Amid the immense obstacles of Duchenne muscular dystrophy, it’s easy to forget that the ones caring for us are dealing with not only difficulties, but an impossible task. Our main caregivers, usually mothers, manage the unmanageable, which is crucial to bear in mind. We, the directly affected, own the responsibility of tending the needs of those who volunteered to join our battle head-on, out of unconditional love, no less. In this fight, there’s no room for selfishness. Below is a list of ten things we can do for our Duchenne moms to melt their hearts and make them know they’re Cinderella:
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Gratitude is key when it comes to making your Duchenne mom happy. Although she’ll never stop finding gladness in your cares, they’re still an obligation. Showing your appreciation by saying “please” and “thank you” might seem small, but acknowledging her hard work is a reward that will help alleviate her daily stresses.
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If she’s feeding you in front of the television or computer, find something she enjoys and watch it with her. She isn’t a service robot and gets bored like anyone else. Don’t make it so she leaves the second you take your last bite when she wants nothing more than your company.
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When she’s having breakfast, lunch, or dinner with you, don’t ask for another bite immediately after you finish. Observe her mouth and make sure she’s eating as well. Be considerate towards her as she deserves a hot meal (that she cooked) just as much, if not more! Compliment her food.
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For husbands: Unless you have something absolutely urgent to do, don’t ask if you’re still needed during a care session for your child. You may think it little, standing around doing nothing, but for one, you never know when you will be of use, and more importantly, the act of being there will remind your wife that your partnership is undivided. This makes her battle a whole lot more worthwhile.
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Your thoughts matter to your Duchenne mom, even the slightest worry. Be her friend, not a stranger, and share what’s on your mind, regardless of how you assume it might come across. She won’t ever think you’re stupid, while there’s no need for either of you to feel alone together.
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Laughter is the ultimate weapon against this disease. Find jokes to make her laugh once in a while. Also, create an atmosphere where you’re able to poke fun of each other at any given moment. This type of relationship will help lighten the mood, especially when things become tougher than usual.
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For husbands: Never underestimate your importance, despite not being the primary caregiver. Your willingness to learn your child’s routine makes all the difference in the world. It’s a terrible idea to force an environment where your wife must instruct you in every little detail. Remain alert while following her footsteps with coherence so that you are of assistance, instead of being in the way.
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She has a lot on her mind and won’t remember everything, especially her own needs due to her selfless nature. Help with reminders, including and particularly medications she might be taking. This is very necessary during road trips, appointments, etc. Don’t you dare be a lump of wood… you’re not a spectator, so participate and make yourself useful!
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Don’t “right her wrongs” when she starts blaming others. She already bears too much guilt in that this disease is x-linked recessive, though it was never her fault. And if she yells at you for no reason, don’t retaliate angrily as you’re going to make her cry, and hard. It’s the illness talking, and your opportunity to encourage her and express how much you love and admire your Duchenne mom. Stay strong without succumbing to apologies when all she needs is a warm embrace.
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Ask that she hug you, like you’re hugging her. Make the effort in words and she’ll smile from ear to ear in action. In order to fully please anyone, you need to first accept your limitations. There is no shame in asking for assistance, so don’t let your hardships restrict you or someone you love from what is deserved. Work around inabilities and focus on your abilities.
Getting past the incredible despair attached to Duchenne muscular dystrophy will never fail to take a toll on who you are. In fact, it isn’t something you simply come to terms with when the ramifications are so extraordinary, no matter how far in the future you are. However, don’t ever forget that making others happy will bring more meaning to your life. This is your Duchenne mom we’re talking about after all, and she will always be your girl. Remember that you’re her main caregiver too!
Thank you, Ricky!
Awesome tips for dmd families like mine. We are all in this together, like it or not!!
Ricky you are my champ, not only for your toughness but also for your heart-melting warm love.