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A Shout-Out to All the Moms, Especially Mine

Aug 22

Posted by: ACHA
8/22/2011 3:50 PM  RssIcon

By Alissa Butterfass

Usually when I think of my heart condition, it’s that—MY condition. Something that is a part of me. Part of my life. My issue. As someone who has been living with a CHD for nearly (cough, cough) years—ok, 40—I feel like I am an authority on the subject in a special way exclusive to only those of us who have been living with a CHD.

So about a year and a half ago, when a very close friend’s three-year-old son was diagnosed with a CHD, of course I reached out to her. Here I was—working parent, two-time Ivy League grad, avid skier… a shining example of all that her precious son can and will be, CHD be damned! While many of her friends and family were concerned and gave an outpouring of love, I knew that over the past year or so my circumstances and experience provided her with a singular perspective and empathy that no one else’s could.

Ha! I need to get over myself. Because last night I realized I am not the example she needs—it’s my mom.

Last night my friend and I met for dinner and (for reasons irrelevant to this story) my mom met us outside the restaurant to give me a ride home. Now, Mom has known about my friend’s son’s diagnosis and has followed his experience from the beginning, just as I have. She’s the kind of mom who knows—and loves—her kids’ friends and right from the start she too had reached out to my friend. At the time I thought nothing of it, just my mom sending a kind note as she would to anyone going through a hard time. But as the two of them chatted last night, right there at the curb with Mom leaning out the car window, I was silenced (usually a tough thing to do).

That’s when the light bulb went on.

I was just the kid who had a CHD. It wasn’t me who my friend needed to go to for advice. It was Mom. Rather than contribute to their conversation, I was sidelined by two moms who shared an experience that was unique to them, not me. Only Mom could help my friend figure out how to make a “normal” life for her son, decide if and when to set limits, make sure her other children get the attention they need, help her pre-schooler understand why he has to go to so many doctors, and more.

The truth is my heart condition is not just MY heart condition. It was Mom’s, too. She has raised a child with CHD for nearly (cough, cough) years—and as all parents know, you never really stop raising your kids, even when they have kids of their own. She has waited through doctor’s appointments, MRIs, open heart surgeries. She has visited me in the hospital too many times. She has worried, cried, laughed, rejoiced. And, even if I don’t tell her often enough, she did it pretty well.

So, thank you Mom. And, thank you not just for being there for me, but also for being there for my friend in a way that no one else—not even I—can be there for her.

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 chocoholic, 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.

Location: Blogs Parent Separator ACHA Blog

3 comment(s) so far...


Re: A Shout-Out to All the Moms, Especially Mine

Last week I called my son's cardioligist and asked for some support web-sites, this being one they suggested. Your Shout-Out is the very first thing that I saw on the screen. Thank you! Your mom is a very blessed lady. Wishing everyone the best!

By Sabrina on   8/24/2011 1:19 PM

Re: A Shout-Out to All the Moms, Especially Mine

Thanks Alissa! Wonderful to hear how functional you are, beyond amazing. I am the mom in our CHD journey; my daughter is cough, cough, 33, and looking at heart operation #7. This journey does effect the entire family, no doubt. HUGS to all the moms, especially yours!! <3

By Kathleen Thompson on   8/30/2011 2:59 PM

Re: A Shout-Out to All the Moms, Especially Mine

Wow! Thanks for sharing Alissa. I often think in the same way, "MY" CHD and not my mom, husband or anyone elses. but this opens my eyes that it affects all those closest to me especially my parents. I am 32 years old and like you, was born with Transposition of the Great Vessels. I had open heart at 6 months old (1979) and no other "major" surgery since. BUT...I have had other situations such as Atrial Fib in 2000 which led me to have a cardioversion performed to get my heart back in "normal" rythym. then in 2009, a few days after delivering my daughter via emergency c-section, I went into heart failure and was hospitalized for 1 week and placed under a medically induced coma. I knew that pregnancy was a HUGE risk and my physician at the time reluctantly went along with my decision to try for a baby (after MANY tests), he said I should be okay BUT there are always risks....well, the pregnancy was PERFECT! Loved it! Then came the day to be life changed after that....the birth of my daughter although amazing has traumatized me like nothing else, so much has changed.....I try to look at the positive and be thankful that she was born healthy and beautiful...but the events that took place afterwards were/are so disturbing to me....I must be grateful that I have ONE healthy child and I am here today to celebrate her 2nd birthday in just 14 days! =) But I am also a little sad that I can not have anymore and that I am back on med's, weakened my heart and my "spirit"....I'm sorry for the rant, but felt like writing all of this because I feel I can somewhat relate to you. Thanks for your blog post! <3 Sue A <3

By Sue A on   9/15/2011 12:16 AM

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