REMEMBERING SIX YEARS AGO THIS WEEK...

This is a long post, friends. Prepare yourself. But it's been on my heart all day today and I need to let it fly off my fingertips and onto the screen in front of me. I need to post it to feel as if it is serving a purpose...whatever that purpose might be. Thanks for allowing my heart to speak and thanks for letting yours listen...

Lots happened six years ago this week. Every year since then my head sort of spins around all the memories...at least what I can remember since I was in a sort of "fog" through most of it. Here's what plays out in my heart this time of year...

On October 3, 2003, I was happily pregnant and we had just moved from St. Michael, Minnesota, back to my hometown of Delano, Minnesota. Not a huge move distance wise, but a move, none-the-less and all while pregnant. But early that fall morning, I awoke to broken membranes and the threat of our baby coming eight and a half weeks early. Once in the hospital, that is where I remained. There was no going home for me because my doctor knew all-to-well that "bed rest" at home would not be. I was instead admitted to the care of the hospital and scheduled to be induced on October 20...six weeks earlier than my due date of December 1.

Nerves and excitement ran a race in my mind and in my heart about our early arrival and on October 20, at 3:19 PM, our daughter, Faith Marie Johnson was born weighing in at 5 pounds 6 ounces. She was tiny and beautiful and oh so perfect! A little girl to add to our family. Her big brother was so very excited that our new baby was finally here and that he was now a big brother to a precious baby sister. My parents were with Parker at our house when we called to tell him that he had a sister. My mom said he just kept walking around the kitchen saying, "I have a sister. I have a sister. I can't believe I have a sister." We promised him that he would be the very first one other than us and the doctors and nurses to find out "what he got." We also promised him that no one else would meet Faith before he did. My parents brought him to the hospital that night in his jammies and he met his new little sister. It was a beautiful moment to see the two of them together for the very first time.

On October 22, two days after Faith was born and six years ago today, I was scheduled to leave the hospital. My heart was torn. I'd be leaving my baby girl in the hospital, where she needed to be until she was able to come home, and that was very sad for my heart. But I was also going home to our son, who I had left behind for several weeks preparing our new little girl for her arrival into this great big world!

That afternoon of October 22, I was in the NICU with Faith, rocking, nursing, admiring and getting to know my new little girl when the doctor came in to check Faith's eyes. It was part of the plan as both Scott and Parker had been diagnosed with retinal cancer...Scott as a toddler and Parker at four months of age, as well as Scott's two other diagnosis as an adult in the early part of our marriage. It's funny that I wasn't even worried about the doctor coming in to check Faith's eyes. I just really didn't think much of it because I told myself it wasn't going to happen again.

The doctor told me to wait in the waiting room just next door and that he'd find me when he was done. It seemed like only a few minutes before he came into the waiting room along with one of the nurses. The look on his face told me everything I needed to know. His words confirmed it. My baby girl had cancer. It didn't take much looking into her eyes to see it. Her tumors were large. They were close to the optic nerve. These tumors would not be quickly lasered off like when her brother was diagnosed.

I remember standing in that waiting room and literally dropping to my knees. I cried and I sobbed and I screamed, "NO! Not again! This cannot be happening again! Not to my baby girl!" The nurse did everything she could to sooth me and comfort me, to offer words of support and encouragement. I needed to call Scott, who was at home with Parker and was to leave shortly to come and pick me up from the hospital. The phone shook in my hands as I called him to tell him that our sweet little girl had cancer and that he needed to get to the hospital as quickly as he could. He spoke barely a word before we hung up. It seemed like it took him hours to get to the hospital. In the meantime, I sat in the rocking chair, holding my beautiful new little girl, and cried. I don't think the tears stopped for days...maybe even weeks...

The doctors and nurses encouraged me to go home that night. To get some "rest." I did. I didn't want to, but I did. I went home to Parker waiting for me and I didn't want to let him go. I don't think I really slept that night at all. The next day we arrived at the hospital early in the morning for Faith to be transferred from North Memorial Hospital to the University of Minnesota - Fairview Riverside. That's were the retinal cancer specialists were, as well as the oncologists. We watched as the medics bundled up our precious little girl and put her in the back of the ambulance. They let me ride, too, but I had to be in the front seat...not with her in the back. The ride took forever, with Scott following behind.

We arrived at Fairview and once Faith was settled in, we started meeting her team of doctors. I didn't like them. Not that they weren't nice people, I just really didn't like them. In fact, I hated them. Every single one of them. But, they were developing a "plan" for Faith, and that plan came from input received from hospitals across the country...St. Jude's, Baylor, Johns Hopkins, just to name a few. The plan was for chemotherapy. How do you administer chemo to a six-week premature baby weighing a little over five pounds?

That night we sat with our clergy at the time and he listened as we spoke. He was new to our church so he didn't know much about us or us about him. But he was nice. I liked him. Not like how I felt about the doctors. He also didn't hold it against me when I told him that I was angry....no...FURIOUS...at God. I hated Him for what was happening. HE could have prevented this cancer and I was so angry that He hadn't. Our minister said, "You know what, Jeanine? After meeting Faith and after sitting here with you, listening to your story and the story of cancer that is in your family, I'm angry with God, too." I remember being shocked at his response. Then he said, "But who can handle that anger better than God? It's okay...HE understands."

The next morning our pastor returned to the hospital to baptize Faith. We wanted it done before her day got started. She was now four days old and this day was going to be the first of many difficult ones for her. She was going to be put under anesthesia for the majority of the day. First to have a complete eye exam under anesthesia. The tumors would be treated with lasers...lots and lots of laser. After that, Faith would go for a MRI of her brain. It needed to be determined if the cancer had spread to the brain, too...which thankfully it did not. She was also getting a central IV line put in. This was permanent IV that came out sort of up under the collar bone area that would be easily accessed for IVs, instead of her having to be poked every time she needed IVs, which was a lot.

That day ended in a way Scott and I could never have imagined. Faith had just gotten out of recovery and was back in her little layette in the NICU. It was early evening...probably around 7 PM. Everyone that had been there with us throughout the day, including Parker, had gone home. Around 8 PM Scott and I found ourselves sitting in the family waiting room with two oncologist who explained Faith's chemotherapy plan to us. When they were done, they handed us a consent form for one of us to sign. Scott and I just sat there...looking at it...not wanting to sign it but knowing that if we didn't the results were dire. How could we sign this form allowing them to pump poison into our baby? How could we not sign it? The pen felt heavy in my hand and my hand, holding the pen could not make it to the paper. Scott is the one who found the strength to sign that piece of paper. Then around 9 PM that night, we watched and we cried as the chemo made it's way through our precious baby girl.

That night was the first of eleven months of chemo. This coming Saturday, that night was six years ago. A lot has happened in six years. Our baby girl...the one that doctors feared would be challenged developmentally, challenged physically, possibly blind...well...that little girl has THRIVED! Right now, as I type...our little Faith is roller blading in our garage, because it's too chilly outside, but by-golly, she wants to roller blade! She's in Kindergarten and she's NOT challenged developmentally! Her physical challenge is that she does not have vision in her left eye...but she is NOT completely blind. She rides bike, she scooters, she runs, she plays soccer, she climbs, she loves to color, she plays on the computer...she is FAITH!

Faith's story contains much more between those first few days and today. But this post has already been long enough without me adding more. Know, however, that her story continues...and every year at this time, I will reflect back to those first few days of her life and my heart will hurt for what was...and it will leap for joy at what came to be. Each year will add another year of triumph for Faith and the unique, amazing, beautiful and perfect person she was, is and will continue to be.

I'm not mad at God any more. I don't think that honestly I ever really was. I just needed to be mad at someone...and He seemed the best one to handle it. He has held Faith close to Him since before she arrived. I know that when we had to be away from her, He was there holding her, rocking her, soothing her and loving her. He has held her hand through her entire journey. And with His other hand, he has held mine.

Peace.
Jeanine