Friday, February 10, 2012

CHD Awareness Post #2

I had planned to post a bit more during CHD Awareness week, but our internet has been iffy, so posting hasn't been possible. :-P Today I'm going to repost something I wrote when Jethro was just months old.

The thing about heart defects is they change everything. Everything that as parents we take for granted and don't really think much you think about wonder if they will be. When you have a child with a heart defect, it turns your world upside down...and it takes a while to get your bearings back and feel like you are on an even keel once again. Here are some thoughts I had as I was beginning this journey with Jethro.

Confessions of a Heart Mom

Hi. My name is Tracy, and I'm a heart mom. I was thrown into the world of Congenital Heart Defects (CHD) in late October 2009, when an ultrasound revealed that there was a problem with our 10th child's heart. One of the most shocking things that I have learned is that CHDs are the #1 birth defect, affecting approximately 1 in every 100 babies. CHDs also kill more children than any other birth defect or cancer. I have been having babies for 20 years and I never knew that ~ until I had a baby with a CHD.

Some babies have CHDs that are "easy" to live with and some have CHDs that are incompatible with life, and some are somewhere inbetween, but they all change your life as a parent and as a family. Our son has an incompatible with life diagnosis. Only by the grace of God and the hands of skillful surgeons willing to take a risk is he alive today.

One of the many ways that a CHD changes things is in the hopes and dreams you have for your child. Now, instead of dreaming of the day when he grows up and marries, I think of tomorrow and pray he's well enough to stay home. My prayer is for him to survive and have a good life, and although I still certainly hope for a long life for him, I know the reality may be much different. Many babies born with CHDs do not live to see their first birthday. And that knowledge changes things. I cherish each day with him in a way I never did with the other children. Not because I love him any more, but because the reality that his life will be short is so very *real*.

Before, our lives were filled with the rhythms of home ~ cooking, cleaning, school, reading stories, caring for, they are filled with Dr appointments, hospital stays and charting and dosing out medicines every day.

Before, we raised our children, bandaging their owies and nursing their illnesses knowing they would once again be whole. Now we have entered the world of Palliative care, knowing that no matter what is done, this son will never be well, he will never be whole. There is no making this better.

And yet, I am thankful. I am thankful for the wonderful people who we have met on this journey: the ultrasound tech who did the majority of Jethro's ultrasounds, and likely saved his life, the outstanding, caring cardiologists who look after our son and his heart, the wonderful nurses who care for him and remember him from one hospital trip to the next, and the supportive, knowledgeable, passionate folks who make up the CHD family. I am thankful for my son, a warrior in a battle that is likely not winnable. I am thankful for the privilege of being his Mama and walking this path with him. To see how God has used this one, small life to touch so many and bring them together in a common cause. But mostly, I am thankful to my Heavenly Father, for loving us enough to walk us through this valley. For drawing us close to Him when we are afraid and hurting, and bringing us peace and comfort in the midst of it all.

"Even though I walk through the Valley of the Shadow of Death, I will fear no evil, for You are with me." Psalm 23:4

Jethro Storms Dole
February 2010
Born with Ebstein's Abnormality of the Tricuspid Valve and Pulmonary Atresia

1 comment:

  1. Your words touched me - it was as if you have been in my heart...Fellow Heart Mamma! We too have a son with CHD - We are praising God, he just turned 16 and recently had his 4th open heart - yet doing amazing. I know he does not have the same defect as your precious son, yet I can relate to your feelings and assure you that God pours out to you the strength for each day, hour or minute needed to face your challanges. Having a son with CHD does change your world and perspective but it also, as you said opens your eyes to blessings one never saw before! God bless you with the peace that surpasses all understanding!