East Regional Manager
Area Partner Tinker AFB, OK
When you find out you are going to become a parent, your whole world changes. You instantly start to plan and envision what your life will look like and what kind of parent you will be. You start to dream about what your sweet baby will look like, what hobbies they will have, and who they will become. These dreams are full of fun, happiness, and positive memories. No one ever imagines difficult moments. And you don’t imagine what it would look like to have a child with chronic medical needs. So, when that becomes your reality, your whole world doesn’t just change, it completely turns upside down.
We got my daughter’s diagnosis of VLCAD at 6 days old. I can still close my eyes and remember exactly where I was when I got the call that there was something “wrong” with my perfectly healthy-looking newborn who was sleeping in my lap. I remember feeling like I got hit in the stomach and trying to wake myself up from what felt like the worst nightmare. But I couldn’t wake up, because all in one second, my world was upside down and I felt like I was drowning.
It has been almost 8 years since then, and I wish I could say that our life has been easier than we imagined, but that would be a lie. My oldest daughter has had over 25 hospitalizations, hundreds of blood tests, and multiple surgeries, including the placement of her g-tube at just 6 months old. No one ever talked about how breast isn’t ALWAYS best and that sometimes it can even give your child heart and liver failure if they have certain health conditions. Feeding took on a whole new look for us from breast pumps and bottles to tubes and bags. I never knew how something as simple as eating could become so complex and complicated. And no one ever talks about the grief you experience even though you are parenting a living child.
We have since had two more beautiful babies, another of which was born with VLCAD and had her g-tube placed at 2 months old. We have established a new normal. One with syringes, extensions, and pumps beeping at all hours of the night. Although it was one of the hardest choices we ever made, I have never regretted having our kids’ g-tubes placed. It has given them the most normal lifestyle possible, has helped avoid more hospital stays than I can count, and allows my children to thrive. It has become a passion of mine to educate people and dispel the stereotypes that come along with having a child that has a second belly button.
So, why share my story? I just want to let you know that I’ve been there. I have been that parent sitting at the side of the hospital bed, watching the IV drip, the monitors watching every breath and heartbeat as it happens. I have been the parent that takes notes as I learned of a new diagnosis, a new medication, or a new treatment plan. I have been the parent that cries late at night in a darkened hospital hallway while your child sleeps peacefully in the room just steps away; where you feel like your whole world is crashing down around you but you hold it together to not scare your baby because you know you are the rock in their little life of uncertainty. Because as a special needs parent, that’s just what you do. We do everything in our power to help stabilize the crazy lifestyle that we live.
When I was approached in regards to helping launch the Enteral Department within MilitaryMommies, I instantly knew this was where I was supposed to be and what I was supposed to do. I am so honored to be associated with a company that truly believes in taking care of military families in all steps of parenthood. From your pregnancy and postpartum journey to beyond, we are here if you need us. It is a privilege to take care of you so that you can take care of them.
From one special needs parent to another, I see you. These are the moments you never dreamed of, but here you are. And although you may feel isolated, I want you to know that you aren’t alone. There is a whole world full of parents who know EXACTLY how you feel at that moment. We may be far apart physically, but know you are close to my heart, always.