Nov 30 2009
I have so much to reflect on and be thankful for this Thanksgiving but one moment defined all of that for me.
On Wednesday evening Sam sang in church with his Sunday school class for the first time. There was a lot of prayer that day…and hope…and even some building of the shell that protects me from dissapointment, worry or public speculation. With typical children you worry if they will misbehave but you get past that. With a child with special needs it seems we are always trying to put them out there in the best light, feeling the need and want to have them achieve and perform above and beyond the rest. It seems that when our children misbehave or have meltdowns it is automatically associated with their diagnosis or the fact that they are differently abled or sometimes we even feel people speculate about our parenting abilities.
But on Wednesday…I took a deep breath…I put my trust in the Lord and we headed to church. Sam and I had practiced his song “Jesus Loves Me” throughout the week and he even knew the sign language for the song. While we waited for the other children Sam went up on the altar and walked out from the back wall like he was on stage and he would throw out this arms to either side and with a smile as large as the room he would say “Ta Da” and he would bow, of course waiting for the applause. When the other children began to arrive I dropped Sam off in the music room with the other children. I didn’t stay which felt strange because I’m usually so overprotective but instead went to sit in church with my husband and parents just like all the other parents. I don’t know why those times stick out in my memory, the times when I’m not a parent with a child that has Down syndrome but instead I am simply a parent…but they do and I cherish them.
Sam sat with the other children in the back of the church. When it was time for their song, Sam had to be told a few times to get up and go with the children but once he did he moved to the front of the group. The other children were nervous and turned away from the church audience, but not Sam, in fact he was very interested in getting ahold of the microphone that was in front of him…he really wanted to be seen and heard and he was front and center. I watched him amazed at how far he has come. A child with multiple diagnosis, singing as many words as he could keep up with…we usually sing at a slower tempo to allow him time to find each word…with a few signs thrown in for good measure. In my eyes…he shined and as I tried to video tape through my tear filled eyes I missed the fact that I had never accurately hit the record button…this moment however would be engraved on my heart forever.
When we practiced at home, Sam would always bow after he finished singing but in church they ushered the kids back to their seats quickly. I think Sam thought about that during the rest of the service and wanted to complete his performance. He was fidgety when he got back to his seat so his teacher let him come up by us. However he passed us and decided to sit in the front row of the church. He sat listening to Pastor go through his service and then when most of us had our heads bowed during prayer, Sam decided to sneak up on the altar and go behind the wall. I knew what was going to follow so I quickly snuck up on the altar and brought Sam back to his seat. My husband and I shared a brief smile knowing Sam was planning on finishing his performance and taking a bow. So….when we got home, we put him up on the fire place hearth, let him sing and sign his heart out and after each performance he took many bows each followed with a booming round of applause.
On Thanksgiving Day after a fantastic meal with my family, my parents and my brother…Sam performed for us again. I am so thankful that God entrusted me with this wonderful little boy that has touched the hearts of so many. I am thankful for good health, my husband, children, family, friends and the many blessings that fill my days. I am thankful that the words Sam sings with such enthusiasm are so very true…Jesus loves me this I know….Little ones to him belong, they are weak but he is strong. Thank you Lord for taking care of one of your little ones!!
Mom to Sam (8) with Down syndrome, Brain Injury, Apraxia, Dysphagia, Respiratory/Immune Issues and Bi-Lateral Conductive Hearing Loss or as I like to say “Yada, Yada,Yada”