10 things a Mother of a medically fragile child would want you to know.
10) This type of illness isn’t something that will go away, go into remission or grow out of. It’s lifelong.
9) We’re never medically cleared. We always have one toe in the forest. Being medically stable isn’t something we can take for granted. When we leave the hospital after an admission, it’s always “until next time.”
8) Learning the ins and outs of hospital politics is whole new learning curve. Along with research and treatment options.
7) ADVOCACY, ADVOCACY, ADVOCACY. You are your child’s only voice. Excellent advocacy skills are essential to ensure a healthy outcome, proper services and increased quality of life for your child.
6) There are a lot of teams. Medical, pharmacy, equipment, school-based, home-based, therapy-based. Lots of names, lots of emails and lots of logistics and planning. That means being a team player always – even when you haven’t slept, you’re stressed, you’re sad, happy, frustrated and even defeated.
5) We are raising the most beautiful empathetic siblings.
4) We do “inchstones” NOT milestones.
3) Our house looks like a hospital with all our medical supplies and equipment. Just with nice decorative baskets.
2) The highs are so high and the lows are scary low.
1) We do not have the luxury of planning for the future. Which means we have no excuse but to live in the present. Every single second of everyday. Because that’s all we have.