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Woman with MS holding child at beach

By Gaby Mammone

My son eagerly jumped on my bed early on a Saturday morning and chanted, “Mommy, let’s play, let’s play!” At 4 years old, Luca was one of those kids that when he went to bed early, he would wake up early. When he went to bed late, he would still wake up early.   

Sometimes I simply just didn’t have enough energy. That particular morning, my feet were numb, and I was experiencing several MS symptoms. I had an immense amount of guilt because I would rather stay in bed, than play. Did that make me a bad mom?

Days and years passed. I knew I needed to explain to my son why mommy was often so tired, but just didn’t know when or how. I came up with excuses of why I couldn’t teach him to ride his bike (as it would involve running after him). I made up stories of why I couldn’t play soccer (I knew I would fall). Sometimes I couldn’t even help him with his homework (because of my cognitive challenges or facial pain). There just never seemed to be the ‘right’ time.

Each time I let Luca down, I would see the disappointment in my beautiful child’s eyes. So when he turned 10, I decided it was time. It wasn’t about me anymore. I knew it would be helpful if he understood what I was going through. I did extensive research about how to tell him. I shared how I was feeling, both physically and emotionally. I showed him a wire and explained how the coating was like the myelin on our nerves. “When there is a piece of the myelin missing, sometimes mommy doesn’t feel well”, I explained. I was honest, yet cautious not to divulge more than he could understand. I also gave him ample opportunity to ask questions and let him know that there was nothing wrong with how he was feeling.  

I realized that parenthood is hard enough and being a mother with an autoimmune disease is nothing to be embarrassed about. I remember experiencing so much fear and anxiety about when the right time would be to tell Luca that mommy has multiple sclerosis. After I did, I felt a big sense of relief and the guilt dissipated. He even began helping more around the house and we found new ways for us to engage in activities that didn’t involve as much effort if I wasn’t feeling well.

Here are some tips I learned that helped me deliver the news to my child:

  • Let them know how well you are doing and anything you are grateful for that is related to living with MS. For me, it was focusing on being well enough to still work and play the piano. 
  • Refrain from calling it a disability. Instead of ‘labelling’ MS, approach it as something that makes you special.
  • Look for age-appropriate resources online or ask your local MS charity or patient group for suggestions.
  • Only divulge what you think they are able to understand based on their age and maturity level.
  • Engage with other parents who have had the conversation with their kids to learn tips. There are many MS groups online where you can hear others’ personal experiences.
  • Discuss your symptoms and give examples of why you may need to rest.  
  • Let them know that there are many other children that have a parent who has MS.
  • Do not compare yourself to others. Every situation is different. Tell your child only when the time is right for you.
  • Before having the discussion, prepare yourself by anticipating concerns that your child may want to discuss.

Remember that we are not superheroes, but we can have the MS Warrior mindset. Having open discussions with your family about how you are feeling will relieve the agonizing guilt of missing events or activities. 

You will know when you are ready to tell your children and your family about your diagnosis. Trust your instincts… and don’t worry if you don’t want to jump on a bed early on a Saturday morning. 

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