To the Parents Holding Their Breath for 'Milestones'
I’ve seen a lot of posts recently throughout many of the support forums I belong to about HIE, and about the amazing recoveries many children have from HIE.
If that doesn’t happen to be you, know that your journey is a-OK too.
There is immense joy, hope, and immeasurable love that comes from each part and each outcome.
I remember being in your shoes. Holding my breath for every milestone. Some happened on time, some didn’t. When they didn’t, I thought “maybe he’ll catch up!” Sometimes he did; sometimes he didn’t.
Each stage of this journey is like opening a present. Some boxes can be clearly discerned by the shape of the box, or how it sounds when you shake it and are “what you see is what you get”, and some are like those boxes that hold more boxes.
One of my greatest “ah-ha!” moments was when I read through three different stories of parents just like me, with three very different outcomes. Each family went on to have a second child. Each mom held a career they were passionate about. And each still has a marriage that is intact.
One child is unaffected, one is mild to moderately affected and one is more severely affected.
Guess what? Almost five years later, it’s great that my kid can check some boxes off on charts, but it’s most important to me that he’s happy and loved. The challenges still come and go, but they aren’t as intense as they once were. I also know as other things come up, I have an army that will share their strength with me when I need it most.
You have that army, too!
So, today, I just want to send hugs to all of you on this journey. You are all amazing parents and I am in awe of your willingness to help and encourage other parents who are traveling on this journey. No matter what, we are in it together.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo by Lacheev.
Betsy Pilon serves as Executive Director of Hope for HIE (hypoxic ischemic encephalopathy), a non-profit focused on improving the quality of life for children and families affected by HIE through awareness, education and support. Her son, Max, was diagnosed with HIE after he was born, resulting in cerebral palsy, and a few other diagnoses. She and her family live in West Bloomfield, Mich. and enjoy the many lakes and four seasons Michigan has to offer.
betsy-pilon