Moms Like Me

It’s a phenomenon that moms like me face. We’re a little different. We find ourselves standing in a group of our peers feeling like we are on the periphery. Not in, but not out. We can’t relate and yet we can. We find ourselves worried about all the same things as other moms and at the same time none of the same things. We live in a world that is all our own. A world created for us by the unique needs of our children. Our little world looks normal, but is only some of the time. I have had a hard time articulating the subtleties of this phenomenon. But one thing is sure, the traditional rules and definitions of parenting don’t often apply to moms like me. And this changes everything.

Moms like me struggle to feel happy that our kids are doing well “all things considered,” while facing the devastation that our precious child will never get better. Never be normal. Our “normal” is not normal, and so our definition of “doing well”, “thriving”, and “success” must be different from those of other moms.

While all the other moms are hoping their kid makes the school soccer team, moms like me are just hoping we make it through the week without an ER visit. While other moms are worried about flu season, moms like me are worried about hospital season. Academic success in our house is not how well he does in school, but rather if he physically made it to school. After school actives? We have them too. But instead of swimming and soccer ours are often physical therapy and pain management appointments. While other moms are trying to learn to let go, moms like me are trying to learn to let go too. Only we are trying to let go of our own dreams that our kids will have a normal childhood. We’re trying to let go and accept that doing well “all things considered” is as good as it’s going to get. We are trying to let go of false hope and come to grips with the fact that we will have to keep saying “No, actually it won’t,” every time someone insists it will get better.

Moms like me rarely do coffee or lunch dates. Our nails are not done and we probably haven’t showered. Compared to most “normal” moms I’m physically a mess, still living in the survival phase of a newborn years later. Eating, sleeping, playing and living often need special attention, care or modification. While other moms are worried about their kids bedtime schedules getting messed up, mom’s like me are wondering if we are going to get any sleep at all.

Moms like me have kids who deal with a lot. Childhood even in the best situation can be hard and heartbreaking and confusing. We have to watch our kids deal with all of it and then some. Our kids still get earaches, fevers and colds. Between normal issues and their medical issues, it feels like they never get a break.

Moms like me have kids who also struggle with being on the periphery and it is heartbreaking. My boys like swimming, trucks, dinosaurs and hockey. They want friends and they want to be liked. They laugh and they love. They go to birthday parties and love bedtime stories. Their world is the same as typical kids and they can relate to their peers. But, at the same time they can’t relate. So often they have to sit on the sidelines watching their friends play desperately hoping in vain their body will let them participate. Moms like me have to answer questions like, “why am I different?” And so often we struggle to find the right words or an explanation. I hate that my boys have to experience the fear and isolation that comes with being different. But it can’t be prevented. It is a natural byproduct growing up with a chronic disorder.

What I hate about moms like me is that there are so many of us. I hate that so many children have to fight the seemingly impossible. That their families struggle in silence. That they feel alone and isolated when surrounded by peers.

So to all the moms like me, please know you are not alone! Moms like you are out there and we get it. We may be dealing with different genes and conditions, but we are the same. I hate what my kids are going through and I’m sorry yours are going through something hard too. Hang in there. You are my comrade in an unending fight and I love your resolve. I love how much you do for your child. We will keep pushing on and we will survive. We have to. Our little people are depending on us. Please know that even though you can’t see us, moms like you are everywhere. We love you, support you and are rooting for you. Please know that however misunderstood you feel, other moms like you exist. We understand. You are part of a silent sisterhood. We are standing with you, we are following behind you and we are paving the way in front of you. Don’t be afraid to reach out to a mom like you for help. For advice. For support.

To the moms like me in my life, thank you. I love you and I never cease to be surprised at the power of your strength. You continuously show me the true meaning of motherhood and redefine what it means to be a friend. You remind me of the beauty and the wisdom in difference. You’ve given me perspective, resolve and a shoulder to cry on. Thank you for being there late at night and early in the morning. When I feel weak, worn out and scared, thank you for always lending me some strength.

But mostly, I’m sorry that you have to be a mom like me.

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6 thoughts on “Moms Like Me

  1. Thanks for your post. Your children are so lucky to have you. I don’t have the same exact issue, but I understand the feeling. It’s very hard to sympathize with other parents stressing about the normal ups and downs when yours are so much steeper, which can be alienating. Thanks for the encouragement 🙂

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  2. You say what I wish I was free to say. I have found extended family doesn’t want to really know what’s going on in your head, and actually tire of your “dramatic life”, the unending saga of medical challenges, drs, hospitalizations, etc… so even among my own family tree I stay silent–and “different.” There are so many of us “moms” out there, but I only know one other personally. Great blog posts! Blessings,

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  3. First of all let me just tell you this is beautiful !!! Second of all I read it literally 5 times and shared it with everyone close to me and not one person balled their eyes out . My son has epilepsy and is diagnosed with Dravet syndrome a rare form of epilepsy … a parent from my Dravet support Group shared this on Facebook I was on the hunt to find out who wrote it I wanted to say thank you !!!! Thank you , thank you !!!!! This is very well put and hit very close to home .

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    1. Kathryn,
      Thank you so much for your kind words. I’m so sorry for what your little boy has to go through:( I’m not surprised that those close to you were not emotionally impacted in the same way. They are not a mom like us. But I promise moms like you get it. You are not alone my friend, even when your journey is an isolated one. Please don’t be afraid to reach out and contact me should you ever need support. Even if it’s just to vent. You can always message me on Facebook through my page https://www.facebook.com/pages/Raising-Dystonia/1486721551593886. Please keep in touch:)

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  4. Wow. Thank you. I am a mom like you. My youngest has a chronic lung condition caused by prematurity. We don’t really fit with the special needs crowd but don’t really fit with the “regular” crowd either. We are the medical needs parents. It’s hard to explain sometimes how life is so different. How normal things are not normal for us. Things like how when I pack my bag to go out I always have an inhaler and a stethoscope, catheters and syringes, gauze, tubes, tape, etc. Things like how pink eye put my daughter into a coma for days. Things like how my other children (ages 11-5) are all proficient in CPR.

    I also find joys in things that others don’t appreciate. Do you know how much therapy it took for my daughter to learn to cough? A cough is usually loathed by parents, I did a dance and shed a tear the first time she coughed. Now when she makes a big cough we all say “yeah!” and clap for her.

    Yeah, life is different now.

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