Life with CHD is Still Life
6/23/2011 10:22 AM
By Alissa Butterfass
Note: While it is a Thursday, this post was submitted by Alissa on a recent Monday morning.
For my first ACHA blog, Terri had requested I write about my experience with gestational surrogacy—which is how my second son S. was born. As I sat at my computer the past two days, that was my intention. In a separate file I have a couple of paragraphs drafted but I couldn’t focus on them. You see, it’s going to be one of those weeks, and all I can think about is my over-extended so-called life. So, I promise to write about surrogacy in a future post but for now, at 8:52 p.m. on a Sunday evening, I share with you my week ahead.
Meet with basement contractor (who is repairing flood damage) regarding floor tiles. Lead a conference call to review a presentation I drafted for a client meeting on Wednesday. Anticipate spending the rest of the workday making revisions based on this meeting. Presentation must be finalized by 4:30 p.m. since I am not working on Tuesday (see below) and so that I can attend tonight’s 5 p.m. Kindergarten Visiting Day with my older son at the school he’ll be attending in the fall. Also, try to find time to call electrician to fix the several appliances and outlets that aren’t working in the kitchen. Oh, and get camp medical forms completed; they were due last Wednesday.
Transition meeting with the current president of the charitable organization I volunteer with and of which I will be co-president as of next week. Carpet guy comes to measure floors (part of the basement fix). Out the door by 11:30 a.m. for a cardiopulmonary stress test, which for some unknown reason is only offered on Tuesdays, Wednesdays or Thursdays and only at 12, 1, or 2 p.m.
(Did I mention I work part-time, usually on Tuesdays-Thursdays? It’s fun explaining to your boss why you can’t make a doctor’s appointment for your Monday or Friday off day, or just come in a little late. At least I was able to switch work days and don’t have to sacrifice a vacation day for it.)
If stress test is done early enough, stop for cupcakes on the way home so we can celebrate the nanny’s birthday. So happy I remembered to buy her a card this weekend. Now I just need to get the boys to decorate it.
Together with my husband, juggle the morning madness with the kids and make sure both he and I are ready for the workday ahead with him out the door by 6:30 a.m. and me right when the nanny arrives at 7 a.m. (please don’t be late!). I have to be at my office by 9 a.m. for that major presentation with the external client (must be awake, alert and confident) that will be followed by a one-on-one meeting with my new Vice President (must be awake, alert and impressive).
The morning is sure to be much more relaxing as my husband and I both need to be ready and out the door at 7 a.m. He has an extra half hour—luxury!
Another “non-work day” that somehow got filled up quickly with a midday play date for my kids and cooking a meal for a family friend going through cancer treatment. Who knew this week would be so busy, shopping for ingredients for that meal, dropping off that meal, and maybe feeding my own family, too.
Saturday & Sunday:
Rest and relax. Oh, wait! My husband, an emergency room doctor, is working all weekend, leaving the house at 6:15 a.m. and returning at 8:30 p.m. Two days with two boys (ages 2 and 5) on my own. Fun? Yes. Restful and relaxing? Hmm… not so much!
Why do I share this all? Why is this relevant for other ACHDers?
Because as you all know well, life with a congenital heart defect is still life! It’s as hectic and frazzled and fun and exciting and exhausting and stressful and wild and wonderful as everyone else’s in this world. Sometimes more so, sometimes less. There are days when other than my daily meds, it doesn’t pervade my life. There are weeks like this, when it’s inconvenient (did I mention they don’t offer the stress test on Mondays or Fridays, or before 12 p.m. or after 2 p.m.?!?!). There are times when it completely changes your direction in a major way and then leads you down a path that is scary and unknown but ultimately amazing (yes, I am referring to the birth of my younger son via gestational surrogacy). You still can find work that is challenging and a cause you are passionate enough about to give of your precious time and money. You still must deal with the flooded basement and the morning commute. You still can be so lucky as to find friends that are true, marry a husband that loves you and parent two little boys who fill and fix your “broken” heart in a way that your two open heart surgeries never could.
Alissa Butterfass was born with Transposition of the Great Vessel, which was corrected with a Mustard procedure at age 2. In addition to being a mom, wife, daughter, sister, friend, wanna-be author and chocolaholic, she works part time as a senior marketing manager at a Fortune 500 company and volunteers as the Co-President of her local chapter of a nonprofit organization.
3 comment(s) so far...
By Ruth Phillippi on
6/23/2011 1:33 PM
Re: Life with CHD is Still Life
Great post, Alissa! I 100% agree that life with a CHD is just as challenging, and exciting, as any other person's life - and let's face it, it's the only life we get to live, anyway!
By Stephie on
6/26/2011 1:14 AM
Re: Life with CHD is Still Life
What a beautiful portrait of your "still" life you paint for us, Alissa! Thank you, and I look forward to hearing about your gestational surrogacy story.
By M.K. on
6/29/2011 1:03 PM
Re: Life with CHD is Still Life
Aye, there's the rub. Having a defect isn't like having a disorder or disease. You have it, yes. It's not obvious to the casual observer which really doesn't make you different, special or any more or less extraordinary than anyone else. It's nothing you suffer day in or day out, except for that nagging ache when the barometer fluctuates. So what is it exactly? How do you define something that doesn't really affect or define you except for when it comes time to replace valves? Yet, it's more than just a superficial flaw. To ignore it means premature death. Moreover, in all probability, it will be the definitive cause of our inevitable demise.
Makes one stop and think, doesn't it?