10 Confessions of a Preemie Mom

Because it’s Prematurity Awareness Month, I feel like I should be writing more this month. However, my mind is rebelling against any attempts I make. It’s more than writer’s block. I have a lot of negative feelings when I think of writing about prematurity. Today, I thought I would just go for it and write those thoughts I have but don’t share.

1. I am not strong or brave. I am simply a mom. I do for my daughter, Charlie, what any mother in my position would do. We’ve been handed more challenges than some. Quite honestly, I feel like I’m barely holding it together.

2. I am so tired. No, not the tired other parents complain about. The tired that comes from things like fighting regularly with insurance companies, cutting excessive red tape to receive services, attending daily therapy or doctor’s appointments, having the same conversation over and over again with different providers, and keeping up with medications, orthotics and procedures. Add regular parenting responsibilities to everything and I end up exhausted.

3. I am envious of other moms. I know I shouldn’t compare. But I’m human. The jealousy stems from the idea that they have what I believe I was supposed to have: a normal baby and toddler experience. I’m envious of those moms whose kids can walk well or whose kids can eat independently. It’s petty and small, but I deal with a lot of envy and jealousy.

4. The little things mean so much. I have become accustomed to living a life of crisis response. A good day in my world is one where we are all still standing afterwards. When someone holds the door for us or is nice to us for no reason, it makes my day. Depending on how my day is going (such as one of those days where everything goes wrong), it will sometimes make me cry.

5. Crying happens a lot. I cry for a variety of reasons. I cry for what we have lost. I cry because Charlie accomplishes something new. I cry because having a second child is not an option. I cry because I’m touched by someone’s kindness. I cry because I’m frustrated, angry, tired or stressed. It mostly happens in the car or behind closed doors, but I do cry a lot.

6. My volunteer work is a form of self-care. My volunteer work is my way of dealing with all the anger, hurt and powerlessness I feel. I channel those things into the drive and energy I use for my volunteer activities. It is rewarding to make something good happen.

7. Sometimes I need to go outside. When I find myself losing it, feeling defeated or at my wit’s end, I either go for a hike or sit outside with Charlie. Being outside relaxes and recharges me.

8. I can’t stand platitudes. I want everyone to know that it’s perfectly acceptable to say, “I don’t know what to say” or “Yeah, that sucks.” Platitudes rarely, if ever, provide the comfort they are meant to provide. Mostly, they tell me how disconnected I am from you and everyone else.

9. I neglect my own health care. My neglect ranges from small things to big things. This month, I had to go without an inhaler with an $85 co-pay. The past few months, I have been putting off going to the dentist to have a temporary bridge replaced and teeth pulled. For a couple of years (since I found out I was pregnant with Charlie), I’ve needed to have another spinal fusion.

The neglect is not because I’m lazy, cheap or irresponsible. Mostly, it’s because I don’t have the money for these things. I’m priced out. Additionally, while there really isn’t a good time for back surgery, it can be an impossibility when you have a small child with special needs.

10. Despite all of the things listed above, I’m grateful, optimistic and hopeful… just not every moment of every day. But I’m grateful for everything we have, such as a home, food and Charlie. I try to see the things we have or could do rather than what we don’t or can’t. I’m hopeful that either I will adjust to this life, Charlie will overcome her challenges or both.

Follow this journey on Cheering on Charlie.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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