The story of the struggles of my skin is only half of our Skin Mama story. The other half is where we show even more of our vulnerably and hope to connect with people who may be in need of a story closer to their own. In terms of becoming a Mama, my journey has been exceptionally hard. Uncharacteristically difficult. The beautiful, peaceful, water birth we were planning was replaced with a traumatic emergency c-section rushing to get my son out alive. The two week maternity leave my husband and I planned to spend at home loving on our newborn baby was replaced with 13 days in the NICU on an emotional rollercoaster wondering if our son was going to be ok.
The first blissful year of life capped with an amazing 1st birthday party was replaced with our son spending 3 months on oxygen, anxiety over the consequences we would face if he got sick, questioning if he was healthy, and having the pandemic shut down the large party we were planning to celebrate how far he had come. To cap off our first year, 2 days after our son turned 1 we were hit with the devastating news that our son had Ectodermal Dysplasia. An extremely rare genetic disorder. This was one of many of our breaking points. As our minds swirled with questions, our hearts were filled with sadness, confusion, devastation, and a feeling of isolation.
We had never heard of this condition, didn’t know where to find support, and we were in the middle of a global pandemic. Getting the answers we needed would not only take time, but would be done in a whole new way that we were not accustomed to. We were not able to take our son to see any in-person specialists, we were limited to telemedicine zoom calls where the doctors were struggling to examine our son.
Our frustration was mounting and things felt heavy, and unbearable. Then, we would look in the face of our son, and somehow he would quiet our souls. There was something in his sweet, perfect, face telling us that he was ok, and we would all get through this together. I can not lie and say this journey has been easy, or that we are anywhere near the end. We have a long road of care for him. But what I can say is that we are stronger together, we will never give up on each other, and we have the most perfect little angle who made me a Mama.