CrossRoads

I don't know if any of you ever pay attention but there is music on this blog. I like music. I am one of those people who actually pay attention to the lyrics. The songs on this blog reflect different moments in my life with Ivey. Some I sing to her, some are on my IPOD under Ivey's songs, some make me think of her and others comfort me. I have always been like that -

So I have found myself at the cross roads with Ivey's blog. I am not sure what to do actually. This is a journal of time passed and time to come. I have been struggling with going on with it for some time now. It has actually been well over a year, almost two, where I have struggled with the things I draft here. Wanting to record every detail of Ivey's life, yet trying to decide how to edit it for reader's eyes is killing me. And it has felt in the past two weeks that it is time to make the decision.

Thus the battle of purpose battles itself out.

To set the record straight, I did not originally choose this medium for my thoughts. This whole thing started with friends trying to wrangle the chaos of information following Ivey's birth, but I've told you all that before. No new news there. And somehow in the days that followed it became Ivey's blog…the minimal recordings of her life. Or so I thought. That was my intent.

My intent. Well, it is not something I had with this blog. The ease of typing, keeping things organized and most importantly for me – meeting other people, especially the parents out there in this big world with children not like Ivey, but so much like her – drew me in. The omnibus world became small and I was not alone in it anymore.

Alone. That word alone is so vague. To be surrounded constantly by friends who would give up most any obligation at the drop of a hat for us, but even they don't really understand – no matter how big their heart is or how hard they try. There are days I find myself not being able to breathe in Wal-Mart. Those days become doable because I know out there some other mom is roaming the isles too with a deformed child - in a wheelchair - making odd sounds - being stared at – and they are pushing on. It gives me strength, literally to this day.

Purpose. This blog is about Ivey, it always has been. But without a doubt it has always been from my perception of my life with her. I have learned enough from the short years that have passed that her perception is probably nothing like that of my own. I could keep a paper journal, but this was the official beginning to documenting Ivey's life – and I haven't been able to take myself from it – it would be like leaving part of Ivey behind.

I want to remember where we have been to appreciate where we are. The connection between Ivey and I delves beyond the normal mother-daughter bond. But only another mother and especially one of a special needs child – multiply disable child at that – can truly appreciate what I mean. Ivey cannot survive without me. My life is her life – her life is my life – literally until the day one of us dies.
Is it a gift? After two years of trying to decide if it is okay for me to discuss Ivey and her life, I finally decided during the last hospital stay that it is entirely my gift to others to talk about Ivey. Unfortunately, in the wake of Ivey's awesomeness I find that I talk about myself. Whether I can proceed with this blog or not, one thing is finally clear in my mind- Whatever happens with Ivey is not an isolated event – it takes me with it.

Her miracle. There are times I feel qualified to be her spokesperson. In a way the task became mine the day she was conceived. By some miracle, the first of many, a baby that was never complete managed to survive nine months. Somehow my body was enough. In the time since then she has climbed mountain after mountain dumbfounding us all. Still I often wonder who I am to speak so openly about her life. Would she really approve of this blog?

All and all there is one other piece of my heart that this blog holds. It is the unspoken piece of our life with Ivey, one that we were warned of in the first days of Ivey's life. A piece that steps into the dark corners and leaves us to wonder about the quantity of time she has on this Earth. That fear never leaves me. Ivey has already lived years past the initial predictions. Have you ever been told that your newborn child might not live to make it home? And now look at her, – so full of exuberant life. I believe in miracles. But I also believe in reality. I know, just as Matt knows, that our lives may see more days than our daughter's. That is why when you come through my side door – the door that friends and family enter – there is a quote from Abraham Lincoln hanging. "Live a good life – And in the end, it's not the years in a life, but the life in the years."  It is our reminder. There will be a day that I come here to this blog to read my memories and hold Ivey only in my heart and mind.

Here we are again back at the cross roads. I wonder often whose story I am really telling. Is it her amazing story? Is it her story tainted by my struggles to thrive in her world? Or is it my story overshadowing her? Are our lives are so intertwined that they can no longer be told separately?

I feel that Ivey still has an amazing story to tell. Starting Friday we will begin a new chapter in her life. One that may not be quite as hard as other times in her life, but one that will alter the continuity of the schedule we have created, which in our world continuity is security. I am uncertain of what to do at this point. I don't want to edit anymore. I want people who come here to accept that things are not always blue skies, gum drops and rainbows. For us it is sometimes black skies...then the moment where that first ray of sunshine peeks through the clouds makes all the difference - that's what makes Ivey's story so amazing. I am hanging onto balances..one moment continuing on …..the other closing shop.

The pendulum is begining to swing and I think it is time to decide.
In the meantime, I leave you with our music. Maybe listen to some lyrics and find our comfort in them.