5 years ago today, I had my first sleep over with my little lamb. We had just received the news he was being discharged. We were all shocked and amazed, even the doctors. We had a list of training and things that had to be done before sweet little Liam would be released so we made quick work of a long list of do's.
This particular night, was my favorite in all of our NICU journey. Why you ask? Because for the first time since Liam was born, he was all mine. My responsibility. We were put in a sleeping room, just the two of us. Nothing but the two of us to occupy each other. It was fully my job to change his diapers. My job to feed him every two hours and give him his meds. If he woke up crying, it was purely my job to soothe him. Finally things seemed right in the universe because this is how it was supposed to be. A mother taking care of her baby.
I could hold him all night if I wanted to. There was no one who was going to get between my baby and me. My heart had broke for this. My soul had yearned for this. Finally, just finally I can't even tell you how happy I was sitting there in a room so quiet that it put a library to shame, with just my baby in my arms where he belonged.
I remember sitting there rocking him as I fed him, telling him that this was how it was supposed to be. Telling him he had no idea what he had missed out on and how I would make it up to him and never put him down. I remember the tears rolling down my face because I was just that happy. We were in our happy bubble and nothing was going to pop it.
At least that's what I thought until the doctor walked in the room to discuss Liam's MRI results. Because Liam had been on ECMO, he was required to get an MRI before he was discharged. The results weren't what we were hoping and I'll never forget how crushed I felt. How my reality was yet again changed because of this tiny little boy. Liam's MRI showed a bright spot not he portion of his brain that controls cognitive thinking, problem solving and fine motor skills. They weren't sure if he'd ever have an imagination or what his future would hold. After dropping that bomb, the doctor left us. I remember holding Liam and looking into his face. His eye lifts tried to open but he was just so tired. I sat there, looking at this little boy who had fought so hard and I had our first serious talk.
Sure I'd told him before that he needed to keep fighting but this was different. I looked at Liam and told him that I didn't care what the doctor said, that we would jump each hurdle as they came. We needed to worry about feeding and gaining weight first. I told Liam that the future was always going to be uncertain but together we would make it through anything. At that moment I decided I wasn't going to let my bubble burst, but I would modify it as needed. No matter what Liam's future held, I would be right there by his side to help him.
And for 4 years, 5 months and 1 day, that's what I did. I stayed at my sons side. I cheered him on as he jumped (or sometimes stumbled) over each hurdle. I picked him up every time he fell and together we faced our toughest challenges. Liam proved to have an imagination at age 3. The first day he showed any imagination, I cried. He was sitting in the living room floor with his Hotwheels. He'd spent hours just sitting there arranging them. Then suddenly the cars started racing and here's Liam narrating the race followed by a wreck. With tears of joy I fell to my knees beside him and swooped him up in a hug. He had once again proven the doctors wrong and that God was bigger and greater.
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