My son was born with a genetic disorder called Prader-Willi Syndrome, but we did not know this is what he had until he was 12. For many years after his traumatic birth we sought help and answers for behavior, food, and learning issues. When we finally got a diagnosis the summer he was 12, we were relieved to finally have answers but also struggled with grief that comes from knowing that aspects of his condition would likely not be overcome in this life.
Our family was not functioning very well at this time. My two younger boys, ages 9 and 6, were struggling with the effect of my son’s behavior on the family. We were constantly dealing with his behavior problems at school and home that were exhausting and scary for all of us.
The demands on my patience, time, mental and physical energy and spiritual strength were severely taxed and I felt often that my reserve of strength was quickly drying up. I was constantly at “wit’s end” and felt I was drowning under the weight of all the new knowledge about PWS and the daily demands of the family.
It was extremely hard to ask for help from others because I just didn’t know where to start. I didn't know who to ask or what to ask for, and the prospect of educating them on my son’s needs was completely overwhelming. I didn’t know who could be trusted to care for him, not get frustrated by him and not judge us.
At this time I was serving in the Primary presidency, and the president took the time to really find out what was going on in my life. She started inviting my son over to spend time with their family to give me much needed breaks. Her help was invaluable, and I needed someone close who could see what was going on before I could trust them to help out.
School issues continued to escalate, ultimately resulting in a period of three weeks when he was out of school. My friend, the Primary president, contacted the bishop, who then met with us to find out the scope of what we were dealing with on a daily basis as well as what our immediate needs were in regards to him being out of school. He suggested that we get a list of people in the ward to help out a few days a week to give us a break on an ongoing basis.
My husband's and my first response was "no way." I felt that I couldn’t ask this of others, and my husband admitted our pride was getting in the way. We did not want others to know the difficult parts of his condition. At the same time, I acknowledged to the bishop that I didn’t know what else I was going to do. He assured us it would be a blessing to the members of the ward. I believed and trusted our bishop. The Spirit was present and was beginning to open our hearts enough to let other people into our lives. We finally agreed to let the ward help, but it was still a very scary step to take.
The Primary president worked with the Relief Society president to come up with a list of about 11 families that they felt would be willing to help us out. There was even a family from a different ward included! They met with me to share the list and again the Spirit strengthened me, despite my fears, to move forward.
The next step was that the bishopric called a meeting with these families as well as the youth leaders that our son would encounter. It would be an informal meeting where we would explain his condition, the behavior strategies that work, and what to expect when he is in their home or at a youth activity. This was an extremely daunting meeting for us to prepare for. We prayed and asked that we might have the strength to accept help. We prayed, as we prepared an information packet, that we would know what information to share.
The Primary president worked with the Relief Society president to come up with a list of about 11 families that they felt would be willing to help us out. There was even a family from a different ward included! They met with me to share the list and again the Spirit strengthened me, despite my fears, to move forward.
The next step was that the bishopric called a meeting with these families as well as the youth leaders that our son would encounter. It would be an informal meeting where we would explain his condition, the behavior strategies that work, and what to expect when he is in their home or at a youth activity. This was an extremely daunting meeting for us to prepare for. We prayed and asked that we might have the strength to accept help. We prayed, as we prepared an information packet, that we would know what information to share.
They had received a request of help, and they jumped at the chance. My husband and I could barely speak.
Still, all of that Sunday I was trembling. People were already approaching me saying they were so happy they could help. By the time the meeting came, I wasn’t sure I would be able to stand, I was shaking so hard. We sat in the front row of chairs as we waited for it to start. We turned around, and the sight was one of the most humbling I have ever witnessed as the room was filled with families that were there for us.
They had received a request of help, and they jumped at the chance and came willingly to offer their help and support. My husband and I could barely speak from the emotion in our hearts. It is one of the times in my life when I have felt truly humble. When I knew that I needed help and help was being provided.
Since that time, my son has been in the homes of over half the ward members. The list continues to grow as people volunteer to have him in their homes. We continue to feel completely humbled by people’s generosity and patience and love for him. We have such a debt of gratitude to our ward, and yet these families continue to say it is their privilege and blessing to help out.
He loves each family he spends time with. One of the most heartwarming sights for me is when a very young child of one of these families will happily say hi to my son at church. What a wonderful thing that child is learning about love, friendship, and service. The respite I have experienced is lifesaving. The feeling of love and support still overwhelms me. But from this experience, I have learned the most about the Savior's love for me, my son, and my family.
Since that time, my son has been in the homes of over half the ward members. The list continues to grow as people volunteer to have him in their homes. We continue to feel completely humbled by people’s generosity and patience and love for him. We have such a debt of gratitude to our ward, and yet these families continue to say it is their privilege and blessing to help out.
He loves each family he spends time with. One of the most heartwarming sights for me is when a very young child of one of these families will happily say hi to my son at church. What a wonderful thing that child is learning about love, friendship, and service. The respite I have experienced is lifesaving. The feeling of love and support still overwhelms me. But from this experience, I have learned the most about the Savior's love for me, my son, and my family.
