Walking With You - The Power in a Name

Today, in Walking With You, Kelly has suggested we share how and why we picked the names of our babies. I feel like in order to share the real story, I need to give some background.

Sean was going to be Sean for as long as I can remember. The middle name was tweaked over time but wound up being Monte, Leland's middle name and the name of Leland's father. Sean means "God's gracious gift" and having had a miscarriage and some minor fertility issues, I DID appreciate the gift that Sean was.

Cary was named Cary Donald in honor of my maternal uncle and grandfather who both passed away between our having Sean & Cary, as sort of mentioned here. Cary means "from the marsh" which is a little random but with Cary it was more important to honor our extended family than worry about what his name meant.

Kayleigh was our first (only) "gender-surprise" baby. If she had been a boy, she would have been Kyle Steven. (Kyle means handsome, near the chapel). Kayleigh is the girl name I'd had picked out forever and her middle name is Ruth, my mother's middle name and after my maternal grandmother. Kayleigh means pure.

Originally we were not going to find out Seth's gender. And for some reason, I had it in my head he was a girl. My first choice for name was Ruby Grace. But with Seth, there were so many unknowns, we did decide to find out gender. A BOY? I don't have a boy name! I did not want to use Kyle because at this point we have Sean, beginning with a sh sound, and Cary - /k/ and Kayleigh - /k/. I did NOT want another /k/ name. I know that sounds a little silly but it was a factor. I said it didn't HAVE to be an "S" name but definitely NOT a /k/.

Sean made it his mission to find us an S name. He first suggested Sam, not a favorite and then Seth. Hmmmmmm, I like Seth. Seth means "Appointed one" and it's biblical. So we chose Seth for his first name and Douglas for a middle, as Leland and I both have Uncle Dougs in our families.

I feel like, especially since this post is about SETH's name, that I want to emphasize how important the biblical meaning of Seth's name was to us. We clung to the fact that being "appointed by God" must mean SOMETHING. Regardless of what Seth's life looked like to us, he was appointed for a purpose. We were blessed in being able to get Seth dedicated at our church between his surgeries. Our pastor shared a verse at Seth's dedication, from 1 Timothy 1:12, "I thank Christ Jesus our Lord, who has given me strength, that he considered me faithful, appointing me to his service." (Previously shared here)

We were and are so grateful for the opportunity to have Seth enter our lives! I still am trying to figure out a way to help his name "live on". To that end,I don't have much to offer in the way of resources today. Please visit Kelly's post at The Beauty of Sufficient Grace to share the joy of other baby names.

I leave you with a picture of the print that my brother and his wife gave us after Seth's service.

Walkin' down Memory lane.. on foot, of course.

I realized something today. I am having a harder time remembering the happy moments with Seth. Not an IMPOSSIBLE time, just harder. So I've decided I'm going to try and get back to Wednesday's Walk Down Memory Lane with Lynnette and see if I can capture some of those, and other memories. I also want to remember some of the good memories our "big kids" have of Seth..

Today I had a moment memory with Kayleigh. We were cuddling in the rocking chair and she said something about Seth's feet. "Seth's feet were little." Yes, Kayleigh, Seth had little feet. "Not like MY feet." Not like your feet? Are your feet big? "Yes." "Mama, when Seth's feet get bigger, he wear MY shoes."

Tee hee, "He wear MY shoes." As if Seth would want to wear her little girl shoes! We DID talk about the fact that Seth was in Heaven and so he won't be wearing Kayleigh's shoes anytime soon. It was a sweet moment. I really treasure the times that my "big kids" and especially Kayleigh share Seth memories!

Kayleigh fell asleep in a weird position and I couldn't resist getting some pictures.

Nine months, Sixteen Cities

No, this is not a travelogue.

Today it's been nine months since we kissed our sweet boy goodbye and he left us for his permanent home in Heaven. Honestly, I was NOT going to do a "9 months" post. Contrary to what you may think from reading this post, this post, this post and maybe even from taking a gander at these pictures, I am not obsessed with doing a "monthly countdown." But a couple of things happened today that I wanted to share.

First, let me say; I think we're doing quite well. Nine months ago, if you could have showed me what this journey would look and feel like today, I probably wouldn't have believed you. Or I would have naively thought we should be FARTHER along. Don't get me wrong. We still feel a hole in our family. I still miss Seth every single minute but it doesn't HURT as much as it did earlier. (It still hurts but it's not an all capital HURT anymore!) What I marvel at every day is how confident I am in God's love for me, for our whole family. It amazes me that we could walk through such a dark storm and feel so much closer to God. I know in my head that's how it works in God's economy but it still surprises me.

This morning at church, worship was led by Sixteen Cities. They've led worship at our church before and I enjoyed them then almost as much as today. But at one point today, I could almost see how much God was enjoying the worship of our church and it brought me to tears. In additon to that, we were singing a song that has been a big part of this journey.

The chorus: Saviour, He can move the mountains
Our God is mighty to save, He is mighty to save.
Forever, Author of salvation,
He rose and conquered the grave, Jesus conquered the grave.

This is difficult for me to share but early on, when we sang that song, I couldn't. And I would cry. Because it didn't feel like God saved Seth. Or that the grave had been conquered. But as I have been reassured that God loves me and wants my best, I have been able to see the Truth more clearly. Seth was saved from SO much. He no longer has to endure pain or heartache. He's free in Heaven, and he's there because Jesus conquered the grave. It did take me awhile to get to that point. Time. And the Grace of God.

Earlier this morning (like 4:30 am earlier), Sean crawled into bed because he'd had a nightmare. When we were awake later (like 6:00am) and hanging out in the livng room, I asked him if he remembered his nightmare and wanted to talk about it. He had dreamt that Kayleigh and then I, and his dad, and Cary all "floated into Heaven" and left him here alone. It was heartbreaking to say, "Sean, I can't tell you that will never happen. But I CAN tell you it's not very likely." What I wish I had thought to say (and this is my chance because Sean reads my blog!) was this:

Buddy, even if that DID happen and we all went to Heaven leaving you here on earth, feeling alone. You would NOT be alone. God would be with you. God WILL be with you. He will walk every step with you. All you have to do is ask Him too, press in and acknowledge His Grace.

If that's where we've come to, nine months into our journey since losing Seth, I think we're doing okay. Thank you, Lord Jesus!

TSMSS - Seth's song

I have been participating in Then Sings My Soul Saturday over at Amy's Signs, Miracles & Wonders blog for a couple of months now. A few weeks ago I decided to share about my kids' songs. Each child in our family receives a "special" song from mommy, just for them! You can read about Sean's song, Cary's song, Kayleigh's song and the lullaby they all share. And that brings us to Seth's song.

Honestly, I've been almost dreading getting to sharing Seth's song, for a few reasons. I fear it will be misunderstood. But truthfully, that doesn't bother me as much as this next thing. And this is going to sound silly but I almost fear reaching the end of being able to share things about Seth. I feel like I only have so many tales to tell and stories to share before I will have shared it all. In my head, I know that's not exactly true. I will ALWAYS be Seth's mom and as long as that is true, I'm sure there will be things to share. But since I'm new enough on this journey that I'm still re-capping events that occurred, I don't know what being able to share Seth in the future is going to look like. So, currently, everything I share is one more thing I give away, and I feel like I'm eventually going to run out. Seth was a huge part of our lives though, and still is. I love him so much and I want the world, or at least my small corner of it to know him, so share I must! And with all that spewed out said, here it is:

The video is not great, the audio is okay, the song actually starts about 2 minutes in, and the bit at the end doesn't apply! :)

When I was in high school, we did the musical Snoopy!. (I did props. Yes, I was a theater geek in high school.) All the days we spent in the PICU sitting by Seth's bedside, I would rub his little head and whisper quietly "Poor, sweet baby." That got me thinking about this song. I actually came home, looked up the song online, printed out the lyrics and memorized them! (This was all during Seth's first hospital stay). I would then sing it to him, while sitting by his bed, eventually when rocking him. To this day, I can't sing it without crying..

Poor Sweet Baby from Snoopy! The Musical

Lyrics by Hal Hackady

Poor, sweet baby

Poor, poor, sweet, sweet baby

Show me where it hurts, I'll tell you how to make it well

I've won lots of loving cups for playing show and tell

My poor, sweet baby

Poor, poor, sweet, sweet baby

When you need a shoulder come and try mine on for size

I'm real good at holding hands and Really great at drying eyes

Just try me Cry me all your tears

Why deny me The pleasure of dryin'em Stoppin' you cryin'em

Don't despair for Smiles are what I'm there for

You won't have to look for me, I'll always be right near

Near to kiss and cuddle you and Whisper in your little ear

Don't fear

There, there, Baby Poor, sweet baby

Poor, sweet baby Mama's near.

Walking with You - Our Earthly Goodbyes

Warning: this post includes our final picture of Seth, taken at the funeral home during visitation.

I'm trying to participate in "Walking with You" at The Beauty of Sufficient Grace. I missed the last two as they were about experiencing a difficult pregnancy and meeting our babies. While my pregnancy with Seth was high-risk and stressful for me in the amount of appointments and the uncertainty of his medical issues, once we knew he had HLHS, I felt assured that he would live. When he was born, our meeting was brief due to his being rushed off to NICU, but we had lots of time with him before he went to Heaven, months, and I thought we'd have longer. I did join in on the first one and you can read about our First Steps on our journey with Seth here.

So today Kelly suggested we share about saying goodbye and the memorial service. (How long do you have?). We said goodbye in stages and I've shared about some of it here on my blog as we journeyed through it. I've just spent way too much time reading through those posts trying to find one to link back to. Let's just leave it at read anything in October 2008, okay?

So, we asked for a DNR and put Seth on comfort care on October 2, 2008. I spent much time that afternoon tearfully calling family and friends telling them Seth was dying. My mom, sister, and dad who all live out of town, rushed to our sides. We didn't know how long we would have and I asked my mom & sister to make some preliminary phone calls, telling them I would like to have Seth buried in "BabyLand" at the cemetery closest to our home.

Leland and I basically moved into the hospital during that time. I was so grateful and Seth's last night with us, he spent in my arms. That was extremely special for me because, while I had slept at night with ALL my babies in my arms at some point or another, I didn't often get to with Seth. He was on a g-tube and a continuous feed at night and that made it difficult to cuddle him at home as the tube would pop out and leak, etc. So I got to hold and cuddle Seth the entire night, from midnight (when the nurses and Leland called and had me rush back to his room) until 5:30am, when Seth went from my arms to the arms of Jesus. That was Sunday morning, October 12, 2008. After phone calls to family and close friends, Leland and I packed up our hotel hospital room and went home without our baby.

We told our big boys that their brother was now in Heaven. Our pastor and his lovely wife came to our house that afternoon. I was and am so grateful for the gentleness and kindness of our pastor as he guided us through planning a memorial service. We offered some suggestions for scripture we would like to have used, Leland and I picked the worship songs we wanted to sing. My mom and dad ordered the casket from Trappist caskets. It was hand carved and prayed over by monks.

As I look back on it, I wish we had thought to do a balloon release. Other than that, I have no regrets. I remember actually being shocked at the number of people who were there and SO thankful. Several of the hospital staff attended, a few of Seth's doctors were there. Mostly though, I remember being numb. There was an element of "I can't believe we're doing this". At times, it just felt like going through the motions.

I remember the day of the visitation & burial and the memorial service almost in "snapshot" moments. The boys and I picked out items for them to give Seth. Cary picked a small stuffed animal. Sean wrote Seth a letter. Together the boys and I went to the florist and bought flowers for the burial, because Cary had specifically asked if he could pick out the flowers. (Cary had also asked if Seth could be buried in our backyard!) At the cemetery, our pastor did a short graveside service. I remember that Leland walked off for a bit, overcome with emotion. My friend, Cathey moved up to sit with me.

At the memorial service, I remember Cary crying through the slide show. I don't remember much of the actual service, which makes me sad. I do remember walking out to the parking lot at the end of the service. We were almost last as I remember not wanting to leave the church. As I think about it now, I didn't want it to be over. It felt like our last chance to publicly remember Seth and I didn't want it to end.

I don't have much to recommend in the way of resources. Kelly offered quite a few suggestions at the bottom of her post. We did receive quite a few books and I can recommend some of them. My FAVORITE book was Things Unseen by Mark Buchanan (and given to us by our pastor). Also read From Grief To Glory by James Bruce. I also signed up for the daily emails from GriefShare, and I still receive those and find them helpful.

I only have one real prayer request. Well, beside the "usual" which is for fully restored joy. I long to find a ministry to honor Seth. I don't know what it looks like but I almost envy Kelly for Sufficient Grace Ministries. I yearn to do something like Micah House. But mostly I want to do what God wants us to do to honor our boy and our journey. Prayerfully, we'll find it.

WwMW - Walking with You - First Steps

Another Walk With Me Wednesday that I'm getting up late. Some day I will get ahead of this blogging meme thing. Some day. In the meantime, since this is a memory, I'm going to combine Lynnette's Walk With Me, with Sufficient Grace's Walking With You. Kelly at Sufficient Grace Ministries is starting a place where moms who have lost babies can share the steps of their journeys.

For the first "Walking with You", Kelly suggested that we share the beginning of our journey. The moment, day, when we knew we would be walking this horrendous path. Our moments came in stages, for lack of a better word. Because Seth was born with a congenital heart defect and lived with us for six months, we walked a couple of different journeys.

But it really began on October 2, 2007. It was a Tuesday. We were just sitting down to eat and the phone rang. Leland answered and handed me the phone, it was my ob. The previous week we had done a "nuchal fold" ultrasound; he was calling with the results. I knew immediately that this was not good news and went downstairs with the phone. At that point, the information was limited to "Something is wrong with the baby and we can't say for sure what it is," none of the options were good. The best diagnosis at the time would have been Down Syndrome. Other possibilities were considered "incompatible with life", trisomy 18;13, for example. That was the first steps on the difficult path we would walk with Seth. We had no idea what we were in for but we knew something was coming..

We were pretty clear, from the beginning, that termination would NOT be an option for us, regardless of diagnosis. God had given us this baby and we would accept and love him regardless of his health. Our 18 week ultrasound was done by high-risk perinatologists. We were referred to a genetic counselor. We had some blood work done which had pretty much ruled out the scary trisomies and were led to believe we were most likely looking at Down syndrome. We could deal with that. At the 18 week ultrasound, we were informed that they couldn't get a good view of the baby's heart and we were referred to a pediatric cardiologist. That appointment was set up for about 22-24 weeks. We were not in a rush because we were not going to terminate and the feeliing was that we should wait until the baby's heart was big enough that the echo would be a bit more definitive.

And we prayed. And asked people to pray. And pressed in for a miracle. And believed. I was CONVINCED that we would walk out of that office having been told our baby had a perfect heart. The echo was long and in the middle I had to walk around because baby shifted positions. Finally the cardiologist came in, reviewed the films, and said she would talk to us in her office. She was very kind but as long as I live I will never forget hearing her say "This is probably one of the most serious things we could be looking at." (And I looked heavenward, "What? This is NOT the good news I was expecting to hear"). "Your baby has a defect known as Hypoplastic Left Heart Syndrome." I had done some research when we didn't know what we were dealing with, and I had come across HLHS, and tears IMMEDIATELY sprang to my eyes. And THAT began our journey as "heart parents." (Incidentally, the cardiologists were VERY reassuring and we were quite optimistic most of our pregnancy and Seth's time with us). But being "heart parents" is not what this is about. (And that portion of the road did have it's own bumps & potholes!)

So fast forward... Seth had his 2nd surgery, the Glenn, on Sept. 11, 2008. Almost a week later, Sept. 17 was probably the beginning of our grief journey. We were home,I had even gone to bed early and the phone rang. Leland burst into our bedroom; "Get up, we gotta go, that was the hospital".. I ran down and told my mom and we rushed to the hospital. Seth had coded. We didn't realize though, the road that would put us on. Fast forward a couple more weeks, October 2, 2008. Seth is still intubated, unresponsive, beginning to show posturing. During our care conference, one of the doctors tells us that he believes Seth could "have another code event within the next 24 hours." And prayerfully, Leland and I decide to not continue with any additional invasive procedures. Seth is put on comfort care. We loved that sweet boy for the next ten days and on the morning of October 12, Seth slipped quietly from my arms into the arms of Jesus.

When I look back, I can not believe how much my life has changed. The irony of recieving the intial phone call and the news that our baby was not likely to get better on the same day, a year apart, is not lost on me. As you can see, our journey did not have a definitive beginning to the road we're on now. We were so blessed to have the time we did with Seth.

I know that other HLHS angel moms occasionally find their way to my blog and I belong to a yahoo group that has been a helpful resource in connecting me with other moms - HLHS Angels
I also found comfort in several websites, Lynnette Kraft's blog, book and support website. I found Emily's site, Stepping Stones helpful as well.

In addition, Leland and I attended a support group called GriefShare. I found it helpful enough to attend twice!

Kelly also suggested we close with a prayer request. I just continue to pray for God to turn my mourning into dancing. I am grateful that His mercies are new every morning and I seek restoration of joy! I also would ask for prayers for the hearts of my "big kids" as all of this has been difficult for them as well and I would hate to see it negatively affect their relationship with God.

Writing this out IS cathartic and I obviously enjoyed it enough to get very long-winded. Thanks for reading. I think this "Walking with You" will be an nteresting journey as well.

Then Sings My Soul Saturday - Hosanna

Join Amy at Signs and Wonders to see songs that are making the souls of others sing today also!

This is a song we started singing at church when I was pregnant with Seth. I was especially moved by it because it has the line that says "In your kingdom, broken hearts are made new, You make us new". We also sang this (at my request) at Seth's Memorial service. Now it IS true that Seth has a new heart.. And God is working on MY broken one.

Thankful Thursday - Small Graces

My Thankful Thursday this week is not going to be in traditional list form. I hope that Sonya at Truth for the Journey will let me slide! I'm pretty sure I'll get at least five things..

Today, I'm especially grateful for small graces. I know that I am a daughter of the King of Kings and that God loves me but occasionally, especially when I'm hurting, I need to be reminded.

I am grateful that Tatyana's heart cath went well. She was feeling a teeny bit better and ate a bit of dinner tonight. I am grateful that God gave me the opportunity to be there and sit with Chantelle this morning. While I was there, JT, Tatyana's dad, bought me a Pepsi. He didn't have to and it was a small thing for which I am grateful.

At the hospital, I had the opportunity to check-in and visit with the nurses and other staff whom we met while on Seth's journey. I'm always blessed by the hugs and warm smiles we get when up on the floor. It's a small grace that often feels larger!

Upon leaving the hospital today, I had no money for parking and the ATM was broken. I was given some parking validation stickers but the parking attendant said they were not valid. In the middle of explaining our situation to the parking attendant, rummaging through my purse, I DID find $5 and the parking attendant just waved me through anyway. (Yes, I told her I'd found the money to pay). It was a small grace.

I took the kids up to our local library this evening. I spent 45 minutes looking for our library cards before I gave up and decided we'd ask for replacements. The librarian was concerned that if they were JUST misplaced, we would waste the $2 replacement fee (per card). I told her that I was sure they WERE just misplaced. (I changed out wallets shortly after Seth went to Heaven and can't find the old one right now). But, I said, we lost a child in October and there's a good chance I'll never find them among the piles of stuff. I did NOT tell her for sympathy. It's just the truth of our situation. She waived the fees. Another small grace.

And finally, there's this:



Someone left a balloon at Seth's marker on Memorial Day. It wasn't us. I just tonight found out who it was. Remember Mary and baby N? The baby they lost is at the same cemetery as Seth and her family left the balloon.. A small grace. "Mary" sent me a note tonight, letting me know it was them, and saying that their family grieves with us. I know that to be true and I'm VERY grateful for her presence in my life.

And I think now is a good time to share. "Baby N"? The N stands for Nehemiah which means God's comfort. I am SO thankful for God's COMFORT!

We Remember... Memorial Day 2009

I had a very interesting conversation with Sean this week. We were in the van. ALL our important, interesting conversations (or at least 90% of them) seem to take place while we're driving in the minivan. Sean mumbled something about Memorial Day and people not even knowing what it's about, just being excited about the day off. "Um, Sean," I queried, "Do YOU know what Memorial Day is about?". He confessed that he didn't really.. He thought it had something to do with people who had died and the military. I was glad to tell him he was closer than he thought. And nowadays, it's also a day to remember and honor those who have gone before us.

I apologize for the quality of these pics. I had to do some scanning and some settling. I've already mentioned my poor organizational skills, so I'm making do.

Today, in our household, we will remember:

"Uncle Cary" My mom's younger brother,
Donald Douglas "Cary" Savill
1948 - 1999

The top picture was taken in the spring of 1993. It's my Uncle Cary with the picture he painted and gave to Leland and I as a wedding gift. The inset picture was taken at the Savill Family Reunion in July of 1999. Uncle Cary was my FAVORITE uncle growing up. I'm grateful that he did get to meet Sean before he died and am sure that he is entertaining Seth in Heaven.

Grandpa Savill, my mom's dad
Donald Colin Savill
1925 - 2000

Both of those pictures were taken at the Savill Family Reunion in July, 1999. That's Sean on Grandpa's lap in the top picture.

"Grandpa Red" Leland's dad,
Monte Lee "Red" Bonnett
1935 - 2003

The top picture is Red holding Sean in December of 1999. The bottom picture is Red holding Cary and it was probably late 2001 (December, maybe?)

And of course, in our home, we'll remember:

"Baby Seth" Our sweet, sweet boy, Our little "tough guy,
Seth Douglas Bonnett
March 27, 2008 - October 12, 2009

The first picture was mid-August 2008, on our living room sofa. The remaining pictures of Seth were taken by the wonderful photographer, Heather Evans at Slice of Life Photography. She donates some of her valuable time to the hospital, giving families losing children, precious, precious ways to hold onto their memories. They were taken on October 2, 2008. I didn't realize until just now that the outfit was the same.

Today, as we do EVERY day, we remember.

As I"ve been going about my getting ready to go out with the kids today, I've been humming and singing a song that I feel is appropriate for this post & this day.

Broken calendars...and a WINNER!

Today's been such an interesting day... It was the one year anniversary of bringing Seth home from the hospital as illustrated here. And really, as far as that goes, it was an okay day.

I have been a LOUSY calendar keeper for the past 7 months or so. I didn't realize how much so until just tonight. I have a brand new 2009 calendar. I JUST tonight broke the seal on it. I am trying to make summer plans for the kids, camp, etc.

As part of my process, I went through the 2008 calendar. It was bittersweet to see all the dates marked for Seth, during pregnancy (non-stress tests twice weekly, fetal echo's, etc) and after he was born. And as I went through the calendar, there were dates marked for his surgery and his heart cath. And there were dates written on by my mom when she was here taking care of the big kids for us. And there's a few things written on the calendar in October. And after that, the calendar is practically blank. Which says sad things about the type of mom I've been for these last 6 months. And telling things about what grief can do to us. ::::: sigh :::::::



Moving on....

Remember this little beauty here:

Uh, not the GIRL, the PUPPY. She has a name!! We (more on that in a moment) picked a winner. Can I just say how much I enjoyed this? Thanks to ALL of you for taking the time to comment and give us options to consider. I see why MckMama does contests. You guys are FUN to read!!

If you haven't already, go back and read the comments on this post. There were so many great choices. Some of our favorites (but NOT the winners, wish we were getting more than one dog!): Molly, Peaches, Sadie. One of my favorite entries was "Sydney" by HolliLynn. We might have even considered it EXCEPT:

That big momma dog with the little puppies? (Including ours!) SHE is already Sydney!!

So without further ado, because we've waited long enough, OUR puppy will be called:

SHEBA

Thanks to JD who wrote:
Sheba! She (she's a girl), and "Baaaaaaa" because she's a sheepdog / shepherd ;) S to honor the first letter in Seth's name. And Sheba is a Biblical name!And, well, puppies, they tend to rule the coop, and you know she'll reign in your house... Queen (of) Sheba?

JD, email me and I"ll get your gift card to you! Starbucks or Amazon? YOU pick!

For the record, I hadn't really thought of the "s" thing until you guys suggested it. A couple of different sources have Sheba as meaning "promise" in Hebrew and "kingdom" in Aramaic. I can live with that.

Oh, and that "we" I mentioned earlier? That would be Leland, I, and SEAN! That sneaky boy read my blog and has already been surprised with the knowledge that we're getting a puppy! He promised not to tell and agreed that Sheba was a good name!

Thanks for your help!!!

A year ago today..

This small boy...

after spending 50 days in this same hospital room...

His first 50 days, and the first quarter of his life..

Got dressed in these fancy duds...

Cuddled with this nervous mama.....

Was placed in this (picked just for him) car seat...

And taken home...

Where he was welcomed with open arms.....

by this VERY experienced big brother...

and this less experienced big brother...

and this novice big sister.......

Creating this happy picture of four lovely children all together in our home.

A picture that lasted for all too short a period of time.

We ALL miss you, Seth. Thank you for blessing our lives.

Thank you, Jesus, for the grace, courage, and strength we witnessed in and through the circumstances surrounding our small miracle boy. We are grateful for the time we had with him and anxious to see him again in Heaven. In Your time.

Firsts..

In 45 minutes (or by the time I finish writing this post!), it'll be Tuesday, May 12th. Seth has been in Heaven for seven months, which means that I have walked on this earth more days since saying goodbye than I walked with him breathing beside me. I think I can honestly say I don't hurt as INTENSELY as often but I know I don't miss him any less than I did on October 12th.

It's been a year of fascinating first, this past year (and I actually mean about the past 13 months). We've had the usual firsts, experiencing with our fourth child the same types of things we experienced with our first, second, and third.

First breath (at birth)

First visitors

First introduction to siblings (well, Sean didn't get that one!)

First bottle

First day at home

First smile

First giggle

First time he reached for a rattle

First car ride

First time attending church

First time to visit someone at their home

First Mother's Day, Father's Day, Fourth of July

With Seth, we experienced a whole new world of firsts!

First open heart surgery and all that entailed (first IV, PIC line, etc)

First extubation (we naively only expected one, not a FIRST, goes to show how little we knew!)

First g-tube

First heart catheterization

First weight, pulse ox checks at home

First home nurse visit

And the firsts which Seth has already missed -

First Halloween

First Christmas

First time sitting up alone

First crawling

First Birthday

First time standing

If Seth were here now, we'd be celebrating and anticipating:

First solid foods

First steps

First words

But instead we are dealing with a whole new experience of firsts:

First time his insurance card didn't come in the mail

First Mother's Day without him

First anniversary of his homecoming from the hospital - without him

First Father's Day, Fourth of July, etc without him

We had the first time his brothers cried for him.... the first day he wasn't with us... the first funeral our 3 "big kids" attended.. first cemetery visit.

But we've had AMAZING firsts.. Not quite as easy to list and pinpoint.. little things that let us know we'd be okay, in spite of our loss and because of our God.

First time I didn't cry in church.

First Kleenex delivery to the hospital

First time I sang "Blessed be Your Name" without weeping

First time Kayleigh said Seth was "at Jesus"

First friends I wouldn't have if not for our experiences

And almost bigger than that, and most recent, the first time I shared my experience and a little bit of how Seth touched my life for the glory of God. I am SO grateful. I am grateful to know how much God loves us, to know that God's glory can and WILL (and does?) shine in our suffering and difficulties.

Thank you Lord for the opportunities to grow in your love, to know your goodness and to share how I see You working.

Mother's Day 2009

So, in looking at my clock, it appears that Mother's Day is here. I am blessed with MANY "mothers" in my life. I would like to wish them all a Happy Mother's Day. I also want to thank all the women out there who aren't mothers in the sense that they are not or have not raised children of their own. ALL of the women I know personally who fit that description ARE mothers in one way or another. Some of them have mothered me and some of them have mothered neighbors or other women. "Motherhood" in any shape or form is a blessed calling and thank you for your faithful obedience!

I was blessed to have spent 24 of the last 36 hours on a silent retreat. I was with some amazing sisters in Christ and we had the opportunity to be quiet and wait on the Lord. The Lord blessed me with a very RESTFUL time - I don't think I even realized how much I needed that. And there were moments of revelation and wonderful moments of prayer. And I'm grateful. Times like that help to strengthen me for times like this.

Mother's Day missing Seth.

I spent some time this evening trying to figure out what our family would wear to church tomorrow. For as long as I have been going to Timberview, they have a tradition of taking family pictures on Mother's Day. I have last year's. It shows me and Leland, Sean, Cary, Kayleigh. I would scan it for you but organization is not my strong suit and I'm not sure where it is. I specifically remember looking at that picture and hoping it would be our last family pic without Seth.. Seth was still in the hospital when it was taken... And now, of course, Seth will be missed in tomorrow's picture..

I DO however have another Mother's Day picture from last year:

It's not as posed as the one taken at the church. But,I confess, I love it more.

Someday, we'll all be together again. And until that day, we wait with expectant hearts.

A year ago today...

Seth's first "cleaned up" pictured. Excuse the date.. I had mis-set my camera and didn't realize it until later.

Happy Birthday, sweet, sweet Seth. We miss you. The kids sent helium balloons to Heaven. Kayleigh was actually quite sad to see her Sponge Bob mylar balloon float into the sky.. Cary & Sean didn't have the same reaction to the Sesame street bunch and the multiple candled cake balloon heading off into the blue yonder..

I've spent some time today thinking about a birthday party with Jesus.. Can't quite wrap my brain around it.

Yesterday someone said "Wow, a year, doesn't it seem like a lifetime ago?"

Yes, it WAS a lifetime ago. Seth's lifetime.. and then some.

In Other Words Tuesday

Today's In Other Words Tuesday is being hosted by Patricia at Typing One-Handed. She chose the following quote:


What would happen if we stopped lamenting about the fifty things we can't control and focused our attention on the fifty thousand things we can control? What would happen if we stopped whining about things we have the power to change and finally took charge of our lives and changed them? What would happen if we stopped borrowing sorrow from tomorrow? If we got in the habit of asking ourselves, "What's on my plate today?"
~Karen Scalf Linamen
Chocolatherapy: Satisfying the Deepest Cravings of Your Inner Chick

I love this quote. It speaks to me about so many of the things I want to do in my life. To live simpler, to surrender the things beyond my control, to do what God calls me to do with the things IN my control, to raise my children to see a simpler life, to.. Oh, wait, I'm doing it again aren't I? I'm just elaborating on some of the things I want to/can/are trying to control. :::: Deep breath ::::

Truthfully, since Seth went to Heaven, some of this has just come into my life. I make a conscious effort to NOT focus on and worry about the "fifty things I can't control" (or more). Once Seth entered our lives, there was So much we could not control.. From being pregnant again to finding out he was "sick" in utero to his surgeries to outcome; we couldn't control any of it. Mind you, that didn't stop me from trying to figure out how to get the outcome I wanted. And that just caused undue, unnecessary stress. Once I just turned over to God the things I could not control (which pretty much involved everything at that point!), life just got a lot.. well, not EASIER but simpler.

It's such a valuable thing to learn to let go of that which we can't control. And that encompasses SO much of our lives... I'm so grateful that I am not God and I don't' have to worry about all those things.. Which leads me to the second half of that quote..

What if I stop worrying about ALL the things I CAN change and just do it? What if I ask myself "What's on my plate today?" and stop worrying about tomorrow?

This part? Not so good at... I've spent the last few months working on fighting off a "paralysis" of sorts. I struggle a bit with depression and it's been very hard to get anything done. I"m trying to improve that. I'm making some practical steps to help myself.

But to some degree, I have to believe that I'm doing the best I can in this season of my life. I am grateful to have a God so much bigger than me. Every day I put one foot in front of the other, get through the day the best that I can. If the kids are fed, safe and relatively clean, the day has been a good one. And I pray for God's help and strength to do it all again tomorrow!

Head over to Patricia's blog (by clicking the link at the top of this post) and see what others had to say about this thought provoking quote.

Walk with me Wednesday - Down Memory Lane

So here it is. The post I've been putting off for over a week. (Two weeks?) It's probably gotten a WAY bigger build up than it deserves. One of the things I'm learning is that sharing the memories of what happened with Seth, the good and the bad, accomplishes a couple of different things for me. It validates and affirms those things happening (especially the good). Some of the negative gets blown up in my head and sharing it helps me to keep it in perspective.. and validates it as well. I shared a negative memory in an email today and was blessed to be encouraged and discover I was not alone in my feelings. But today's memory is a POSITIVE.

I want to share about the last few minutes we spent with Seth. Not before he died but the last time we had with the SETH we had come to know and love during the time we had him at home. Seth was admitted to the hospital the night before his second surgery. Leland and I, taking advantage of the "free" babysitting (my mom was at our house with our three "big" kids and Seth was well cared for by the nurses), decided to have dinner out. A belated birthday dinner for me and an early birthday dinner for Leland. When we got back to the hospital, a couple of our friends, Karen & Cathey, had come up to see us and we're cuddling on Seth. I was glad that he'd had that time and had been loved upon by others in our absence! Here's a picture of Karen & Seth. Can't you just see how much he adored her? Mind you, he knew her voice, she screamed at my belly for MONTHS! She loved him too.



Leland and I hung out with our baby boy for awhile and headed home. The next morning we were up at the hospital early to make sure we saw Seth before surgery. We followed him down to surgery in the elevator.

Once we arrived in the surgery triage area, we had quite a few minutes to wait. During that time, I held Seth. I did that thing you do with babies, you know, when you hold them up facing you? Seth was sitting on my lap. I held him under his arms (knowing I wouldn't be able to do that for weeks post op due to his sternum being opened) and spent LOTS of time kissing him on the neck and under his chin. You know, when you're holding a baby, facing you, and you kiss him on that spot just under his jaw? I spent lots of time doing THAT. Seth was JUST starting to figure out expressions. He wasn't quite to giggling but he did this squealing thing, more like when you inhale rapidly with your mouth open and it makes a squeaking noise. So I'm kissing his neck, he's squeaking, we're giggling at each other. It's one of those moments that I keep telling myself I'm going to remember forever. So often at home I didn't take the time to do that. I was so busy with Seth's needs and the other kids, etc. I'm glad that I made a point to do something sweet and memorable while we were waiting..

I don't have pics of ME doing that but I do have my mom demonstrating the above described technique. (Just in case you haven't figured out what I'm talking about). You can see the joy in Seth's face. He LOVED to be kissed upon like that.



Shortly after those sweet moments, the anesthesiologist came to get Seth. His daddy and I told him we loved him and gave him goodbye kisses.. I remember starting to cry and saying "I know, he'll be fine but I'm his mom and I'm allowed to be emotional." Of course, he wasn't fine, ever again after that. As much as we miss him, he's more than fine now in Heaven and we're left to cherish and be grateful for the special moments we DO have.

To read other people's precious memories, check out Lynnette's blog, "Dancing Barefoot on weathered ground".

Just checking in

So, it's been awhile. Again. People keep talking about this "new normal" and I guess I just keep having to adjust.. We're hanging in there. I've had a "Walk with Me Wednesday - Down Memory Lane" post brewing in my head for two weeks. I haven't been able to bring myself to sit down and type it out. I know I just need to do it but it's been difficult.. It's about the last time we really spent with Seth.. In the meantime, I clicked on something (somewhat randomly) on my computer this am and look what I was greeted by:



Is that the cutest little baby face you've ever seen? My friend Chantelle (another heart mom) did that for me... I think while Seth was in the hospital last time. That picture was taken when we (Seth & I) went up to see her & her daugther in July when Taty had her Fontan.. We put London (Taty's little sister) and Seth on the bed and Chantelle clicked away. ::sigh:: Such a sweet face. We love you & miss you, little "tough guy" Seth!!

Oh, I wanted to add something about commenting. Several people were having difficulty with or didn't want to register. I've changed comments so you can now leave an "anonymous" comment. Just click on the little button beside anonymous. (After you type in your comment and do the word recognition). Since I've made it so easy, you should now all leave me a hello telling me how adorable that picture of Seth is! Seriously, I would love to hear from anyone who continues to read my blog after my periodic long absences.

Edited to add: If you DO post "anonymously", please consider signing your name, especially if I know you! If you're truly anonymous and you want to remain that way, I can respect that. If I spend too many nights laying awake, wondering who "anonymous" is, I'll just go back to requiring registrations. So. Tee hee.

'Till next time then!

In Other Words Tuesday - Kindness

Have you ever noticed how many memes there are in Blogger Ville? I mean seriously, you could find MANY for every day of the week.. I'm trying out a few (did you notice?) and we'll see what happens.. If you all think I"m overextending your limits of readership, let me know okay?

So today.....



(Picture from Susan's blog at Forever His. Click on here to check out the rest of the "In Other Words" participants.)

Kind words.. Have YOU been the recipient of kind words? Do you pass them along? I love the thought of how EASY it is to hand them out and what a blessing to those who receive them. (Okay, it's not ALWAYS easy, sometimes, when I want to yell at my kids, kind words are farthest from my mind, but what a blessing for them if I can pause, pray, and manage to be kind.)

When Seth was in the hospital, especially at the end, we were surrounded by family and friends, people who loved us. And for the most part, the majority of these people were nice and respectful. But oh, the blessings of the kind words. I don't know that I even appreciated all the kind words spoken at the time but oh, as they echo now, how I cherish them.

One evening, as we stood around Seth's crib, one of the nurses commented "I think he's the healthiest looking single-ventricle I've ever seen" and the others nearby agreed. Honestly, at the time, I remember thinking "For all the good it did us." That was my hurting heart speaking. Now, I cling to the words that nurse took the time to speak out loud. It cost her nothing. But oh what the knowledge that we did the best WE could for Seth does for my husband and I. And my dear sweet friends, I am blessed by women who came around me and in not knowing what to say, or fearing being UNkind, simply said "I love you" and "I'm hurting too". The kindness in words, spoken, and tongues held when appropriate rings in my heart.

I long to be a giver of kind words. Furthermore, I long to be a giver of GODLY kind words. Lord, help me to boldly speak of Your will and Your love for others. Help me to be kind out loud.

Thankul Thursday 1/1/09 AND #1

Well it seems appropriate to have my first Thankful Thursday ever also be the first day of a brand new year. Happy New Year! These are the things I'm thankful for as we enter 2009.

1. I'm thankful for Seth. It took me awhile to get there, and I still have days when I don't understand why (I never understand why). But for awhile after losing him, I really struggled with wanting to erase that he'd ever happened, his time here just seemed so short. I'm grateful for the time we did have to love on him, for the lessons we're still learning because of him and for the people God brought into my life through our time with Seth.

2. I'm thankful for Sean, Cary & Kayleigh. I know that if I didn't have them when we lost Seth, I'd have still had the Lord. But every day I have a reason to get out of bed as Kayleigh is calling out "I go pee... I GO PEE" and Cary is demanding to be fed. (Sean's pretty self sufficient in the am, as long as he's got NFL network or PS3 he's good!)

3. I'm thankful for our families. We would have had a much more difficult time managing everything with Seth over the last year without the help of my mom. When push came to shove, my sister, my mom & my dad, all left their homes & basically their lives, and came to help us. I don't think I express that gratitude often enough.

4. I'm thankful for our church family. We are so incredibly blessed to be in fellowship with a group of people who are trying to truly love as Christ commanded. I was going to start thanking specific people except every time I came up with one I thought "Oh, then I also have to thank so & so" and we'll be here all day if I start that! I'm sure they know who they are but I'm extremely thankful for their willingness to come alongside us during an extremely difficult time, even if it wasn't convenient or easy for them.

5. I'm SO thankful for the Lord in my life. The Saviour OF my life. All the previous things I've listed are gifts from Him. How amazing that I am loved that much just by being. Thank you, Lord,for this journey but mostly, thank you for Your presence on this road.

And there we are! You can check out other Thankful Thursdays by clicking on the button at the top of this post. (This was good for me. I hope I can manage this every week.)