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.