What the parent of a rare and medically complex child wished you knew....
#RareDiseases #MedicallyComplex #MedicallyFragile #MedicallyComplexChild #MedicallyFragileChild
1. We will never get over the heartbreak of our child’s diagnosis. Some days are easier... but the grief never goes away.
2. We are lonely. Oh, so lonely. We hate that we don’t get invited to things anymore. Even if we can’t go to things most of the time, still invite us. We miss our friends and it’s nice to know people still want to hang out with us.
3. We are tired. Like newborn phase tired... even if our child is no longer a newborn. Please don’t complain about how your child got up twice last night... it really annoys us.
4. We appreciate help... but we will never ask for it. A simple meal, gift card, or offering to watch our other kids would mean the world to us.
5. We also experience the small things in life more fully and with more appreciation. Every moment is precious and every milestone is a miracle.
6. We feel love deeper. When your child isn’t promised tomorrow... you love more fiercely. There is so much love in every moment.
7. Our life looks hard... and it is. There is nothing easy about watching your child be poked countless times or being put to sleep and taken away to surgery. All the appointments, therapies and medications. Sometimes it’s too much and there just aren’t enough hours in a day.
8. We wish you wouldn’t say “I don’t know how you do it. I couldn’t do it if I were you.” Yes, yes you could. You love your child, so you will and can do anything for them.
9. As hard, lonely and sad as it can be.... this life is also beautiful and rewarding. We wouldn’t trade it for anything.