Moving On

When we were anticipating Zachary's birth, we discovered a whole community of heart families who were documenting their children's journeys via CarePages and blogs. Eager to learn more about my son's condition and his future prognosis, I became engrossed in these children's stories and very fearful of Zachary's fate. The doctors at his hospital cautioned us about these online journals. "Those are the sick kids. What you don't read about," they explained, "are the majority of kids who have made it through their surgeries and are living a relatively normal life. Their parents are too busy, and their lives too normal, to write about. They are through the critical early years and are moving on."

Now, so are we.

Finally, I feel like I can breathe a sigh of relief. Finally, Zachary seems to be out of the woods, at least for now. Finally--and for the first time ever--Zachy's oxygen saturations measured a perfect 100% at his cardiologist check-up in mid-January!!! Finally, when Zachary throws his little two year-old tantrums (and he demonstrated a real good one tonight when we said "no more pop") he turns beet red, not pale blue. Finally, we are watching his scars fade and stretch, and are praying that they will never again be opened, that someday his dark and later gray chest hair will hide any trace of the rocky beginning he had in life.

We are moving on.

We are the lucky ones--one of the families whose child made it through. Who now reach for the Kleenexes but not the oxygen when Zachy catches a cold. Who laugh at the spectacle of our two youngest boys wrestling on the living room floor. Who thank God that Zachy can laugh, run, and throw a two year-old tantrum without the threat of losing consciousness. We are the family who thanks God for the mundane, and who gladly accepts the stress of raising five little boys (and one very ornery puppy) over the fear of a very sick child. We are the family whose mommy is simply too busy to document Zachary's journey like she once did. We have made it through his critical early years, and...

...We are moving on!

Over the next month we face another challenge, one that will again change our lives and hopefully bring us even closer together. We are leaving our home of ten years in the hopes of a little more space for the boys, a little quieter neighborhood, and a little more peace of mind for Mom and Dad. We opted for a bigger, fenced yard and a roomier house in town, on a quiet cul-de-sac with plenty of neighborhood children to keep Zachy and his brothers entertained. We are overwhelmed by the enormous task of packing, moving, and leaving the only home our boys have ever known. But we are thankful that we have reached this point as a family, where we can get past Zachary's touch-and-go health and forge ahead to tackle new, more common challenges.

And though we are moving on, we often look back on the past couple of years and remind ourselves just how blessed we are to have experienced them together. And we remain committed to helping improve the lives of all those touched by CHDs (congenital heart defects.) So as you look forward to celebrating with your sweetheart next Monday, take some time to celebrate CHD Awareness Week (February 7-14.) Continue to pray for Zachary and the thousands of children and adults who suffer from CHDs--the most common birth defect. Remember especially the families of children who lost their battle, and of those who are still fighting and looking forward to the day when they, too, will move on...


Comments

  1. It is great to hear how well Zach is doing and that you are able to feel good about moving on. It is quite a milestone to reach with these kiddos when the biggest worries are behind them! Praying for you!!

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  2. This wonderful post brought tears to my eyes! And, that last picture, that can't possibly be little Zachy! Amazing!

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  3. Zach has gotten so BIG! Oh, how happy it makes me to read that his sats were 100% I'm so ready for that day...or the day where they're at least in the 90's! :)

    Thanks, Zachy, for bringing us such HOPE!

    Now don't move on too far, we'll miss you too much!

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  4. Dear Michelle,

    We need your help! In 2009, Genetic Alliance was awarded a cooperative agreement to implement sections of the Prenatally and Postnatally Diagnosed Conditions Awareness Act. Through this agreement we launched the Congenital Conditions Program, a program that focuses on connecting families who receive a diagnosis for their child prenatally or within the child’s first year of life with information and support. We are currently developing multiple publications for this program; one of these is a compilation of stories that focuses on receiving a diagnosis of a congenital condition.

    Genetic Alliance needs your story about receiving a diagnosis of a congenital condition for this compilation! We recognize the importance of sharing stories as a way to share one’s experiences and believe that yours will make a great addition to the publication. By collecting such stories, we believe we will obtain an understanding of the strengths and weaknesses of the current system of information and support for families receiving a diagnosis and where improvements might be made in the future.

    You can learn more about the Congenital Conditions Program and the stories compilation at www.geneticalliance.org/congenital. All stories must be submitted be February 28th. To find out how to share your stories for inclusion in the publication, please email Alyson Krokosky at akrokosky@geneticalliance.org.

    Thank you,
    Elizabeth

    Programs Intern
    Genetic Alliance | 4301 Connecticut Avenue, NW | Suite 404 | Washington, DC 20008
    Phone: 202.966.5557 x240 | Fax: 202.966.8553
    etrandel@geneticalliance.org | http://www.geneticalliance.org

    ReplyDelete
  5. Hello-

    I recently came across your blog and wanted to reach out to you in hopes of you posting about an event that we're particularly excited about at Primrose Schools.

    I have an article/event that I would like to submit that is about dancing and how it relates to fitness. Primrose Schools is hosting a Dance Off competition (with proceeds going the Children's Miracle Network Hospitals) for families and I think it is something you and your readers would enjoy!

    I look forward to hearing from you!
    Thank you,
    Emily Patterson
    epatterson@primroseschools.com

    ReplyDelete

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