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As a Mom of a Child With a Medical Condition, I Don't Have It All Together

People ask, “how do you do it?” Oh how I wish I could give an insightful answer or some admirable wisdom on how I handle being a parent to a child with cystic fibrosis (CF). I don’t have a great answer and I always laugh inside my head when people ask this.

I wake up every day as a mom to a 2-year-old girl with CF and just kinda do it. This is our normal now. I wish I had the recipe on how to handle this hectic life but I don’t.

I am not that CF mom who sanitizes a shopping cart at a store or the swings at the park before her child gets in. I don’t have this efficient routine for meds and breathing treatments. I am not up-to-date on all the medicines and current research for my daughter. You will not find me in the kitchen making fatty snacks for my little one like some other moms do. Those moms who do these things are awesome and I commend them, but that’s not me.

I feel as if I “wing it” every day.

 

Some days I ace it and some days I do average. I  mess up because, let’s be honest, this is not a easy life. I forget to refill meds because I have a lot on my plate. I put off calling in a RX not realizing how close I am cutting it until the last dose. I have pleaded with pharmacists more than I like to admit. I have cursed out pharmacists a lot more than I like to admit. I should be on top of germs but honestly, I am not. I get distracted and next thing I know she is playing in cat litter like it’s a sand box. I beat myself up for 2 seconds because I tell myself I should’ve prevented it. I have to remind myself this girl is a toddler and she is fast, CF or not. I learned in these situations all I can do is just hope and pray it doesn’t turn into an infection and pay close attention to possible symptoms. I tell myself to just do better next time.

Some days I have the energy to cook her five different meals to cater to her needs. Some days I give in to her wants with cheeseballs and cookies for lunch. I don’t sanitize her toys as much as I would like to. I let her crawl on the floor at the CF clinic because it makes her happy and that smile and laugh is amazing to hear. I don’t get excited to sit down and do breathing treatments for her after a long day and I am exhausted. I loathe the early mornings with breathing treatments when I know she will fight it.

I may not be your typical CF mom, but that’s fine.

Through my learning, my daughter has had amazing health, so I must be doing something right. My daughter is happy and I cannot wait until she is older and I can share these early years and we can laugh about them together.

Just because we became moms to children with different needs does not mean we need to be perfect or act perfect. Don’t beat yourself up if you forget to do something. I don’t act like I have it figured out, because I do not. I have learned to be patient with myself and with her.

If you are new to this like me, be easy on yourself. Your child is going to be fine while you learn the ropes and don’t have the best days. Just remember, “tomorrow will be better.”

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Thinkstock image by Natallia Bystraya

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