An excerpt

I haven't posted in a while because I have finally gotten some momentum going on my book. Richard has been encouraging me for a long time to turn my blog into a book. To get our story down on paper in a tangible way would be a treasure for our family, especially for Avery & Lily. I've struggled for a bit getting it started because eventhough much of it is right here in this blog I've had to find a way to organize everything and determine my overall message for the book. Thanks to my wonderful husband and a dear friend with some editing experience I'm finally getting somewhere.

So I thought I'd post an excerpt for your reading pleasure.


.......I thank God Zoe’s death was sudden. Unlike some of the bereaved moms I’ve met who had to sit idly by and watch their babies’ lives slip slowly and painfully away, our decision to let Zoe go was made for us. She made it clear it was time to let go. When Zoe was in the NICU we were in a state of limbo for many weeks. She was alive, thanks to the high frequency ventilator, but she was not improving. Nor was she taking a turn for the worse. I sat by her bedside for those seven weeks wondering if I was supposed to be hopeful that she would begin to improve or if I was supposed to be planning a funeral. I refused to send out birth announcements until I knew for sure how many of my children would be coming home with us. I am thankful we did not have to go through a period of time like that again and my heart grieves for the parents who do. One mother I’ve met along this grief journey had a baby born with a very rare form of leukemia, called JMML. This baby seemed healthy on the outside, but his bloodwork told a completely different story. Baby Bobby, as he became known to his beloved doctors and nurses on the pediatric oncology floor, would be one of the youngest children to receive a bone marrow transplant at the age of three months. He, like Zoe, had a suppressed immune system and succumbed to a secondary infection just two months after his seemingly successful transplant. Baby Bobby lay in a crib surrounded by a myriad of lifesaving tubes and wires as his parents looked on, helplessly. All his parents could see was a much loved baby boy, their son, who smiled and even laughed just weeks before. Their little boy who did not seem sick until the very end. They did not see all the tubes and wires, what they saw was the joining of their love as a couple to form this beautifully perfect baby.

When you’ve been witness to your child fight ferociously against all odds to live, when you have watched them survive horrendous surgeries, and when you have spent happy, life-filled moments with them amidst the trauma and crisis that exists when caring for a medically fragile infant, the thought that they could turn the corner again is ever present in your mind; even if the other thought that you push to the back corner is that you have used up all your “free passes” and the inevitable is now staring you in the face. Being the person to make the decision to stop all possibility of experiencing another miracle is a position no parent should ever have to be placed in. And yet, thousands and thousands of parents have been and will be in the future. Baby Bobby’s mother told me that it was months after his death, when she came across some never before seen photos of his last weeks, that she knew instantly they had made the right decision. When she looked at the photographs, she saw the tubes and the wires this time. She saw his bloated, jaundiced body. She saw the reality of his illness and knew that prolonging his life a second more than they did would have done more harm than good for her precious son. This singular decision, to end the suffering of your child, is the greatest sacrifice of our own desires and is by far the most difficult and most heart wrenching decision to make. To pray the prayer that asks God to take your child if it is His will, to open that door of possibility does not make God take your child; rather, it is an act of sheer bravery and faith to lay your child at His feet. And to tell your baby you love her so much you are willing to let her go back to Heaven to fly with the angels and bask in the ultimate joy of God’s supreme presence is an act of love few can truly understand at it’s core.

For a moment on Zoe’s last morning I even prayed that prayer. I told Zoe in my silent prayer that it was okay if she needed to go. I could not say this out loud because even if I was saying it quietly in my mind, to say it out loud would make it all too real. I even thought to myself, am I betraying Zoe by not praying for yet another miracle or believing in her strength enough that she could pull through this? How can I call myself a mother if I am willing to let my child die? Which is worse, to expect another miracle thereby subjecting your dying child to endless tests, procedures, or surgeries? Or is it to not want their suffering to last a second longer? I could not answer those questions for myself on that day and as a result I carried an enormous amount of guilt with me everywhere I went because of that very prayer. After months of expert therapy and spiritual guidance from a truly gifted Christian counselor I would come to realize that this was a demonstration of the depth of my pure and honest love for Zoe. I did not want her die. But I could not stand by and watch her suffer any longer. I looked beyond my own selfish yearning to hold on to my daughter and said to her “It’s ok my sweet baby girl. Don’t hold on just for me. You can go”. That was me, giving not only my daughter to God, but my own life as well; allowing Him to overtake me, surrounding us with ethereal angels to take Zoe’s little hand and guide her gently to her new home in Heaven. This realization did not settle firmly in my soul for many months. It is a realization that only in retrospect I can now begin to understand and accept and believe in.

While I can never say thank you to God for taking her, I will always wish she was here with me, I can and do say thank you to Him for taking her quickly. For sparing me and Richard the pain of watching her wilt and waste away day by day, the way Baby Bobby’s parents had to do. I believe God prepared my heart for the ultimate moment in which we hurriedly said “We want to hold her”. It was 2am that fateful morning that the doctors asked us to leave her room so they could intubate her. Zoe’s fourteen week struggle to get off the ventilator in the NICU was not that long ago. Neither Richard nor I wanted to see her struggle like that again, afraid that her body simply could not tolerate another battle like that.

I was sitting in the not-so-comfortable, vinyl, pull-out chair across from Zoe’s crib, trying to breathe deeply and relax my mind amid the orange glow of the dim overhead lights and monitors. The pulse ox alarm kept ringing and ringing and ringing, noting that she needed more support. My husband was at Zoe’s side, holding her hand, praying hard for her oxygen saturation to improve when the nurse walked slowly in. She paused just inside the doorway, looked up at the monitor for a moment then shifted her gaze to my husband who knew what her next words would be before she even spoke them. Zoe needed the ventilator again. Fear and anxiety trickled up my spine carrying a cold tingling that made the hairs on my arms stand on end. No. Please, not again. Please, please not again I said to myself as hot tears filled my eyes.

I got up from my chair and walked over to Zoe. I leaned over the bedrail to whisper words of love and encouragement into her ear. She was trying to sleep. After so much commotion of moving from the ER to the PICU, changing breathing apparatus, getting blood drawn, and inserting IVs, she seemed tired and was starting to drift off. I could barely see her eyes because most of her face and head were covered by the Bi-Pap mask, another form of intense oxygen support. As I spoke, a wavy lock of my dark chocolate brown hair, the same color of hair Zoe had, fell from behind my ear. Zoe’s chubby little hand reached up and grabbed that lock of hair and twirled it ever so slowly between her fingers as she always did when I held her. I then took her hand in mine. I could not pick her up and hug her as I longed to do because she was connected to so many machines. So I simply held her hand in mine. Before I could offer a squeeze of reassurance, Zoe squeezed my hand. It was not a squeeze out of fear or pain or desperation that said “Help me Mom, I need you, I’m scared. Don’t leave me.” Rather, it was a squeeze that said “It’s ok Momma. I’m going to be ok. Don’t worry.” My brave, warrior princess was reassuring me! The moment struck me instantly and has stayed with me ever since. That was the last time I ever saw Zoe’s clear green eyes. When we were called back in three hours later she was fully sedated, never to awaken again.