This is Stunning to me

Thoughts tossing around...

I was blessed with another holiday with my daughter.

And in two days another birthday with her.

I am very nostalgic right now remembering her birth.

Everything about my journey with AC blows me wide open. How I so wanted a daughter. It meant this healing thing for me. I can't begin to describe the many things it meant for me to have a little girl.
And then to learn my baby girl was dying.
I cannot describe what it meant to me to learn that.

I don't know what it means to be strong, but I do know what it means to survive. I am not sure they're the same thing.

And I don't know what it means to be on top of the world, but I know what it means to feel complete and whole for a moment in time.

I know what it means to feel time is both your enemy and your friend. To wish for more time and to wish for peace, even though they are contradictory.

I know what it means with every fiber of my body to wish I could take away someone elses pain, take it on myself, and give her the chances she'll never have.

I know what it means to feel complete and total helplessness and ineffectiveness, but to still show up and take the shots because someone is counting on me to.

But I cannot make my daughter well. I can't save my child from being killed. I can't stop what is happening to her little body. She's passing through my life and teaching things like the above and I can do nothing.

She is so beautiful. And funny. Everyone should hear her giggle. It's the best sound. And everyone should see how she acts when she's excited about something it's so adorable. Everyone should get caught up in her determination about things because its so endearing. She's A.M.A.Z.I.N.G. I love her spirit. She's been an amazing gift and everything I always wanted in a daughter. She kicks ass the way I always believed my daughter would.

I'm so proud of her. And I am so very blessed.

Overdue pic

(I have notes to add, but Amaris is having a bad day and needs me. I will be back later to update)

AC's Illness and their website

Amaris's illness has a website that was recently redeveloped. It's much better than the old site but has been kept under very tight security for a while now. A long story and basically the reason for needing to have it redone.

I found out yesterday that it will be opened for reading to the public and wanted to give the link.

http://cockaynesyndrome.net/main/

All of the families there are going through what I am....we are watching our children struggle with this disease. We ourselves are struggling everyday with knowing that our children are dying. Just since I joined the site, children have been born and died.

We're doing a lot of focus on grief work now and helping families with this. It's a great thing to be a part of and I wanted to share this with you guys.

Your presence heals me

I have been spinning out of control and writing has given me a way to reach out and make it stop. But more importantly, your coming to read and mostly being willing to respond, has been what has healed me. In the book “The Angel Letters” Dr. Fried writes, “In bearing witness to our pain, a true listener aids us in our journey toward acceptance. Our need to be taken seriously, to be understood and responded to, is central to our growth.” Tracey, Loonymom, and Anonymous, this is what you’ve done for me. You helped me to grow out of a cycle that was very literally killing me. I feel in awe of you three and the miracle of this. Thank you doesn’t seem like big enough words.

I’ve referred to “Angel Letters” in the last two posts and have to write a bit about this book. It is written by a psychologist at a pediatric oncology center about the lessons the dying can teach us, specifically children. It has singularly changed my view of how I engage this journey with Amaris. He does a lot during the book to validate the pain of this and how important writing/telling the story is, and this is what has made me see I need to write again. I realize that over these last three years as I’ve shared my life here on this blog, how much the readers have meant to my healing. Thank you for bearing witness to my pain. For being willing to share it and not turn away.

Tracey, I’ve been less than kind to you and you still come forth with love. You amaze me. In doing this you heal me. You're a wonderful person for still being willing to be there for an asshole like me and it shows how much a heart of gold you have. Thank you for reaching me this way. You've changed me. Looneymom, you’ve always been there for me front and center and I sometime sit back after reading your posts and wonder what I could ever have done to deserve a friend like you. You're always there for me and there aren't words to express my gratitude. And Anonymous, please email me so that we can catch up. I use loaworks@yahoo.com.
I love ya'll.

Time and a glimpse into my life

Even in our sleep, pain which cannot forget
falls drop by drop upon the heart,
until, in our own despair,
against our will,
comes wisdom
through the awful grace of God."
Aeschylus




Pericles said that time is the wisest counselor of all.

I am finding that time teaches when we’re not aware we’re learning, because this is sometimes the only time we will listen. Often, our screaming at the world or shouts of despair or the simple distractions of living are so overwhelming that we can’t hear the whispers of wisdom.

It’s remarkable to me how constant and patient it is, this teacher. How no matter what we’re putting our lives, ourselves, our bodies through, it faithfully continues its monastic chant, believing we will one day wake with the knowledge it’s yielding. I’ve come to see that it’s right…..that we do get this knowing at some point. And that the knowing can feel like a loss of innocence. It can feel like a double-edged sword, to be wiser yet less innocent. And with this sword, I find I stab my own heart.

It happens in the meantime. I tear myself apart. I chew off my own leg to escape traps I imagine are there. I have learned that I am in constant battle with this life and that seems to be the theme of my existence, even before birth, I’m told. And angry as hell! Angry while I’m doing it and angry afterward as I heal from my own damage.

So it wasn’t any surprise to me recently when I reflected over the last three years since learning about AC’s illness that I felt a great amount shame at myself, my behaviors. Me, being me. I don’t know how else I would have acted, just that I know I have managed to run things into the ground more than they needed to be. That I managed to do less than I will ever be proud of, somehow. That I come out of it hating myself a little more, regretting things still, and shaking my head. Perfectly imperfect, as always. Only…..more so than necessary, as usual.



I know one thing and that is that I no longer expect I will do things different than I know how. But I also know that when I know how to do things better, I do.
I know I’m still so far from well, whole and healthy that it’s pathetic and sad. But I know also that I am learning. I have also learned the painful truth that demons revisit. They knock on the door again to see if we will be stupid enough to answer. And when we do they laugh and point and make a mockery of us. And when we curl up in a ball they begin to kick in earnest …laughing harder still.

I know that parents of dying children act out in the strangest of ways. We become any variety of addicts a lot of times, clinging to something that takes us out of this pain. Dr. Norman Fried said it well in his book ‘Angel Letters’ when he wrote, “Mother’s of ill children speak of shattered dreams; they pray for healing and await their nightmare’s end…… We ask God for mercy even as we know we have been refused.” The thing is that at the end of this current nightmare, begins another nightmare. I will go from watching Amaris die, to trying to learn how to live without her. Over these last few years, knowing this has become unbearable. It’s an unimaginable existence all of the time. But knowing why I’m losing it doesn’t make it ok. And it not being OK doesn’t change anything either.

So there’s no escape. And I don’t want to GO anywhere, I want the pain to stop. And the only answer is to stop chewing away my own flesh and find peace in this place, as impossible as that seems. I have no other choice. I have to be here and I’m sick and tired of being sick and tired. Of clawing away at myself because this hurts so much. There is almost nothing left of me anymore.

Or maybe it isn’t peace I should try to find, but if I could only learn to surrender to what’s happening. Resign myself to watching my child die, then learning to live with that and life without her. That THAT is my fate. But how is a mother to do that? My fear is that in surrendering to it I will be so overcome with the feelings of grief that they will kill me. That my heart will simply stop. I see now that I believe that my functionality through all this comes from my fighting this. I’m afraid if I stop fighting, I will simply……stop.

I don’t know the answer. This blog isn’t going to end with a neat little epiphanous paragraph bringing it all together in a way that makes one feel good, warm, fuzzy feelings. I’ve learned to be real comfortable with not knowing the answers and that good, warm, & fuzzy doesn’t happen often. And the reality is that this is the truest glimpse into my day to day life as it is. Unanswered, unknown, painful, raw, and in despair.

Amaris on the rebound

Amaris is healing. She's still in the process of it, of course, but I see improvement every day. The attitude coming back. A little more whine in her voice. The laughter and joy. Wanting to go, go, go! the way she always has. She definitely tires out quickly and still spends more time in bed than she used to. But last week, midweek, she started hanging out in the living room with us some. Then her teacher from school came to visit her. Then I took her for a short walk in the stroller. It seemed that after each event she seemed to expect that should happen again the next day or there would be a fit to deal with. It was good to see her throw a fit!

It's good to get to exhale and reflect on it some. I know God is giving me 'dry runs' because He's good. And I know I need to make the most of it and learn. Last week I heard the Carrie Underwood song So Small and listened to the words differently and then I read a short writing by Leo Buscaglia. After that it all came together for me. I've copied the writing from Dr. Buscaglia below. The thing is that I realized how scared of death I've been, especially this time with Amaris's pneumonia and how close of a call it was. But how accepting my child's terminal illness, and more recently with this brush with death, I've been able to accept my own death. It's only when I die that she and I will be in the same place again one day.

This is another gift of her illness, because in accepting my death, I have learned what really matters.

And like the songs says, that mountain I think I've been climbing, was really just a grain of sand.

Learn the Joy of the Moment
by Leo Buscaglia, Ph.D.
Freud said a lost of really nice things and one thing that he said was so many of our problems and our inability to live stem from the belief and we will never die. We think we have forever.

If you think about it in the back of your mind, you always think it's the other person who dies, not you.

Well I have news for you, We are all going to die!

The is the most democratic thing that has ever happened. No matter who you are, how wealthy you are, how illustrious you are, how many degrees you have, how fouled up you've made your life, how beautiful you've made your life, you're going to die.
But why fear it? You only fear death when you're not living. If you're involved in the process of life, you won't wail and scream. If you've treated people in your life beautifully while they were alive, you will not throw yourself over thief caskets screaming, "Don't go, Don't Go!" For goodness sakes! We don't even let people die in dignity. We let them die guilty by screaming, "Oh, please don't die."
What a weird concept we have of death. We don't want to take children to funerals. Some of you had it explained that everything dies as flowers die in winter and then grow again. Death is a continuous beautiful process of life. Then when you've seen it, you don't fear it,

Death is a good friend, an awfully good friend, because it tells us we don't have forever and that to live is now; therefore, you see how precious every minute is. We read it and say, "oh yes, that's so true."

But do we live that way? How wonderful it is to be with the moment when you see a flower. When somebody is talking to you, for goodness sake, listen and don't look over a shoulder at wheat else is going on. Cocktail time. There's no greater insult. If you don't want to be with me, don't be with me! That's all right, I can adjust to that. But if you are going to be with me, will you be with me? You say, I am going to look at the ocean." Do you look at the ocean? "Oh, isn't that a beautiful sunset." Do you mean it, do you see it, do you recognize it will never come again?
Death teaches us--if we want to hear--that the time is now.

The time is now to pick up a telephone and call the person that you love.

Death teaches us the joy of the moment. It teaches us we don't have forever.

If teaches us that nothing is permanent, It teaches us to let go, there's nothing you can hang on to.

And it tells us to give up on expectations and let tomorrow tell its own story, because nobody knows if they'll get home tonight.

To me that's a tremendous challenge.

Death says, "Live now."