It is hard to believe that it was only 14 years ago my youngest son, Gavin, was born on Valentine’s Day. I remember it vividly as the feelings of joy of having our third child and a new baby quickly turned to fear, sadness, and a sense of being overwhelmed.
My wife, Debbie, had what she thought was a normal pregnancy. All seemed fine until she delivered and he was floppy and unable to suck. It quickly became apparent that something was wrong and we were sent to St. John’s Hospital in Detroit. We spent the next two weeks in NICU. After learning how to feed Gavin through a tube in his nose, we were sent home. One week later we learned that he had what is called Prader Willi Syndrome or PWS.
Simply, PWS is either an addition or deletion of the 15th chromosome. In Gavin’s case, it is a deletion. Individuals with PWS have hypotonic or weak muscles and fail to thrive as infants. Around toddler or preschool age, they develop an insatiable hunger as the hypothalamus in their brain fails. This part of your brain tells you that you are full. PWS kids can struggle cognitively and developmentally.
As parents, we were devastated. I remember telling my Pastor that I knew God would not give me more than I could handle. I will never forget his response. He told me that this was not true. God does give us more than we can handle so that we have the opportunity to learn how to lean upon Him.
“Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths” (Proverbs 3:5-6 ESV).
Fast Forward
On the weekend of Gavin’s 14th birthday, he had the opportunity to first attend a birthday celebration of one of his Lutheran school classmates. He was so excited to be invited to her birthday party. He spent the previous weekend getting ready. He picked out his clothes, packed a bag of the items he felt he needed, and practiced hours upon hours with his karaoke machine preparing a concert of Christian songs for his dear friend.
My wife and I worked very hard to help Gavin understand that, although his gift of a concert was very nice, his 13-year-old friend may have more planned for her celebration. Right before we were ready to leave, we checked Gavin’s bag. He had well over a dozen CDs of his favorite Christian music. We had to break the news to him that he could only take one CD. This was our way to help him limit his concert to a song or two. He was very upset. At first, he edited his collection to 4 or 5 CDs. We stood firm on our directive and after several tears, he chose one.
We were not sure the evening was going to go well. We worked hard to let Gavin know that this party was not for him. It was for his friend. We tried to help him understand that one or two songs were enough. He was not happy to say the least.
When we arrived at his friend’s home, I pulled the mother aside to let her know of the situation and made sure she had our number in the event that things turned sour. My wife and I had an uneasy feeling in our stomachs.
The next morning, on Gavin’s birthday, we received the following e-mail: “Thank you for letting Gavin come over tonight. We really enjoy having him. He sang three songs and ended with Blessed Be the Name of the Lord. All the kids were circled up with their arms around each other singing. It was an awesome sight. I understand that the two of you were a little worried about how his concert would turn out. I will tell you it was the highlight of the night for us. It is the moment we will remember from our daughter’s birthday.”
The next day, eight of his classmates joined Gavin at a Saginaw Spirit hockey game to celebrate his birthday. The students were simply awesome and Gavin was thrilled.
The Blessing of Faith Families
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God has taught us so much through Gavin. He has shown us what it means to be bold in our faith and to lean on God. He has shown us how He uses His people … Gavin’s Lutheran school friends … to be His hands. God has used the faith families of four Lutheran schools to bless him and us. In fact, God has used Gavin to touch many lives at St. Peter, Richmond; St. Paul, Flint; Rochester Central Lutheran School, Rochester, Minnesota; and now Peace, Saginaw.
Gavin is a product of Lutheran Christian education. Gavin is a child of God. Gavin is a blessing to our family and, in many ways, God is using Gavin and his classmates to be His merciful hands to each other and to the world.
