Lullabies are normally a wonderful part of having a baby or even young children. There are a multitude of beautiful songs to sing your child, but sometimes you never consider the words until you are faced with MPS or another challenging health situation.
Before having children, I always wanted to sing Billy Joel’s “Goodnight My Angel” to my kids. I have done so since they were little and they even know most of the words. But singing, “Goodnight my angel now it’s time to dream, and dream how wonderful your life will be…” grips your heart differently when your child has MPS.
I’ve also always sung “You Are My Sunshine” to Case and it was one of the first songs I caught him on video singing. But when I started to use it as the song I sung to him as four people were holding him down, screaming, to hold an anesthesia mask on him every month, the words “Please don’t take my sunshine away” choked me up every time since I got to them just as he was drifting off and his eyes rolled back. Please, please don’t take my sunshine away.
Lullabies are different now. Maybe even more special, but very different.
I hope that you will listen and enjoy one of my favorite lullabies – Joseph’s Lullaby by MercyMe.
While this song is speaking of Jesus and I wouldn’t compare the situations, there is a lyric that always put into words a heartache I had. It says, “Does the father guard your heart for now, so you can sleep tonight?” I always hoped that God would guard Case’s heart so he would never know the extreme challenges he faces, the heartache we as parents feel, and the lack of peace this disease sometimes brings us. I can remember listening to this song several years ago, sobbing, feeling that kinship of protection for my son, albeit a son without such weight on his shoulders. I hope this song speaks to you as well.
Like many MPS families, life has allowed little time for Christmas cards. But we very much wanted everyone to know how much we appreciate their friendship and support, and how we hope and pray for everyone to have a wonderful Christmas filled with family, joy, and love. From our family … to yours ….
(If you do not see the video, you can view it directly on YouTube here.)
And she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no room for them in the inn.
And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, “Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.”
Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
“Glory to God in the highest, and on earth peace to men on whom his favor rests.”