I still remember day two of Evie's life. Day one had been filled with joyful phone calls to family and friends, (no Facebook at that time), sleep-deprived hours of trying to learn to nurse, and watching Tommy Boy. Day two was filled with visitors, and gifts and more joyful phone calls. On the night of that second day, I recall one specific moment above all others. I was laying on my right side in the hospital bed. Evie was cradled next to me, swaddled in a pink receiving blanket, with a knit baby cap on her head. Her eyes were closed, and the room was bathed in the soft gold light of the Christmas lights hanging above my bed. (The midwives called them "Birthing Lights.") Evie had a baby smell that I can only describe as pepper. Maybe that's why I go looking for fragrances now that include pepper in them. I loved the way she smelled. I laid there, looking at her perfectly serene face. I felt as though God was telling me never to forget that moment. I recall telling myself to take a mental picture of that moment, so I did. The next day, day three, was the day we were told that something was wrong with Evie's eyes; and that began our journey toward the diagnosis of WAGR/11p Deletion Syndrome. So, in a sense, that mental picture was the last moment that I recall having a "happy homecoming" with our newborn baby.
I still remember the ride home from hospital and wondering how or WHAT we were going to tell people. Neither Jeff nor I understood all that we had been told. It was confusing, frightening, and felt like a nightmare. When we walked in the house our phone rang and it was my friend Kathryn. This was a total "God-incidence" because Kathryn was a kidney transplant survivor, and part of what I recalled hearing at the hospital was that something would be wrong with Evie's kidneys. I broke down in tears upon hearing her voice. "Hey, Sugar" she had said in her sweet southern accent, "you made it home." I spilled out to her my fears and frustrations and gave her a whole load of something she wasn't expecting. Kathryn became a voice of reason, faith, and acceptance for me as we worked through everything with Evie. I miss her so much because she's home now with her Heavenly Father. I know she's with us in spirit though.
I still remember the day we got Evie's WAGR diagnosis. Her blood had been drawn when she was three days old, but it had to be sent to Baylor University in Texas to run the actual test that would confirm WAGR (FISH analysis, it's called). When Evie was about four weeks old, we were at the clinic for her well-check. Dr. L said he had gotten the results and read us the letter confirming that she had a deletion of the 11p chromosome, including the PAX 6 and WT 1 gene, thus confirming WAGR. We felt defeated. Dr. L handed us some information he had found on the internet for a website www.wagr.org . I didn't visit the website, nor did I join the support group until a couple of months later. When I finally did though, our lives became rich with our WAGR family, and we had more support, knowledge, and creative solutions than I ever thought possible.
I still remember being in the hospital on a Friday morning in September 2005. Evie had been diagnosed with Wilms Tumor, and we were waiting for them to come and take her to remove her kidney. I remember Jeff being dressed in a gown and cap so he could go with Evie and the doctors until she fell asleep. I remember us walking with the large metal crib down the hall and Dr. K stopping us. He said, "Hold on, let's go back to the room." That's when he told us that he (our urologist) and Dr. P (our oncologist) were not in agreement on how to proceed. Dr. K wanted to remove the kidney. Dr. P wanted to contact Dr. D, who had seen several other WAGR patients with Wilms. Dr. D was up in Vancouver at a Children's Oncology Group meeting, however, so she wouldn't be able to consult with him until next week. We were free to go home for the weekend. I imagined all the legions of angels, as Evie was being lifted up in prayer, I saw them all coming together and organizing the timing of the conference, her diagnosis, and the minds of the doctors~their willingness to listen and learn. God was with us.
I still remember chemo appointments, and the joy Evie gave all the staff with each visit. I remember late night phone calls to the on-call doctors because we couldn't figure out if we could give Evie more morphine or not to help ease her pain. I still remember the Baby Mozart DVD that we would watch over and over again in the hospital, and now I can't listen to Mozart anymore because it takes me back to those days in an instant.
I remember all these scary times, but I also remember the good.
I still remember Evie creating her own sign for "play music"...she made the hand sign for "play" but then swept her hand over her opposite arm as you do when signing music. That's when I knew for sure that, while it may come later than other kids, Evie certainly would talk some day.
I still remember Evie walking into our room for the first time in the middle of the night. We had just started her "brushing and compression therapy" with her OT. She had never walked to our room before in the middle of the night, she would wake up and cry in her bed until we came to her.
I still remember the first time I realized that even low vision wouldn't stop Evie. We had driven through the roundabout in town. Despite being at a lower level than the windows and being legally blind, Evie new exactly when we drove by the exit one would take to get to Culver's. She waved and said, "Bye, Culver's."
|On the Left, Me at 18 months; Right, Evie at 24 months|
I still remember the first time I saw myself in Evie. We were in the car on the way to Minnesota and she started whining. I turned around to look at her and she had a pouty look on her face. It was me. It was all me. I had never seen and "expression" on her face before, and that must have been because of the chemo side-effects. But they were wearing off, and now I was able to really SEE Evie and her true personality. Go figure, when my daughter looks the most like me is when she's pouting.
I still remember all this and more...and with God's good grace, there many memories still to come. I know the road won't always be easy; but in all these memories, the good and the bad, God was there, and he has so much more for us to do! With that in mind, I better wrap up this walk down memory lane and start making more memories today.