This week three children with Batten Disease entered into Heaven, the youngest being 4 years old. Today I had to answer questions about my girl in a phone interview; questions that were hard. Questions that take me back to the beginning of this journey and all we have been through. Every step of the way has been difficult. All consuming. Stressful. Sad. And it isn't often that I reflect on that but on days like today it's really hard not to.
I looked back through this blog one night last week when I was up late alone. I looked at the photographs and saw myself in them, but knew that I wasn't really present during certain events and for a pretty long period of time. Just last year at the Christmas Parade that Rache and I just took the kids to, I see the photos but I don't remember.
That is what the entity of grief does.
It steals joy. It steals time. It steals memories.
And yet, there is no stopping it or trying to control it. Grief is it's own beast.
And once I realized that, I sort of welcomed him into my heart because I knew that he was there to stay whether I fought him or not. Eventually, after we were acquainted and I began learning how to live life with him as a constant companion in my soul, his presence wasn't so heavy anymore. He was more of a passenger in the ride that I was taking rather than the driver leading me to and fro down a path of very sad, hard days.
I truly believe that when my husband left this family, I was able to cope so well because I was already so comfortable with grief at my side. We had been riding together for quite some time, after all, and it was through a journey that was far more devastating than anything he or the world could throw my way. I looked at grief in the face and asked him, "Are we going to do this? Are we really going to strap in and go for a ride again?"
And to be honest, grief looked back silently and said nothing.
So we moved on.
We are all on journeys through this life.
Some of them involve happiness and bountiful days of sunshine. Others are walking with very demanding stress and utter despair hounding us at every turn. I think that wherever we are, it's very important to embrace it and to swim through it with the idea that we will eventually feel whole again. We will eventually feel 'normal' again. It will most likely be a new normal, but it will feel ok.
I know, having walked through a version of grief, that it feels almost conflicting to think about feeling normal again. I remember looking at the rest of the world (for a very long period of time) and being so angry that life around me was just going on around me as it always had when I was enduring some of my hardest and saddest days. First, I knew something was wrong with my baby but no one could tell me what. And then, they told me what was wrong and oh yeah, her body is basically rejecting itself and she's dying.
Oh yes. I was angry at life.
I have read many articles and several books about parents with terminally ill children and how grief looks different for us. First we grieve their life while their living. Then we grieve their life when they're dead. In between the two we are in constant turmoil over trying to consume every moment with them and know that each breath could be their last. There is anger, guilt, sadness, frustration, disconnect, regret, and a million other emotions that no piece of literature can possibly explain. All I know is that in all of this, there is still great purpose.
Grief serves a purpose far beyond itself.
It helps us cope. It helps us breathe.
Grief gives our thoughts an anchor and helps us feel meaning.
This week especially I have been thinking about the families who will be celebrating this year's holidays with the void of a loved one. And not just that. But I've been thinking about anyone whose heart is broken; who is grieving something.
God prepares us for grief by speaking about it often. Sometimes it brought me comfort to go there and read His words and other times it made me sad; it was overwhelming, felt heavy or even left me conflicted.
One thing I know for certain, though, is that in my deepest sorrow, He was there. He held me tightly when I couldn't reach out and grasp for Him and He never let me go.
My hope is that if you are grieving, you'll let Him hold you.
It may not feel the same as it once did. Or maybe you've never reached for Him before. He may not wrap you up in a way that feels comfortable now. But He will be there. And He won't let go.
He will see you through.
After all, He grieved a Son once too.
"Blessed are those who mourn for they will be comforted."
Absolutely beautiful! Your gift with words is breath taking! Thank you again for sharing with us all.
Your writing is so touching, you are truly gifted. I know your blog inspires me and many other people.
I have been following your blog for about a year now. You and your family are beautiful. Thank you for sharing your journey with us. Today I wanted to comment and tell you this post really touched me very deeply and I am so grateful for your wisdom and beautiful words.
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