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.