Its so hard to sit and share. It is becoming very difficult to find the words to express how we are doing, how Ash is, and what is going on in our lives. I've been writing in this journal for over 4 years now. It contains a lot of stuff. Stuff that spilled over onto the "pages" from my heart. Its just that at this time in my life I find that my heart is experiencing something that I've never known before. I have a hard time explaining my emotional state to myself let alone the world.
My heart is heavy, its hurting, and yet it still experiences happiness. I can hurt so deeply and yet still feel a twinge of happiness as I steal a glance as one of the children bend down to whisper precious words to their sister. I can't explain it. A feeling of great pain pierces my heart for fear of them not having much more time to minister to her, but then a warm feeling of happiness covers me as I witness the love they shower her with in those moments.
I can rock that little girl on my lap and cry huge tears as I try so desperately to imprint the moments in my heart permanently and as I begin to slow I feel her little body rocking me back and forth urging me to continue and then the tears turn to tears of joy at her insistence.
As I change her dressings my heart breaks at the screams that come from her, and then as I finish up I witness her tiny hands signing to me "all done, finished, hold me please". Such forgiveness from her in those moments after we are done reminding me that although she doesn't understand the pain she knows their is love behind it all.
At this time in my life I find myself spinning in circles. Literally I spin in circles around the house. What do I want to accomplish in these days. How do I spend this time. Do I really want to prepare the closets, the dressers, the rooms? No...that is time wasted. I need to spend it holding, rocking, playing, walking, talking, listening, watching, car pooling. Those are the moments that are going to matter, and still the other things need to be done, should be accomplished so that when the time comes the house will run smoother for them all.
There are days when I am numb. I sit and will myself to move, to do, to accomplish. It doesn't happen. Strength does not come. I hope to be an example to the children and yet my own heart hurts so deeply and wonders about questions so large that their are no answers to and I fail to do what I am supposed to be doing.
I'm tired of wondering. I hurt deeply from worrying. I don't know how to mend their hearts or how to dry their tears. In the late night hours, as exhaustion takes hold of Blake and Allie, I see the cracks and the tears begin to flow. When they are the most tired is when it happens. As I dig to try and figure out where the tears are coming from the answer I am always given without fail is "Ashley". They can't get anything else out. As soon as they say her name they begin to sob and I do my very best to make sense of this all for all of us. Its like they are happy, holding themselves together, behaving like normal kids and then without warning it happens. I get it. I completely understand. The same thing happens to me. I cry the most at night as I lay my head down.
I wish there were a plan we we could follow. A book with instructions? An answer key to look at? There is none. No one can tell me how to live this life. No one can help me mend the breaking hearts of my children. No one can change the course we find ourselves on.
It kills me that I run through this scenario then that. Trying to prepare for each. The holidays? Where will she be? What should we do? Do we snatch our children and run to spend time together doing something amazing and making a memory of that or do we plan a quiet, peaceful, tradition filled holiday here in our home? I want to do both. Just in case its our last. I hate that thought. In case its her last. Who has to think on these things? What parent should ever have to plan Christmas as if it may be the last one their 5 year old ever has? I find myself scrambling to get things in order in case we aren't here. It disgusts me that I have actually bought things in preparation for her Christmas in case its spent in a hospital room. There is something so wrong about having a box of items purchased and set aside to bring magic to my daughter just in case she has been listed and the call comes in before Christmas day.
See why I hesitate to share? To write? To journal? The thoughts in my heart are painful. They are hard. They don't make sense to most and I get that. Its ok. This is so unreal. We know we are being watched by many. I keep things like this to myself because I know that unless you are living it or have lived it that it may seem like we are planning not to receive another miracle. That is simply not true. Its not, but this life hurts. It just does.
So today I bought the kids yearly Christmas ornaments, and I planned the theme for Ashley Kate's tree. I may even start decorating it by the weekend. I have a lot to get done and I want to make sure it happens for my family no matter what else is going on in our lives. This mom's heart wants to bring peace to my home and to my family and what comes to mind is Christmas. The warmth, the feeling, the tradition, the music, the lights, the smells, the everything. Our home is full of happiness during the holidays and that is exactly what we so desperately need at this time. So...I'm going to bed. The Christmas music is already playing because its what Ashley chose to listen to a week or so ago. It makes her happy as she tucks her tiny hands under her cheek and snuggles underneath her quilt. It makes me happy too as I stare at her till my eyes can no longer see through the tears. Oh, how I love this girl.