Ali was scheduled for a stem cell transplant and high dose chemo in January, 2005. It was a last ditch effort to get rid of the cancer. It was experimental and extremely dangerous. There was a very real possibility that the chemo itself would kill her, but, as Mayo Clinic had given up hope in April, we saw no other choice.

In December of 2004, Ali began to develop severe pain in her joints and her lip was completely numb. There were explanations for the joint pain, but, the numb lip remained a mystery. I decided to go online and investigate.

When Ali was first diagnosed with cancer, I did not research. We were at Mayo Clinic so I knew that we had the most knowledgeable doctors in the world for her particular cancer. I did not want to know the odds; Ali was not a statistic she was my child. Ali’s dad spent a lot of time researching but, I wouldn’t let him tell me anything regarding a possible outcome. I never regretted that decision, because when she looked into my eyes she always saw hope.

When I made the decision to investigate the fact that her lip was numb, I figured that it was due to something innocuous. Unfortunately, the more I read, the more my heart sank and I was fearful. This is when I knew.

Ali was scheduled for pre-transplant testing on December 28th in Chicago. On the 26th, Megan was at her dads, so Ali and I made a spur of the moment trip to Grand Haven. I took her to the mall the next day to spend her Christmas money. She was walking around just being Ali; making me smile on the outside yet, on the inside, my heart was beginning to shatter. Imagine a mall filled with smiling teenagers while you watch your daughter pick out t-shirts that you know she might never get a chance to wear.

We shopped for a while and then I took her to Olive Garden for lunch before we headed back to Indiana. At one point in our lunch, Ali l stopped our conversation, looked into my eyes and said, “mom, what’s wrong?”. I told her nothing was wrong, held her hand, kissed it and changed the subject. She knew that I was lying. The hope was gone from my eyes.

The next day, all of our worst fears were confirmed. The cancer had spread to the bone marrow and then some. There would be no transplant.

Last night, was Craig’s son Lukas’ birthday. He wanted to go Olive Garden. It was the same one that I had gone to with Ali and the moment we walked in all of these emotions washed over me. I excused myself to go to the bathroom and gathered my composure. As the waitress showed us to our seats, she headed toward a different area of the restaurant and I breathed a sigh of relief. All of a sudden, she changed direction and headed toward the area where I had sat with Ali.

Inside, I was thinking, this is a big restaurant, there is no way she will sit us there.  Wiith each step my heart started pounding. No, no, no, please, not… that… booth.

I didn’t ask to change, because I didn’t want to put a damper on Luke’s celebration. Luckily, I was able to sit where Ali had sat, so I didn’t have to look across the booth and see her--or not see her.

When things like that happen, something so entirely against the odds, I wonder if I am supposed to carry some meaning away from it. Later, as I was lying in bed, I figured it out.  As usual, it was a matter of perspective.

I have tended to look back on that day with great pain and sadness. But for Ali, I believe it was a great day. It was the last day where there was still hope, the last day that buying a cool t-shirt mattered and it was the last day that she and her mom would get to spend together doing things that for the previous 17 years were taken for granted.

It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity . . . Charles Dickens, A Tale of Two Cities

I'm dedicating this to my friend Cutter.

(http://cutter.tblog.com)

I visited a number of different blogs yesterday. It struck me how there is this whole undercurrent of life going on all around me that I was oblivious to. You pass people every day and have no idea of their struggles or their pain. You cannot judge by expression or demeanor; there are smiling people who carry the weight of the world on their shoulders and sour people who only think that they do.

One of the most eye opening things of the past few years has been how judgmental I was for much of my adult life. I wish that I could take it back but, since I can’t, I will learn from it instead. It is easy to sit from a high place and imagine yourself wise; to convince yourself that people are in certain predicaments because they are uneducated, unmotivated, or just bad people.

I used to see the world as very black and white; I peddled it, it was my mantra. The world looks very different when you are at the bottom of the mountain trying to claw your way back up.

That is why the concept of blogging is so amazing. It makes the world a smaller place. It is a strong dose of reality and allows you to view the human experience from every possible angle. It lets you ride along on someone else’s journey.

Sometimes when I am out somewhere surrounded by happy smiling people, I want to scream out loud. I want them to know that while I may be at Target shopping for a birthday present…I’m suffering, I’m hurting, and I’m scared.

Blogging lets me scream without the risk of someone calling the authorities.

The concept of a weblog gives people not only a voice, but, a much larger pool in which to swim. It opens the world up. Somewhere out there you will find someone who understands what you are going through—someone to gather round you, rally you, congratulate or console you. It doesn’t matter how many friends you have or how close you are to your family, in reality, we just want to be understood; to be known and loved in spite of who we are or where we find ourselves.

I think that reading about someone else’s life—the highs and the lows—helps to put ours into perspective. It also puts the world into perspective and gives us hope; for every death there is a birth, for every mean word there is kindness, for every struggle a celebration and for every person whining about how unfair life is there is someone who has it even worse inspiring us to keep fighting.

I get very few comments on this blog any more...that is an observation and not a lamentation. I understand that it's depressing to follow someone down the road of grief. I believe that perhaps it is too painful for people to come here and be face-to-face with Ali's picture. Maybe it makes all of life's uncertainties seem far too real and far too possible. This blog has become like that quiet part of my life--the secret, aching, part that feels like a nightmare that you can't wake up from. It hurts to think about and every time you look at those brown eyes and that Audrey Hepburn smile, you get a glimpse of my heartache. It is almost impossible to imagine that this life--this bright, funny, graceful, and beautiful life--has vanished from our presence. How am I to wake up each day and pretend that there is no void--no chasm?

I take no credit for the person that she was or the humble spirit that endeared her to you without effort. She was genuine and she loved with such a pure heart. She understood what it meant to live--not just whole-heartedly but, unselfishly and sometimes I think that's why God called her home so soon.

I am not sure what hell is like--but, I cannot imagine it a worse place than even a day of agonizing for one more word, one more touch, one more kiss or one more I love you. To wish for the opportunity to say without exaggeration-- I want you to know that every single day that you were on this earth you brought me such incredible joy.

But all of this is tucked away...like this blog.

I know that there are people thinking it's been well over a year...get over it for God's sake. Maybe I am just weak, but, I don't think I will ever get over it--I will just try to get through it--one hour, one word, one emotional outburst at a time.

I am taking a break today. I’ll do some laundry…but, at my leisure. For a while it looked like it might rain but, now the sun is shining and the waves are high enough for me to consider walking down and jumping in.

I have spent the last week packing up my apartment. It was just a year ago that I pulled up in a Penske truck and unloaded the packed remnants of my 44 years on this earth. During that time, I painted the living room, my bedroom and the kitchen…I put up curtains that I made and filled the old oak shelves with my significant collection of books. I did my best to make it a home for Megan and I…and CoCo. It was a good transition year for both of us, but, Megan misses her life in Goshen and I don’t blame her.

She arrived at our apartment on Saturday with her friend Shauna in a borrowed bus. When you are twenty…cash is much more of a priority than practicality. Bus…moving van… it’s all the same. Unfortunately, Megan didn’t inherit my obsession for organization, but she did inherit my penchant for four-letter-words—a s was evidenced when an un-taped, over-packed box exploded in the middle of the street. I really didn’t want to stop and help because it was so much fun just to watch.

As she backed this huge bus out of our narrow driveway without incident, I realized that she was not my little girl anymore and while I was sad that we weren’t going to be roommates, I was happy that she was happy…and so I didn’t cry when she left.

While I hid the difficulty of the moment on the outside, on the inside many emotions were brought to the surface…some I did not recognize until they came out in other ways. As I was walking out of Meijer one afternoon last week, I burst into tears without any warning. I barely made it to the car before I was overcome with body-racking sobs. I had no idea where it came from and I wondered if perhaps I was no longer going to be able to bend and this was how it felt when one begins to break.

I think that there were many things that I was trying to hold at bay. The idea of a truly empty nest, leaving a place that had come to feel like home, the idea of facing yet another change. Even packing Ali’s things seemed more difficult this time. The numbness had worn off and it struck me that with each move she is farther away from me. This will be the second place where she is not and moving yet again brings home the stark reality of time’s passing on without her.

So, now, I am tired…past the muscle, flesh and bone...down to the soul, tired. I told Craig that he’d better be sure about this because my next move was going to consist of one pine box with me in it.

After five years on a very bumpy ride, I am blessed to have been given such a soft place to land.  A day of rest; looking out over the waves and living my life beside someone who in my heart I have loved long before I knew him. There is joy in being able to look forward to the future and there is freedom in the knowledge that no matter what happens along the way…I have the strength and capacity to bend without breaking.