Raising kids is tough and not for the faint of heart! I give parents out there doing it alone all the credit in the world. I am proud to say that I know many who are knocking it out of the park.

Raising a special needs child, well, that’s an entirely different ballgame. You are asked to make decisions you never thought you would have to make, and left wondering if it was the right one. You are asked questions you don’t know how to answer and learning about tests and procedures you never even knew existed.

Not too long ago Steve and I took Ella to a new GI doctor down at Columbia. Within her team of doctors, failure to thrive, was a group of words that we were starting to hear more often, and felt like we needed a fresh pair of eyes on her. This doctor was supposed to be one of the best and we waited months for an appointment. Going to the city always makes me anxious. Steve drives like a cop, there is always traffic, and parking is a nightmare. My stress level escalates the second we leave the house. Visiting with new doctors makes it even worse.

As I have mentioned before, Ella is very small for her age. She eats like a champ, but doesn’t gain weight like she should. We have had swallow studies done, blood drawn, and she has even had an exploratory surgery to see if she had an intestinal malrotation. All results have shown nothing alarming. Her proteins and enzymes were checked as well.

Based on this information, other medical records, and dialogue that was exchanged, this doctor recommended a PEG tube for Ella. It was explained, in simplest terms, as a tube that would go into her belly allowing liquid to be pushed in, essentially bypassing parts of the normal digestive track. The liquid would get to her stomach immediately and provide higher caloric intake.

After listening all the pros and cons we could think of, together Steve and I decided that was not the route we wanted to take. We didn’t want Ella to give up on eating regular food because she was full from the liquid, and we didn’t want her to be put through the surgery. I had seen too many complications with this surgery in my social media special needs groups to put Ella through that. We were convinced there was another way to get some meat on those bones. I would feed her all day if I had to.

Making any decision regarding a medical procedure takes a lot out of you. When you are so used to medical professionals telling you to carry on as usual or offering no solution, these visits add both hope and fear to a world with so many unknowns. Keeping it together and not making rash decisions is so incredibly important. It becomes very easy for your mind to wander.

Steve is my rock. He brings me back from the dark places my mind travels to after doctors appointments, he holds me when I can’t take anymore and need a good cry, and he listens and supports my desire to see new therapists and doctors for more opinions. Most importantly, he is the voice of reason, and his unconditional love carries us all. Sure we disagree and have had some memorable battles but there is no doubt in my mind, we are better together.