Breathe In, Breathe Out

Happy Mother’s Day! May 13, 2012

Filed under: My posts — elanaalfred @ 1:38 pm
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Happy Mother’s Day! A special shout out to my incredible mom. Despite everyone thinking they have the best mom, I actually do! And to my new mom, who takes super-mom to a whole new level. Though I do not know from personal experience, becoming a mom turns your life around. I have been witness to my three amazing older sisters as they become mothers, learning to balance their chaotic schedules while staying sane, and most notably how they love their children so unconditionally. I was also raised by a mom who has gone over and above her motherly duties- my mom has been my biggest cheerleader and supporter and I should thank her everyday for what she has given me. And of course I now have another mom, Eamonn’s mom, who raised the most incredible person I know (Eamonn) so I can’t begin to thank her for that.

Mom Kelly redefines supermom. I am learning what it means to be a caretaker for someone with Cystic Fibrosis, or any chronic illness, but she did not really have the opportunity to learn because when you’re a mom of an infant with CF there is no time to figure it out. Eamonn and I are so fortunate to have her support, advice, and love, especially as we struggled with his declining health. As someone who is somewhat new to the ins-and-outs of CF, I turn to her as a role model and inspiration when I’m not sure I can handle it all. What better way to get a glimpse into her role as a mother of a child with CF than to have her tell it herself? So here are her own words:

Having a mixed family of chronically ill children and healthy children is a total juggling act.  You must balance the competing needs of your marriage itself, of your children, of your own need for sleep, exercise, professional fulfillment, and leisure time with friends.   For me, it seemed best to keep working once the diagnosis was made.  This was true, in no small part, because I didn’t need much sleep, had boundless energy, and worked a kid-friendly schedule as a teacher in a nearby school system.  I was fortunate to work for a wise superintendent who gave me great advice at a very confusing and upsetting crossroad in my life.   He suggested that once the problem had a name life should get easier because providing proper therapy will mean better health for the child with cf.   He was so right.

Thank God I have the spouse I do.  The pressure on the marriage starts immediately because almost all of your energy is focused on the needs of the children.   And the opinions start to fly, beginning with the classic, “We don’t have that on our side of the family.”   (Actually, yes you do.  CF comes from both parents which, in some strange way is a blessing in that it eliminates the family blame-game common to other genetic diseases.)   I was so lucky; I married a man who was secure in every way and who understood that there would be less “us time” at some (make that many) periods.  Also, I had in-laws who let us have evenings out when the kids were small.  Most important, I had a blessed sister, herself a young working widow, who gave Bob and me the occasional treat of a quick night away while she managed her own son and our three kids.  I cannot tell you what that meant to us at the time.

Continuing to work helped me to maintain a balance in my life.  First, it provided continuity of structure for our family since I had always worked around my three generous maternity leaves of a year or more each.  Also, it gave us a small additional income but, more important, it provided a second health insurance policy that picked up an added 80% of our out-of-pocket costs.  Having good insurance gave us great peace of mind as we never had to worry about the financial problems of the “what ifs”.  But, the best thing about working was probably the support group it provided me.  Teachers, naturally, are caring people who extend themselves to others and our lunch table was often like a therapy session for me.  I definitely got by with a lot of help from my friends.   Also, just having to stand in front of a math class of energetic and skeptical eighth graders all day helped.  I had to banish the problems at home when I was teaching and it was difficult to dwell on the difficulties in the classroom when I was at home.  So, in a weird way, each situation provided relief from the other.  (Bob has repeatedly told me that this was some twisted thinking, that my goal should be reducing total stress in my life but, hey, it worked for me.)  It must have been much harder for Bob to compartmentalize his life in his “think- research-think- write”  kind of job.

Neither Bob nor I had much time for leisure activities that weren’t family centered but what working parents do?  Out the window went golf, lacrosse and, unfortunately, most vigorous exercise (little legs just cannot keep up).  We did develop wonderful Popeye forearms from twice daily therapy sessions in the pre-vest days (therapy machine).  Every woman’s dream arms.  It was difficult to find time to read our own “chapter” books- well, to finish them anyway -as we struggled to read the same passages night after night in bleary-eyed confusion.   Kate told me that she would never be a working mother because I never had any time for myself.  This wasn’t as much a reflection of my selflessness as a comment on my lack of manis, pedis, and make-up.  At that stage of life Kate differentiated between what she called the “fancy aunts” and the rest of us, and it was clear which group she favored.  In her child’s mind you couldn’t be both.

Working or not, it is every mother’s fear that one child or another might get lost in the shuffle.  When you are a working mother in a family coping with the additional demands of a chronic illness this particular worry can keep you awake at night.  I somehow muddled through buoyed in my most anxious moments by Bob’s reassurances.  I never tried to be a perfect parent, just a good one, and some days I’d have settled for adequate.  As Roseanne Barr once told her sitcom husband, “Hey, if you come home at night and all the kids are alive I’ve done my job.”

As with all parents you never know whether you’ve succeeded or failed at your most important task until it is far too late to change course.  Judging from the external evidence I’d vote thumbs up for us.   All of our kids are adults we not only love, but respect and want to be around.  I am sure that each harbors some feeling of being slighted at some point in our family life but what child growing up with siblings doesn’t?  I feel confident most days that, once my kids start juggling their own family needs in over-busy lives, they will have increased compassion for what it took to raise a “mixed” family.


The Hills Are Alive With the Sound of CF May 3, 2012

Screaming and yelling.
Endless phone conversations.
The violin in a closet.
When the Saints Go Marching In” on the piano.
The trash compactor.
Ace of Base’s “I saw the Sign.”  

What do all of these things have in common? They were all familiar sounds of my childhood. Growing up in a family of 7, not to mention almost all over-dramatic females, I grew accustomed to noisiness. When it was quiet, it was weird. It either meant we were all doing homework, or that a fight just ended and no one wanted to break the awkward silence (though that was rare!). As an adult, I gladly admit that I can be loud—you can stop nodding your head in agreement. I do what I have to do to be heard, and I thank my upbringing for that. Having been surrounded by loud noises and voices for all of my life, I guess it just became a part of me, and little did I know this would prepare me for my life with Eamonn.

Now, my home is not full of so many voices, just Eamonn’s and mine, but that does not mean it is not full of many sounds and noises. Living with Eamonn I have gotten accustomed to new sounds—ones that make my skin crawl, ones that calm my nerves, and ones that wake me up during my sleep. These are some of the sounds of Cystic Fibrosis.

The first sound that comes to mind is when Eamonn is doing his physical therapy, twice a day. To describe the sound of the machine will probably do it injustice, but I will try. Imagine what a helicopter would sound like wrapped in a blanket–and it’s sitting on your couch. That is a sound that I fall asleep to at night and that I wake up to in the morning. Not to mention, Eamonn’s nighttime therapy is a good time for us to relax together and catch up on some of our TV shows, which means that the volume is turned to its maximum, disturbing our neighbor. Yes, he has knocked on our door a few times asking us to turn down the volume because he is trying to sleep. The loudness of the machine has also forced me to turn up my volume—it seems that I always have the most important topics to discuss with Eamonn just in time for the start of his therapy. In our old apartment, so as not to bother our random roommates, Eamonn had to do his jack-hammer-sounding therapy in our bedroom. Nowadays, in our current apartment, we are lucky to have a separate space for Eamonn’s loud routines, making it easier for me to, say, fall asleep.

As I mentioned in my very first post, another sound that I have grown fond of is Eamonn’s oxygen concentrator. Quite opposite from that of the therapy machine, this machine has a more calming, soft hissing sound that has actually become a sound of comfort to me. His concentrator is on for almost all of the time that he is home, so it has become the “norm” for us. When I don’t hear this noise the apartment feels strange and lonely.

Imagine waking up one morning, in a foggy, sleepy state-of-mind, to the sound of someone rummaging through your drawers, finding a bag of chips, and tearing them open. I wake up to these sounds most weekday mornings. Eamonn wakes up very early to start his therapy and this means grabbing all of his drugs. His drugs, which come wrapped in foil pouches, sound very hard to tear open. They are kept in our bedroom. Where I sleep.

An obvious part of Eamonn’s CF is his continuous cough. I consider this, often times, to have its perks. For example, when the windows are open in our apartment the sound of his cough echoes through our narrow street so I know when he is home. This is especially convenient when Eamonn is returning from the grocery store because it allows me to meet him downstairs to help him carry the bags. At the expense of sounding crass, I often times, however, can get severely frustrated at his coughing sounds. Most notably when he is getting into bed, cuddling with me while I am usually already sound asleep, and I am awoken by a loud throat clear directly in my ear. And Eamonn’s throat clears are not quiet—they sound like he is trying to push a kiwi out of his lungs. In general Eamonn’s coughing has become another background noise (though I do notice when he is getting sick and coughing more). Even though the coughs tend to interrupt us when we talk, I hardly notice them because they’re just a part of the conversation.

The sounds of CF are a part of my life now, making it hard to imagine my home without them. Even as I sit here, trying to concentrate and focus, I listen to the oxygen concentrator and it brings me peace of mind—it reminds me that Eamonn is only a few steps away, clanging the pots and listening to music, while making me dinner.

Be on the look out for a special post net time!