My Daughter, My Hero

This past Sunday, my husband, my daughter and I participated in the 3rd annual Congenital Heart Disease Walk that took place at Sunken Meadow Park on Long Isand.  This was the third time we participated and we are looking forward to “walking” again in the October NYC walkathon for the same cause.

Our daughter was born with congenital heart disease, but the severity of her condition was not apparent at first.  At birth a slight heart murmur was detected, but since she was “thriving” in the medical lingo of the time, no action was taken.  Five years later, just before she started kindergarten, I did as was told to do: I brought her in for a checkup at St. Francis Hospital. Following the visit, I was asked if I could “stick around for a bit” since something was unclear on her echocardiogram.  That “something” turned out to be subaortic stenosis, a life-threatening condition.  So in the fall of that year, Christine went to school for a couple of weeks to meet her new teacher and classmates and then left to have open-heart surgery.  She did not return until January.

I could go on for pages and pages about what ensued; I’ve even thought about writing a book with her or about her.  On Sunday we celebrated the fact that she is the survivor of 5 open-heart surgeries, the most recent ones having taken place three months apart nearly three years ago.  She has, therefore,  had open-heart surgery almost every 5-7 years of her life. Imagine trying to live your life with that kind of interruption every five to seven years.  Imagine the impact on your family, your school years, your ability to maintain friendships and to obtain and keep a job.  Never mind the impact such a life has on your heart and mind. We have been through all the psychological ups and downs of living such a life; to say it hasn’t been easy is the understatement of the century.  But despite all the fears and anxiety, pain and suffering, worry and wondering, we are still an intact family with a daughter who is a super-hero to us all.

I have learned so many things from her bravery, her moments of doubt, her refusal to give up on some of her dreams (which included graduating high school on time and attending the University of California at Santa Cruz, both of which she accomplished through sheer willpower). Despite her many ordeals she says she is grateful that she can leave the hospital and resume her life, while so many other patients never get that chance.

We have learned as a family to make the most of every day, to not dwell on the dark side since to do so takes energy we need for better things, and to be compassionate toward others as well as ourselves. I wouldn’t wish her life or ours on anyone, but as she always tells me: “If this has to be my life, at least I have you as my mother.”   Need I say more?

Advertisements

9 thoughts on “My Daughter, My Hero”

  1. Yours and your daughter’s story are inspirations, lessons that make us pause to reflect on the priorities of our lives, to stop the whine and the worry, and enjoy all that we have. I’m happy that your daughter gets to leave the hospital too, and that she has you as her mother. Lovely to hear your story.

    Like

  2. As a parent, I can’t begin to imagine what you have been through with Christine, who is clearly an amazing lady, like her mom! I hope you do write that book. It would be fascinating to have your perspective and Christine’s in the same book. When we are going through tough times, as young people, we don’t know what that does to our parents. Now that I am a parent, I can imagine the fear you must have felt while needing to be a reassuring, strong presence for Christine. My worst fears, the ones that stop me in my tracks and make my heart race, the ones who find me when I lay my head down at night- they are the fears that something will happen to my children. Typing this, I cry, just from the horrible idea. I think of the parents of Sandy Hook often and the parents of the sick children who struggle and don’t make it and I can’t imagine how they survive that type of pain. To know that every 5-7 years you had to see your beautiful daughter face life threatening surgery and to be the hopeful, inspiring family you are is such a testament to your character and strength. I’m so glad that, as Barry Manilow sings, you made it through the rain.

    Like

  3. Thank you for sharing your story. You and your daughter are remarkable people and an inspiration. You should consider writing your story. I am sure someone starting out on the road you two have traveled would be very reassured by it.

    Like

  4. Life hands us obstacles on our journey and you have conquered each and every challenge. What an inspirational story! Your daughter’s outlook on life is one we should all have.

    Like

  5. I’m speechless. God bless all of you and may you all have many, many happy and healthy years to come! Your daughter is brave beyond words and you are blessed to have one another!! Thank you for sharing this!
    Much love to you!

    Like

    1. I thought it was time to let you in on a few significant details of my life! It’s been a long, rough road but we’re glad to be alive. How’s that precious baby of yours? And how are YOU doing?
      Are you much involved with NYS TESOL these days?

      Barbara

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s