How I faced the storm and made a difficult decision

The last month has been very hard for me. I have gone through a difficult period where I had to make a tough decision.

I have reflected on it, learned from it and am happy to share these lessons with you here.

As some of you know, my 7 year-old son has Duchenne Muscular Dystrophy (DMD). This is a physical condition where the muscles break down. I’ve shared that story here: https://lnkd.in/fEJmr2S

I have gone through the mourning phase after the diagnosis. I have come to the acceptance that he has this fatal disease for which there is no cure yet. We have moved to Dubai and are living a happy life here. He can still walk, play, run, almost everything. He seems a happy kid.

But in the last month things have changed. I have noticed that he has more difficulties walking up the stairs. That it takes him longer to get up from the floor.

And then it hit me: the physical decline has started!

Of course I knew this is part of DMD. But I didn’t realize this would happen so quickly.

It breaks my heart to see him pull himself up the stairs. It breaks my heart to see him on a football field without being able to run fast. And yet I have to deal with this new phase, the decline. 

Here is what I have learned:

1.       Acceptance

The decline has started. That is a fact. No use in denying it or spending too much time feeling sorry for him or for myself.

2.     Emotions are your allies

Emotions are not your enemy. No need to fear them. Emotions carry useful information and guidance for you to advance. The only way out is through. When you’re sad, cry, let the tears out. When you’re angry, hit a pillow or go for a run. Do what you have to do but don’t keep it in. It will burn you from the inside.

More importantly, explore your emotions. Are you expressing the right one? Or is it a (subconscious) cover-up of your true emotions?

I did an emotional healing exercise and found out the real emotion causing me so much pain wasn’t sadness. Yes of course I’m sad. I have cried and cried seeing him struggle.

It wasn’t anger either. Yes I’ve been angry at life for this disease. But I’ve dealt with that. I’ve done a great part of acceptance.

I have realized that what is really causing me this pain now is fear. Fear of not knowing how (fast) this physical decline will evolve. And mostly fear of not knowing if and when to start the medication. I’ve been pushing forward this decision for over a year now.

There is no cure yet for DMD. The only thing that can slightly slow down the decline is corticosteroids. A drug called Prednisone.

The downside of Prednisone is a long list of severe side effects, including: excessive weight gain, behavioral abnormalities like aggression and mood swings, weakened immune system, weaker bones, etc.

3.     Action

Once I realized the real cause of my suffering was fear, I took ownership. I made an appointment with his neurologist, who told us it’s now time to start the medication. I read everything I could find about Prednisone and the patients’ experiences. I asked a second opinion to another neurologist and Duchenne expert. I talked to a professional in Pharma and Biotechnology. To other parents of special needs children. Some said go for it, it’s the only thing you can do. Others said this is poison; don’t ever give it to your child.

I gathered all the information and opinions I needed.

I then had an honest conversation with myself:

"Lous, can you live with the decision of not giving this medication, fearing the side effects, never knowing if the decline could have been slower if you had given it?" No!

-        "Lous, can you live with the heavy side effects, knowing this drug you gave him caused them? But that it will probably help gain time in the decline of his condition?" I don’t know, but I’m willing to try.

So then I knew it. There is no other option right now than to start this treatment and see what happens. My husband had the same thinking and we agreed quickly.

Once the decision was made, the fear calmed down and my body that was so tense, became more relaxed again. That proofs it was worth, and even a necessity, to explore my emotions, to get to the core of it and tackle it hands-on.

I also learned this:

4.     Confidence

Confidence is an antipode for fear. I accept that I am scared of the impact of Prednisone on his body and his behavior. At the same time I’m confident in the doctors we work with. I’m also confident in myself and my husband that when the challenges occur, we will face them accordingly.

5.     Time

The only reason to start this treatment is to gain time. Time of life. To push forward in time the complications that will come once my son will be in a wheelchair.

And what if we gain time? Then we can have him around longer, enjoy spending time with him.

That’s when I realized I can also enjoy spending time with him right now. By being more present. Spending real quality time with him whenever I can. Try to travel as much as possible.

It’s not only about the quantity of time we have. It is, always has been and always will be, about the quality of that time.

With or without steroids, I don’t know how long he will live. What I do know is that I have the power to make his life the best I can and help him gain the inner insights and strength he needs to appreciate life to the fullest.

To sum up:

Whatever hardship we face, these elements are key:

1.     Acceptance of what is. Don’t get stuck in denial.

2.     See your emotions as your mentors and let them guide you

3.     Action: don’t freeze or flight the situation because you're stressed. Do your homework, get the information you need. Take the steps you need to take.

4.     Confidence. Have faith in your ability to deal with whatever comes your way.

5.    Time is your most precious asset. Use it wisely. Every day that passes is gone forever. Quality of time above quantity. Always.

I would love to hear your thoughts, talk to you in the comments below.

Love and Motivation,

Lousin Mehrabi