Everyone knows there's no real guide out there for parents to deal with
DMD. So heres my humble 8 point plan to nudge you in the right
direction. Please read below;
8 point plan to coping with DMD for parents.
1, Despite everything stay as positive as you can but cry when you
need too (this goes for your child with DMD too!). Holding it inside
builds tension and can lead to arguments. Let out the bad feelings,
comfort each other and move on without going back there.
2, Realize that your child will be different physically but don’t
get over protective and don’t make a huge deal out of things when a fall
or other stressful event happens.
3, Don’t shut out the disease and bury your head in the sand,
otherwise this monster will jump out on top of you and you won’t be
prepared for tough questions.
4, Always think about 5 years down the line. Never look at the
problems of twenty to thirty year olds as a future for your four to
eight year old. This is not necessarily your child’s future!! Do go and
chat to older men and ladies with DMD. We are just like you, we share
fears on climate change, we have to make ends meet and some have jobs
and degrees. It is hard when we build friendly relationships with you
but get kind refusals to meet. Yes it’s hard for you but it’s hard for
us too, we just wanna chat and be friends, don’t come with preconceived
5, Prepare answers to these questions, “Mum/Dad, will I die”,
“Mam/Dad, why do my legs hurt”, “Mam/Dad why am I taking meds”, “Mam/Dad
why do I need stretches”, “Mam/Dad what is muscular dystrophy or
Duchenne’s?” “Mam/Dad will I need a
Always answer age appropriately when you are asked by your child.
Always tell the truth. If your child is a teen let them explore it on
the internet if they want. If they don’t want too, don’t force it. Do
encourage dialogue but please listen, a positive answer will not always
work. If it’s a question about ‘the end’ from an older individual, don’t
ignore it, find out together.
6, Does your older child with DMD want to live at home or as an
independent person with a care package. Don’t be offended if they want
to branch out, it is never about you providing bad care it is always
about the natural independence that even you had to make a family. We
sometimes do want a family of our own! If they want to stay home, tell
them it’s not a failure, perhaps try to get some sort of care package
for at home so the parent can still be a parent.
7, Regardless of someone else’s worries, never think your worries
are so much worse that they shouldn’t complain. Remember we are all
human we have different lives and different worries. If someone is mean,
don’t answer back and hate, always think the devil has deceived them
into being horrid they cannot control it. Forgive, forget and be laid
back. Always try to answer calmly explaining Duchenne’s, the more we
tell the more we inform.
8, Never ever blame yourself for the genetics that caused your child
to be affected. You didn’t choose or know it would happen, we are all
created in our own special way and we all have our own gift. We are all
meant to be! The affected individual will never blame you. If your child
says in temper he/she blames you they don’t mean it, all kids say
stupid stuff. Guilt over this won’t help, you have to let go of that and
live each day as it comes.
Keep strong, be honest and discuss things with each other.
God bless you all and thanks for reading!