us all, he knew my brother Paul who had DMD, and saw the journey first hand. When we were married Mark knew I was a carrier of DMD, he knew there was a chance our children would inherit the familial mutation. We discussed having kids a year or so after we were married, it was a daunting topic to bring up… Mark was so supportive, he said “oh well you can’t be sure any child is going to be healthy”, he’s statement hitting very close to home – as Mark had Acute Lymphoblastic Leukaemia as a child from 7 – 13 years of age, his whole outlook on life is amazing, just take what you get and do the best you can with it, it’s one of the reasons I love him so much, he just lives his life, a wonderful quality he has instilled into our children.

We made the choice to have children, many may call it selfish, and that is just someone’s opinion. What works for one doesn’t necessarily work for another - it’s an absolute individual choice. From the moment Mark became a father he has been such a hands on dad, taking turns to do night feeds for newborns, changing nappies (even the dirty ones). He has helped out around the house and really been there for his family, and working to keep food on the table and a roof over our heads. Life has been tough at times, but his outlook has always been positive, he loves us absolutely and unconditionally, and I know I am blessed to have such an amazing partner in my life – he is defiantly my soul mate.

My wish is always being that everyone in the world can find that special someone to spend their lives with, it sadness me that many do not – If I had a wand I would definitely fix that! Having someone by your side who will listen and support you through everything in life really makes life easier. When we found out our son would have DMD, we made a choice together to give him life, we have never regretted or looked back on that decision it was made together, we are in this together there is no-one to blame. This is the life that was handed to us, we are doing the best at living life without letting the diagnosis define us.

If your partner wants to help out – Let them! I get that many families are old fashioned with the man going to work and the women looking after the kids, house etc., and to a degree I agree, however my husband has two arms, two legs and a heartbeat just like women do, he is quite capable of getting himself a snack, taking out the garbage, washing the dishes, bathing the kids etc. it’s not an expectation it’s a reality. He does go to work and work hard however, he appreciates that I work hard too. It’s not easy being a stay at home mum, or a working mum. My husband has never felt or indicated that he works harder than I do for one minute, he knows how much work is involved in running a household, taking care of kids etc. put into the mix a special needs child who has behavior problems, then on top of that I’ve been studying University online. I love staying home with my children, however you tend to lose a little bit or yourself when you don’t go out into the world often. For working mums, I know it’s hard leaving your children every day, I respect all mums and will admit that I am often envious of those of you who get to go out to work and still have that time that is yours, inner peace and satisfaction really makes life must more enjoyable and easy to bare.

Our inner happiness really does reflect on those around us. I would love to go to work and help our family out financially, I miss the social interaction with adults particularly when you have a frozen song stuck in your head from watching the same movie 3 times in one day lol. I have goals and aspirations too that I would love to be able to fulfill and Mark appreciates that and encourages me every step of the way allowing me time to do those things I don’t get a chance to do when he is at work.

Our kids are our responsibility, being a parent means putting your kids first, but you do need to take time for yourself, you need to work on a relationship, take time to appreciate one another in order for your kids to truly be happy. If mum and dad are unhappy then the kids will know it. You need that me time, it’s not selfish – if anything it is necessary to ensure a happy home life.

I realize it’s not always possible to salvage a relationship, often we just want different things in life and life throws us a curve ball, sometimes Mum’s or Dad’s do it alone and for the most just get on with it and suck it up, I have such appreciation for those of you that take on both parental roles, I know it’s not easy, I know you often are made to feel insignificant, and segregated. Which to me is not fair at all, many of you have been hurt by people who you thought would be there for you, but turned out not to be the right on and left you to deal with DMD solo, and it must be so hard at times for you to cope without someone to support you when times get tough, or perhaps you are in a relationship, but don’t get the support you need I really do feel for you, and count my blessings as I know there is always someone out there less fortunate then ourselves.

I dislike the stereotypical attitudes of society with regard to the roles of Men and Women. It’s so wrong that there is expectation in society of what each Gender is capable of, that women should take care of the kids, men should go out to work etc. I think with mutual respect and willingness to share the chores of life, happiness is eminent, stress is elevated and we feel respected and equal to our partners. A true partnership comes from love, respect, trust and most of all a willingness to compromise.

Whatever your situation on the Duchenne Journey, stay strong, be positive & above all respect one another without judgment.

Love and Peace to you all