Evan has been encouraging me to contribute to this blog my perspective as a mother. During this upside down time of our lives Evan has been coping through researching the illness and treatments and writing about it. As Zoe’s mom, I have been focusing on the caretaking aspects of things, like making sure Zoe is well fed, eating well for her, talking and playing with her and holding her as much as I can.

One of the worst aspects of this experience is knowing the invasive procedures that Zoe has faced. Before my daughter had her central line put in she went through numerous blood sticks in her body and feeling helpless to console her I sang to her while she cried. The blood draws, the spinal tap, the bone marrow biopsy, the operation to insert the central line as well as all the medication she has received in her body somehow Zoe tolerates and comes through the experiences. It is disheartening to realize that she could go through all of these procedures and there are no guarantees with this illness and that it is very serious and life-threatening.

Despite the challenges we face at this time we make sure to savor our moments together. Zoe sure smiles a lot for a baby who has been as ill as she has been and her smiles mean everything. Holding her is healing for both of us.

It is difficult to feel like I cannot be there as I want to for my older daughter, who definitely has had her upsets with this experience and who regularly asks me when I am coming home. It feels awful telling Maya goodbye and that I will see her tomorrow and I feel sad that I am not at home to help her through her bumpy nights.

We make our time together count. I took Maya to a birthday party yesterday and she spent time with one of her favorite friends. We sing to Simon and Garfunkel when we are driving to and from various places. We play on the hospital rooftop playground where a few days ago Maya had her first experience with Red Light Green Light and shrieked with laughter as she ran circles around the older kids playing the game.

Time with Evan is different and confined to brief stints in the hospital room. Our first priority is our children and so we understand that we will be spending less time together than we would want. We look forward to having more quality time together in the near future.

We have received a great deal of support from family and friends. This has been overwhelming and has helped us to process and endure this devastating experience. We are so grateful to have such kind and caring people in our lives