Heavy Heart

Today I have a heavy heart. Today was my due date. I knew it was coming and some knew, others did not. I woke up today and literally felt sick to my stomach. People ask if we want more children and yes, of course I "want" more but the long and short of it is that we will not and it's because of Cystic Fibrosis.

There came a time a couple of months ago where the inevitable happened. Everyone around me became pregnant with their second. I knew it would be tough but when it happened, although I was excited for my friends, it was like a jab to the heart each time. It seemed as thought they all got pregnant at the same time (which they did!) and I started having dreams that people close to us were pregnant. I would wake up and write them asking if they had something to tell us!

I got over it and I know that we have made the right decision for our family. I know that we are very lucky to have had a child at all, others struggle every day to get pregnant, but I guess for me I just always imagined having more then one child so the fact that we "can" have more but won't because of Cystic Fibrosis is the hard part.

People always ask if we plan on having more children and my response is this, if we were to have another child, the chances of that child having CF are the same as they were for Nash. A 25% chance. But the reality is, it's not just about the chances of that child having CF or not. It's about Nash. We want to give our 100% to Nash. It's our family decision. I think about if I were to be having another child, as I was supposed to around now, and I don't know how we would have done it. I know that it's all about scheduling and asking for help but we don't have any family in the city. My husband owns his own business that is ridiculously busy, we have two dogs and a child that requires daily physiotherapy and meds, being diligent about his diet, doctors appointments, clinic visits....I know that we could manage it if we had to but I just don't want to feel like I'm taking any time away from Nash. I want to give him 100%.

So that's that. Today will suck but tomorrow I'll be fine. We have an amazing little boy and I can look forward to all the things we can do for him and with him. And to all my friends who are pregnant right now, you know that I'm beyond happy for you, I'm just a little jealous:)

Nash's Beads of Courage

I posted briefly about Nash's Beads of Courage back in the Fall when he first received them but with thinking about all that he's been through this past year I thought I would touch on it again. The Beads of Courage program was introduced to the Alberta Children's Hospital in 2012 with CF Clinic being the first to take part. Beads of Courage is a way for children to record and tell their story through beads. Each time we go to clinic Nash receives new beads. Here is a link to "Beads of Courage Canada" to learn more about the program.

Link to "Beads of Courage Canada"

This past week I was interviewed by a writer hired by CF Canada who is doing a fundraising letter featuring our family. This letter will be mailed out across Canada with the hope of raising awareness and funds for Cystic Fibrosis Canada. After being interviewed it really brought me back to when he was first diagnosed right up until now and all that he's been through. Clinic visits, throat cultures, stool analysis, ultrasounds, chest x-rays, blood-work, needles, needles and more needles. Add that to the numerous daily medications and hours of physiotherapy that will only increase as he gets older. Did I mention he's not even 2! This is what the Beads of Courage program aims at highlighting; all that he's been through, and will continue to go through, as the years go on. Each bead represents one part of his journey with Cystic Fibrosis. 

We feel fortunate that Nash has been fairly healthy with only numerous colds and rounds and rounds of antibiotics. He has not been admitted and his only "procedure" coming up is a preventative one in the way of a Bronchoscopy. His Bronchoscopy will take place this summer, and while only a 15-minute procedure, will he will need to be put out. 

We went over the whole process this week with our Respirologist and she was able to show me a bronchoscopy camera that they had hooked up to a computer and went through step-by-step the entire procedure. When asked whether I was ok with doing it I replied by saying that if they felt that the benefits outweighed the risks and they felt it necessary then we were ok with doing it. She explained that some clinics do them more often, some not at all unless there is a problem and that as a CF clinic, they are middle of the road with their approach. In our eyes, we would rather know if there is some form of bacteria in his lungs causing damage than not, so we will be going through with it. 

Nash's Beads of Courage - April 2013