Hands Off My Hope!

Transitions...

It is amazing to me how time passes. One minute, it is early September and it still feels like summer and the next minute, it's mid-November with the holidays making their presence in stores and in TV commercials. Each year, October through December seem to flash before my eyes and so far, even though it's still just mid-November, this year is no different.

Of course, living in Minnesota we get the added bonus of abrupt season changes. It doesn't matter if we are going from winter to spring or summer to fall, the seasons here change at the drop of a hat. This year is no exception. Just two weeks ago it was in the 70s and we were enjoying time outside under the warm, mellow sunshine. Today, however, marks the third or fourth cloudy day with snow flurries dropping from the sky. It's a reminder of what's to come.

This cold, dreary weather means that warm coats are a necessity when leaving the house. A couple of weeks ago when I was at my dad's place, I walked into the front hall closet and started to look. My Mom had a slew of beautiful, warm, fashionable coats that I often admired. Knowing that the cooler and colder weather was on the horizon, I decided to put off the task no longer. I told my dad I wanted some of Mom's coats...but that I didn't want to take them home yet. His response was "well, what good are they going to do you then?" With that, I went back into the closet, took about four or five off the hangers and started to try them on. Stacey was there, too and began to look as well. I felt kind of guilty, but tried not to think too much about it. I ended up with leaving with four coats.

When I got home, I brought the coats into our bedroom and put them on the bed. I didn't want to just hang them up in the closet...I thought they deserved a bit more than that. So, they just sat on the bed for a while until finally I realized I had to move them. I showed them to Andy and tried each one on again. As I put on and off each coat, I got a nice whiff of my mom... along with being wrapped by something my Mom wore, I was also wrapped by the oh so familiar smell of her perfume. It was such a soothing moment for me and I felt happy to have brought them home.

Now each coat hangs in our closet and I've had the chance to wear a couple of them with the cold snap here. And each time I put one on, I smell and feel my Mom. It's kind of weird, but very comforting at the same time.

Birthday Thoughts

Today, November 6, is my birthday. And I'm not starting this post out with that as a plot to have you all leave a comment or drop me an email with birthday wishes. Really. I am starting this post with that because today has meaning for me. Not because I am turning a year older, but because of what has happened on this day in the past.

Four years ago on this day, I was 39 weeks pregnant and in serious "nesting" mode. I cleaned the entire house like a mad-woman and enjoyed a nice dinner out with Andy. Two day later, on November 8, Ethan was born.

Last year on this day, I was in the car taking the kids somewhere when my dad called. Mom was in the hospital. I wasn't surprised, but I was concerned. This, of course, was the beginning of the crazy, intense, uncertain time that culminated with her death two months later.  

I remember being at dinner with Andy on my birthday last year. We were at a newer place in town that was impossible to get into. I think Andy made reservations in early September for our Tuesday evening meal. It was small and quaint. The food was delicious, the atmosphere was perfect. It was at this place that I spoke with Andy for the very first time about my real fears that my Mom was going to die. I had no idea what I was going to do without her, what we were going to do without her. She was, after all, the glue of our family. I remember feeling guilty that I thought she was going to die, like I should be hopeful. After all, she was. But I just didn't see it. I was scared.

The week prior shed some light for me. My Mom could barely move and the things in life that brought her joy - her family and especially her grandchildren - could not even bring motivation or a smile to her. I remember how she barely made it over to our house on Halloween to see the kids dressed up. She came at the prompting of my dad, and stayed for 10 minutes. That, by the way, was the last time she was in our house. I also remember how she barely made it to Ethan's birthday party three days later. Again, my dad prompted her to get up, get dressed and get going. And again, she stayed for a short time. On both occasions, she looked miserable...she looked a way I had never seen her look before. She looked ill, diseased, and she also looked sad. In my mind I wondered if she knew this was her last Halloween, and the last birthday party for Ethan she'd see.

I remember these things now because they are so fresh and were happening just one year ago. I don't know if I will always "associate" my birthday with the day my Mom first went into the hospital to fight her final battle, but I'm sure I will remember it as such. Sure, there are so many other things that I remember about my Mom and my birthday as well, like her singing "Happy Birthday" on my voicemail, or her birthday cards that she always mailed ridiculously early, or our birthday shopping sprees. Of course today, I miss those things.

It's amazing though how today, an entire year after these events happened, I feel even closer to my Mom than I did then. Perhaps she was fighting fate and I was running from it for fear of what might happen, and as a result we just danced around what was really happening. What's that called in psychology...the Avoidance Theory? I guess it doesn't matter what it's called or what we did. What does matter is that I do remember and hope that in time, I will remember will not quite such a heavy heart.

Tired Tuesday

I really don't want to complain, but I'm going to, just for one minute. You see, I am exhausted due to six nights of interrupted sleep. I almost feel as if I have a newborn in the house. Ethan has a cough. A very dry cough. And this cough seems to rear its ugly head in the wee hours of the morning, like between 2 and 3 a.m. Of course, it wakes me up; I get out of bed, check on him, bring him some water, and answer his question with the response "yes, you are going to get up soon" (I find it easier to tell him what he wants to hear at this hour, rather than tell him the truth which is, "no way are you going to get up soon...it's the middle of the night!"). I am then awake, tossing and turning, trying to get back to sleep. His cough subsides and once again there is silence in the house. Still, I am up, unable to drift off for quite a while. Finally, I do, but then of course, come 6:00 a.m., his normal "wake up" time, he's coughing once more, as if to say "Hey you guys, now I am up. What do you want to do?" He is my son, and I love him dearly, but his cough right now is the bane of my existence.

So, I am simply going to provide a link to an article you might find interesting regarding breast cancer and Ashkenazi Jewish women. You can read it here.

As for me, I think I'm going to try to get some sleep.

Signs

Life is really busy. And that's a good thing as it can help one cope with the loss of someone important. There are few times throughout the day when I can get totally wrapped up in my own thoughts and become absorbed with what is on my mind. But when I do have those times and those thoughts, I cherish them.

One such time is when I am working out - whether at the gym or running outside. I put my iPod on "shuffle" and get lost in the music and my thoughts. I love the shuffle feature of the iPod because you never know what song is coming next, and I never know what memory or emotion that song might stir up. It is usually during this precious "alone" time that I think the most about my mom, and quite often I will find tears streaming down my face amidst the sweat.

I think about her funeral, her being sick, how badly I want to talk to her, how I wish she could see Ethan and Sasha, how much I miss her. And I think about what she said the night she told Stacey and me that they were setting up hospice. She said "Now I will always be with you." I have to be honest though, I don't always feel her presence. In fact, more often than not I am looking for a sign from her that I cannot find.

Maybe I'm looking too hard. Maybe the signs are there and I just can't see or feel or smell them. There have been a few times when she has "shown up." She appears in my dreams quite often, and one time I took Ethan into an empty public restroom at a hotel we were staying at and smelled her perfume. Every now and then - not as often as he did over the winter - Ethan will look up and say "Look Mama...there's Nana." And Sasha - who was only 10 months old when my mom died - will look at a picture of her and say "Nana." Those are signs.

But I want more. I want her to answer me when I talk to her. I want her to help me when I have a problem or issue to work out. I want her to answer me when I say "Mom?" I know that's a lot to ask for and too much to expect. After all, my mom died...but I'm just being honest about what I want.

I don't obsess over this, really. I'm not angry or bitter that she is not playing the role in my life that I want her to play. Well, maybe at times I am angry, but that's not what I am trying to convey. I don't sit around bug-eyed looking here and there for my mom. It's just at certain times, when I have time to think, I wonder where she is and what sign she might give me. Is she, as she said she would be, always with me?

The other day at the gym as I was engrossed in this thought, my iPod randomly chose an Adam Ant song to go streaming in my ears. I heard the music, then the lyrics "Did I tell you you're wonderful? I miss you, yes I do."  Then, amidst the sweat, tears. Lots of tears. 

A quick Sunday night post

Here we are in the midst of the Jewish holiday season and I realize it has been a while since I have posted. I won't go into how Rosh Hashanah and Yom Kippur were for me because you already know. And I really don't want to get into that right now, anyway. It's Sunday at 9:45 p.m. and after the weekend we had, I'm exhausted.  Sorry if that sounds "snippy" but you can ask Andy; I'm in kind of a "snippy" mood.

What I will share with you is that we are making progress with our marketing ideas for Hands Off My Hope. The website is coming together and so far it looks great! I'm really excited to get it done and launch it. The sales are still trickling in off of this site, so that is good. And a couple of stores at Park Nicollet clinics (a local clinic here in the Twin Cities) will be carrying the book. So it's slow, but at least it's becoming steady. Slow and steady gets the worm.

So, that's really all I have for you right now. Stay tuned for more...

Apples and Honey

Things feel a bit off to me and I think I know why. It is the Jewish New Year, Rosh Hashanah, and I am missing my mom. I haven't slept well for the past few nights, and as such, I'm feeling pretty tired. I am also feeling rather reflective, thinking about things as I lay awake in bed during the wee hours, or as I drive and a certain song comes on the radio, or as I listen to any number of talk radio shows jabbering on about the election and our current state of the economy and wonder "what would my mom think about all of this?" She always shared her opinion about the "topic of the day" and I always enjoyed hearing what that opinion was.

I also am reflecting on what was going on in our family one year ago. Ethan was still getting used to Sasha, Sasha FINALLY stopped crying day and night, and concern started to infiltrate my thoughts about my mom's health...I wasn't yet at the point where I thought the end was coming, but I wasn't comfortable with how she looked and how she said she was feeling. My cousin Warren was getting married in Winnipeg in mid-October of last year, and I remember my mom saying to me "I'm going to take care of myself...I really want to make it to that wedding." I told her she would; about two days after that conversation she was in the hospital with a broken hip, and needless to say, she didn't make it to the wedding.

As you know, that was the beginning of the end. Hospital rooms, rehab centers, the couch at home...those were the places my mom spent the rest of her time, and as the days and weeks wore on, she became more and more withdrawn. I think back to that time now and wonder if she knew she was dying. I really don't know if I thought she was...and if I did know, I certainly wouldn't admit it to myself. Did she know - deep down - that the end was coming? I've asked a few of her close friends if she ever had that conversation with them, and they each said "no," at least not that conversation in the concrete sense.

Last October as I read through the manuscript of "Hands Off My Hope" I was touched - and alarmed - by a section in which my mom recommends things to do to get ready to die. She offered the reader advice of making a video for the children and/or grandchildren so they could always see and hear you. Or, create a list of items you want certain people in your family to have. Or write letters and cards for your loved ones so they have that after your death. I was touched that my mom thought of doing these things...or at least thought of advising others to do these things. Yet I was alarmed with the thought that maybe my mom was getting ready for her own death. That was scary to me. As I've said before, in the abstract, I knew she would one day die but because we never really talked about it, I couldn't think about it in the concrete.

But I wondered what, if any, of her suggestions she would do for us. I know a few years ago she kept bugging Stacey and me to come up with a list of things of hers we wanted. I told her the only thing of hers that I wanted was the South Beach condo...and that Stacey and I differ so much in taste there would be no way that we'd want the same thing. I never made the list and I'm sure Stacey didn't, either. And although we really haven't come close to cleaning out her things, I know there will be no fighting, arguing or positioning between us when we do get to that point.

So, imagine my surprise when one day this past June my dad handed me what looked like a journal. We had brought the kids over to his place since they hadn't been there since the last day of Shiva in January. They played with long-lost toys before we walked to the Green Mill for dinner. As they played, my dad gave me the journal and told me he had just found it in my mom's night-stand. He didn't know what it was; he opened to the first page and saw my name written across the top. There was another one for Stacey which he gave to her that same night. I have to say, I was pretty excited - but nervous and apprehensive too - to read the journal's contents. I thought that perhaps this would provide some insight into what I wanted to know: what was going through my mom's head during her final months.

It took me a couple for days to garner up the courage to actually sit down with the journal and read its contents.  It wasn't from 2007 or even 2006...it was earlier than that and something she had started at a previous setback. It was so nice to read her words and hear her voice tell me what was going on in her mind at that time. It provided some insight...not quite what I was looking for...but something she wanted to share with me at a later point, and I'm glad she was able to do that.

So I guess I just need to be satisfied with the notion that whatever was going on in my mom's mind was something she kept to herself. Was she reflective? Did she know this was her last fight? Why didn't we talk about it until one week before she died when she had set up hospice care? I don't know. What I do know is that everyone has a way of doing everything, and this must have been my mom's way of protecting Stacey and me until the end. As I said, I need to be satisfied with that, but really, am I? Not sure.

By the way, L'Shanah Tovah.

A Picture Paints A Thousand Words

Fall is upon us, and quite honestly, I've been a bit nervous for this time of year to arrive. It was last year at this time that my mom came over to play with the kids for the last time. I remember how on the Tuesdays and Thursdays throughout the month of September, 2007 Ethan, Sasha and I saw less and less of her. September 2007 was not a good month: first my grandma Rueth passed away, and then my mom learned that the back and leg pain she had been experiencing for several weeks were due to a broken hip. Because she wasn't feeling well, she opted to stay home instead of come here to be with the kids and me, and at that time I had no idea that I would never again hear Ethan yell out "NANA!" when she walked into our house. She walked into our house only one more time, on Halloween, to see the kids in their costume.

And that's kind of the point of this entry. I remember last August very well. My other grandmother was in town from Florida, and she and my mom came over often to see the kids. I remember how my mom would lay down on our sofa during their visits to "take a little nap." I also remember Andy saying to me "Your mom looks a bit thin," or "Your mom looks a bit green." Yeah, I agreed with him, but I wasn't really concerned because she said she was feeling OK, and I always took her at her word. Also, it was my mom and she had been beating cancer for so many years...

Well, yesterday afternoon, I had Ethan and Sasha on my lap as we looked at pictures on my laptop. Ethan loves to take strolls down memory lane, and Sasha likes to blurt out the names of the people she sees (usually "Dada," "Mama," "Ethie," etc.). As for me, it's always fun to look at pictures of my children in their various different stages of life and remark to myself how much they are growing. Since the day before yesterday we went through most of the 2008 photos - three times - I decided that we would look at pictures from when Sasha was a baby.

We started out looking at pictures from summer of 2007. Most were of Sasha laying on the floor (since she was not yet 6 months old at that point) and Ethan trying to wrestle her. But then we came to one picture that really made me stop and think. This was a picture of my mom, Ethan and Sasha sitting on the sofa in our living room. Sasha is on mom's lap and Ethan is sitting next to her with a big grin on his face.

The picture was taken at the beginning of September...right before all the shit hit the fan with my mom's health. I remember the day...my mom had brought over some mardi gras beads and masks that were party favors from a wedding she and my dad attended. Ethan was having a blast with it all, and my mom loved watching him play. I took some pictures and uploaded them to my computer. I remember thinking that my mom looked a bit pale, but I also remember not really being concerned. Perhaps I was in denial...I don't know.

But as I looked at the picture yesterday with my kids, I actually blurted out "WOW." Ethan asked what was wow, and I told him that Nana didn't look so good in the photo. That was an understatement - she looked sick. Don't get me wrong...she looked as happy as ever being with the kids, but she really looked sick. And I know last year I didn't think she looked as sick as she did to me yesterday. It wasn't until late October of last year when I realized that my mom might not be able to hold out for another win against her cancer.

Looking at this one photo got me thinking: there are so many people out there - millions and millions - whose lives are touched by cancer in one way or another. And if that's not bad enough, there are so many people out there who are looking at their loved ones and not seeing the "real picture." Whether it's denial or stubbornness or hope, they refuse - just like I did - to look at the situation at face value and deal with what the real possible outcomes could be. Sure, I knew that one day my mom would die, and it probably would be from cancer. But I was so unprepared for the event when it did happen.

And that's why I am so devoted - and fired up, actually - to get back to promoting my mom's book and her message. Not only does it help the cancer patient, but it also sheds light to family and friends. We had a copy of the manuscript on our coffee table for months, but it wasn't until last October that I was able to read it cover to cover. It helped me understand some things that my mom didn't talk to me about. It helped me put some things in perspective. And it helped me understand some of the decisions she and my dad made along the way.

Still, I wasn't able to admit to myself that perhaps this was the end...I was too close, too attached and frankly, too scared for that thought. But now 8 1/2 months after my mom died I can look at that one photo and really see what was going on. My mom was sick, and even though I refused at the time to see it, she looked it.

Where have you been?

OK, I realize it has been months since I last posted, and it certainly was not my intention to start this blog and then suddenly stop. But as time went on and I posted more and more it dawned on me that the "purpose" of this blog was getting muffled. In my mind, it went from "let me share with you what we're doing with my mom's book" to a "let me tell you about my grief." Not that there's anything wrong with that (to quote Seinfeld), but in some respects I didn't want to burden you with my thoughts, which I thought might be happening.

So I stopped writing and posting altogether. And we sort of put the brakes on marketing my mom's book. We needed to catch our breaths, let some time pass and really think about what it is we want to do with the book. We needed focus and direction. And we needed to continue to grieve.

During this time, many of you asked me why I stopped posting, or what was going on with the book, and I really appreciate that...it's nice to know that you still care! But it was at dinner one night last month with my oldest friend (you know who you are) when I realized that I needed to get back to this blog. She helped curb my insecurities with it, helped me understand that what I was expressing was not only OK but important, and helped me realize that I can put a couple of sentences together in a meaningful way. She also helped me realize how lucky I am to have her as a friend...we go back to fifth grade and although we only see each other once or twice a year, when we do get together we start up right where we last left off. She is a life-long friend and I thank her for all the support she has provided to me during this time.

So, here I am writing again and I'm pretty happy to be doing so. I'm also happy to report that my dad, Stacey and I now have some energy to devote to marketing my mom's book and spreading her message. I will be posting what our plans are soon, and we're excited about where this next phase in the journey takes us. First on the list is a website, which will be built soon to accompany this blog.

You know, two days before she died my mom said to me "I want you to help market my book when I'm gone," a request she would not have made if it wasn't so, so important to her. I don't feel it's an obligation to carry out that request, but more of something that I want and need to do. But then I look at the dedication of "Hands Off My Hope!" and read these words:

This book is dedicated to my grandchildren, Ethan and Sasha. You live in the moment, walk in sunshine, and share that with me every day...We have a very special bond! I love you...Nanna 

It's when I read those words that I feel obliged to carry on my mom's legacy. Ethan and Sasha will never know my mom the way they should, and they will never experience again the utmost love she had for them. They lost their Nanna. But through her message of Hope, and through her gritty determination to live a great life with a devastating disease, and through her desire to help others walk down the road she walked...they can see the type of woman she was and learn so much about her eve though she's not here to help them learn it. And that's important.  

Respite

I realize it's been a while since my last posting. I've been tired and busy, not that that's an excuse, but I'm using it as one. I've thought about posting, but just couldn't muster up the mental energy needed. And today is really no different; I didn't have the best night's sleep and I awoke to the cries of Ethan who wanted me - not daddy - to take him to the potty this morning. I could say I'm flattered, but if Ethan's up and Andy's up and I'm not, why can't those who are awake participate in the chore together? But Ethan is just 3 1/2 and although I often find myself trying to reason with him, I know that for the most part it is impossible.

So yeah, I'm tired. But as I awoke and walked into Ethan's room to ask him to please stop crying, I remembered my mom was in one of my dreams last night. It was pretty vivid, and I remember how she looked and what we were doing. It was random and weird, as most dreams are, but it was so good to see her. I'm not going to go into the details of the dream because it doesn't really matter; what matters is she was there.

She doesn't appear in my dreams a lot, but every so often she shows up. She always looks the same; she looks sick, but not like she is dying. And as far as I can remember, there is always a party going on. Not sure what that means...perhaps someone out there reading this interprets dreams and can give me some insight. What I do know is that today, for instance, she is with me...I can feel her presence. It's a nice, calming feeling and perhaps that's why despite being tired and busy, I am posting right now.

OK, her book. We sold a decent chunk at the Shop for the Cure, and on-line orders continue to trickle in. The next steps we are going to take is to get a marketing plan together, with a draft hopefully complete by mid-June. We know there are a bunch of ways to get the book out there - through hospitals, doctors, associations, etc. to name a few - we just need a systematic way of doing it. But as I tell myself with potty training Ethan, "baby steps." I know we will start to get traction with the book and begin to sell a bunch of copies, just like Ethan will consistently use the potty. In fact, he has pooped in the potty two days in a row now - a huge coup, as anyone who has potty trained a child knows. Perhaps Nana has been in his dreams as well.

So, that's where we are. I will continue to track our progress - with the book, not Ethan's bathroom habits, unless of course you want me to.

Value of Kindness

During my mom's final three months, she employed a care-giver named Laura. She was initially hired to help my mom after she broke her hip in October - it was supposed to be a short-term gig for Laura. Then my mom's health started to slide down-hill and Laura ended up helping my mom - and dad - until the end. My mom immediately took a strong liking to Laura and although she was in her life entirely too short, I know that Laura played a tremendous role in my mom's final few months. In fact, Laura brought her husband and four daughters over to my parents' place this past New Year's Eve so her family could meet my mom. My dad got some cookies, and Laura's family enjoyed some quality time with my mom and dad.

I am bringing this up because last week, I received an email from Laura's oldest daughter, Lyndsi, who is a senior in high school. She said she was doing a research paper on the value of kindness and giving, and thought that my mom was one of the best examples she could think of to conclude her paper. She wanted to know if she could ask me some questions to help her gain an even better understanding of who my mom was and why she did what she did. Of course, I was flattered and told her that I would absolutely answer any questions she had.

We met for coffee; it was fun meeting Lyndsi, and much to my surprise and delight, Laura was there, too. We talked about a lot of things, but all conversations led back to my mom; perhaps that's because we were there to talk about her! As far as I know, Lyndsi only met my mom that one time on New Year's Eve, but it was clear to me that my mom made quite an impression on her. She talked about reading her book, bringing it to school, showing it to her friends and sharing it with others. She also talked about the little bit of time she spent with my parents that night, remembering some of the things she talked about with my mom, and the cookies my dad brought.

It was an interesting time with Laura and Lyndsi. It gave me the opportunity to see how my mom impacted people she just met as well as those that she didn't know that long. From our conversation, it was clear to me that they both thought my mom was a very special person. More than that though, our conversation helped me understand the bond my mom had with Laura and her willingness to let people into her life.

This past New Year's Eve was not a good one for my parents; they met with my mom's doctor just that afternoon and determined it was time to set up hospice care. Stacey, Evan, Andy, the kids and I were over at their place for dinner, and although we didn't yet know about mom's prognosis, it was still a fairly somber meal. She didn't eat, but my mom was at the table with us for a bit. During that time, I remember looking at her and thinking how sick she was. She didn't talk and she wasn't engaged. Rather she was withdrawn, yet she wanted to be with us for as long as she could. Half-way through dinner though, she excused herself to go lay down.

We left their place early - partly because of my mom's health, and partly because we needed to get Sasha to bed. About one hour later, Laura, Lyndsi and the rest of their family arrived at my parents' place. Despite being so sick and feeling so awful, my mom wanted to see Laura and meet her family. It was important to her, I know. She could have very easily asked my dad to call Laura and tell her not to come, but that was not what she wanted. It was important to see them that night. As Lyndsi, Laura and I discussed that evening, I learned that my mom was engaged in the conversation and genuinely pleased to see them all.

Some might wonder if it makes me feel badly that my mom wasn't engaged with her own family at dinner that same night, but fairly engaged with people she just met. My answer is No. My mom could be however she wanted to be around us, and by that time she knew she didn't need to put on a "healthy face" just to appease us. But that's not the point of this. Rather, my point is that here it is, five months later my mom's impact still holds. Her book is being read and making an impact. Her actions are remembered, and making an impact. And there is tremendous comfort in that.