Sunday, August 29, 2010

Seth's story, Our story

Every Heart Has a Story

I discovered the blog "When Life Hands You a Broken Heart, Create HOPE" on Facebook. For the past week, she has been hosting "Every Heart has a Story". I have shared parts of Seth's story before so I'm just going to offer a bit of a summary.

The story of Seth's heart: Seth was born on March 27, 2008 with Hypoplastic Left Heart Syndrome (HLHS). We knew prenatally and were expecting surgery, etc when he was born. Seth was put on prostaglandin and had apnea attacks requiring oxygen from the beginning. We were not able to hold him much before surgery or at all for two weeks after surgery. Recovery was bumpy but not Hugely eventful. Seth came home on May 17, 2008.

We were all together as a family for the summer of 2008. We were able to love on Seth and get to know him. The story of Seth's heart is also the story of a sweet little boy. A little boy who smiled for the first time at his two year old sister. A little boy who cooed and giggled as his big brothers leaned over the bassinet to talk to him. A little boy whose family had dreams and hopes for him and our future together.

Seth's Glenn surgery was on Sept. 11, 2008. Surgery went well but he was not able to be extubated easily. He coded on Sept. 17, 2008, suffering neurological damage. The extent of the damage was not fully known for a couple of weeks. On October 2, 2008, we made the difficult heart wrenching decision to discontinue invasive medical treatments and keep Seth as comfortable as possible for as long as we had him. Leland and I moved into the hospital, the big kids, especially the boys, came up and visited a few times.

On October 12, 2008, Seth went from my arms into the arms of Jesus. He was buried on October 16 and we said our final "Until we see you again" on October 17th.

But here's the main thing I want to share. That's not the end of Seth's story. It may not be a dramatic story. We don't have a foundation to spread awareness like the Chloe Duyck Memorial Foundation. Or save lives like Cora and her mom do with Cora's Story. I take Kleenex boxes to the hospital to encourage other families in PICU who need a "soft cry". In March of 2010, we did the first "Something for Seth" collecting blankets, onesies, socks, and other touch-of-home supplies to encourage families in the PICU.

Seth's story lives on. And it lives on in the heart of me, a mom figuring out how to live without her baby (still, two years later), a mom figuring out how to glorify God even in her hurt.

Seth's story lives on in the heart of his daddy. A dad who was strong and brave when the mama and the siblings need him to be. But is broken and tender when he needs to be. A daddy who is striving to live as a man of God.

Seth's story lives on in the heart of Sean. A big brother who loved to lean over the bassinet and make his baby brother smile. A big brother who does his best to hide how much he misses his little baby brother so he won't hurt the feelings of the mama.

Seth's story lives on in the heart of Cary. A brother blessed enough to have a big brother and a little brother and sister. A brother who asks to have a few moments alone at the cemetery so he can cry and miss his little brother.

Seth's story lives on in the heart of Kayleigh. A little sister who is a big sister, except you can't tell that by looking at our family. A girl often called the youngest but she knows she's not. A darling sister who speaks often of her "baby Sef" and seeing him in Heaven.

Yes, every heart has a story. Seth's story is also part of the story of Kayleigh's heart and Cary's heart. Of Sean's heart and Leland's heart. Seth's story is and will always be a part of the story of MY heart.


Stefenie said...

This was beautifully written. Thank you for sharing Seth's story. I am very sorry for your loss. It is great to hear that you have taken your grief and turned it into something good....Seth's legacy will live on.

Thanks for joining my blog event.

Holly said...

I'm glad that you got to share Seth's story!! It's so nice to be able to share our children with others.

Karin said...

Thanks for sharing again. Now YOU are making ME cry.. But you are so right, the story of Seth did not end with his way too early death. He lives on through you and through your family, who you are and what you do. Hugs!

Kelly @ Sufficient Grace Ministries said...

Seth's story is beautiful and you told it perfectly. His story lives on in the lives of everyone touched by his precious life. And, you honor him with such grace and beauty everyday. Thank you, for being the person God created you to be, sweet Kathryn. And, thank you for telling Seth's story.

I am featuring you on Walking With You this week. My blog traffic is way down, so I'm not sure how many people will stop by, but hopefully some do, and have the privilege of learning more about your beautiful Seth and his sweet mama! I know that "knowing" you both has blessed me immensely.

Love to you...

Kim @ Peace of my Heart said...


I'm here from WWY and have to tell you that your story has touched me deeply. Having lost my 3 month-old daughter a year ago (we had to make a similar heart-wrenching decision), I've guarded my heart fiercely against feeling too much when it comes to others' stories of loss. It just hurt too much. But Seth's story has gripped my heart. Thank you for sharing it so very beautifully.

Blessings to you,

Cecilia said...

I'm stopping by from Walking with You and recognize you from Kelly's blog. It is a privilege to know Seth's story. I admire the way you continue to honor Seth and his place in your family!

crystal theresa said...

This was so beautiful - it brought tears to my eyes. Thank you for sharing Seth's story. This reminds me of a poem by E.E. Cummings, which says "i carry your heart (i carry it in my heart)."

<3 to you.