In Love and Life, Let us Reign
When I was pregnant with my second child, I had visions of Luca, my 4 year old, and his little brother chasing each other around the house, fighting, wrestling, building forts, and doing all those things little boys do. I wondered how I would manage with two kids when I could barely get out of the house with one.
Then Max arrived into our lives. Instantly, we were all in LOVE with his chubby face, sweet disposition, and how he was super easy going and sleepy. Right from the start, I remember my mom telling me how we were blessed to have a baby that was so good. I agreed whole heartedly.
For the first 2 weeks of being at home with both boys, my mom stayed to help with household chores while I learned to balance my time. When she left, I tried to do things on my own and get out of the house. Max would scream in the car, and when the cold air hit his face, he would gasp for air and start foaming at the mouth. Literally. I have never seen a child actually have white foam coming out of their mouth. Usually after a huge crying spell, he would fall asleep for hours.
As Max got older, I noticed how he didn’t look at us, or play with any toys. I couldn’t swing him on my hip because he wasn’t strong enough to hold himself up. Feedings were becoming more difficult. He wasn’t interacting with his world. He couldn’t grasp or roll over.
He didn’t try.
At 6 months, I took Max to an appointment because I was concerned about his eyes crossing and his lack of vision. The nurse practitioner told me he would grow out of it. This was the very first appointment where I learned to say, “No.” Our next appointment was with our pediatrician who spoke words I could not comprehend,
“There is a possibility his brain isn’t growing.”
WHAT?! WHAT DOES THAT EVEN MEAN?! HOW IS THAT POSSIBLE. No. He’s fine. Is he fine? Is this life threatening? Did I do something wrong?! Oh, GOD, please let him be ok. ….and then incontrollable tears. My train of thought was running away from me. I didn’t know what to think, so I thought the worst.
It took three doctors appointments for everything to finally sink in. A pediatrician, an opthamologist, and a neurologist all confirmed Max’s brain was not processing properly. Still, no one can explain why. Something changed inside of me. I stopped being sad. Instead, I was completely motivated by what we could do to help Max. I prayed and told God that as long as I can keep Maxwell, everything will be just fine. I will do anything, and I will be everything.
Ed, myself, my mom, and Luca are Maxwell’s core team, and we all share that same attitude, which is amazing. We immediately started Max in therapy with West Virginia’s Birth to Three program, and 5 incredible women entered our lives. They are Max’s therapy team. Because of them, we have been able to help Max go from doing absolutely nothing to using a stander, eating purees, beginning to problem solve, starting to roll, and using his vision to see the world in less than a year.
Life with 2 boys is different than I had imagined. It is incredible. Max has taught all of us more than we could ever learn on our own. Luca’s love for his little brother is so enormous! He reads to Max, guides his hand to play with his toys, feeds him crackers, and always asks for Max to be present in whatever activity he is doing.
Maybe one day we will have a reason or a name for Maxwell’s condition. Maybe we won't. I feel like I should write something profound here, but instead I can't stop watching Maxwell laugh at Mickey Mouse. I love how is smile is bigger than he is. I am just going to soak in this moment.