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.”

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Natallia Bystraya

TOPICS
JOIN THE CONVERSATION

Related to Cystic Fibrosis

A girl and her dog.

Why My Cystic Fibrosis Makes Me Terrified to Let People Love Me

Growing up with a chronic illness you fight many battles. As a child, you are forced to grow up quickly, make difficult decisions, and ultimately at times face your mortality head on and work to prevent it. In the midst of all of this, you grow as a person, you become mature and strong. It [...]
woman sitting on the floor with a mask over her mouth and pill bottles in front of her

Living on the Frontlines of My Battle With Cystic Fibrosis

I was born into a battle where my only two choices were to fight for the rest of my life or give up. Caught between that next crucial life-sustaining breath or expiring before I had even fully come into this world. Breathe in, breathe out. A simple task to most, but one that would become [...]
woman staring at the ocean

What 'Fulfillment' Means to Me as a Person With Cystic Fibrosis

I live my life by this motto: “Because I live and breathe… fill in the blank.” Anything can be written at the end of this sentence. This means anything is a possibility. I’ve not always viewed life in this way, but through maturity, experiences, gaining self-confidence, and finding my identity, I have come to believe [...]
Surgeons operating on patient in OR.

To My Life-Saving Surgeon, Who Immigrated From Iran

March 2, 2015. I was dying from cystic fibrosis (CF). I was on 24-hour supplemental oxygen support, counting the days I had been in the hospital waiting for an organ donor who would save my life — about 106 days at that point. In 1976, when you were only 16 years old, you chose to immigrate [...]