Part 2 - 65 Roses Club

So today, May 18th is also an anniversary for me and my family. It was the day that our family found out that we were now a part of the 65 Roses Club, and we walked away full of hope, and seeing God's hand on the next part of our journey.

That morning, we woke up very early, and with a new "drive" to get to our church's weekly prayer meeting, which just happens to be 7am, Tuesday mornings. I slipped off to a private area in the church to nurse Ella, and out of nowhere, a childhood Sunday school song came to mind, and I started to sing it to Ella.

12 men went to spy on Canaan,
10 were bad and 2 were good,
What did they see when they spied on Canaan?
10 were bad and 2 were good,
Some saw giants big and tall,
Some saw grapes in clusters fall,
Some saw God was in it all,
10 were bad and 2 were good.

I now have a new respect for those seemingly silly Sunday school songs I learned as a kid. It is so simple, but oh how that challenged me and gave me a sense of God's hand in my life at that very moment. I was facing my own "Canaan", and I had a choice that day about how I would see what God would be leading me into. I could choose to walk into that day's medical testing afraid, and weak, or I could be looking for the good things God was going to do on our behalf. I had to keep deciding, moment by moment to see it.

Our church, City Centre Church in Saskatoon, rallied around our family that morning and prayed for that day. We were still fairly new in the church, and were just beginning to feel really connected at this time. I have never before felt such love and support from the body of Christ.

We headed off to the hospital. Our soon-to-be-sister-in-law, a respiratory therapist, met us in the paediatric clinic. She just happened to be working that day, and having her there with us, was such a comfort. It was another respiratory therapist that she knew that performed the "gold standard" test to determine if Ella had CF or not. We also had Kirk and Angelle with us, my husband's dad and stepmom. There were amazing! They are hilarious, inquisitive, smart, caring and sensitive people. They also have many opinions completely opposite to my husband and I, including their personal religious beliefs. Just the same, we constaly talk and learn from each other. We also met the clinical coordinator for the CF Paediatric clinic in Saskatoon, Lorna. We quickly learned that she grew up as a close friend of my Dad's family. By the end of the day, we were thanking God for each individual that was in the room that day. They all were there to support and comfort us that day. They also would be used to confirm the vision of hope we would walk away with.

The test that Ella had was so simple and easy. She was given a cream to stimulate her sweat glands on her arm, and two little patches were put on her arm to harvest her sweat. She was then bundled up with extra blankets for 30 minutes. Pretty simple. We were told that we would have the results after lunch.

So with and hour or two to kill, we went for sushi of course! At the restaurant, we bumped into acolleague of Chris's, who knew what was happening that day, and offered us more support and encouragement. As we went to the parking lot, we ran into another person from my home town I hadn't seen in 10 years, and once again, I felt encouraged. Next, it was back to the hospital for the results.

All of the sample were in the clinic again, but this time the CF clinic director, paediatrician Dr. B joined us, and gave us the results. The test had come back positive for Cystic Fibrosis. I won't say I didn't tear up a little, but it was like once again a switch was turned, and I said, "OK, now what?" Dr. B was absolutely amazing at that moment. She told us of the changes that have been happening within CF research and treatments, and how she believed that Ella would live a long and healthy life. She talked about how the newborn screening process had only been in effect for 1.5 years, and how that would have such a positive effect on Ella's life. Up until then, unless there was a problem with the bowels at birth, ot would likely take quite a long time, or a child becoming very ill and likely having permanent lung damage already, before they would suspect CF was a factor. She also spoke about how this screening was something that only 3 provinces were doing at that time. Chris and I looked at each other and were thinking the same thing. A year before, we had been trying so hard to move to Vancouver Island, where the CF screening had not yet begun. We were so thankful that the prayers we had been praying about moving to BC, a year before, had not been answered the way we had been hoping. The doctor then informed us that we would indeed have to save for her college education because Ella would live to see those years and many more.

We were now part of the 65 Roses Club. Once upon a time, a little kid with CF, thought that all the adults around him were saying 65 Roses, instead of Cystic Fibrosis. That has actually stuck with the community all this time. Since it's usually hard for a little kid to say, they're taught to say 65 Roses. It sounds the same and heck, it's a whole lot prettier!

Here are a few other things I learned about CF that day:
-Approximately 1 in 3,600 babies are a CF patient.
-1 in 25 people are a carrier (like Chris and I)
-The median age of a person with CF in Canada is 46 years old.
-It is the most common genetic defect.It affects every cell in the body. The defect is in the chloride channel of each cell. It causes salt to not move in and out of the cell, which then causes problems with water moving in and out as well. The result is secrections and fluids in the body tend to be thicker, stickier, and saltier, and this complicates things most commonly in the lungs and digestive tract.
-This is the tough one...people with CF need to not be in close contact with each other, minimum 3 feet distance apart, unless they are a direct sibling or a family member. Unlike many conditions where kids can get together and support one another closely when they are facing the same challenges, kids with CF have to remain at a distance due to the super bugs and infections they can pass to one another.

We then spoke with the CF dietician for a while. Again, she gave us such good news. She said that Ella would live to be an old lady. She told us that we would definitely be seeing bigger bills for groceries, because kids with CF can eat and eat and eat. In fact, they need to because their bodies often struggle to put on weight. And Ella can eat!!!

We then met her physiotherapist. It turned out that she was the mom of someone I went to school with as a kid. Again, just that little touch of familiarity brought even more comfort.

Then we met her social worker. She talked about how she was there to help us out as a family in more of a counselling capacity. She also talked about all the programs and groups available to us, and explained how each of the professionals we were meeting today would be at each of her monthly appointments. They have adopted a real team approach, and instead of me having to set up 4 or 5 appointments each month, I would come to 1 appointment, be in one room, and they would take turns coming to visit Ella. Amazing!

So after leaving the appointment, we had no sooner walked out of the clinic area, into the lobby by the cafeteria, and I ran into someone I knew. She was a former instructor from my dental hygiene school. Naturally, the discussion of "what brings you here?" came about. When it was my turn to explain, I was absoloutely shocked by what came out of my mouth! I had come out of Ella's appointment with such a vision of hope and peace, that my explanation was so upbeat and positive. My instructor looked at me, quite surprised by my positivity, given the nature of what I was sharing. Honestly, I didn't feel like I was trying to be positive, I just was.

So once we went home and started talking with family about what had happened at the appointments I started asking my husband's dad and stepmom how they felt about the whole appointment. They said the same thing; they were surprised by how positive and full of hope they were walking out of the appointment. That meant a lot to me. Sometimes I fear that as a Christian I put on rose coloured glasses or have my head in the sand about what is going on when I can't explain it or not everything seems logical. I really feel that in those moments, I need to check myself and check with others to make sure I'm really seeing things for what they are. When I heard his parents say this, it reassured me. They don't share our faith, in fact, one of them doesn't even believe in God. Hearing them say that they experienced the same thing - with quite different eyes looking at the same situation - really brought peace.

It makes me think about the New Testament. So many people witnessed Jesus' ministry. But to testify to it, 4 different witness' stories were written. Yes, they were Christ's followers, but so many others witnessed his works. Somehow, even the unbelievers testified, in my opinion, to what happened.

Since that day, there have been so many ways that God has moved on our family's behalf, and I plan to share more and more of them. I feel that's my responsibility with all of this. I won't pretend that I don't struggle with the situations I'm in, the emotions that I have, or the thoughts I choose whether or not to entertain mentally, but there is something so powerful about testimony. Almost daily, I spend 30 minutes watching Joyce Meyer on TV. She's my daily kick-in-the-pants. I need it. I am empowered daily by hearing her personal testimony, and in it, how Jesus has transformed her. It also takes away every excuse I have to feel sorry for myself and throw a pity party. But there are other testimonies that I hear daily, through blogs, or facebook, or just chitchatting on the phone, that leave me feeling empowered to face my daily challenges too. Sometimes, those are so much more relevant, and timely. It's easy to put people like Joyce Meyer up on a pedestal, and say ,"yeah, well she's a super star Christian." That's my own doing, not her, because she is very self aware and humble. But I know how much it means to see and hear the personal victories in other people's lives! It is inspiring. It gives me strength. So that's why I share. I need to tell the good things that God has done in my life!

Revelation 12:11

They triumphed over him
by the blood of the Lamb
and by the word of their testimony;
they did not love their lives so much
as to shrink from death.