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.

IOW Tuesday - June 16, 2009

I'm late getting to In Other Words Tuesday. (Yeah, big surprise). I wasn't sure I was going to do it. I'm sad today. Of course, that doesn't make today much different from a lot of days.

I've been wondering lately, if I'm just going to be sad for the rest of my life. I find myself thinking "Where is God in all this? Where is MY joy?" But here is what I KNOW to be true. Jesus loves me. "Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you." (Psalm 9:10). The Lord will not forsake me, I just keep turning to Him.

In spite of my sadness, I DO have peace in my soul. I do occasionally question that. I question my faith. I often get hung up on my FEELINGS. When this happens, I try to remind myself of what is Truth. When Seth's loss was fresher, I would chant to myself, out loud, almost as if it was a "mantra", usually in my vehicle; "God is good, He loves me, He is Enough," over and over. For even when I do NOT FEEL it, I KNOW that to be true.

I just keep pressing in to Christ.

“In trouble then and fear I sought

The Man who taught in Galilee;

And peace unto my soul was brought,

All my faith came back to me.”

~ Anonymous

Head over to Shortybears Place and see what Denise and others have to say about this quote.

Not Me Monday - June 15, 2009

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I did not get my Not-Me Monday up last week (really, I didn't), so I am NOT drawing on the last two weeks to fill this post!

I did NOT let Kayleigh eat an ice cream sandwich for breakfast because I was simply too tired to fight her over it. Seriously, who does that? Not me, not at OUR house!

I did NOT spend a whole day at work, recently, with MckMama's blog open on my computer (minimized). I did NOT periodically refresh waiting to get to 13,000. I did NOT capture photographic evidence of 13,000,001 and I was most certainly NOT disappointed when MckMamam let 13 million roll by without a mention. Not me, not at OUR house (or my office)!

I have NOT let our new puppy occasionally chew on our furniture because I am simply too tired to be vigilant EVERY. Single. Second. (Oh, no, are we seeing a theme here?) Never happened. Not me, not at OUR house.

I did not schedule myself to be in two places at once on Thursday morning, a coffee date for me, and an eye appointment for Kayleigh. I was not so annoyed with my husband yesterday (over a scheduling thing HE did "not" do) that I have seriously considered keeping my coffee date and sending HIM to the eye appointment with Kayleigh and her brothers. Not me, not at OUR house.

I did not roll my ankle when picking up our new puppy 10 days ago. If I had, I would certainly have iced, elevated, and stayed off of it as much as possible. I would NOT be watching the changing colors on my foot and said toes and using it as normal. Never happen, not me, not at our house!

I did not spend a few days last week neglecting my blog because I was simply too tired to feel like I could put together a coherent sentence. (Oh, are we back to that earlier mentioned theme thing?). Not me! Not at our house.

I did not drive in to work half an hour early today JUST so I would have time to put a Not-Me-Monday post. That would never happen! Not me, not at our house. OR my office!

Head on over to MckMama's to see what others have "not" been doing this week! Trust me, it'll make you feel better. Or at least, a lot less alone!

TSMSS - Cary's song.

So I'm taking a little break from being profound and I'm sharing the songs for each of my kids. Last week I shared Sean's song and you can read about it here. Cary got his own song. You'll recognize it I'm sure and I'll fill you in on how we change the words.



Of course!
C is for CARY, that's good enough for me
C is for CARY, that's good enough for me,
C is for CARY, that's good enough for me,
Cary, Cary, Cary starts with C.

The great thing? This song suits Cary very well, right down to the sweet tooth!

8 Months

I've had an odd week. It's been a good week. We have our new puppy, and she's doing well. I had an amazing experience in church this week (Remind me to tell you about it sometime) and am more aware than ever of how much God loves me. I'm on a new anti-depressant which does really seem to be helping. And today, Friday, June 12, it's been 8 months since we said good bye to our youngest child.

I've had an interesting "revelation" (for lack of a better word) this week. I was thinking about the births/arrivals of all our kids. I'm sure all moms will relate to this. There was a point with each of our children when I realized I couldn't remember what it was like before them. Usually it's a good moment.

With Sean, I turned 30 when he was 4 months old. And I felt, for the FIRST time in my life, like an actual "grown up"! (I know that probably sounds strange). And I couldn't remember life before Sean.

Cary had to be hospitalized when he was almost 2 months old. He spiked a VERY high fever after having a cranky day. It could have been lots of scary things, spinal tap was mentioned. It was RSV. And during that hospital stay (3 days), I realized I couldn't remember life before Cary.

Kayleigh's joining our family was a bit harder for me. Having THREE kids nearly put me over the edge (and sometime I can share about that in more detail. Remind me). Because of Cary's experience, one of my MAIN goals with Kayleigh was to keep her out of the hospital. AND, we had an emergency room visit, with an ATTEMPTED spinal tap, when she was 2 1/2 months old. (The ER doc sent us home because we live in town, I promised to see our pediatrician the next day, and I looked like an "experienced" mom. Ha ha.) In that exhaustion, I realized I couldn't remember life before Kayleigh! (Except, maybe, I DID remember being more rested.)

Seth didn't come home until he was 7 weeks old. And the medical stuff STRESSED me out. (The nurses could tell you). I KNEW, however, that when we got him home and had to just DO it, we'd be fine. And we were We coped "marvelously" and I couldn't remember life before Seth.

And today is eight months since Seth went to Heaven. In some ways, I can't remember life before Seth went to Heaven. But here's the crux, from the outside looking in, we look the SAME as we did before Seth. But, oh, look a little closer. See the weariness in my husband's face? And the sorrow deep in our eyes? Our children know a little bit more about the struggles of life then their few years would lead you to suspect. I vaguely remember, not necessarily what life was like, but what I was like, before Seth. I will NEVER be that person again. Even with his presence no longer seen, dare I say, PRECISELY because of that, I am forever changed.

I'm meeting a friend today at the park for a play date, just a few hours from now. What she doesn't know is that I called her precisely because I needed to be with someone who remembered Seth. She was one of the few people who got to actually spend time with Seth as a "regular" baby (we were invited a couple of times to her parents home, in most surroundings, Seth was treated as medically fragile and contact was limited). When Seth left us, she would call to offer support and say "I don't' know what to say, and I don't want to say anything stupid, so I"m not going to say anything. but know that we love you.". Today I need to be around that type of person. Someone who knew me before Seth, with Seth, and since Seth.

Someone who knows that regardless of how things look on the outside, my life will NEVER be the same.

TSMSS - You Are My Sunshine

I"m late getting this up today.. I haven't been paying much attention to the blog this week. (What's that? You hadn't noticed? Oh well, carry on then.) We've had a busy week, on Thursday we brought home a NEW puppy! Remember this contest? Well, Sheba is home! (By the way, if anyone knows J.D. who won, please have her contact me! She didn't leave an email address and doesn't appear to have a blog. I WOULD like to get her prize to her). However in picking up Sheba, there was a small accident involving a deck and I rolled my ankle. It's a pretty bad sprain (self-diagnosed). So I've been limping around, trying to keep my foot elevated, and still take care of the kids AND the brand new, not-yet-housebroken puppy! And thus, the blog has been neglected. (Not that you noticed).

So I hadn't been thinking much about Then Sings My Soul Saturday. So I was sitting here this afternoon, wondering what to post, and I had an idea. I could share the kids' songs! Yes, my kids each receive their "own" song that I sing to them! (Doesn't everybody do that?)

I'm going to start with oldest and work down.. Sean's song was "You are my sunshine". I used to sing "You are my son, Sean".. tee hee. I know it's silly but it works.



The video has a silly voice, but it works. Do YOU have a song for your kids? Please share in my comments! Over the next few weeks, I'll share the rest of the kids' songs.

In Other Words Tuesday

Once again, I am a day late and a dollar short for In Other Words Tuesday. But I REALLY didn't want to let this one go by.. Just in case you can't read the quote above:

“What I believe is so magnificent, so glorious, that it is beyond finite comprehension. To believe that the universe was created by a purposeful, benign Creator is one thing. To believe that this Creator took on human vesture, accepted death and mortality, was tempted, betrayed, broken, and all for love of us, defies reason. It is so wild that it terrifies some Christians who try to dogmatize their fear by lashing out at other Christians, because tidy Christianity with all answers given is easier than one which reaches out to the wild wonder of God’s love, a love we don’t even have to earn.” ~Madeline L'engle

So, in case you haven' t figured it out, I believe what is stated above. And yes, I have a very hard time wrapping my brain around all of the implications in that statement. I KNOW that God loves us. I KNOW that by His Grace that is GIVEN to us, I don't have to earn it. All God desires is relationship with us. And it IS terrifying.

One of the main themes on my blog lately has been trusting in God. How can I NOT trust a God who "took on human vesture, accepted death and mortality, was tempted, betrayed, broken, and all for love of us"? I mean, seriously, if God is willing to go through all of that, hasn't he already illustrated that he has my BEST at heart? Lots of people get hung up on tragedy. If God is so good and loves us so much, why do babies die, people get cancer, etc. Honestly, I don't have a pat answer for that. I wish I did! I know that question can be a huge stumbling block for some. I struggle myself recently. Honestly, I occasionally struggled before losing Seth.

I think about how much I love my children. I would do anything for them. And that love, overwhelming as it can be, doesn't even compare to the love God has for me. However, negative things do happen to my children. I can not protect them from every hurt & injury in the world. I don't know that I would want to if I could. When Kayleigh runs the water until it's hot and sticks her finger under it, and it hurts, she learns not to do it next time. And she learns to trust me when I say, "Don't do that". The fact that a negative has happened, doesn't diminish my love for her..

The negatives in my life don't diminish the fact that God loves me. The truth is I live in a fallen world. Sin exists here. Bad things happen. And God loves me. He proves it by sending His only Son to take on human form, and die for me. For ME. For YOU. Really, what more do we need?

To get other people's take on this quote, visit Patricia at Typing One Handed.