Friday, December 10, 2010

God never fails.

God never fails. God NEVER fails.

"Help me, Lord, my God. Save me according to your unfailing love." (Psalm 109:25-27)

I know this. Even when Seth died, I KNEW it was not a failure on God's part. I don't claim to understand how God works. And I admit that in the hurt that followed, I haven't always done a good job (or even a mediocre job. Or sometimes even something that would qualify as a poor job) of trusting God. Yet, God is gentle with me.

"Though he brings grief, He will show compassion. So great is His unfailing love." (Lamentations 3:32)

God never fails to show me His love. He never fails to use our journey with Seth to bless me.

This week, I had two opportunities to share Seth's story. On Thursday, a friend did a presentation to her class, a group of students learning to be heart cath. technicians. She did HLHS and presented Seth's case. I was invited to come observe and given the opportunity to speak which I appreciated greatly.

On Friday, I was part of a parent panel presenting to a group of student nurses. We share the stories of our infant loss in the hopes that they will be prepared to be more compassionate as nurses. And, as usual, God blessed ME!

I have a dear friend, Diane. Diane and I haven't spoken for a VERY long time. It was just one of those situations where we've lost touch. We share the same birthday (not birth year, she's like a big sister to me) and I think of her often, especially lately. She lost a sister in childhood so while she doesn't have children, I know she understands great loss.

So, I'm leaving this nursing class on Friday. In my car, headed down the road. As I'm making a left turn, I stop for a pedestrian. I wave her across the street and realize, it's DIANE! Making a long story not any longer than it needs to be, I drive around the block, park and FIND her inside the building! We exchanged phone numbers and are going to have lunch over Christmas break.

I know, a lot of people would say "what a nice coincidence." But I don't believe in coincidences. "Be aware of the coincidences in your life, for they may be small miracles". I believe in God-incidences! God used that moment, which I wouldn't have been in if not for Seth, to reunite me with an old friend. And I am blessed for it!

"Let your face shine on your servant; Save me in your unfailing love." (Psalm 31:15-17)

Thursday, November 25, 2010

Lest we think I'm "over it"...

Today was hard.

Yesterday, Leland and I went up to the hospital. The PICU was out of Kleenex. Personally, any family in PICU over Thanksgiving deserves soft Kleenex, in my opinion. So we ran up with some candy (chocolate and licorice) for the nurses and boxes of Kleenex for patient's families.

I did okay there. I was able to tell them "Yes, I'm doing well. WE're doing well...... The kids are great... I am looking foward to the holidays for the first time in years."

Later in the afternoon, I met my sister & sister in law at the mall for our traditional "all" the grandkids Santa picture. And that part of yesterday sucked.

And today was hard. I basically threw a temper tantrum this morning. And I knew it. I was, I am, missing Seth. Holidays all about family are more difficult now. I suppose there's just no way around it.

I am trying to figure all this out. God is faithful. I know that. He holds us in the palm of His hand. Even when I'm hurting, I can manage to be thankful for that.

Happy Thanksgiving, Friends.

Sunday, November 21, 2010

Missing him...

Today is a missing day.

Today we celebrate Thanksgiving with my side of the family.

My sister is here from out of town with her son, Jack. My brother's family lives here in town. So we will gather, 3 out of 4 of my mom's children (only 1 spouse... Leland's working, Tom, my sister's husband, didn't travel with them). "All" of my mom's grandchildren. Except of course, Seth.

And the kids will play together. And there will be laughter, and wine, and food, and games.

And if anyone else feels the absence of our youngest son, the youngest grandchild, the youngest nephew, no one will say anything.

As is usually the case, I will feel alone in my missing.

Saturday, November 20, 2010

Six Words Saturday

Even with joy, Grief's still present.

I stand by my last post. (The one immediately below this one.) I am doing much better, and it's a testimony to God's faithfulness to have joy back in my life. But I still miss Seth.

Today, my heart hurts.. One of the most difficult issues for me has been trying to find a "balance". To miss Seth and still feel joy. To feel joy and not think it sends the message to the entire world that I'm "over it". I'll never be "over" it. There will always be a hole in my heart.

Even with joy, Grief's still present.

Link up to Cate's "Show My Face" blog and leave your own 6 word Saturday post.

Thursday, November 18, 2010

An Open Letter...

Dear Seth,

I thought of you today.

That's no surprise. I think of you EVERY day. Every minute really. To NOT think of you, would be the surprise. Just as Sean, Cary, and Kayleigh are always on my mind, so are you. It's odd, of course. People expect me to think of Sean and Cary and Kayleigh. For reasons I don't understand, the fact that I think of YOU, just as I do your siblings, seems to make others uncomfortable. But, sweet boy, that's a post for another day.

It's different, my writing to you. It's not an unusual format. Kristine wrote to Cora. Jill writes to Joshua. Kim writes to Ewan. It's just not something I'd done, before now.

Honestly, I think it was too hard. I talked to you all the time, in my head. Oh, I know you don't hear me. I would much rather think of you playing in Heaven, at Jesus' feet, than seeing us be sad for you. I think that's part of why I didn't' write before actually. It doesn't seem "mom-like" to write you a letter about how sad we've been without you. So why am I writing today?

I want you to know, I want the world to know, that we are finding joy. Seth, I am finding joy. And as I find my joy again, our family finds joy again.

YOU know, Seth, better than I, how faithful and true God is. And God has, IS restoring our joy. YOU remain a part of that, Seth. There is joy in having been your mom, in BEING your mom. Seth, I feel like I finally appreciate what a gift you have been. I am SO, so grateful.

That, sweet boy, is why I'm writing to you. I wanted you to know. With the grace of God, blessings of God, we are figuring out joy again. Happiness is in our home.

I love you, sweet Seth, and thank God for you every day.

Missing you always, and grateful for your presence in our lives,

Monday, November 15, 2010

IOW Tuesday - Withdrawing from God

I have rarely in my life felt as close to God as I did in the time period closely following Seth's death. Psalm 34:18 says "The Lord is close to the broken hearted and saves those who are crushed in spirit." I know this to be true for I have experienced it in my own life. In those immediate days and weeks, in my desperation, I clung to the Lord and that closeness. When I didn't FEEL it, I clung to the fact that I KNEW it to be true.

As time wore on, I ceased to cling as desperately to the Lord. I became distracted by other things in my life. I had moments when I thought I could manage just fine on my own. I ceased focusing on God as often and with as much intensity.

I could justify it to myself. I had some valid reasons, I suppose. I reached a spot where we'd talk about trusting God and my response would be "yeah, that didn't work out so well for me last time." I realize that was flip and worldly. I reached a point where I hurt and felt hurt by God and I had to process that before I could move on from it. Honestly, I"m not sure I'm done yet, but I want to share this part of my journey. It's been hard getting here. It's hard to be honest about this difficult stuff and that's probably part of the reason it's been so difficult for me to blog lately.

I have a lovely "bloggy" friend, Jenni. Jenni just had her dozenth (or 13th or 10th, I could go look it up but I"m lazy, apologies to Jenni's family!) baby (which might explain why her blog is QUIET lately. Like dust bunnies taking over quiet). At any rate, Jenni had her healthy sweet baby boy just recently. But it was not uneventful. At one point, she, and her doctor, were fairly certain she'd miscarried. It would have been her 9th baby loss. And Jenni hurt and walked away from God. He wooed her back and THEN gave her heart's desire. Thus baby boy Judah. That is the reader's digest condensed version. You can read HER version here. (it's long and beautiful. Really not to be missed).

And I know this will sound crazy, but I envied Jenni her ability to turn her back on God. I hurt so much. And I didn't want to trust God. But I did. And I was/am angry. I LOVE God but I don't always like him (and yes, I KNOW how arrogant and awful that sounds). For a long time, I didn't know what to do about that. I felt like I was a coward. I felt like I was pretending to love God because I was afraid to step away.

Recently, I was reminded of a miracle imparted on my life several years ago. A few months after Kayleigh was born, God healed me of depression. God reminded me that I CAN continue to trust Him. It's not easy but when is trust easy? I am working on making some changes. I'm finding ways to draw closer to God.

God has ALWAYS been there. God has ALWAYS been trustworthy. God doesn't change. God hasn't moved away. The distance I've felt recently is created by ME. God invites me to the actions that will bring us closer. James 4:8 "Come near to God and He will come near to you."

I am making an effort to draw near to God. The only way I know how to do that is by spending more time with Him and more time in His Word. I hope you'll check back and challenge me to share what God is teaching me. I know that He will shine in amazing ways!

Please share your thoughts on the quote by Augustine! Link up below. Leave me a comment to let me know you were here!

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Wednesday, October 6, 2010

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.

Monday, September 6, 2010

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.

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.

Sunday, August 22, 2010

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?

Monday, June 28, 2010

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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Monday, March 29, 2010

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!

Saturday, March 27, 2010

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:

This one is almost Seth's life in pictures!

We miss you sweet boy and love you very much!

Something for Seth

(This is a "sticky" post. Scroll down for more.)

I wanted to be able to share a pretty flyer, etc but I'm behind the 8 ball yet again, and I don't want to not do this because I got hung up by my perfectionism!

Seth's 2nd birthday would be March 27th. I really wanted to do something to remember him this year (I didn't last year.. still too out of it, I think). So I'm doing a Donation Drive for our local Pediatric Intensive Care Unit (PICU). I figured out the other night, we had Seth for 200 days and he spent 86 of those in the hospital.. almost 80 in PICU. The nurses were a huge support and I want to somehow give back.

So on Saturday, March 27th, I'm taking supplies up to the PICU. I'm collecting the following:

Onesies, in all sizes
Socks, newborn to teen sizes
Pillow cases & Blankies
Bath & body type items for teens

If you would like to help donate "Something for Seth" (and I hope some of you will!), please leave a comment with contact info (or set up your profile so I can email back to you, see here if you don't know what I'm talking about.)

Thank you for your help! Please spread the word.

Wednesday, February 3, 2010

A Special Visitor!

We were very blessed recently to receive a visit from Patches, the bear!

Ter, at With an Angel on my Shoulder, started sending Patches around the country (and Canada) to help "patch up" the broken hearts of mommy's recovering from pregnancy or infant loss..

Patches came to me from Emmalee in Utah. She sweetly sent a gift WITH Patches:

(It's a little hard to see but obviously it's Seth's name and that's Patches up by the S. This is a digital copy. She actually sent one IN a frame! It's in "Seth's corner" at our house.)

I am so touched by how much it blesses me to see Seth's name. Thank you, Emmalee!!

And at our house, I was NOT the only one excited to see Patches.

All three of my "big kids" were excited to see Patches but Kayleigh immediately fell head over heels in love. So in love as a matter of fact...

I had the opportunity to spend a quiet day with Patches at home. Together, we took some time to remember Seth and I took the opportunity to share somethings Seth missed out on.

This frog has appeared on my blog before. This was one of Seth's "stuffies" primarily during his first hospital stay. The Chaplain reminded us of the acronym; Fully Relying On God.

When Seth was born, my sister was on a cruise in the Cayman Islands. She called when she could to check in on us and she sent Seth this sweet piggy bank from the Cayman's. (The big kids got Tshirts).

After Seth went to Heaven, I was bound and determined to do something fun with the big kids. We were blessed to be able to go to Disneyland and I've talked a bit about that trip here. While there, we were blessed to experience some real Disney magic and part of that inclulded being instructed to go to City Hall where we recieved these mouse ears for Seth. I love them, and of course, Seth never got to see them so it was fun to "show" them to Patches.

A day or two before Patches showed up on our door step, I received this handkerchief from Deb at For Your Tears. It seemed fitting to pose them together.

A day or two after my quiet day with Patches, remembering Seth, I had a quiet day with Cary. We did a few things together and so we also went by the cemetery

Because Cary was with me, he took a picture of me.. Please don't notice.. well, me!

And so I dont' have to leave you with THAT image in your head, one last picture:

Each kid insisted on a chance to hold Patches for the picture and since Sean occasionally reads my blog, I need to share his!

I really enjoyed my time with Patches. I've been negligent in sending him on but I will get him on his way to Heather's pronto. Ter, this was an amazing idea. I was surprised by how much just revisiting Seths things and acknowledging the things we have for him, in his memory, impacted me. Thanks for giving me this opportunity!

Monday, January 18, 2010

IOW Tuesday - Messages from God

A long time ago, before I was even a believer, I was browsing an "Elf Help" book. One of the pages showed an elf trying to get out a door with a HUGE stack of presents, and another elf was holding the door for him. The caption said: Be aware of the coincidences in your life; they may be small miracles. I have adopted that as a bit of a life philosophy, choosing to believe more in "God-incidences" then coincidences. And that's a big part of why I picked the quote for this week:

“Every happening, great or small, is a parable whereby God speaks to us, and the art of life is to get the message.”

Malcolm Muggeridge

I have experienced this in my every day life, in big and small things. When Seth was in the hospital the first time, I frequently visited the vending machine down the hall. Many days the Reeses peanut butter cups were what kept me going. One particular day, we'd had a rough day. I don't' remember the details of that but most likely Seth had been re-intubated. I remember dumping out my wallet, I had the right amount of change but a portion of it was pennies and I was fairly sure the vending machine didn't take pennies. I had to try anyway. I put a penny in first and heard it clink clunk all the way to the bottom. Sadly, I reached my fingers in to pull out my penny. And I found a QUARTER! I literally burst into tears, thanking God. All I needed was 10 cents and He gave me 15 cents to spare! Some people would call that a coincidence. I call it a small miracle.

After Seth passed away, I was at a conference at our church. A woman came up to me, who I didn't recognize and introduced herself. She was a night-shift labor & delivery nurse at the hospital Seth where I delivered Seth. She wanted me to know that when Seth was in the hospital, she had gone over to PICU and prayed over him at night. Coincidence or miracle?
I know that I'm still missing out on some of the messages God has to give me. I"m fully aware that I do not know it all and I have a long way to go. But here's one thing I HAVE learned. God loves me. ME. I have a friend who says "I"m God's favorite.. and so are you." THAT is a lesson I have finally learned. I've learned it because God speaks to me, in the big and small happenings in my life.

"For God so loved the world that He gave His only begotten son. That whosoever believes in Him shall not perish but have eternal life." John 3:16

Please share what the quote above means to you and link up below!

Thursday, January 14, 2010

Something silly..

Have you seen the Cottonelle over/under commericials? And the poll on Facebook? Well, I'm a member of "Team UNDER". I'm entering to win a month's worth of Cottonelle in a contest sponsored by Moms Blogger Club. Leave a comment on this post and YOU could win 1 of 10 Cottonelle gift baskets, drawing to be held January 29th.. Silly, I know. But I can't resist an opportunity to win something!

Sunday, January 3, 2010

Not Me Monday - 2010 - Vol. 1

I've said it before, and I'll likely say it again, the good thing about NOT doing a weekly "Not Me Monday"? When I finally get one up, I've got LOTS of fodder for it! I suspect you'll enjoy hearing about all the things I did NOT do over the last month and then you can head over to MckMama's blog and see what OTHERS are NOT doing!

I did NOT, shortly before Christmas, drive into a median, DEAD center, effectively killing the oil pan on my minivan. To my credit, as a wife who actually LISTENS to her husband, if I HAD done that, I would have, when the oil light came on, PROMPTLY pulled over and called a tow truck. Of course, I didn't run into a median so all the rest is hypothetical.

If I HAD run into said median (as discussed above) and required a tow truck to bring me home, I would NOT have, while said tow truck was backing minivan into garage, broke my ONLY house key off in the back door lock. Such a break would NOT have resulted in needing to call my husband to come home from work and let me in the house. That would NEVER happen. (Because I AM a former girl scout and would be PREPARED with a spare key somewhere accessible).

In addition to the above vehicle drama, if I had to drive my husband's car to church (due to, you know, an incapacitated oil pan), I would NOT have left the headlights in my husband's car on during our service. This action would NOT have resulted in having my vehicle jump started 36 hours after having had another vehicle towed. Never happen. I would be WAY more careful than that vehicle-wise.

Heck, I could call this the Not-Me-Monday vehicle edition.. I think I'll stop there. And save up more fodder for next week! Head on over to MckMama's and see what others have NOT done over the past week (or longer).

Feeling Sad...

Loss is hard. Any loss of a loved one is hard. Losing a child, I sometimes believe, is exceptionally difficult because it is so unnatural. One of the things I've really struggled with is finding a way to keep Seth alive for our family. Yes, he is in Heaven now but he was still here; he was still Sean's little brother, and Cary's little brother; he still made Kayleigh a big sister. It is extremely frustrating to me when people refer to Kayleigh as our youngest.. She is NOT our youngest child..she is not the "baby". EVEN Kayleigh can tell you we have "Baby Seth in Heaven".

I am coming, rather slowly, to the painful conclusion that outside of my immediate family, and some extremely understanding friends, people are not going to join us in remembering Seth. I am still looking for ways to memorialize him in our lives. I have a few things floating around in my mind.. maybe a "supply drive" for the PICU at our hospital for his 2nd birthday the end of March. But sadly, I don't believe my extended family will be joining me in most of those efforts.

We were at a family members last night.. and they have an ornament on their tree that I assume (based on past history) was a gift from another family member. The ornament looks a lot like this:

The ornament I saw is dated 2009. And it has more snowflakes. Seven snowflakes to be exact. And the names on the snowflakes? My kids and their many cousins... Noticeably absent from the ornament? (To me anyway) Seth. I keep thinking that they must not know how much it hurts me to see Seth left off and out..

Remember the "Seth bear" we chose to include in our Christmas pictures? Let's just say that the extended family portrait didn't' work out as well and leave it at that..

I'm finally realizing that I am not going to be able to change it. I can't make them remember with us. I can't change it. Not being able to talk about Seth or acknowledge him with the people who love us, it's kind of like losing a little bit of Seth every day....

Saturday, January 2, 2010

TSMS - An open letter to Third Day

I haven't done a "Then Sings My Soul Saturday" with Amy at Signs, Miracles, and Wonders for quite awhile.. I'm trying to get back into blogging.. Still figuring out what this looks like now that I feel "better". Still missing Seth and trying to figure out how to remember him and honor his life. One of the things I realized is that I tend to hold back on sharing. I have this fear that I"ll run out of things to share and regret having used them all up. Yes, I realize how silly that sounds and I'm making an effort to challenge that thinking myself. To that end, the song Tunnel by Third Day was a hugely impactful part of our journey with Seth. I had the opportunity (through a bloggy friend) to send a letter via email to Mac Powell of Third Day. I did that and I thought I would share the letter here as well. First, the song:

And next, the lengthy letter (which also serves as a recap to Seth's story):

In August of 2007, my husband and I learned we were unexpectedly pregnant with our fourth child. The timing, honestly, seemed bad. I'd just re-entered the work force (part time, at our church), our then youngest was only 18 months old.. (due to some relatively minor fertility issues, our kids are all 3 or more years apart.. prior to this!). A dear friend of mine was in a fight for her life against cancer..

We had some early prenatal testing done, and on Oct. 2, 2007 my ob called to tell us that something was wrong with the baby. It was too early to know WHAT exactly but the least problematic of the options was Trisomy 21 and the worst options were "incompatible with life". Two days later, on Oct. 4, 2007, my sweet friend triumphed over her cancer by entering Heaven, leaving behind her 3 young children and her husband. I couldn't make sense of it, couldn't understand WHAT God was doing.. Had a HARD time holding onto hope. The afternoon after I'd heard Brandi had died, I packed my young daughter into the van to pick her big brothers up from school. The radio was playing in the background as I was too consumed with my thoughts to hear.. As I backed out of the driveway, I felt as if God said "Listen..", and the voice on the radio was saying "There's a light at the end of this tunnel, for you.. for you..". As I turned the corner, I saw a beautiful rainbow. And I held onto hope. That was the beginning..

More than once, I can remember hearing "Tunnel" exactly when I needed it and gradually, I accepted it as a message from God that there WAS light.. I couldn't see it but it would be there. He promises. It often seemed as each doctor's appointment brought more bad news. We eventually learned that Seth would be born with Hypoplastic Left Heart Syndrome, requiring 3 open heart surgeries before the age of 3, the first one a few days after birth. I especially remember one day, driving out to work, upset and miserable. Crying out to the Lord, "YOU have to make it okay, help me get through this because I can NOT do it on my own." I turned on the radio to the opening notes of "Tunnel."

Seth was born on March 27, 2008. His first surgery was April 1. His recovery was hard but he came home, happy & healthy on May 16, 2008. I heard "Tunnel" less & less on the radio but smiled every time it came on, knowing that God was blessing me. Eventually Seth needed to go into the hospital for the 2nd planned surgery. Surgery was 9/11/08. On 9/17, Seth coded and suffered neurological damage. On 10/2 (exactly one year after we'd been informed something was wrong with our sweet unexpected fourth child), we placed Seth on comfort care and loved on him until he went from my arms to the arms of his Heavenly Father, early in the morning, on Oct. 12th. I remember that day in "snapshots". We packed up his hospital room. Kissed our baby goodbye, again. Thanked the nurses for loving us and caring for our boy and walked out of the hospital empty-handed.

Stunned, we slipped into our minivan, preparing for the drive home, and the task of telling our "big kids" that their baby brother had gone to Heaven. My husband started the car. The radio came on. "Tunnel" was playing. As we drove out of the hospital parking lot, into the sunshine, I knew, as sad & scared & hurt as I was, that God WOULD provide a "Light at the end of the tunnel".

God's grace has been SO sufficient for us.. as evidenced by the use of your song to touch my heart at times most needed. I can't hear "Tunnel" without thinking of Seth and God's faithfulness and love for our family. We are blessed to be on this journey and that day in October, when it seemed like the end, was in so many ways, just a beginning.

I'm sorry this is so long. I really wanted you to know HOW much your song impacted me. How instrumental it was on our journey.. How much I appreciate being able to hear it and remember Seth. It's impossible for me to truly convey how significant that all is but I hope I was able to give you a small glimmer.. thank you for your faithfulness to do what God calls you to! And know how much you minister to others!

I know this is long.. thank you for reading and I hope you enjoyed Tunnel by Third Day.

Friday, January 1, 2010