Seth's story, Our 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.

I've been mislead..

Somewhere in my life, I had the perception that Sunday afternoons were supposed to be relaxing. This afternoon was not relaxing.

How could it be relaxing? It involved an Emergency Room visit AND a 911 call over two separate issues.. Who does THAT happen to? Let me fill you in!

It all started when our sweet little girl decided she was going to open the big garage door ALL.BY.HERSELF. Daddy said the door opened and Kayleigh disappeared. Yeah, cause she was in the house crying to me. "Blood, OWIE, waahhh" etc. The best we could figure out? She opened the big door, and in the process, got her fingers run over on the track.

Now, Kayleigh's usually pretty tough. So for her to carry on about pain is sort of a red flag. Leland and I were debating if we needed an Emergency Room visit. I decided to take Kayleigh for a drive and see if I could calm her down. In the meantime, Kayleigh has decided SHE needs to go to the doctor.

On the way up to the hospital, she alluded to something about seeing Seth. "Kayleigh, you remember baby Seth is in Heaven, right?" By the time we got to the ER, and got triaged, she was doing much better. I decided we didn't need to be seen. "Kayleigh, I think we can go home now" "Okay. But not until we see baby Seth." ::::Sigh:::: We decided to go upstairs and visit our friend baby Jethro. Jethro has tricuspid atresia, hypoplastic right heart syndrome and just had his Glenn surgery last week. He's currently in the same room Seth was in post-Glenn. But that's an entirely different post.

So Kayleigh and I visit Jethro, and a bunch of PICU nurse friends. We have a treat in the cafeteria. I offered ice cream. Kayleigh chose broccoli, carrots, cherry tomatoes and cucumber from the salad bar. Whose daughter is she???

So after a somewhat emotional visit, Kayleigh and I headed home. So we're in the van. We stop at a red light about 3 cars back from the light. I notice the driver in the SUV at the light stick his arm out the window and motion to the car next to him, that "come here" motion. A guy jumps out of the passenger side of the car next to them and before I know it, they are rolling around in the middle of the street and fighting. Meanwhile, the light turns green. No one can move because these are the two vehicles at the front of the line. I called 911. By the end of my call, the operator said that they were receiving several calls.

So THAT was my adventurous Sunday afternoon.. So much for quiet and relaxing, huh?