Breathe In, Breathe Out

Happy Father’s Day! June 17, 2012

Filed under: My posts — elanaalfred @ 1:03 pm
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Happy Father’s Day to all you great dads and dads-to-be! As a daughter of the the best dad ever, I can tell you that my dad has been a significant part of who I am today. My dad and I have a special bond that I will always cherish and I thank him for being the first man to ever love me. My father-in-law is also an amazing dad, who has raised Eamonn to be a strong, loveable, and sensitive man. If Eamonn has learned from his dad even half of what it means to be a father, then I have complete confidence that he will be a terrific dad to our children. Eamonn has also been learning about fatherhood through his 3 older brothers-in-law who are incredibly dedicated and loving fathers to my 8 nieces and nephews. It has been such a pleasure watching all of them become dads.

This post is written by Eamonn himself, sharing his thoughts about some day becoming a dad and what that means for both of us. Eamonn is the most amazing person I have ever known, and an even better husband, and I know that our kids would grow up wanting to be just like him, and that makes me the proudest, happiest, some-day mom.

My students and I have just finished up the school year by releasing the bugs they have carefully cared for over the past few weeks, patiently watching and feeding silkworms and waiting for them to emerge from cocoons, blasting stomp rockets as high as we can, and having a top secret pizza party to reward the students who won my “Tournament of Mystery.”  It’s been exhausting, but I wouldn’t pass up a minute of it.  Through my six years as a teacher and my growing role as an uncle, I’ve come to realize how much I love kids.  I love how inquisitive they are.  I love the concern that they can show for people when they sense that others need it.  I love to see their faces light up when they experience something exciting for the first time.  I love how they can do or say things that make me crack up, often without even meaning to.  Perhaps most of all, I love how they allow me to stay young.  As challenging as adult life is and will continue to be, I can still find a way to indulge in that simple youthful joy.

As I mentioned, I’m a teacher.  I currently teach science to students in grades K-3.  I also have three nieces and five nephews.  It’s fair to say that most of the people I encounter on a daily basis are age 9 or under.  And I love that.  Not only do I have lots of fun working with kids and playing with my nieces and nephews, but all this experience has taught me a lot about how to handle kids.  I often find myself thinking what a great dad I’ll make some day, since I’ve got a bit of a head start on most other men (though I do occasionally worry that I’ll fall into the trap of repeating some of the dumb mistakes I see some of my students’ parents make).

There’s one problem though:  my CF makes our decision to have kids far more complicated than it is for the average couple.  Firstly, there are physical problems.  Most men with CF cannot conceive children naturally.  The process to have one’s own children is complex, not always covered by insurance and not guaranteed to be successful.  However, this is one of the most easily resolved problems we face.  Either we want our own biological children and we invest the time, energy and money to take that route, or we adopt children.  To be honest, I know that I cannot even begin to imagine the wonder of holding a tiny little human of your own creation in your hands.  However, Elana and I both at times feel that there are more than enough children in the world who need parents and a good home, and that maybe adoption would be best route anyway.

There is an additional ethical consideration of having our own biological children, which is that of passing on my CF gene.  Elana has yet to be tested to see if she is a carrier of CF.  If she is, we’d have a three-in-four chance of having a child with CF, a one-in-four chance of having a child who is a CF carrier, and 0% chance of having a child with no CF genes.  Even if Elana is not a carrier, which is the most likely scenario, then any child we would have would be a carrier.  In other words, we’d be simply passing on the burden of carrying and potentially passing on a CF gene to our children.  If our child were to fall in love with and want to have children with another carrier, they’d be facing the same dilemmas we are.  If we really want to end CF, perhaps that must involve stopping the transmission of the gene on to future generations.

While these tough questions give us plenty to consider in regards to having children, they pale in comparison to our greatest concern.  As you know, I’m listed for a lung transplant, but my health has been relatively stable since I was listed.  With luck and hard work, I will be able to put off a transplant for some time still.  However, it is in all likelihood imminent.  Once I’m transplanted, I’m very confident that I will enjoy wonderful health and a return to normalcy, as transplant outcomes are constantly improving.  However, no one knows the upper limit of how long one can survive after a transplant.  Certainly some live twenty years and beyond with new lungs, and I’m always wondering what medical advances will be made in the future that will allow me to prolong the life of my new lungs (there’s even the absurd thought that someday I’ll be able to just swallow a spoonful of stem cells and just come out A-OK, as if that’s how they work).  But what it all comes down to is that my future is uncertain, and that greatly complicates the question of having children.  No matter how much I love kids and how confident I am in my healthy and successful future, I cannot ignore the fear of leaving Elana a widowed mother someday, and that’s perhaps one of the scariest things about being an adult with CF.

I don’t want to give the impression that we’re around the corner from having kids.  I think if we found out tomorrow that Elana was pregnant, we’d completely freak out.  Thankfully, these decisions are still a few years off, and hopefully we’ll have a chance to have a parenting test-run with a dog soon.  But these are real issues, that are ever present, sometimes as an elephant in the room, sometimes as a tiny mouse, but always there nonetheless.  I’m confident, however.  When I say that my future is uncertain, I don’t necessarily mean that negatively.  One of my favorite sayings, which I’d like to think I live by is “The future is unwritten”.  There are no foregone conclusions, even when the world  seems to suggest them constantly.  I plan on living to a ripe old age, hopefully with my kids and grandkids around me.  And someday, maybe I’ll be a super-fun grandfather, launching rockets and digging up bugs with my grandchildren.  But for now, there is a lot that remains undecided, and the best thing for me to do is to wake up every day and go out there and be the best uncle and teacher and husband I can be.


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.