What I Want Others To Know About Raising My Preemie That I Haven’t Seen On Other Lists

I have read many great lists of what other preemie parents or special needs parents want others to know. Most of the time, I nod in agreement while I read these lists. However, there are a few things I would like to add that I have not seen on these lists.

1) I have the inability to picture life past next week. Many parents already have hopes or ideas for their children’s future. I don’t. There are still so many things unfolding and developing that I have no clue what next month holds for us.

2) If Charlie misses many therapy appointments or doctors’ appointments, I worry about the long term repercussions. If I slack off on following through with doctors’ recommendations, I regret it and think about the possible negative impact. Our schedule is not filled by frivolous activities. As much as I would like to, I can’t “slow down” or “take a break”.

3) When I vent frustration about our interactions with the outside world, it is just that. I am not upset with anyone or anything in particular. Mostly, it is sadness that we face obstacles or Charlie struggles with things other people don’t think about.

4) Parenting a special needs child can be an isolating experience. Sometimes (although, not lately), I feel disconnected from those around me. Kind words go farther than imagined. My favorite words to hear from others are, “I care. I am listening.”

5) Yes, it is a tough road we are on. Yet, I’m so grateful that she’s here.


Charlie checks out last night’s snow fall. There may be snow play if it warms up later.


About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

One response to “What I Want Others To Know About Raising My Preemie That I Haven’t Seen On Other Lists

  • Christine

    This time of your life with the guilt of”not doing enough” seems like me last year. I waited six months to enroll my daughter in early intervention. I needed that time to adjust to a surprise baby with a surprise diagnosis with a surprise great condition.

    You were thrown in feet first,I was able to get my feet a little under me before we delved in. And at that I started with one therapy once a month.

    It wasn’t until after a hospitalization for rsv and her heart surgery that I felt comfortable adding anything else to my plate. My sister in law just had triplets, all preemies. One micro.

    I understand the guilt, the feeling of not doing enough. I still feel it. Adding I guilt for not staying early enough and taking away from my other three daughters… it’s a wonder I survived the first 18 months. It’s taken almost another year to feel “with it”. And to remember I have to take care of myself because no one else is going to.

    It’s easy to get caught up in what we should be doing, just remember this is for the long haul. You’re doing awesome. Even when you don’t think you are.


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