Middle of the night musings...

I haven't been feeling well. I slept for HOURS upon HOURS yesterday. Tonight, sleep won't come easy.

I am sitting here, in the quiet of my house, in the middle of the night. My brain is whirring and many thoughts are coming to me...

Thoughts of Seth.

Thoughts of Cora. Cora died in her mother's arms at 5 days old from an undiagnosed heart defect. Cora's mom, Kristine, spreads Cora's story and saves lives.

Thoughts of Kaitlyn. Kaitlyn died last week in the arms of her parents. She had HLHS (like Seth) and was also a stroke survivor. Her little body fought long and hard (Kaitlyn was 3) and she ultimately couldn't overcome the lung clot that took her life.

Thoughts of Dakota & Mizuko. Dakota entered our world still years before I came to know his mama.. and his baby brother, Mizuko, just recently entered his parents' realm and left all too soon. Kara helps other hurting mamas become comfortable again in their own skins. Or at least that's what she's done for me.

Thoughts of Ewan. Ewan had a congenital heart defect with severe complications. He graced our world for 14 days. His mama has beautifully shared him with so many people she doesn't even know.

Honestly, Ewan's mama is mostly where my thoughts and heart are. We've never met. We just recently became facebook friends. She lives closer to me than most people I've met in the CHD (Congenital Heart Defect) Community. But at the same time, she is across the state. Too far for me to go and sit with her in silence. And so I sit, these hundreds of miles away. But I want her to know..

I want her to know that sweet Ewan will not be forgotten. That her bravery and honor and grace are noticed and esteemed. That other mama's know, she fought the hard fight, and we know the anguish she feels now that the fight is over. But mostly I want to thank her for sharing her little warrior with the rest of the world.

Ewan Eliezer means God's grace and God is my help. God's grace and help was with Ewan. May it be with Kirstin. May it be with us all.

As we sit in silence.

I want to want to...

And no, that's not a typo in my header. I'll get to explaining that in a moment. First, I am hosting In Other Words Tuesday again! And I'm late because the holiday threw me off. So upward and onward we go:

Stop fighting, stop resisting, stop complaining and start trusting your sovereign Heavenly Father; refuse to worry.

~Chip Ingram

When I first saw this quote, what really caught my eye was: start trusting... refuse to worry. I remember thinking, somewhat arrogantly, "Oh, yeah, I've got that down. I trust God, I'm not worried about much of anything anymore." This was probably four months ago. I don't know if I was in a better spot then or just ignoring my problems. I mean, I don't really worry much since Seth went to Heaven. I tend to lean along "I certainly don't welcome loss, but we've survived it by the grace of God.". But these days, I am very convicted by the beginning of that quote:

Stop fighting, stop resisting, stop complaining. I try not to complain much. I would say that i am moderately successful at that. But oh, I fight, and I resist. As we approach the two year anniversary of Seth going to Heaven, I still fight and resist this path. On a regular basis, I find myself pleading for my baby. And God speaks to my heart: Stop Resisting. Start trusting your sovereign heavenly Father.

Start trusting my sovereign heavenly Father. Here's my take on that. I know that we live in a fallen sinful world. Things happen, like babies being born with broken hearts, as a consequence of sin in this world (not necessarily MY sin, that's not what I'm saying, sin overall). BUT if I believe our Lord is sovereign, and I do, and if I believe that sovereignty means our Lord has power over all, and I do, then I must believe that things unfold in this world the way they are meant to under God's sovereignty. Which basically means, things are exactly as they should be. And that, my friends, I fight and resist and complain. Because I fail to trust God.

I fail to believe that all things happen for the glory of God. That my heavenly Father is the redeemer of all situations. I fight and resist and carry on instead of trusting. But, here's the other part of it. I WANT to trust. And on days when I can't bring myself to lay down my longing for my son, I simply want to WANT to trust God. God knows that I am a mere fallen human living in a fallen world. He holds me up so that I am able to trust Him. But it is MY duty in that to stop fighting, stop resisting, stop complaining and refuse to worry. I trust in the Lord, and rest in His peace.

"You, Lord, give true peace to those who depend on you, because they trust you. So, trust the Lord always because

He is our rock forever."

~Isaiah 26:3-4

Please link up and share your view on today's quote.

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?

IOW Tuesday - Suffering People

It's time to host another "In Other Words Tuesday". Does this seem like the only time I post? I'm sorry about that and I"m going to try and do better! For my turn to host "IOW Tuesday", I have miscellaneous quotes floating all over my house. (Literally, little scraps of paper that wind up wherever). About the time Loni starts to nag ask nicely for my quote, I dig one up. This month, Loni asked, I started to panic about finding my pieces of paper and a friend of mine put a quote on Facebook that I HAD to use!

To be honest, I'm not quite sure where to start with this quote. Except that I KNOW it to be true. I have been on both sides of this coin, sometimes both sides at the same time! When Seth was dying, my co-worker, Cathey, and her husband, Keith, just came along side us. (JUST!). They had lost a son 20 years ago, at 18 months of age. I remember that I looked forward to Cathey coming up to the hospital because she GOT it. I could literally tell Cathey ANYTHING and often did in a walk around the hospital grounds. In my suffering and brokenness, Cathey came alongside and shared from HER heart and her previous suffering. God used HER as an ambassador to meet my needs.

More recently, I was given the opportunity to minister to someone. (Except of course, as God would have it, it was again a mutual ministering). Awhile back, I heard of a baby born at Sacred Heart with a very severe congenital heart defect. I'm not even sure how it happened at this point but the mom and I friended each other on FaceBook and eventually I went up and met Tracy and Jethro at the hospital. And here's the "God thing". Tracy lost a baby. I lost a cardiac baby. We have suffered and are able to lend each other a hand up. I LOVE how God orchestrates us as His ambassadors!

Here's the thing as I see it. It's VERY hard to live out of suffering and brokenness. Most days, I miss Seth so much that I just want to pretend I"m okay. I certainly don't want to show you my pain. A friend of ours is an acquaintance of one of Seth's nurses. A few weeks after Seth went to Heaven, my friend and this nurse met up in the super market. The nurse said that she wanted what we had. What WE had. We had a lot of pain and sorrow. But we also had GOD. Leland and I clung to God because there was nothing else we can do. And we didn't try to hide it from those around us, nurses, friends, doctors, etc, because there just wasn't any point.

I am a messy, wimpy person. I don't know what God's plan for me is, how he intends to use my life to bring Glory to Him. I am just extremely grateful to be along for the ride!

Please link up below to share YOUR take on this meaty quote! (I know I didn't do it justice and I can't wait to see what others have to say!)

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In Other Words Tuesday

Faith saith not 'It is good for me,

so God must have sent it' but rather

'God sent it, so it must be good for me".

Phillips Brooks

I've been seeing a counselor off and on for several years. More on, of course, since Seth went to Heaven. In the past year, I also started seeing the nurse practitioner in his office (for anti-depressants). She has a basket full of quotes on little pieces of paper and every time I see her I get to pick a "thought for the day." I usually go through the basket until I find a thought/quote that resonates with me. Last visit I picked the quote you see above.

It's a hard quote to wrap your brain around, isn't it?

(I am going to be fair to myself.. I need to go to bed. I'm posting this as is, so others can link up and will edit in my thoughts Tuesday as soon as I can. Sorry for the delay) (Grateful for the break I took as it helped me get my thoughts more together on this!)

I think it is important to acknowledge that part of faith IS recognizing the good things from God. I talked about that in another In Other Words Tuesday post - Messages from God. I know people, good God-loving people, who admit that they aren't always quick to acknowledge God in the little "coincidences" in their lives. We recently did Something for Seth. I told a friend last week (prefaced with "I know this sounds ridiculous to you") that when I put that request for items on my FB page and my blog, I was secretly afraid there would be no response. Saturday evening would find Leland, I, and the paltry few things we could gather, up at the hospital. I need not have worried. God used my many friends and family to BLESS our socks off (and consequently the hospital staff) with an AMAZING turn out. (Blog post to follow soon with pictures). I think it's important to have faith for and acknowledge God in the "good" things. But that's not the meat of this quote is it?

"Faith saith.....'God sent it so it must be good for me". Think about that for a moment. Regardless of what it is, God sent it, so it must be good for me. Wow. I can think of lots of things where "it must be good for me" is not the immediate reaction; cancer, death of a spouse, infertility, miscarriage, loss of a child. So let me address how that has fit into MY life, in the past and recently. (You might want to get a cup of tea, I think I'm going to get long winded).

Fourteen years ago, more or less, Leland and I decided it was time to start a family. (Did you catch that? WE decided. Neither of us was in relationship with the Lord at that point.) We got pregnant fairly quickly, found a doctor, things were swimming right along. At about 11 weeks, I started spotting. Our doctor was fairly reassuring but ultimately 10 days later an ultrasound diagnosed a miscarriage. To say I was devastated would be an understatement of pretty good proportion. I literally felt like the world tilted on it's axis. For weeks, I felt as if I was walking around upright and the rest of the world was at a 45 degree angle. And I was angry. Boy, was I angry. I don't do anger well so after that, I was depressed. I was a mess, for a YEAR. I couldn't understand WHY God would let us get pregnant right away (good!) and then take our baby away (good????). But, here's the crux of that situation; somewhere in that year plus of being angry at God, I started seeking God, and more importantly, finding Him (good!). I now look back and directly credit that miscarriage experience with bringing me into relationship with God (VERY good!). "God sent it to me, so it must be good". Okay, so I can see that fourteen years ago, what about two years ago?

A little more than four years ago, our 3rd child, our first baby girl was born. And I remember looking at her, the first time I held her, and thinking "Our family could be complete now". (good!). A little less than three years ago, we found out we were pregnant again! (Unexpected, but still good!). Then we found out something was wrong with the baby and, almost exactly two years ago, Seth was born with half a heart. Good?? Hard to see but I could find it there. Seth struggled after his first open heart surgery but he did okay. I was able to be a friend to a new mom whose baby had a heart defect. I could pray that the nurses and doctors saw God as our strength. I could see good in that.


Seth only spent 200 days with us before God called him home. (Good??????) This time the good was hard to find. It's been hard to find. So I've done a few things.. I've realized over the course of the last fourteen years (and especially the last three) that God's definition of good and mine are not the same. For one thing, God created the world and "saw that it was good" (Genesis 1). God has a WAY bigger perspective than I do. That's one way in which the last fourteen years have been a blessing. Because of that miscarriage, horrible as it was at the time, I can look back and SEE God's good in it. I have a teeny bit of big-picture perspective. Granted, that doesn't go a long way in helping me see good in not having Seth here with us. But that's where FAITH comes in. I don't in my own power and will have the ability to see everything as good. I do have the faith that God is good and "we know in all things that God works for the good of those who love Him, who have been called according to His purpose." (Romans 8:28). I don't quote that glibly. I have struggled.

One of the things I have had a tendency to do is weigh the good I've seen against the bad I've seen. For instance, while Seth was recovering from an open heart surgery he endured at only five days old, I was able to minister to a new mom. I can see good in that.. That ones a bit easier because Seth came home at the end of that time. I've met and been able to be a friend to and with other moms who have lost children. Okay, well.. I've been able to do good by sharing Seth's story with nurses and student nurses.. We did "Something for Seth".. And you know what, in my humanness, those do NOT outweigh the bad of losing Seth. I'm glad for those small goods but I would trade them in, in a heartbeat, for the big good miracle of having Seth healed and here. But you know something that should be obvious and took me a ridiculously long time to recognize? I DON'T GET A CHOICE.

It doesn't really matter one way or another if I think the good is enough, it's all there is. So again, enter FAITH. If God reigns in my life, then things in my life are exactly as they SHOULD be. God does reign in my life. And "God sent it to me, so it must be good". God sent us Seth with half a heart, God knew, FROM THE BEGINNING of time, that Seth would have 200 days on this earth. And because he came from God, it must be good.

Don't get me wrong here; I do NOT have this all figured out. Many days, I know this in my head and struggle in my heart. Many days I can't see the good and I just want my baby back. God is gentle with me and we'll get through it together. THAT is faith.

We rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. (Romans 5:2-5)

I miss Seth every day but I DO have hope. I have greater hope partially because of Seth's heart defect, because I know that I can, with God, persevere until we can be together again. And THAT is the BEST good of all!

Happy 2nd birthday, Seth!

Seth would be two today. We sang Happy Birthday this morning; Cary, Kayleigh and I. Sean is at a Bible Quiz meet out of town and Leland was already working. Kayleigh laid out a spread of cookies and pop and strawberries and sugar snap peas and baby carrots at 7am. Later today Leland and I are taking the "Something for Seth" items up to the hospital, visiting nurses, and going out for dinner.

I wanted to share more, but I just can't right now. So I'm going to leave you with a couple of videos FB friends of mine have graciously made. (I hope the links work).

The first video uses select pictures and begins with the song I used to sing to Seth:

Make video montages at www.OneTrueMedia.com

This one is almost Seth's life in pictures!

Make video montages at www.OneTrueMedia.com

We miss you sweet boy and love you very much!