"It's not who I am underneath, but what I do that defines me." ~Batman (Batman Begins)

So. I couldn't decide what to post about. Not for of lack of material. Always have plenty of that available to me. But just couldn't commit. I eventually opted for the easy route. I needed easy today. This made me smile. I mean watch this video and try and tell me that it didn't make you smile too. Who doesn't love a superhero? Who wouldn't love these superhero's in particular? Only thing missing is a woman. Say Batgirl. I would be Batgirl in a heartbeat.

Amazing idea. Many thanks to my daughter Caitlin for showing it to me and I think perhaps maybe a call is in order to Zoey's home away from home, CHLA, and see who does their windows. I definitely think LA needs their own superheros scaling tall buidling in a single bound, don't you?

And, in case you are feeling like a superhero today, consider going over to my Team in Training fundraising page and making a donation to my marathon in October. This week we lost one of Zoey's fellow honored teammates  here in Ventura County. Alisha was a vibrant, beautiful young woman, with her entire life ahead of her. She was a nurse by profession, who gave lovingly and unselfishly to her patients and who, a year and a half ago, found herself on the other side, as she was diagnosed with Hodgkin's Lymphoma.

Alisha never gave up hope. Not even and most especially, not at the end. So hope is what we cling to and hope is what we strive for as we look to find a cure to Hodgkins and all other blood cancers. To the end, this has got to remain our goal. Cure. This week we wield our superpowers and we do it for Alisha.

 

The kindergarten graduate ...

And just like that. Another school year over. And the youngest Needham has bid adieu to kindergarten.

And we of course leave with a mix of emotions. This place, these people, have been our safe haven for the last 3 years. But the time has come to move on. The decision on where Zoey would attend first grade was not an easy one. In the end, we opted for a school about a half hour away. It is a school exclusively for children with special needs. All levels of disability. I walk in the door of the building and I feel like I am with my "people". It's where I belong and more importantly, it is where I believe Zoey belongs. At least I think so. At least I hope so.

One of our other options put her at a school literally, a 2 minute walk from our house. But the program was relegated to a portable unit, set out on the schools blacktop and the space was just not ideal. Far from it actually. Convenient? Absolutely. Right for Zoey? My gut told me no. I do have to tell you, that it was a truly heart wrenching day, when I toured the different options available to us for Zoey's placement next year. Reality was just difficult when it was, no way around it, right in your face.

 We could of course go the full inclusion route, but, and I might get back lash from those within my special needs community, but the full inclusion deal, was just not worth the fight. The teacher was freaked. The school district was more freaked and I have to say, I just am not up for the fight. From the powers that be or from the parents who would have, without a doubt, felt that my child's presence in that classroom will take away from their typical child's learning experience. But you know what? I understand that to some tiny degree. Zoey can be loud. Zoey clicks her tongue and sucks on her tongue, at a decibel you would not believe. She does not speak so the only way she can get your attention is to scream or grab you or pinch you. I would imagine that those things, as well as others, might be disruptive at times in a classroom. I get that. I don't like it. But I understand it.

 The next option presented to us was a "special day class". It is a classroom that has children with disabilities but ... their disabilities, and again, some may not like this, the majority of kids in that class were much more "abled" then Zoey. In our area, in the school she is at right now, Zoey, as we say it sometimes, is the most "specialist" of all. This is a true statement. I stood in the back of the classroom and watched centers being done on the day I toured the special day class. Kids were doing sight word reading and letter tracing and even early math skills and I thought to myself, what in the hell would they do with Zoey? And the thing is, THEY, didn't have the answer. They have never had a child like Zoey in that classroom, so therefore there is no curriculum in place nor did it seem as though they were willing or anxious to implement one for her either. The teacher was nice. The classroom was as typical as they come but my child, would just get lost in the shuffle day to day. Add the gtube feeding, the spoon feedings and the diaper changing and well, deers in headlights is the only analogy I can come up with.

So, I'll take my child and go. To place that for now seems right. Thinking about catching an aid up to speed on Zoey and her particulars seems daunting right now so I think I will just not think about it. I think I will instead focus on this precious child. We will soak in family time and beach days and the rest, the rest will come soon enough.  

"Toughness is in the soul and spirit,not the muscles."~Alex Karras

Four years ago today, Zoey Grace was released from treatment of leukemia and fittingly, today happens to be National Cancer Survivor Day.

June 2, 2009 culminated 8 months of intense chemotherapy to rid her body, once and for all, from the a blood disease that threatened to take her life.

 When Zoey was first diagnosed, the end seemed so very far from sight. The protocol set in place on day one, looked terrifying and simply horrific. I just could not wrap my head around the fact that soon my precious 19 month old daughter would have toxins, poisons, for lack of a better word, streaming through her tiny body. Eventually I came to some semblance of peace with the process and as each infusion began, we would refer to it as "liquid hope"and surrendered to the process as we tried to stay focused on the goal. Cure.

We relinquished control, control we actually never had to begin with, and we did what needed to be done. Hour after hour. Day after day. Month after month. All in the name of cure. And those months spent in the hospital, living on that floor, opened our eyes to a life we could never have imagine. Ever. A life filled with the deepest of sorrows and dwelling oddly and uncharacteristically beside that sorrow, were some of the greatest beauty I will ever experience in my life. The children and their forgiving and fighting spirits taught me what living was truly about.

Those same sorrow and blessings are why I am raising funds for the Leukemia and Lymphoma Society. Trying to do just a little to honor all those that have crossed our paths over the last 4 years. Whether it has been people who we have gotten to know and have forged great lifelong friendships because of our common bonds or whether it is the faces, that perhaps I only passed once in the hallway of 4 East or in the clinic on check up days. These are whom I run for. Our fervent  hope is that one day a diagnosis of a blood cancer will immediately translate to a cure. We should strive for no less.

We lost far too many of our friends on that floor. Children with their entire lives in front of them, cruelly taken from this world. Families left shattered and broken and forced to begin navigating this life without them.  I am running in memory of those who never reached cure. The ones who should be here. The ones who touched my heart on 4E and become the wind at my feet. I run for Sol Merie and Sunudo and Leah and Kai and Christopher and Klein. And all those behind the doors, and inside rooms, that I never met, that never found their way home. It's not my muscles that will get me to that finish line but rather the souls and spirits of all those that go before me.

*One of my favorite photos. Our buddy Christopher, who loved sweet Zoey and who spoke to her in baby talk, "Goo-goo, gaga", every time he saw her. We miss him and his family, they miss him more.

Please join me as I run for a cure. Please consider sponsoring me as I run with Team in Training the Nike Women's Marathon. Visit my fundraising page. Easy to donate and of course tax deductible.Truly every little bit counts and I am grateful and humbled by every cent that helps me reach my goal.

"In this life we cannot do great things. We can only do small things with great love." ~ Mother Teresa

You may have noticed my two new links to the right. They will take you directly to my fundraising page if you care to follow them. I put those up the other day and bombarded my friends on Facebook asking for donations. If you are my friend over on FB, so sorry for the repeat here. But to me, its well worth it. And it may happen a lot over the next 5 months until I reach my goal. 

Come mid Saturday morning I will have completed my first training run with my other fall season teammates. I am not at all ready. Just am not. My head and my body have been less then cooperative. I ran the Huntington Beach Half Marathon at the beginning of February and then a mere week and a half later, Danny and Caitlin lost our sweet Gracie. And my running, stopped. Completely. I have been trying to work back up to, at the very least, not gasping for air on a 3 miler but boy, when you haven't run for that long of time, it is like starting from scratch. But start I will and by October 20th I will hopefully be more then ready. Fitting I should be running in October as October the 29th will be the 5 year mark since Zoey's diagnosis of Actute Myelogenous Leukemia. 5 years.Crazy how times goes.

And, it will have been nearly 4 years since I decided to jump head first or rather feet first, into my first marathon. Zoey was just newly out of treatment and I thought what better way to give back then to raise funds for The Leukemia & Lymphoma Society. Sounded easy enough. Boy, was I ever wrong.

I was emotionally and physically exhausted after spending nearly 8 months on the oncology floor at CHLA with Zoey and the last thing I should have been doing was training for a marathon. But I did and it was hard. Really hard. But I expected that. However, what I did not expect was the emotions attached to the experience. The joy and sadness that I carried with me on that run through San Francisco. The images of my daughters face and all of her friends and their precious faces, that propelled me forward at every turn and with every breath sucking hill. And wow, were there hills. I thought about all the kids I had met over the months and thought about one very special adult,another mom, Pat, who should be here in this world with their families but were inexplicably not. All because we have no cure yet for these blood cancers. So simple but yet so completely complicated. Have we made great strides? Absolutely we have. But we need cure. We must get to cure.

4 years later and here we are. And there have been other new diagnoses of people we have come to know and love. There have been relapses, a few times over for some, of those that we love. And with broken and shattered hearts, we have lost far too many of those we have loved. That little litany that I just wrote, has got to end. And that is why I have chosen to fundraise and run in the Nike Women's Marathon once again. This will be my 4th time on that course. My 4th time that my motivation is borne from a desire to see all blood cancers eradicated. For good.

Last year I believe that the Nike Women's Marathon was able to raise upwards of 18 million dollars for LLS. Isn't that incredible? This year another 25,000 or so runners will strive to surpass that amount. I intend to do my part. Will you please consider helping me? No amount is too little. And all amounts are greatly and most humbly appreciate. Go here to make a donation.

I will thank you in advance from my little warrior girl, who in a few weeks, June 2nd to be exact, will hit 4 years since she was released from treatment. We are so grateful to reach that milestone. So blessed to be at this juncture. We move forward each day knowing how tremendously lucky we are. How tremendously lucky Zoey is, that she remains in remission. We want everyone who is diagnosed to reach this milestone. And one day, as we hope, to be able to confidently speak the word ... CURED.

Until next time,

Heather

Namaste Mohini ...

I hate goodbyes. Always have. I don't know anyone who actually likes them, but me, I avoid them at all costs if I can. Cry. Everytime. A lot. And the kind of goodbyes I have had to say over the last 4 years, the last 10 months specifically, well, those goodbyes, unavoidable. Horrible. And to be honest,  I'd like to skip tomorrow's all together. But can't. Been dreading it for awhile now. But the day has finally arrived. Like it or not. Tomorrow is the day we say goodbye to Zoey's beloved school aid. The one that has loved her and cared for her nearly everyday, for past three years. Sweet Mohini.

Mohini has been my right hand girl. A stand in mom when I am not there. She has changed diapers and gtube fed and held and loved on Zoey when ever Zoey needed it. And even when she didn't. Mohini has allowed me to drop Zoey at school and leave with complete peace. That peace has been a gift. Mohini has been a gift. And I am going to miss her with all my heart. And Miss Zoey, she adores Mohini. And although Zoey does not understand goodbyes, she will know that Mohini is gone and she will miss her, in her very own precious way.

When Mohini isn't selflessly giving to not only my child but the rest of the children in Zoey's class, she is a wife, a mother and she is a yoga instructor as well. I thought it was only fitting to give her what she has given to me without even knowing it. That giving has enabled me to release Zoey into the care of another so she could attend school daily, in an environment she has flourished in.

 Calming, Balance, Inner Peace

Which is what you are striving to find when doing the "tree" pose.

We love you Mohini. Namaste.

Namaste, as defined my Mahatma Gandi: "In India when people meet and part they often say Namaste which means: I honor the place within you where the Universe resides; I honor the place within you of love, of light, of truth, of peace; I honor the place within you, where, when you are in that place in you, and I am in that place in me, there is only one of us"

It's so curious: one can resist tears and 'behave' very well in the hardest hours of grief. But then someone makes you a friendly sign behind a window, or one notices that a flower that was in bud only yesterday has suddenly blossomed, or a letter slips from a drawer... and everything collapses. ~Colette

Grief sure is a sneaky thing. Some days, you are just cruising right along and you think to yourself, you know, I think I am doing good. Perhaps better then good. And then, out of the blue, you walk into a store, say a See's Candy store, to buy your granddaughter and your son a treat and almost immediately you feel a panic attack start to rear its ugly head. You feel a lump in your throat and you find yourself doing everything in your power to keep from dissolving into tears. In the middle of the store. In front of complete strangers. You stand there, ever so briefly, as you realize that for the first time in 20 plus years you will not be buying your mother her favorite chocolate to go along with her Mother's Day present. There will be no Mother's Day present. There will be no Mother's Day with your mom. You realize that last year, you were gifted with the very last Mother's Day together. Ever.

And this Sunday, I will not only be a child without a mother in this life but I will also be the mother of a child who has lost her very own child. You cannot imagine the depths of my sadness for my Caitlin. You cannot imagine what it did to my heart recently, as I saw a picture of her holding her brand new, beautiful nephew. Her face exuded pure joy and her eyes were actually smiling, and she was more then okay holding this new life and me, I ached for her to be holding her Gracie. She should be holding her Gracie. But she is not. And as much as that feels cruel and pains me to see a photo like that, Caitlin will tell you that holding her nephew was not difficult. It was wonderful. For he does not belong to her. He is not her Gracie. And she knows the difference. She feels the difference. And me, am I ever proud to be the mother of this remarkable girl. She is incredible and truly walks this road with "Grace" and beauty.

So Sunday will come. And it  go. We will again hit another first. We will surround ourselves in the safety and comfort of each other. I will spend the day feeling gratitude for the 48 years I had with my mom. I will realize how blessed we were that she was able to greet and watch grow, 17 grandchildren. That is so, so much more then many others will ever have. I will miss her terribly. I really will. I will miss Gracie for Caitlin with every fiber of my being. But I refuse to lose myself in the sadness and in the grief. I will choose faith and hope. Because those two things, were the embodiment of my mom. She wore a t-shirt on the last day of her life, not by chance but by choice, because that was who she was. The shirt simply said: "Hope"



And I will read and re-read her Facebook post from Mother's Day last year and the day before that. For her words on that page, the last few months of her life, were gifts to us all.

An early good morning to all you dear, sweet ,loving children and grandchildren and adorable husband (of course he won't read this but I will tell him). How special and loved you all make me feel -each and everyone - 

Stephen, Leslie, Heather, Shannon and Luke - I am proud to be your Mother - I look back and say wow! - we did that - I love you all so much - The Queen Mum - and proud that my (though maybe not perfect) blood flows in your veins - Thank you - Happy Mother's Day from me

Love and miss you mom. We are taking good care of him. Promise.

My favorite moment of the weekend ...

The girls, big and small, and I were out doing wedding errands this weekend. So much fun I tell you. And would you look at what we found. THE perfect dresses for Zoey and Charlotte. Are they to die for these two, or what?

Charlotte is such a sweet little helper with her Auntie Zoey. Look how she linked Zoey's little arm when we asked her to hold on to her. With Charlottes gentle guidance and my knee as support we were able to take this darling picture of the girls "standing" together. I think this picture ranks as one of my favorites. But this one still reigns as my top pick. Just something about it.

A glimpse into the future perhaps.