Psalm 102:25-27

“Of old you laid the foundation of the earth, and the heavens are the work of your hands. They will perish, but you will remain; they will all wear out like a garment. You will change them like a robe, and they will pass away, but you are the same, and your years have no end.”

Today marks 56 days since the day I dropped off Leslee and Ela at CHOP. This isn’t her first long-term hospital stay, of course, yet this stay has been quite different than the others.

For example, there is the fact that she isn’t recovering from a recent surgery like when she was recovering from the Norwood or Glenn procedure. Those were hard days. Much stress, many tears, nagging questions in the back of your mind: “is she going to make it?” “Will the Lord sustain her life or will He take her?” It is quite ironic when you consider the fact that we are praying for a surgery now. A life threatening surgery that could put us in a similar position of tension and grief…yet, it is a surgery that needs to take place, since apart from it, Ela’s body would slowly shut down from oxygen depravation.

Something else that is quite different is the fact that our family is older. Ela is not the baby of the house anymore. We got Noah now, who is 15 months old. Josiah is a big boy now, he is 5 and going to Kindergarten. Ela is 4 and quite different than the girl we cared for a couple of years ago.

Leslee and I were discussing the fact that there were aspects of former long-term stays that were easier to navigate. The fact that Ela was less aware, unable to walk, limited in her communication, etc…made it easier to leave her in the care of nurses when we needed to leave the hospital. However, she has developed a lot physically and emotionally over the last couple of years so it is much harder to appropriately care for some of her current needs and wants. For example: her desire to be more physically active or her desire to be home with everyone else.

This particular desire to be home is specially hard to address right now. Leslee is home for a few days so there is a mixture of delight and frustration and guilt. I think to myself: “My partner and companion is home! This is great!” I say to my sons: “Boys, mommy’s back for a few days! Hooray!” There is joy and excitement…yet, there is also the awful that comes from video calling Ela and knowing that the sadness you see in her little face is a manifestation of the desperate longing she has for home. As a parent, you could bring her home. Yet this would come at the great cost of, potentially, endangering her physical well-being: chances of getting a heart, immediate access to help in the case of an emergency, etc.

One of the few things that brings stability to our home and comfort to this season of life is the fact that God doesn’t change. Right now, God demands flexibility and sometimes to a degree that is a bit disorienting. Yet, in the midst of the changes and lack of consistent structure, God remains a constant thread in our lives. We prayed to God when Ela was home…and we pray to God now while Ela is away from home. We taught the kids then that sharing and kindness pleases God…we teach them now that sharing and kindness pleases God. We thanked Jesus for our food at home and we thank him for the food at the hospital. These are constants…truths that don’t change…realities that surpass any location and any situation and that bring stability to an unstable home.

We ask that you continue to pray for us. Pray for wisdom for parenting in an unstable season of life. Pray for wisdom in marriage in an unstable season of life. A more specific request would be for Leslee’s arm. She has endured much pain for several months and it has become a task to try to get doctor’s appointments for her when she’s home for a limited amount of time. We thank you again for all your support and love.