Muscular Dystrophy Was Our Diagnosis
You are reading this because you may have recently been told that your child will be different than other children. He/she may never walk or talk and will rely on you for every aspect of their daily living, for their whole life. That’s a tough pill to swallow.
When I heard those words, I was on the floor crying (that’s OK if you were too!). But, I picked myself up and over the past few months have come a long way in accepting my son’s diagnosis and you will too. So, here are 10 tips I wish someone had given me in those early days. It sure would’ve saved a lot of heartache!
First and foremost, this is your child. He/she is still the exact same person that they were before the doctor said those words. The only thing that is different is the fact that you now have a diagnosis, which doesn’t change the love you have for your child.
This one is cliché, I know, but you have to do it. Grieve the loss of that “healthy” child you thought you would have, the life you envisioned. Spend a moment, accept what you lost, and allow those feelings to come. It doesn’t mean you love your child any less. You had plans, I know, so did I. But more often than not, life doesn’t follow your plans. I found reminding myself that I could have a healthy child and my plan still wouldn’t work out helped.
Focus your energy on what your child can do and celebrate that! No milestone is too small. Did he/she pass a hearing test? Celebrate! Did he/she take food by mouth? Celebrate! The sky is the limit.
Don’t compare your child to other children, even children with the same diagnosis. No two children are the same and no two disease processes are the same. Even children with the same diagnosis may do things differently or may be affected by their disease in varying severities.
Let go of what you cannot change and/or control. This was hard for me (I am a bit of a control freak). You can’t change the diagnosis, but you can become extremely educated on that condition and be ready to tackle anything that comes your way.
Find support that fuels you. This one can be tricky because a lot of your friends might not know how to relate. And that is not their fault by any means. I found that the best support came from those who had walked a similar path. Connecting with your local organization for your child's specific condition can link you to many other parents who can relate to your struggles and feelings. Don’t be afraid to strike up a conversation with that parent in the physiotherapy office, they may want to talk too. Use social media to your advantage and you will meet fellow parents also dealing with similar issues around the world; its very empowering knowing another family has been there and is thriving.
Let the bad days and the tears come, they are part of the journey. Accept those feelings, but don’t let them control you. Cry it out, sometimes it is necessary. You can’t grow without these days and acknowledging what led to these feelings. But the next day, you put your battle gear on and hold your head high.
Accept your own biases and triggers. This one is hard because you cannot avoid some of the things that may trigger you, it could happen anywhere. But if you are having an off day, take the time to avoid potential triggers until your feeling better.
The doctor/nurse/therapist is not the enemy and I can assure you that 99% of the time they are not trying to be malicious. They are giving you the facts and sometimes those facts can come across as cold and harsh. They want your child to succeed and reach their full potential just as much as you do. Ask questions and don’t be afraid to question treatment options. This is your child and you are part of the team!
Make time for yourself – this is so hard to do, I know, it took me a lot of months to finally decide to do this. Go out for dinner, go to the movies, exercise, or enjoy a book – whatever you like. In order to better take care of your child and have a positive attitude you have to take care of yourself. It all starts from within.
Take The Diagnosis One Day At A Time
Always remember to TAKE IT ONE DAY AT A TIME as you journey through this new life. Some days are going to be hard and some days are going to be amazing. Let your child guide you and let them teach you, you’ll be surprised at who you both become.