We are doing our best to soak up every last drop of our summer. It has looked different for us this year than it has in past years. Last summer Sophie Kate was oxygen independent and this summer she is oxygen dependent. It has changed the way we do everything. It has changed the way she sleeps, it has changed the ease with which we get out and do things and it has changed the way we vacation.
I have joked before that our girl does not travel lightly. Well, we have taken that to whole new level. It doesn't matter where we are or what we are doing, there are still meds to give, breathing treatments to administer, feedings to give and frequent suctioning to do to keep her airway clear. Her oxygen and suction machine have become our constant companions, they go wherever she goes.
Our days with this girl are measured in moments and experiences that look drastically different from what I had imagined over 6 years ago. Last week we hung our legs over the side of a boat dock and let our feet dangle in the cool lake water, while being splashed by brothers and cousins as they jumped in around us. It wasn't easy getting her out there but it was worth it.
Sophie Kate went to her first wedding this summer. Macie has been in our life since Sophie Kate was born. Just seven months ago she sat with me at Sophie Kate's bedside on the second worst day of our lives until my husband could get to the hospital. As I sat next to Chad and Sophie Kate at her wedding just over a week ago I could not help but be overcome with gratitude. I am so happy that our girl could be there smiling and feeling good on that day. Macie's mother said to us, "Thank you for coming. I know it was not easy for y'all." No, it wasn't easy and I appreciated those words...but it was so worth it. Sophie Kate was having such a good day and she was all smiles...it was worth it. She doesn't get many invitations and I knew that even though all of our names were on the invitation that invite was her's and her's alone. It was worth it to get her there.
What do we do when our will does not line up with God's will for our lives? That question was brought up recently, it's a really good question. I am still figuring that one out. Are we going to let bitterness, anger, sadness and longing for something else consume us or are we going to choose love and joy and a heart of thankfulness? It's a different kind of life we live with this girl of ours. Hurt and happy coexist here, but so does deep rich relationship and conversation and understanding and acceptance and love. There is hope and healing in the name of Jesus.