It's time to stand together
My worries were more than I could even fathom. A cold, dark storm was rolling in and it was unstoppable. I didn’t have time to prepare for the winds that would hit me, the doubts that would shower me every day, and wondered if I could ever feel the warmth of happiness again.
You don’t want to hear what they are telling you, but you can’t make them stop
You don’t want to hear what they are telling you, but you can’t make them stop. I hoped and prayed that our follow-up appointment with the high risk pregnancy doctor would result in a “mistaken CDH diagnosis", and that he really didn’t have it.
But that wouldn’t be our story; this wasn’t going away. My doctor looked at me gravely and said, “Do you understand that your son is going to need an extremely high level of life sustaining care when he is born?” I nodded because I could hear what she was saying, but my brain was beginning to shut down in order to protect what my heart couldn’t handle feeling.
I searched the internet and came across sites with medical-heavy language, stories of babies who had passed, small babies fighting day after day for their life, and I watched exhausted parents as they narrated the terrifying roller coaster ride they had not bought a ticket for. But then something changed. I came across a parent-run CDH site where one word stuck out to me- “HOPE.” At that moment, I didn’t realize that hope was what I was desperately searching for and something that could bring such healing in such a traumatic stage of our journey.
Adam has no idea of what his little body has already been through, but I imagine his heart and soul are stronger because of the struggle. He is a regular toddler in many ways, tearing apart cabinets, curiously throwing small toys down heating vents, and even catching on to bedtime stalling techniques, like suddenly becoming very thirsty and hungry when we put him in his crib! I catch on of course, but sometimes I take him out and hold him just a little longer, because I remember how we started.
Now I am one of “those people.” You know, the ones who say “even if I could give this journey back I wouldn’t.” I understand now why they say that. If I give back CDH, my life goes back to what it was before. I give back the character and resilience I learned, the friendships that have been formed both in and out of the hospital, and the realization of the true fabric of existence.
Sometimes in life we look around and notice the “different” and fail to remember that although unique in many ways, we are also very much the same. When we eliminate the background noise of life, remove the worries that just aren’t that important, we begin to see more clearly what connects us together.
We are honored to have you be a part of this journey to infuse the CDH world with the optimism, understanding, and support that this community needs. We invite you to come along with us, because together we are stronger!
- Annie Zolman
Founder of Tiny Hero