Ride The Wind

And ye, who have met with Adversity's blast,
And been bow'd to the earth by its fury;
To whom the Twelve Months, that have recently pass'd
Were as harsh as a prejudiced jury -
Still, fill to the Future! and join in our chime,
The regrets of remembrance to cozen,
And having obtained a New Trial of Time,
Shout in hopes of a kindlier dozen.
~Thomas Hood

Last year, at midnight, Nick was in the hospital. Glenn & I had gone home to give Nick some quiet time with Kate. At midnight, Nick called home to wish us a "Happy New Year." I didn't know it would be the last time I would celebrate the new year with my son. The loss of the future I would have with Nickolas brings me to tears every time I think of all the things I will miss. This new year will not bring me joy. I do not know what the year will bring. Right now I cannot imagine anything more than continued sorrow and pain. I will keep walking on this journey and pray that Nick's spirit will guide me and give me strength to drive on.

Good for the body is the work of the body, and good for the soul is the work of the soul, and good for either is the work of the other. ~Henry David Thoreau

If you surrender to the wind, you can ride it. ~Toni Morrison

So Sad

One year ago on this date, Nick had to return to the hospital. We had spent a pretty much ratty December of 2008, running back & forth to John's Hopkins. After two and a half months of IPOP, Nick had been moved to the "clinic." In my notes I question whether this is a good thing or a bad thing, mainly due to Nick's rough IPOP course and my feeling that Nick really wasn't doing that well. Going to the clinic is supposed to mean you are doing better and you need less monitoring, that things are moving in the right direction and you are starting to get "better." Well in my opinion, Nick was NOT starting to get better. December was a rough month for him and for all of us. He wasn't feeling well for many of the days of this month. We all kept putting a good face on it, trying to wish and hope are way to a better physical body for Nick and all the while thinking that Nick's leukemia at least was gone. Now all we had to do was deal with all the side effects of the graft vs. host, the medications, and try to find ways to get Nick back on track to recovery. Nick's last day in IPOP was December 1st. His first clinic visit was December 3rd. On December 3rd, I wrote the following in my notes. "Nick with cough & cold symptoms AGAIN!" His counts were low and he was not feeling well. So even on the first clinic appointment, I felt that things were not right. After that day, there are numerous times I wrote about how poorly Nick was feeling and how bad he looked. This continued to get worse as the month wore on. Now in hindsight, I KNOW that Nick's lungs had already begun changing starting in late November. He coughed for EIGHT WEEKS!!! This was his lungs trying to tell us that something was going on.

Christmas came and Nick did not feel well. He had started with headaches that continued to worsen as each day in December passed. He was losing his appetite and his weight started to drop. By Christmas day Nick gave it his best effort, but, we all knew he did not feel well. As we opened presents on Christmas morning, Nick was just not himself. He looked terrible and I remember thinking to myself, "Oh dear God, this could be Nick's last Christmas! This might be our last Christmas together!" I never said this to anyone. I was so scared that this would make it come true. I didn't understand why I would have this horrible feeling. As a nurse I knew all the bad stuff that could happen and yet, I didn't want that to be the case for my son!! I wanted to be positive. I wanted to be WRONG to chalk it up to over-reaction and over-protection! I prayed to God to save my boy. I prayed that whatever was going on with him was just temporary and he would pull through it. I didn't know what was wrong with him, but, I knew SOMETHING WAS TERRIBLY WRONG!"

The day after Christmas was so bad. Nick just didn't feel right. He continued to have headaches, nausea, vomiting, he was unable to drink enough fluids and his appetite was gone. I called the doctor that day and they told us to "watch" him and call back if anything changed. Well things changed for the worse over the next twenty four hours and we called again on December 27th. Thank God one of the doctors I really liked was on call. She told us to come in right way. We HAD NO IDEA WHAT WAS WRONG WITH NICK.

The first days of that admission were a blur. Poor Nick was in SO MUCH PAIN. THE HEADACHES WERE LIKE MIGRAINES AND HE WAS NAUSEOUS AND THROWING UP pretty much around the clock! No one could figure out what was wrong...days went by until finally a different attending came on and he had a suspicion (which no one told us) and he ordered a lumbar puncture. The LP was done on New Year's Eve! So Nick suffered for five days before this test was done and still no one knew what was going on. It was on January 2nd that we got the UGLY NEWS THAT NICK'S LEUKEMIA WAS BACK IN HIS SPINAL FLUID and this was what was causing all the symptoms. This was just one of many devastating blows to come. Little did we know that this admission was the beginning of the END for Nick!! It was during THIS ADMISSION that Nick's CT scan showed changes called "ground glass opacities." It was during this admission that the pulmonary doctors consulted on Nick, saw this CT scan, told us it would need to be followed up, but, "they were not worried right now." This is when Nick should have had pulmonary function tests done or at least scheduled for some time after his discharge. Everyone was so focused on his CNS relapse that this little piece of data (along with all his other symptoms of cough, SOB, pale, dizzy, etc) got lost in the shuffle and Nick's lungs fell through the cracks!

My God it just breaks my heart into a million pieces to think of this stuff. But, this is what I will be reliving from now until next August and most likely FOREVER!!!! I feel that I have to retell and retell and talk about all that went down, because now it is as if I am watching a movie that I was in and I cannot believe all that Nick went through. I cannot believe what we all went through. I cannot believe that this is how all this is going to END! I cannot stop questioning if only we had caught his lung problem sooner. If only the doctors had listened to me, if only things could have been different, maybe my beautiful son would still be alive or maybe he wouldn't have had to die in a hospital hooked up to a ventilator and maybe I wouldn't be feeling such horrible pain right now. It seems like it will never stop. How much pain is too much? How many hours, day, months, years are enough? This has been going on since May of 2008, the day Nick was diagnosed with this horrible disease. It started then and I don't know when it will ever stop. All I know now is that on this date one year ago, after a sad and bittersweet LAST Christmas, my son had to celebrate his LAST New Year's Eve and New Year's Day in the hospital. Nick didn't even remember any of it due to the pain killers he had to take. He started the New Year with a ten day hospital admission and a diagnosis of leukemia relapse only four months to the day of his BMT! And compared to what was to come, this now seems like child's play!

How is a mother's heart supposed to accept this? How will I ever learn to live with theses thoughts and memories of what happened to my child?

“It is a time when one's spirit is subdued and sad, one knows not why; when the past seems a storm-swept desolation, life a vanity and a burden, and the future but a way to death.”
~Mark Twain

“I ask not for a lighter burden, but for broader shoulders.” Jewish Proverb

Nick would always tell us and the doctors that his back was strong and his shoulders were broad. His attitude was "bring it on," I can handle it. He did not know his enemy would be so formidable and yet he still fought so hard to win because life and those he loved meant so much to him. I think everyone at the hospital was always amazed at his ability to carry this "burden" as I describe it. Nick would not think of what he went through as a burden. He would see all he was going through as a way to hang onto life, to be able to stay with his family, his friends, and the people he loved so much. I pray to God to give me the broad shoulders I will need carry on in this life. I pray for my son to show me how to be a better person even without his wonderful presence in my life. I love you Nickolas. I need you so much right now. I love you more than a wagon full of puppies. Mom

The Edge of All Light

Some days I feel like a person with split personality disorder. Each personality is ruled by emotion and my emotions are volatile and unpredictable. There is no map for this journey and there are no instructions as to how you keep all these emotional people in check. Christmas is two days away and I am numb to any feelings of joy or happiness. It is a horrible feeling. I cannot be happy, my beloved son is gone. The sad me cries all the time. I was in the attic purging things and I found what I now call "Nick's radiation head." This is the honeycomb form Nick had to clamp onto his head during his radiation treatments. We all hated that thing and we almost threw it away. Nick did not want to look at it because it evoked such bad feelings so we put it up in the attic. Whenever I go up there I see it, only now I treasure this ugly thing because it is exactly in the shape of Nick's head and when I put my hands on that form, it feels like Nick. I just want to hold his head on my lap and feel his peach fuzz hair growing back. I want to hug his neck and tell him how much I love him. Sad me thinks about how much I am missing my beautiful son and how we are all grieving for him. There will be no Santa for Nick this year or any other year for that matter. I will not get any Christmas cards from my son. And getting cards with only three names break my heart in two. It's OK to write Nick's name! He is still part of our family. Luckily I don't usually send cards, but, in future if I do, I will include Nick's name with a small cross or an angel drawn next to his name. This way he is still with us, he is still part of us, just as he should be and ALWAYS WILL BE!

I am glad I do not have to do any shopping (except for Sara and Glenn). I cannot walk through a men's department without thinking about Nick and what I might be getting him for Christmas. I have found old Christmas cards he gave me and I wish he liked to write more than just "Love, Nick." I yearn for words and parts of him that I can hold onto so I don't lose him. I am so afraid I will lose him again if my memories don't stay strong.

Angry me does not want to find a "new normal." Angry me does not want to create "new rituals." Angry me could care less about "finding ways to integrate the loss of your child into the rest of your life." I don't want to live the rest of my life without one of my children. How can I celebrate anything right now, let alone, Christmas! Angry me wants to know why every time I go to a doctor they keep telling me that there is nothing wrong with me. "Look again you idiot's! There has got to be something wrong with me...my child is dead!" How's that for holiday cheer. There is a lot of anger and sadness. This does not make for a good me.

Nancy Nurse in an effort to promote the "healing" me will now present something I am sure everyone will like and maybe it will grow on me. But for now, it is just a lifeline for me to try to hang onto. I am going through the motions, forcing myself to TRY to find a way to spackle over this gaping wound in my heart, in my family, in my life. It is one of those new traditions that I might try, cause when I read it, I liked it. And since I get to do whatever I God damn well please right now and forever (this is like pulling the leukemia card, only I will now call it pulling the "dead child" card...see angry me again. Sorry! That is a bitter pill to swallow, isn't it? Especially at this time of year. Deal with it...I have to. This is why I have to stay away from polite society. When Nick was alive, I had hope. Now I only have despair.)

So here is the new tradition, which is not my idea, I found it on a website that offers ideas of how to cope with the loss of your child over the holiday. Get a wreath, small tree or garland. Get five candles and place the candles around the greenery. Light each candle as a representation of the following ideas.

"As we light these five candles in honor of you, we light one for our grief, one for our courage, and one for our memories, one for our love, and one for our hope.

Candle #1 - This candle represents our grief. The pain of losing you is intense. It reminds us of the depth of our love for you.
Candle #2 - This candle represents our courage -- to confront our sorrow, to comfort each other, and to change our lives.
Candle #3 - This candle is in your memory--the times we laughed, the times we cried, the times we were angry with each other, the silly things you did, and the caring and joy you gave us.
Candle #4 - This candle is the light of love. As we enter this holiday season, day by day we cherish the special place in our hearts that will always be reserved for you. We thank you for the gift your living brought to each of us.
Candle #5 - And this candle is the light of hope. It reminds us of love and memories of you that are ours forever. May the glow of the flame be our source of hopefulness now and forever."

“When you have come to the edge Of all light that you know And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly ." ~Patrick Overton

Just Come On Home

Kate D. posted this on Sara's facebook. She said that Nick really liked this song when he heard it on Chuck. Here's what Kate wrote, " juuust remembered this song. nick and i were watching chuck one night in the hospital and this song came on and he loved it. hope it makes you smile and not cry, but chances are it will make you cry." Here are the lyrics too.

It's okay to have scars, they will make you who you are
It's okay to have fear, as long as you're not scared of coming here
And in the middle of the night, just call if you wanna talk
'Cause you know that I wanna talk too

It's not bad of you to think of what might go wrong
But you can't blame me for secretly hoping that I'll prove you wrong
It's okay that I pray that you will miss your flight
And have to stay with me another night

And it is brutal, it's brutal, why can't you see
It's brutal, it's brutal, where have you been
'Cause we're far apart and my lonely heart
Finds it hard to get through the night
You pull me out of the dark and now it's light
You pull me out of the dark and now it's light

When we're out in the market and out on the streets
I've got a pocket full of problems and a pocket full of seeds
Hoping something good might grow out of this mistletoe
And I won't have to erase your memory

I like the way that our arguments stop when we fall asleep
And the way that your body feels when it's wrapped around me
And I'd like it if you made it to mine by Christmas Eve
So you can hold me
And we'll watch Christmas TV

And it is brutal, it's brutal, why can't you see
It's brutal, it's brutal, where have you been
'Cause we're far apart and my lonely heart
Finds it hard to get through the night
You pull me out of the dark and now it's light
You pull me out of the dark and now it's light

So come on home, just come on home
Just come on home, just come on home... (repeat)

I love you Nick. My heart aches for you every minute of the day. I miss you so much, now more than ever. Please come home to see your Mama. I love you more than a wagon full of puppies. Mom

Four Months

Four minutes,
Four months,
four years.
My heart aches all the same.
The sadness flows from my eyes.
The tears never seem to stop.
Missing you Nick.
Missing your joyous soul.
Missing your smile.
Missing the way you would brighten my day.

Missing the love you brought to all of us.
Nothing is the same without you near.
I will never be whole again.

On this date four months ago today, my sweet son was taken from this world by lungs that betrayed him and a system that could not save him. These ugly truths haunt me and I fear they are tearing me apart. I am doing the best that I can, but, it feels awful right now.

Today is the Worldwide Candlelighting Ceremony sponsored by The Compassionate Friends. The candle lighting event takes place all over the world in remembrance of all children who have died. This event always happens on the second Sunday in December. If you go to this site, you can leave a message for Nickolas. I hope everyone will take time to send your thoughts and love to Nick. It makes me so sad to wonder where he is and what he is doing. Is he happy? Is he afraid? Is he hungry or cold? Are his lungs healed now and he is free? I wish I could KNOW that! I wish I could have one of those Hallmark movie moments...and it would stop hurting so much.

Last week I received a poem from one of my dancers at the studio. She wrote the poem after Nick's memorial service and mailed it to me this past week. I was so touched that this wonderful young lady would take the time to write a poem about Nick and though it made me cry (as everything these days is wont to do), it also made me happy to have this poem in my hands that reminded me that our wonderful Nick is not forgotten; that he was and is much loved, as are those of us who must remain here on this earth and carry this burden of grief. Here is her poem.

"Nick"

I didn't know you in life,
But I know your mother.
She offers a second home,
And I've grown to love her.
I didn't know you,
But, I've prayed for you,
I didn't know you,
But, I've cried for you.
And now that your gone,
The piece of me that cared for you
It burns brightly, it lives on.

I didn't know your kindness
or the way your serenity filled up the room,
But, I've seen the lives you touched,
The people you brought together.
You may not be here right now,
But, those lives will be changed forever.

I wish I could have met you
To see this wonderful man in person,
But, I guess now I'll have to wait
For God to open his pearly gates.
Please wait for me, Nick Pippen
Wait for me to come,
Be the first to welcome me,
Into God's Kingdom.

Daring All Things

"A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path." ~Agatha Christie

All but Death, can be Adjusted --
Dynasties repaired --
Systems -- settled in their Sockets
Citadels -- dissolved --
Wastes of Lives -- resown with Colors
By Succeeding Springs --
Death -- unto itself -- Exception --
Is exempt from Change
~Emily Dickinson

I tried so hard to protect you my son, to keep you from harm, and never let anything happen to you. It is no wonder I feel so helpless. I am so sorry Nick. I don't know why this had to happen to someone so wonderful. You are forever and always in my heart. I love you. Mom

Tears On My Pillow

I cry a lot. "They" say that crying is a good thing. Sometimes I cry so much I can't cry anymore. So for a little while I don't cry. Then as if by magic, I start crying all over again. I am not afraid to cry. I know I need to cry. I have boxes of Puffs Plus strategically placed around my house. I am sure to bring tissues whenever I venture away from the house. Here is some good stuff about crying from a book I am reading called "A Time To Grieve" by Carol Straudacher.

1. "The tears we cry when we are sad have a different chemical make-up than the tears we cry when we are not sad."

2. "Crying from sadness gets rid of toxins in the body." Good! I never much cared for toxins.

3. "Crying is nature's way of releasing stress and helping me to heal." Based on the buckets of tears I am crying, I should be well on my way to being "healed." Why don't I feel like I am any better?

4. "It can be harmful to suppress one's need to cry." I feel fortunate that most times I can cry. I do feel that I have to suppress the tears when I am out and about. But anywhere I am alone is a good time to cry...the car, the shower, public restrooms. I used to cry a lot in the bathroom at the Hop. I always used to think of it as the "confessional" on MTV's Real World show, only without the cameras.

5. "Deep sadness and bouts of crying go together." These crying jags may seem endless but they will run their course.

6. Following the death of a loved one, "there is a well of feelings that resides in each of us. We must dip down into that well and pull and pull until EVERYTHING has been pulled to the surface." Crying helps to get those feelings out of the well. "By unleashing the feelings that cause me to cry, I am helping them to gradually dissipate, to lose their power. I am setting them free so that I, too, may one day be released from grief's torment."

I sometimes wonder how I will ever stop crying. The grief and sadness I feel are sometimes overwhelming. People see me and think I am doing OK. They have no idea what I am going through. I wish I could help them understand. I guess this is the best I can do right now. I do take solace and comfort in the books I am reading...they put what I am feeling into words and help me see the depth of the well and the reasons for all the emotions and feelings that are in that well. If the depth of the well is proportional to the love I have for my sweet boy, well, that is a damn deep well. Will I ever be able to pull everything up from that well? How many tears will I cry?

"The emotions may be endless. The more we express them,
the more we may have to express." ~E. M. Forster

"Tearless grief bleeds inwardly." ~C. N. Bovee