From my sister:
I read and reread the comments to all of my sister’s posts about Tanner. I do follow them but have never made one myself.
I am a strong woman and a mother… I thought I knew what I was capable of, I thought I could beat my demons by pushing my body and spirit to the limit… but I have been brought to my knees, again.
This isn’t meant to be melancholy or seeking sympathy, more an exercise in exorcising myself of pain… and to urge others to be compassion. I have to watch my child die, slowly and surely. As so many mothers and fathers do… Yes, there is always room for prayer and faith but sometimes you lose that… parents that face what I am facing know that. I don’t think life is unfair, nor am I complaining, it is what it is and there are lessons to be learned, but given all of that, it does not take away the pain.
Tanner’s diagnosis has brought me a lot. It has taught me to love better, live more freely and just laugh. EVERY SINGLE MOMENT COUNTS. Hug your kids. Tell your loved ones you adore them. Make a total stranger smile. He has taught me courage and dignity, something I always thought I had but I have learned so much more from him. He is slowly dying, being robbed of his independence, day after day . Yet he smiles – most of the time – and faces it. Faces the future that we both know, and faces it with grace and dignity and spark. That in itself gives me strength because I cannot possibly understand what he is going through in his mind, day by day, losing muscle after muscle.. As his Mom, I would lay my life down to spare him this, yet he never complains… he cries sometimes but he never complains. I cry often lately but on my worst worst day I cannot possibly compare it to with what Tanner goes through, or any other sick child. Their courage and strength astounds me.
With all of my heart, I ask that you take the time to consider another child, another mother or father that has to face life and death. Reach out, if with nothing more than a smile and a hug. It means something. We have been absolutely blessed by the support we have received… And my heartfelt thanks goes to all of you that made a tremendous difference in my son’s life… there are too many to name but if you are reading this you know who you are. I only hope that we can do the same for someone else.
My sister sent this to me last week. I wasn’t going to post it, because I thought, this is not the week. This is the week of Blissdom; this is the week of inspiration and hope and rah-rah-rah and rah-rah-rah just doesn’t sit well with enveloping clouds of dark. I thought. But then I thought again… this isn’t dark. This is – my sister’s words are – the very embodiment of light and hope. This is why we do this, why we share our stories, these stories, his story: so that we can move each other and be moved to care. And to act. And to love. So I posted it. Please drop her some love.
For her. For me. For them.