Audrey has been walking around all morning carrying her Minnie Mouse watch and asking me to either put it on her or help her put it on herself. She is very proud of her watch. She shows it off and talks to it as if it were an apple watch and Siri might respond. She’s not feeling well today, so instead of our usual park time we’ve had movie morning snuggles and lots of watch talking.
One of the things the child life therapist told us during our pregnancy was to make lots of memories with George and Audrey. Talk to him, let her talk to him, sing to him, write things down, take lots of pictures. All the same sort of things we would have done naturally if our baby hadn’t been sick and we weren’t occupied with worry and stress. I managed to do many of the things they suggested. Audrey and I read book after book about becoming a big sister. Her and I talked to George all the time. I would explain to her that he was sick and that made mama and daddy worry. I would tell her that even though his sickness made us sad sometimes, that we still very much loved her. Her and I would even pray for George in really simple words. Sometimes she would repeat what I was saying, sometimes she wouldn’t, but I knew that she loved him so very much.
As part of the “memory making” process of our pregnancy, the palliative care team set us up with a music therapist. Honestly, I thought it was the craziest thing on the planet, but Adam and I very skeptically went to the appointment. I didn’t really know what to expect and I was certain it wasn’t going to be helpful. We arrived at the appointment and one of the child life therapists met us to play with Audrey while we talked with music therapy. It was really an incredible hour and a half. We sat down in their studio space, called Sophie’s Place, and just started pouring our hearts out. Amanda, the music therapist, played the guitar while we talked. She asked enough questions to get us talking but not enough that we felt we were being interrogated. When we left, I didn’t know what was going to come out of that 90 minutes, but I was thankful to have been able to tell our son’s story to one more person.
Several weeks later we got a call that our lullaby was ready and we just needed to come in and approve it before they recorded it and gave it to us. I didn’t drag Adam to that appointment but Audrey and I gathered ourselves up and went back to Sophie’s Place. They greeted us with little toddler sized instruments and sang a few songs with Audrey as she played her shakers and the ukulele; she wanted to play the big guitar and Amanda graciously let her strum along. It was sweet and it was life giving. They handed me a copy of the lyrics and then Amanda and her intern began singing along with the acoustic guitar while Audrey twirled and tried to sing along.
This miracle of ours - a fighter from the start - You’ve never given up
We have come so far - to be right where we are - Down this long, winding road
And we’re thankful for - Feeling baby kicks - and watching sister’s love grow
As time goes on and on - and we hope despite the odds…
George Mason
Know that we’ll love you through it all
We’re praying each day, For a miracle
Step by step this dance with you
Has been a gift we share with you
George Mason, we love you
I didn’t really hear the rest of the song. I was crying. They were tears of joy, awe, sadness. These two women, who had spent 90 minutes with us, had captured all of the raw emotion and had written out our son’s story into a beautifully arranged song. After they finished singing I almost couldn’t tell them how beautiful that “lullaby” was. They got out their iPad and recorded Audrey talking to me and her brother. They said they would send us the finished recording in a few days. We left again with the same “not sure what is going to come of this” as we did the first time, but so very thankful for those women who had listened to well.
You know your sister’s voice - and she can feel your love - as you dance along with her
Though we have so much to learn - about who you are - Our love forever grows
And we’re thankful for - all the little things - and we count our blessings - each and every day - and we hope despite the odds…
So many of those words still hold true. He was taken from us much too quickly for us to have really known much more about him than we did sitting in that studio. I wasn’t sure what would come of this crazy thing called Music Therapy but I’m completely blown away by how special this song is and how much I will cherish the memories made from having it and the process of making it. We played his song to him as we said our see you in heaven. I don’t know how often I will listen to the lullaby, but I can certainly say it was life giving and a wonderful memory to have made with my two children.
Audrey’s watch was a gift to her from her brother. We didn’t get the chance to do all of the memory making we thought (pen pal exchange of letters/pictures/stories), but the first step was a gift to her from her brother. Watching her play with it brings me to tears but also fills my heart with so much joy. I know she won’t remember most of this when she’s older but there are seeds being planted in her memory for when she’s able to understand and start asking questions. Maybe one day she too will be blown away by how special her brother’s lullaby is and how much a part of his story she is and was. My mom used to call things like this a kiss from God. I believe with all my heart that is absolutely what this is.
May the God of hope fill you with all joy and peace in believing,
so that by the power of the Hoy Spirit you may abound in hope. -Romans 15:13