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)