Breathe In, Breathe Out

Fitting Into Your Genes December 19, 2012

I grew up in a large family—I am the fourth of five girls (and don’t have any pity for my dad- he wouldn’t have changed a thing!). The seven of us, including my parents, have now become 20 when counting spouses, soon-to-be spouses, nieces, and nephews, with one more on the way. So it’s no surprise that as a kid I always wanted and assumed I would have a large family—I wanted 4 kids, avoiding anyone having to be a middle child, 3 girls and 1 boy. It did not matter in what order they came, but it was most important that they were all healthy.

I’m now 28 and married, with a very different family plan in mind. First, it’s important to say, primarily to my mom and mother-in-law, that Eamonn and I are not having children any time soon. Don’t get any ideas! But what I do want to share with all of you is an experience that I just recently went through, and that Eamonn and I will continue to think about as we decide when or if we choose to start a family.

As a woman, I have assumed that I will one day have my own children, experiencing the joys of pregnancy and becoming a mother. Since high school, before Angelina Jolie made it trendy, I also wanted to adopt children from abroad. After my trip to an orphanage in South Africa, that has since been questioned, but Eamonn and I continue to discuss domestic adoption. When I started learning about cystic fibrosis, having children was not on my mind—at all. At that point I was dating Eamonn, not thinking about marriage. As our relationship grew and I realized the probability that it wasn’t going to end, I started to really think about what CF meant for me, long term. I quickly came to understand the impact that it would have on us having children, which was far and away the topic that I have most grappled with since knowing Eamonn has CF.

What I most appreciated is how open and honest Eamonn and I were with each other as we began these mature conversations, which I never expected to have, nor think about until I was ready. For reasons that I am not going to explain I learned early that when/if we decided to have kids, it would not happen in a traditional manner. But what I could not control was the likelihood of having a biological child  who has CF or carries the gene.

geneticsWe all learn in freshman year biology about recessive and dominant genes. Actually, CF is a common example used by teachers/professors when reviewing this topic. Knowing that Eamonn has CF we are obviously aware that he has two recessive genes. To ensure that our children would not have CF I, then, cannot be a carrier. If I were a carrier, then our biological children would have a 50% chance of being born with the disease. For a long time this was hard for me to truly comprehend. I did not want to even be thinking about children let alone the concerns of their genetic make-up; I did not want to be having these conversations; I did not want to think about potential future decisions or choices Eamonn and I would have to make regarding having children.

Being that this was out of my hands, I could not allow myself to focus on it so much. I also didn’t want so much of my attention and energy revolved around our future, occupying time that we could be concentrating on the present. So I chose to put these matters to the side, knowing that someday, when I was more prepared to tackle them, we’d resume the discussions.

After Eamonn and I got married I realized that I wanted to know sooner rather than later if I was a CF carrier. More than I wanted to admit, I think not knowing was harder, feeling the burden of so many “what ifs…”. I eventually decided that I was ready to get genetically tested for CF mutations, along with other genetic conditions. However, it took me a long time to make the phone call to schedule the appointment with the genetic counselor. I think subconsciously while I no longer wanted to carry the burdens of not knowing, I was not prepared for what I did not want to hear.

I finally made the call and booked an appointment at the genetic clinic of Children’s Hospital, where Eamonn is a patient. Two weeks later Eamonn and I were meeting with the counselor. I thought the appointment would be relatively easy—I knew what I wanted to accomplish, it was clear as to why we were there, and I assumed that the actual blood draw would be the hardest part. Oh, how I was wrong. She asked so many questions, trying to understand our family’s backgrounds and explaining to us our options for testing, of which there were many. And though I was nervous from the get-go, learning that there was a 1 in 25 chance that I would be a carrier put a pit in my stomach (I thought it was far less likely). As the counselor explained everything to Eamonn and me, I fought back tears. Here I am, a happy 28-year-old woman married to the best person in the world, not yet ready to be a mom, but desperately wanting only the best for my children.

Two weeks after the appointment I had a missed call from an unknown number. I listened to the voicemail, not expecting the results so soon, shaking as I realized whom it was on the other end. We had decided that she could tell me the results in a voicemail so as to avoid phone tag. When I heard her say, “I have good news” I somewhat stopped listening to take a long deep breath. I know this might sound dramatic, but in the weeks waiting for the results, I tried to prepare myself for negative news—that I was a CF carrier, which meant there would be a 50% chance that each of our biological kids would then have the disease. I knew going into this experience that no matter the outcome Eamonn and I would deal with it together, but I simply did not want another hurdle to leap over.

Eamonn and I still have a lot to consider once we decide that we are ready to start a family. We have come to some resolutions—we do not plan for 4 children, it does not matter if we have boys or girls, domestic adoption is an option—but some questions and decisions we continue to ponder. Because I wish so badly that I could stop CF in its tracks, it is hard for me to know that our biological children will, no matter what, be carriers of this disease. But we are overwhelmingly thankful that we can feel more secure in having biological children who will hopefully grow up healthy (and happy). This experience has taught me, more than anything, to never take anything for granted. No one can assume their plans will turn out the way they expected—but appreciate what is given to you, and it might turn out even better than what you had in mind! My family, no matter the size, and no matter what imperfections it has, will be my world.


A Day in The Life of Eamonn October 28, 2012

Filed under: My posts — elanaalfred @ 9:22 pm
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Recently, deciding to be wild and crazy on a Friday night, Eamonn and I watched the documentary, “Life In A Day.” This film explores people’s lives from all over the world on July 24, 2010. As a viewer, it opens us up to a world we are mostly unaware of, making us realize that each of our own lives are only a small part of a significantly larger whole.

This got me thinking–I have been sharing stories of what it is like to live/be married to someone with cystic fibrosis, but most of you really do not understand the life of a CF patient. So, Eamonn and I decided to document his life in a day. Lucky for you, it’s not his whole day, only the CF-related aspects of it.

This film, to the best that he could, shows how much time Eamonn spends taking care of his health in one day. He takes us with him as he takes care of himself.

I want to thank Eamonn for volunteering to document himself, and truly letting everyone into his life.


Walkin’ It Out June 4, 2012

Filed under: My posts — elanaalfred @ 2:42 pm
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What would you do with $11,000?

If I’m being honest, I would probably want to buy clothing, accessories, décor for my apartment, and put a large chunk into my savings for future travel. I know it does not seem like much, if only I could tack on a couple more zeroes, but that amount of money can go a long way. In fact, if you google “what can you do with $11,000?” your search will come up with stories of people who live on that amount for an annual income.

I am very proud to share that this amount is also how much my Cystic Fibrosis Great Strides Walk team raised this year—to be precise it was actually $11,675. This was my and Eamonn’s 5th year walking, twice in Chicago and three times in Boston, so we wanted to celebrate this by making an ambitious goal for ourselves to raise $10,000. I knew this would be tough, but I have always been one to enjoy a good challenge, and was prepared to hold a couple fundraising events, send out letters, make phone calls, and of course make good use of everyone’s favorite fundraising tool, facebook.

In March, Eamonn and I sent out a letter or email to our closest friends and families asking them to donate to our walk team and/or join us for the walk in May. We were so touched and appreciative of the contributions that continued coming in for the next few months. We received gifts from childhood friends, my grandmothers’ friends, our parent’s colleagues and friends, and even friend’s friends whom we have never met. I know I have said this a number of times already, but I can’t possibly thank everyone enough who donated to our efforts. The money goes a long way in helping to fund CF research and bring us closer to finding a cure, but it also provides endless encouragement and strength for me and Eamonn.

The Great Strides Walk, and most other walks for causes, is driven by raising funds and awareness. However, for me the CF walk is far more than just that.

Since knowing Eamonn I have obviously gotten to know a significant amount about cystic fibrosis—about the disease, what its doing to Eamonn’s body, the medical treatments, the type of care needed to maintain a healthy lifestyle. I have grown accustomed to hospital rooms, meeting new doctors, despite my fear of them (no offense, dad), all of the equipment, etc. But there is one thing that I am not sure I will ever get comfortable with, and that is having to sit by and watch Eamonn when he gets sick, or overwhelmed with treatments, and not be able to take any of it off his plate. As his caretaker, my job is to stay strong, maintain my humor, hold his hand, rub his back, listen, and stay supportive. As his caretaker I cannot take his drugs for him, do his therapy, put on oxygen, gain more weight (well, that I can do, but it hasn’t helped him!) or take his place for hospitalizations. And what I really wish, was that I could just give him my more healthy set of lungs, or at least one, so that we could be equally balanced. Unfortunately, it doesn’t work that way.

The CF walk is something that I can do—not just for Eamonn, but for the entire CF community. For me, it is about my contribution to all those that live with cystic fibrosis, working everyday to stay alive. The money raised, the awareness to those who know very little about the disease, the unity it brings across the country, exemplifies hope, courage, support, and love. It is a moment for me to show Eamonn how much strength he has behind him and that he is most definitely not fighting CF alone.

The walk is also a reminder that there is an entire community of people just like us. As a wife of a patient, I have moments of weakness when I feel alone, as if nobody truly understands my thoughts and feelings, and not knowing who to turn to when I want to express my frustration and sadness. The day of the walk and seeing faces, looking at the team T-shirts, hearing other’s stories, I realize that I do have a CF family who struggles with my very same emotions. I feel a sense of belonging and comfort.

In 2008, Eamonn and I participated in the Great Strides walk Chicago with 8 close friends and raised maybe $300. A couple weeks ago in Boston, for our 5th walk, we were joined by a team of 25 friends and family members (including the babies) and raised $11,675. We have come a very long way over the past few years, as has the CF community. For those of you who were not able to join us on May 20th, it is important that you know how much we felt your presence. Each dollar contributed was one more push for me and Eamonn to keep striding, knowing that we have all of you as our cheerleaders.

With all the advancements that have been made in CF research and medicine, being able to contribute another $11,000 makes me incredibly hopeful—hopeful for a cure that will benefit Eamonn and my whole CF family. Perhaps next year we will strive to raise $15,000, but no matter what we will continue to walk with the rest of the CF community and invite you all to join us for years to come.