Sunday, December 7, 2008

Still here. Still struggling.



I"m not even going to attempt to apologize for my lengthy blogging absence.. I do feel badly about the fact that I may have driven off all four of my faithful readers but at this point, I"m blogging as much for me as for any readership I may or may not have.

The past couple of months have been so, so hard. I am still overwhelmed, underfunctioning and missing Seth so badly sometimes it actually takes my breath away. I had an interesting thought yesterday and for anyone who does happen to be following our journey, I wanted to expound on it a little bit..

I am often amazed that every step of this journey has been harder than the last. And for me, it started 3 years ago before Seth was even a twinkle in his Daddy's eye (My parents used to say that!). When I was pregnant with Kayleigh, a friend of mine discovered she was unexpectedly and unpreparedly pregnant. During her pregnancy, she was told her son was very sick, not developing normally, would not live to birth and if he did, would die shortly thereafter. I think because I WAS pregnant with Kayleigh, it hit me a little harder than it may have otherwise. I clearly remember thinking "I could NEVER handle that happening to me".

And then it happened. When I was 12 weeks pregnant with Seth, I received the "there's something wrong with your baby and we don't know what it is" phone call from my ob. The possibilities were endless and none of them sounded very good. Of course, we already know the end of that chapter, Seth was genetically normal with Hypoplastic Left Heart Syndrome. Yes, that pregnancy was very hard. Waiting for Seth was, to that point, one of the hardest things I'd ever done in my life.

Then Seth was born. At five days old, he underwent open heart surgery requiring time on bypass and five days in recovery with an open chest. And I thought all the uncertainties of carrying him inside me were hard! He was extubated, re-intubated, extubated again (a total of 3 extubations). He didn't have the energy to eat and had a g-tube surgery. Finally, 7 weeks later, they told us to bring him home. And I freaked out because it would be HARD. (Seriously, I cried the day they told us we could get discharged in a day or two, I was one scared mama).

Seth came home. And it was wonderful to have him here, and hard. He was tube fed and on a continuous drip PIC line and taking a bunch of meds, and it just felt like it went on and on and on. Now I had four kids, FOUR, and Kayleigh was just barely two and I couldn't do it. But I did. We all did.

When Seth was five months old, he had a heart catheter. And it was hard handing him over to the doctors. And accepting the fact that afterwards, he had to come home on oxygen. And we did that. And Seth came home. And on September 10, we checked into the hospital for his Glenn and the next morning I handed him over to the doctor's for surgery. And it was hard.

On September 17, at 10:30pm, we received the phone call that Seth was not doing well and we should come back up to the hospital immediately. I knew that meant he'd likely coded and I prayed, crying all the way there. And it was hard. And a week later they told us there was neurological damage. And it was hard. And a week after that, things looked more bleak, and it was hard.

Finally, we requested a DNR for Seth, put him on comfort care and loved him while we waited for God to heal him or take him home. And I remember thinking that NOTHING I ever did in my life would be as hard as letting him go. Or making funeral arrangements. Or burying our sweet baby boy. But as I had been all along, I was wrong.

The hardest thing? By far the hardest thing is learning to live without him. Facing Thanksgiving and Christmas, hearing our big boys cry for their little brother. All those things are so much harder than what came before. But isn't life like that? Don't "they" say that "what doesn't kill you makes you stronger"? I look back on all this, still in the midst of it and I realize few things.

I didn't react the way I thought I would. (Do we ever?) I always thought if I ever lost a child, I'd just crawl in bed and stay there for weeks. Of course, I started all this thinking I couldn't even handle a pregnancy with a questionable outcome. God's grace is such an amazing thing. I believe that the "I could never do THAT" thinking comes from the fact that standing on the outside looking in, we are assessing a situation on our OWN strength and thinking we could not handle it. Likely, on our own, we could not.

Fortunately, we do not have to handle the hard things life gives us on our own. We are given the freedom to handle them with the Lord. No, that's not right. We are given the opportunity to let the Lord carry the burden for us, all I have to do is ask for and accept the help.

I wish it were as easy as it sounds in the above paragraph. Life is STILL hard. We live in a fallen, sinful world and bad things happen. Babies die. I"m still a mere human being, I don't have all the answers figured out. I struggle every day. I feel like I learn something new about grief every day. I'm still learning how to allow the Lord to carry my burdens for me. And I have great hope. For as much as every step has felt harder than the one before, the strength of the Lord has continued to lift me up. I am still struggling. But I am still here. And there is bright light at the end of this tunnel, thank you, Lord Jesus!

"My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. (2 Corinthians 12:9)

16 comments:

Evil Twin's Wife said...

I wish I had the perfect words, but I know I don't. No one does. I can offer you a hug across the miles though. {{{{HUGS}}}

Cathey said...

Thanks for your openness - these words may help others understand just a little bit more about how hard life can be and that God is big enough to carry the biggest of burdens. He doesn't take us out of the hard stuff but He is right there walking through it with us. And when we DO come through the other side (it does happen eventually) we are more compassionate, more loving, more useful. And at that point we understand more about God than those who don't walk that path with Him. That's why we are His favorites!!!

Stephanie Earls said...

What a wonderfully written, ever so touching post. So glad that I found your blog thru the well rounded woman. I pray that you will continue to feel the comfort of our Lord's love for your family. We lost a grandchild several years ago and someone gave me an article from a magazine to read. It stated that he was too pure and too perfect to suffer the sorrows of this world and he was exalted straight into Heaven. I hope he runs and plays with your Seth. Bless you for sharing.

r2kouklas said...

I pray that you find the strength to get through this most difficult time in your life. Thank you for sharing your 'journey' so openly. You have the love and support of a lot of people (not just 4). I too will offer you hugs from across the miles {{{{{HUGS}}}}}

Glenn said...

Kathryn - your words are deep, profound and most of all real. And everything really real hurts. You and your family are much loved and regularly prayed for.

Rebecca said...

I saw your comment just above mine on Rocks In My Dryer and wanted to hear more of your story. Wow, I just can't imagine the loss and heartache you have and are going through. ((HUGS)) I pray that the Lord would bring comfort and peace to you and your family.

Ashleigh (Heart and Home) said...

Wow--what a powerful, touching post. It's been so good for me to realize, during my hard times (which are nothing compared to losing a child!) that when I look ahead in the anticipation of those hard things, I can't always see the grace that God will provide when we actually walk through the storms. He's always there, always carrying us, always knowing what will come next. Such a comfort...

oh amanda said...

I'm here from Rocks in My Dryer...such a beautiful post! I have no advice, of course. But what you said is right--his strength is perfect. And I always cling to the verse in Psalm 37 (I think)...God is close to the broken-hearted. He's near you now!

Laura said...

I, too, saw your post on Rocks in My Dryer, and I followed the link to your blog. We have something in common. My oldest child, also named Seth, died much too young also. He and his twin Owen were born at 23 weeks and lived for 1 and 2 days, respectively. As I read through your posts, I remembered the dark days (and months) after my boys died. It's been almost 8 years, and our home is full with 3 girls now. But life is never the same. My heart will never be the same. I no longer grieve daily, but I miss my boys daily and anxiously await the day when we will meet again. No one will be covered in tubes in heaven! Our boys will be healthy, and your heart will be complete. May God bless you, Kathryn, in your struggles. Yes, his grace is sufficient, and your are so profound in your description that life is just hard. Thank you for writing.

Melanie @ This Ain't New York said...

Kathryn,
I saw your comment at Shannon's and wanted to stop by. Nothing I could say can ease your pain. Just want you to know I am sorry for your loss and I know this time of year is hard. I hope you will always feel God's arms around you, in good days and in bad.

KatScarlett said...

Oh Kathryn, I'm getting to this very late but had to comment. I sat here reading this blog post with tears just streaming down my face. It was one of those moments again in life where I wished I could reach through my monitor and hug you close and tell you how much I love you. Know that you are always in my heart and on my mind and close in prayer. {{{{K}}}}

heresthediehl said...

Kathryn, I came here through your comment on my blog. What a tremendous post. I can't imagine the loss you're enduring, or the pain your whole family is going through now, but I pray that Christmas is somehow easier than you're imagining it will be.

Kristi said...

BIG HUGS --You have amazing strength....God be with you and your family.

Jenni said...

Saying a prayer for you tonight...

sumi said...

Kathryn, I just found your blog after the comment you left on Lysa's.

I could have written your post. Sometimes I wonder how I could be so broken, yet so made-whole at the same time? It can only be grace, and I have found through our terrible loss that God's grace can cover ANYTHING and follow us ANYWHERE.

There's something amazing that is born in our hearts when we realize that.

God bless you...may Jesus hold you close this holiday season.

Anonymous said...

Kathyrn , I have been praying for you and your family that god will give you all a peace and comfort during this time I just want you to know that we will always be there for you and your family you and lealand have been a big blessing in our lives you have helped us out through the hard times in the hospital with you being next door to steven we got to know you and Lealand and when no one was there for us you guys where there to help us out even when we where haveing a bad day and didnt even want to go in the room you helped us through it! you will always have a special place in our hearts . Love Steven and Holley