You think this was difficult?
The "decision" that many potential parents dealing with chronic illness have to make regarding starting a family, while almost never televised, is considerably more difficult and much more life-altering than "taking our talents to South Beach." I speak from experience. Thanks to cystic fibrosis, having kids is not as simple as a fun evening with your significant other. For Andrea and I, it required preparation, disappointment and determination.
For years, there were "CF parents" but that meant the parents had kids with CF. Almost never did it mean that the parent actually had CF. The stereotype of the CF parents is constantly changing. I'm proud to call myself the "new version" of the CF parent but it was a long journey to get there.
In Vitro Fertilization (IVF) is widely known to be financially exhausting. That's certainly not a lie. The procedure, at the time, was not covered by our insurance company and cost nearly as much as a new automobile. What is rarely mentioned, however; is the cost both physically and emotionally that IVF puts on the couple. Andrea and I went through IVF three times before successfully getting pregnant with Avery. It required Andrea going through a brunt of the pain. For me, that was extremely difficult because I knew that I was solely responsible for us having to go through the injections and surgical procedures. Approximately 98% of males with CF do not have a fully formed vas deferens which is the bridge that brings the semen into the penis and allows for "normal" sexual reproduction. My vas deferens was about as reliable as my Braves in an October playoff series. Sorry, I had to go there. Go Falcons by the way!
IVF will never stand for "It's Very Fun."
Andrea and I always wanted to have kids. That was never a question. I had to ask myself though if I was up to the task. Having two amazing parents myself, I understood that parenting required a lot of time. I knew that two hours of cystic fibrosis treatments a day would often get in the way of being 100% attentive to the needs of my children. Then there was the fact that I had a terminal disease. Would it be fair to have children? My doctors told me that my health was very good for someone with cystic fibrosis and I wanted Andrea at the least to have children of her own because I knew that she would make an amazing mother. By the way, I was 100% correct on that prediction. We knew that adoption was probably not going to be an option since most agencies would be hesitant to give a child to someone with a life-threatening disease. After the first IVF "failure," I told myself that if we did have kids that I would be the best father I could. After the second unsuccessful attempt, Andrea and I began to have doubts that we would be successful. It was a really emotional time especially with friends announcing their own pregnancies. Envy definitely creeped into my head.
I'd known for a long time that having kids would be difficult. First off, as a kid I found out that I wasn't even supposed to be around in my twenties. In my early twenties, while still single, I went to an IVF clinic and had my "swimmers" tested. When I found out my sperm was "suboptimal," I was greatly disappointed. Many people wondered why I did this then instead of waiting until I was actually dating someone seriously. It was something I felt was important to share with anyone that I dated regarding our future. As positive as I was, I always wanted to be upfront about my circumstances. It's not like I brought it up on the first date but as a relationship got more serious and my significant other began learning about CF, I wanted to make sure I had the answers she needed. I did of course think of some great ways to bring it up. "You swam competitively in college? What a coincidence! My sperm need swimming lessons." Try not to steal that one.
The third IVF attempt for me and Andrea brought success. It made all of the injections, the surgeries, the financial loss and the emotional pains worth it. We had our baby girl Avery in 2006 and two years later after one less attempt, we had our son, Ethan.
I'm truly blessed.
I kept my promise of doing all I could as a parent. Like Andrea, I participate as much as I can. At night, you'll rarely find me out as I truly enjoy laying with my kids before Andrea and I put them to bed. I have been coaching their little league teams for the last 6 years. I truly enjoy seeing both my kids when I pick them up at carpool because I realize what a blessing it is to be a parent. Yes, after many years of changing diapers and dealing with tantrums, I can still safely say that I love being with my children.
Coaching has been a great way to bond with my kids.
I'm very fortunate that my wife is an extremely active parent. CF forces me to spend a lot of time focusing on my health. While I do my therapy in the mornings, Andrea wakes the kids and makes their lunches. In order to spend more time with my little ones, I do my therapy 3 times a day during school days (they are at school during my added midday therapy) and only twice on the weekend usually when they're asleep (early morning and late night). When I'm sick, my kids understand that I may not be able to pick them up because of the IV implanted in my arm and that I may not kiss them in order to avoid germs. That's commonplace in our house. Speaking of commonplace, my kids don't see my therapy as strange. Sometimes I do an extra therapy in the middle of the day when they are home or an early evening session and they'll just bring a friend by and aren't embarrassed at all to walk by me while I'm doing my vest. Occasionally a kid asks them what I'm doing and I hear my kids say "He's just doing his therapy." It's as if it is as normal a task as brushing one's teeth.
Just daddy doing his vest.
There are other things different about me as the "new version" of the CF parent. I wear a mask during our flights out of town and to the pediatrician's office. I sometimes do my vest in the car while waiting for them in carpool. I like to call myself the "nebulizer driver." I take my pills wherever we go and my kids sometimes have to remind me to put the bottle back in my pocket after I take them.
CF probably affects my kids though they don't have it. I imagine they worry about my health and it makes them worry about their own mortality. As they get older, we'll have more talks about CF as I'm very open to discussing the topic. As of now, they realize that it's mostly a lung disease and that daddy takes a lot of medication and does a lot of therapy to stay well. I tried to convince them that CF means daddy has to watch a lot of sports but they didn't seem to buy that one.
Not a day goes by that I don't give 120% effort into being the best father that I can be. Not a day goes by that I'm not grateful for having a wife who is an amazing mother. Not a day goes by that I don't regret "the decision" to have children.
Now if you'll excuse me, I have another "big decision" on my hands...pop tarts or waffles for breakfast?
Yeah, the decisions have gotten slightly easier but when it comes to loving my kids, no decision is any less important.
Being a parent in a word has been "magical."
Live your dreams and love your life.
Andy
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