Parenting medically complicated kids is never easy on anyone! But as Nicole says, “the endless advocating is always 100% worth it.”
Nicole also shared this photo of her son whose nurse is starting his IV while she holds his hand. It truly captures the life of a medically complex child and his mom all in one picture.
- Scheduling appointments around appointments, which are scheduled around other appointments is more difficult than you may think.
- Your 12-year-old needing to hold your hand during every lab draw, and every IV, because it often means multiple sticks is heart-wrenching.
- Having to say “no” to certain activities because the risk of injury is too high is heartbreaking.
- Being a human punching bag, emotionally 24/7, really, really sucks.
- The loss of friends on both sides because of the lack of understanding is hard.
- The continuous fight with insurance is exhausting.
- Constant unpredictably. You’re often walking on eggshells which is equally exhausting.
- The lack of sleep well past the developmental expectations is brutal.
- There are many endless nights of researching and praying early into the morning hours because well, refer to #8.
- The endless advocating is always 100% worth it.
Nicole
Gabriella True
