Wednesday, January 7, 2015

The other shoe...

There is something that so many moms (or dads) that have lost a child have in common and that is that we all are waiting for the other shoe to drop. Once we've lost our babies we constantly are just scared that something else as awful will happen. Usually (at least for me) it is that something terrible is going to happen to one of my other children. Either the ones who are older than Grace or the ones who have come after her. We know we are not immune now, bad things happen to good people and the loss of a child does not guarantee that nothing else bad will happen. Many of my CDH angel moms fear being diagnosed with CDH in a subsequent pregnancy.  For most of us though, nothing horribly terribly bad does happen. Most of us still go through unpleasant things and things we'd really rather not but a great many of us baby loss moms aren't faced with something as huge as we were faced with with our babies.

But some baby loss families don't get that privilege of never again feeling such heartache. Some families who have been through so much, so much more than so many of us can imagine are asked to walk again, a path that they don't want to, that we can't even imagine.

I am asking everyone reading this to please, pray for a beautiful 2.5 year old boy named Dylan. Adam and I met Dylan's parents in the NICU, their daughter was across the room from Grace and she was such a fighter for 6 months but she waits in heaven for her parents too. A year later, we had Caleb and they had Dylan and his twin sister. This is one of the best families we know.
Dylan was diagnosed right before Christmas with a very rare type of cancer. Once again they are fighting alongside one of their children. He has already been through surgery and has begun chemotherapy, but this is going to a long and hard road for them. It absolutely breaks my heart that they are going through this and I am praying daily for them to have strength and for Dylan to overcome this, for the Lord to heal Dylan. Please will you all pray and continue to pray for this family as well?


Friday, January 2, 2015

The year is coming to an end. Another year gone by without our Gracie Girl. Another year of healing, and yet another year of indescribable pain. Another year of struggles and another year of triumphs.
She would be turning 4 in 3 short months. That just seems impossible. 
I want to blog more in the coming year, maybe it would be helpful. I have many drafts that I never publish because I think "who cares" or figure either nobody is reading anyway or if they are, they are tired of the same old story. But, maybe that's not true. And maybe it is, but maybe it would be helpful to me. 
"If I get it all down on paper, it's no longer inside of me,
Threatening the life it belongs to
And I feel like I'm naked in front of the crowd
Cause these words are my diary, screaming out loud
And I know that you'll use them, however you want to"  (anna Nalick:Breathe)

That's what it feels like, like I need to write here, to get it out. Maybe if I come here and write more, it won't be stuck inside of me, slowly eating away and bottling up until it comes out in ways that are unhealthy to me, to my family. Finding the time is difficult though. Priorities. I've been giving it a lot of thought. Perhaps allowing myself to get it out, here, is more important than making sure I get one more load of laundry in, or making sure the toys are picked up. I think I forget that I do need to be spending time working on my mental health and grief more than I do. It does need to be a priority and its usually what I push aside most often and it's just not healthy anymore. 

I hate the way grief is. I hate how I don't even see it coming. I hate how it is ever changing. How the triggers change so that I can't always know that something is going to affect me. I hate that I cannot control it. I hate how it affects my children. My sons, do not deserve any of this, they are just children. Thier innocence stolen so young. 
We've come a long way in the almost 4 years since she was born and the 3.5 since she died but we still have such a long way to go.  I don't think anyone at all has any idea how much we still struggle and most of the time, I don't think we even realize it and certainly don't advertise it.
It's time and I'm ready. I want happiness. Of course we've had happiness, a LOT of happiness in the years since Grace was born and we lost her but there's always sadness. There's always SO much sadness. I'm ready and I want to live a life, not just myself but our whole family, that makes my daughter proud. For 4 years it has been, "yes we are blessed, we have 3 amazing sons, BUT our daughter is fighting for her life" or "yes, we are blessed, we have 4 sons who we love so much BUT, our amazing girl is dead" or "yes, life is good, we are raising 5 healthy and striving kids BUT it wasn't supposed to be this way, there should be 6". I want to stop with the BUT. It doesn't mean I want to forget or leave her behind but what it means is that I feel like our grief is destroying our family and I want to make it stop. We are allowing it to become us. We've shied away from friendships because it's just easier to not let anyone in than to share our story. We've missed opportunities because we were too consumed by our sorrows. Relationships worn thin. Our grief projected onto others. This year I want to change and I want simply to be better. This is our story, this is our life and I'm ready to really live it.