The first phone call came when I was home with a napping Maelee waiting for Frank to get home from work. The man on the phone was Maelee’s then pediatrician. He asked me if I was sitting down, and then told me that he received results from some tests and that she had Cystic Fibrosis. I didn’t know what it was or meant but I was immediately panicked. I went to her bedroom and checked her crib to see if something was visibly different from when I laid her down for her nap. Then I called Frank as he was headed home on the 101 freeway and told him what the doctor said. He immediately began asking me questions, none of which I knew the answers to. Then when he got home he joined me in my hunt for answers on the internet.
The second phone call came as I was attempting to get an obstinate toddler (Maelee) into the car to run an errand. This time it was the genetic counselor that worked with us on our amniocentesis. She did not make any small talk, which I was grateful for as I recognized the number and my heart was already in my throat, and she quickly told me that the amnio had revealed that our baby boy was a carrier of Cystic Fibrosis but had only one copy of the mutation and did not have the disease. I remember feeling like I should have cried or something but I was only happy and relieved and cheerfully made the call to Frank with the news.
The third phone call came as I was attempting to get a hyper 4 year old and a 2 year old out of the house to meet friends at a pool. The house had to be immaculate before we left because we were attempting to sell it and a realtor was going to show it any minute so I was in a hurry to get the house ready and go. Right as things were looking clean and put together enough so we could leave, the kids accidentally pulled a curtain rod out of the wall wrecking my ready house and my mood. The call was from the same genetic counselor who again thankfully skipped the small talk and told me that the amnio had revealed that this baby boy did have 2 copies of the DF508 mutation and did have Cystic Fibrosis. I would have chosen to skip the pool date, drag my pregnant self into my bed and start a movie for the kids, but they were so excited to go, and I didn’t think a sobbing pregnant woman curled up in a bedroom would be a big selling point for the realtor on the way. So we left the house after I screwed the curtain rod back into the wall, and called Frank on the way to the pool.
The fourth phone call came when I was walking through Target with all three kids shopping for their school Valentines. The person on the phone was my new OBGYN. I was taken off guard because it was so soon for the results to be back, it seemed like the other amnio results took much longer. He kindly told me that this baby had CF. I like the way the new guy did it the best. It was just really kind how he told me, and I was impressed that he did it himself and didn’t have someone else in the office do it. It felt like my baby was important enough to him to make the call himself, and I so appreciated it. There is few better motivators to not break down into tears when you have a handful of children surrounding you in Target. So we added a little extra chocolate to the cart, checked out, and walked to the car. On the walk to the car I wondered how long I could keep it a secret from Frank, just so he could not have to know for just a little bit longer. But I am a terrible secret keeper and he happened to call me on my cell as soon as I had buckled up in the Target parking lot anyhow. Earlier that week we had joked about starting to play the lottery if this baby ended up with CF, just for the impressive ability we had to beat the odds. So this time it made it easier to tell him. I said I had heard from the doctor about the amnio and that we should go ahead and buy a lottery ticket.
My kids always freak out when I cry and I didn’t want to talk to them about the new babies CF yet so I decided that I needed to suck it up, after all I knew this was a possibility and I needed to move forward. That worked pretty well for a few hours. I took the kids where they needed to go that afternoon and went to be with the young women that night from church as they made preparations for their color run that coming Saturday. Then I came home and went to bed. I never sleep well, but especially not when I am pregnant. At three in the morning I woke up and immediately thought of the baby having CF. I decided I wasn’t OK with sucking it up just yet. For a few days Frank and I did the some things that we thought would help us suck it up and move forward. Donuts were involved. I experienced a hair crisis and dyed my hair a wee bit darker than initially planned, etc (thank heavens I left my bangs alone).
Then I went into one of my favorite mental states - project planning. I knew I had to do something to really help myself to suck it up and move forward. I came up with an idea to have a family centered fundraiser. Each of us would sell something and we could throw in a bakesale or something to make it more of a draw. I felt like if anything, this fundraiser would give me something to do to move forward and feel like I was helping us to be more prepared for our current and upcoming CF needs.
Orson is obsessed with the old Star Wars movies and we have been having light saber fights at home so I thought he could have a table and sell his light sabers. Charles is consumed with taking things apart (old microwaves, CD players, flashlights, and anything else he is given permission to take apart) and has a large box of cool stuff he has found in his adventures that he always asks if he can make machines out of. He could make robots and sell them using his over flowing “take apart box” items. Maelee is always writing and drawing so I thought she would like to sell her work in the form of “Thank you,” and “happy birthday” cards. For myself to make, I immediately thought of these dolls I had made years ago when Maelee was little. I would make them for our new baby Ruby’s contribution to the fundraiser. Frank totally supported me in my idea and we thought of a day that we could do it on and started to work on it.
Then the meatball song effect happened. You know the song, the one about the meatball that gets sneezed out the door, rolls all across creation and then grows into a meatball tree? Well several friends began asking me what they could do to help me with the fundraiser and I was having trouble knowing what to say. Then 2 particular friends came to me together and said that they would like to help make my fundraiser into a larger event and they had a plan of how to do it. They gathered recruits and now there is this sweet army of friends and neighbors who are totally organized, smart, kind, generous, and making this happen way bigger than I ever could have on my own. So its official, the meatball is growing into a tree.
April 11, 2015. Cardon Park 2540 E. Fairview, Mesa, AZ. BBQ family diner, silent auction, raffle, treat table, cotton candy, popcorn, snow cones, bounce houses, entertainment, dance floor, furniture sale, CF Is Not Forever t-shirts, our family will still be having their table of items for sale, and so much more will be happening at the event! We are in awe at the love, kindness, work, and generosity that is being extended to our family in our efforts to manage CF x 3. April 11, 2015 will be EPIC!