Picture it: 1998, a snowy Christmas Eve; the six Burnham children and their parents sit down to their traditional polish-themed meal. We say grace and afterwards Dad adds additional thanks, “…and Lord, we thank you for the many blessings you have given us. We thank you for our family and we thank you especially for the youngest member. Amen.” My eyes immediately fall on the cute little red-head, Therese, a chubby and angelically adorable two-year-old who was sitting next to Dad. “Why does Therese get a special prayer?” I asked with a middle-child-feeling-left-out-whine. Dad just got this smirk on his face and said, “Who says that Therese is the youngest?” Even though we were all pretty young, being part of a large family, we all knew what that meant. “WE HAVING A BABY!!!” We all screamed and got excited, jumped up and down… and who knows what else. Six kids, all under twelve, finding out they are going to have another brother or sister…on Christmas Eve—it was an extremely joyous occasion.
That is my first memory of Max.
His due date was May 15, but one cold morning on March 24, Dad woke us all up very early—too early—it was still dark outside. I went downstairs and found Mom sitting at the table trying to slow her contractions. The baby was coming, two months too soon. I was excited and scared. Dad took Mom to the local hospital, but after unsuccessfuly trying to stop her labor, it was decided that she would receive better care at a larger facility so they transferred her to Aultman hospital in Canton about a half-hour north of our little town. We waited all day for news…nothing. No baby yet. I went to bed and had a dream that the baby had been born.
I woke up the next day only to find out that I hadn’t been dreaming. Leigh had come into my room in the middle of the night to tell me that we had a little brother! Our parents had named him Maximilian John. Though he only weighed 4.1 pounds, that was pretty normal for a preemie and we weren’t too concerned. However, we soon became aware of many other problems. This is where everything runs together and my remembrance of details gets fuzzy. Max had intestinal dysfunctions, breathing problems and four holes in his heart. Within twenty-four hours, Max had been transferred to Rainbow Babies and Children’s Hospital in Cleveland and had the first surgery on his intestines. He was so little, so weak and so sick. He spent the first 2 months of his life in the Neonatal Intensive Care Unit. He needed an IV, which was stuck in his head because his veins were too little to support it anywhere else [sidenote to talk about the wonderful men in my life: the doctors had to shave half of Max’s head to see his veins. So what did my Dad and Ben (who was so excited to finally have a brother) do? They shaved their heads too. Solidarity!].
Max was also too weak to nurse and had to be fed by feeding tube that went up his nose, down his throat into his stomach. Mom, being the courageous and caring lady that she is, wanted to give her little suffering baby every ounce of help she could. As a preemie with many other complications, he needed every bit of strength available. Mom, knowing that breast milk is the most nutritious food any baby can get, decided to pump. Thanks to my mom, Max was able to get all the nutrients that were best for him via his feeding tube.
As I write this, I can’t believe that I don’t remember more of all the complications and difficulties from the hospital, because I know there were more. I remember hardly seeing Mom and Dad because they were at the hospital so much. And if we did see them, they were always so tired, so sad and so worried. As a little girl, I had never had a care or concern in the world, but seeing my strong parents like this… I knew it was serious. I knew something was severely wrong.
But, after all this time, it is not all that worry, hurt, heartache and fear that I remember most distinctly It’s the following:
Shortly after Max was born (I don’t remember exactly when, but I’m sure within a few days), Dad called and told us that Max had Down syndrome. He didn’t have to explain it; Family friends had a son with Down syndrome, so my siblings and I all knew what it was…
…and I was MAD at God.
That was the first time I was ever angry… no not angry- livid with God. I remember it. I didn’t understand how he could let such a bad thing happen to us because in my little nine-year-old brain, we were good people. I was so upset. I couldn’t process it, so I just get repeating it to myself… “I have a brother with Down syndrome. I have a brother with Down syndrome.” My life had changed completely and I knew it. I wondered how it would be different. I saw Max mostly-if not only- as a burden who was going to make our life so difficult.
Because Max was born during flu season and he had no immune system, us siblings were not able to go see Max for a good while after he was born. I had been so anxious and excited to see my brother until I heard he had Down syndrome… now I was just scared. A brother with Down syndrome? How was I supposed to love him? All the people I knew who had Down syndrome scared me and made me nervous. How was I going to live with one?
A few days later Dad called home again, “Pray Gracie,” he said, “Pray hard. I don’t think he’ll make it through the night.” I got off the phone and I laid on the couch, buried my head in a pillow and sobbed. “Please God, please…” I cried, “I don’t care if he has Down syndrome! He’s my brother!”
I don’t know what changed, why all of my anger was gone, and why the fear that I had had towards living with a brother with Down syndrome had transformed into a fear of living without him. All I knew was that I did not want to see my little brother for the first time lying in a casket. I told God I was sorry…and I prayed and cried myself to sleep.
The next day we got a phone call: Max had made it through the night. Not only that, but he was doing better! From that point on, though things were still difficult, Max’s health was steadily improving. He grew stronger every day.
I will never forget the first time I saw my youngest brother. Dad drove us up in the family van; somehow I had been the lucky kid who got to sit in the coveted front seat. The two-hour drive seemed to only take 15 minutes—I was so excited! We got to the hospital and saw Mom. She cried…so I cried. We couldn’t go see Max right away. So we got a tour of the hospital. I saw the room my parents stayed in and wondered how they both fit on that tiny twin bed, we found a little indoor place area for kids, we rode the elevator up and down a few times… until finally…it was time!
Six smiling kids and two tired-but-happy parents walked down the tiny hallway to a glass window that separated the NICU from the rest of the hospital. Max was still too fragile and susceptible to germs for us to go in, so Dad brought him out to the glass. He held him up so we could see him and we all pushed our noses against the glass to get a better view.
There was Max. And it was love at first sight.
Max yawned and opened his eyes. He looked at the Dad, then looked at us. He started talking to Max and pointing to us. I have no idea what he actually said to him, but I imagine it was something like, “Look Max, those are all your sisters and your brother.” Whatever it was, he looked at us, knew we were going to be a part of his life, and decided to show us his own spunky personality right away. He put his hand on his forehead, shook his head back and forth and stared blankly at us before looking back up at Dad with a face that seemed to say, “Save me.”
Little did we know that he was here to save us.
~ Grace
Loving Max 