The Greatest Pumpkin: Honor Donna and Have Fun at the Highwood Pumpkin Festival

Four years ago we were losing our oldest child, our beautiful Donna.  She was in the last weeks of her life which would end on October 19, 2009, after a nine day vigil.  The number four keeps smashing at me.  Donna was four years and three months when she died, which means soon, very soon, she will be gone longer than she was with us.

Damn, that hurts.

Because Donna’s life ended in October, pumpkins abounded.  They were everywhere and still call her to mind.  Mid-way through the vigil, some dear, dear people took it upon themselves to create their own vigil right outside our front door.  A symphony of jack-o-lanterns that were magically lit each night by a rotating crew of well wishers.  Pumpkins.  They were beautiful and gave us tremendous comfort — such a beautiful, beautiful tribute to our Donna and her wonder, her joy, her spirit.

Pumpkins

Donna never saw those pumpkins, but we did.  Four years later, those pumpkins, and all pumpkins, are entwined with those last weeks of our girl’s life.  That great orange globe, so present this time of year, is another symbol of our girl, and most especially, the time of year that we said our last goodbyes to her, assuring her that we would meet her there, wherever “there” might be.

Last year, right around this time, I got an interesting email from an organizer of the Great Highwood Pumpkin Festival.  She had come to know Donna through my writing and storytelling and wanted to somehow integrate Donna into next year’s festivities — now this year’s festivities — as some sort of charitable tie in.  Was I interested?  Could I help?

Hell yes.

And after a couple of introductions, Donna became the bridge between the The Great Highwood Pumpkin Festival and one of our favorite charities, St. Baldrick’s, the number one private funder of research for pediatric cancer.  I think this is pretty damn cool and I hope you do, too.

So this year we will be honoring our girl at a couple of events at The Great Highwood Pumpkin Festival and would L.O.V.E. for you to join us.  Here is the 411 on this super fun, family friendly, best pumpkin festival ever.

  • St. Baldrick’s Pumpkin Shave, Saturday, October 19, 3 p.m. – 6 p.m. One of my favorite questions since starting fundraising with St. Baldrick’s is, “Do you have a head?”  We all do, right?  Why not shave yours with all the proceeds going to much needed research for pediatric cancer?  Or, you know, volunteer your husband’s head like I do.  Or simply volunteer at the event itself.  The link will get you to where you need to go to do any or all of the above.  My family will be there and I will say a few words of gratitude to all those gathered.  This is a special day for us, as it is the fourth anniversary of Donna’s death.  Helping to raise dollars for other children with cancer seems like the most fitting thing we could do to honor our girl.
  • Great Highwood Pumpkin Fest’s 5K Run, Walk and Kids’ Dash , Sunday, October 20, 8:30 a.m. – 10 a.m.  Each year at the Pumpkin Fest a different charity is selected to donate proceeds from this much anticipated 5K. With Donna as inspiration, this year’s selected charity is St. Baldrick’s.  I love this for many reasons.  Donna, in the annual Run for Gus we participate in each summer, loved the idea of “running.”  While Donna’s cancer prevented her from being able to run fast, she loved the idea of running and racing in general.  With this very family friendly event, you can start your day with a group warm-up, the kid’s dash, and then slide into that 5K through this scenic North Shore location.  Click on the link above for all the details, or register directly here, but you have to do so by October 17 if you want to do it online.  Oh, yeah, and no race for me this year.  A newborn is a great excuse, right?

Highwood

So there it is.  If someone had told me four years ago, just at the onset of sitting Donna’s vigil, that I would be spending her death anniversary four years later making a public appearance at a pumpkin festival, well hell, I don’t think I could have seen or imagined it.  But, as I am fond of saying, this is how I parent Donna now, by spreading the lessons her life taught me and raising much needed research dollars for pediatric cancer.  I chose hope in 2009 and I choose hope in 2013.  Donna taught me that.  And all monies raised for St. Baldrick’s during the event will be credited to the Donna’s Good Things campaign, which has raised over $180K to conquer kids cancer since March 2012. Now that is cool.

Mama and Donna and pumpkins

Think about joining in the fun at the Highwood Pumpkin Festival, October 17th – 20th.  The Great Pumpkin that Linus sought for years can be found there — it is the heart and spark of an entire community coming together, surrounded by pumpkins, raising money for children fighting cancer.

Thank you, Donna.

Mom Powers Activate!

A few days ago, sweet and sleepy, Mary Tyler Son asked what my favorite “mom power” was.  He is four, and like many four year old boys, thinks about super heroes and super powers.  A lot.

He discovered super heroes last fall when he started pre-school.  At first, I found the new obsession annoying and lacking originality.  His previous obsession was Greek mythology and he could recite the twelve labors of Hercules stone cold.  Have you ever seen a three year old recite the twelve labors of Hercules to a dumbstruck sales clerk at Barnes & Noble?  No?  I have, and it was magnificent.

But, yeah, mom powers.  I asked the boy what he meant, as I really wasn’t certain I understood his question.  He said, “You know, like when you read to me before bedtime.  Mom powers.”  Duh.

Super_MOM 2

I haven’t felt so powerful in a long, long time.  Mom powers suddenly transformed into MOM POWERS!  I have MOM POWERS!, yo.  How cool is that?

I asked what some other mom powers were and Mary Tyler Son was happy to inform:

  • Protecting him from all things scary  – I loved this one, despite knowing that moms can’t protect their little ones from all things scary, take, for instance, cancer, but still, if your child thinks you can, that is some pretty heady stuff.
  • Sauteing apples in butter and cinnamon – this one seems kind of lame unless you’ve eaten my sauteed apples in butter and cinnamon, and if you’ve had them over one of my pork chops, well then, BAM!  You get it.
  • Keeping him supplied with his favorite underpants, clean and folded – Mary Tyler Son has a few favorites.  Said super heroes as described above.  Animals are another.  He is always really happy with me when he opens his drawer and no matter what skivvies he feels like wearing, there they are, clean and folded, waiting to cover his wee little privates.
  • Giving him loving – In our home, when Mary Tyler Son says he needs some loving, what he means is that he is feeling tender or wounded or beat up in some way that makes him sad.  What helps is for him to crawl up into my lap in the blue rocking chair in his bedroom and just hold him tight and stroke his hair.  It’s like magic and cures whatever ails him at the moment.
  • Going on adventures – I have often said that I am a better mom outside of our home.  There are no distractions.  So we get out a lot when we’re together.  Museums, nature centers, play dates with friends in the suburbs who have “parks” in their back yard.  We love our adventures together.  And let’s be honest, four is still pretty easy to impress.  Yesterday our adventure involved an unexpected ice cream cone with sprinkles on a warm afternoon after school.  Simple pleasures.

Trust me when I say that I never really aspired to be a mom.  Didn’t feel a maternal bone in my body until my mid-thirties.  Who knew, you know?  I certainly didn’t.  I spend my days picking up after my boys, thinking about what to cook for dinner, wishing I could get more sleep at night.  I am a mom.  A MOM, DAMMIT!

That is some powerful voodoo.

And as another super hero taught us, with great power comes great responsibility.  What better or more apt description of motherhood is there?  And I must be doing something right if my boy equates me with power.  Damn straight, kiddo.  I am powerful.  And grateful for every minute of it.  Thanks for the reminder.  Sometimes we moms need that.

SUPER_MOM_detail

 

Kyla Rae’s Story: When Hope Was Lost

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Ellen Ochs Tillem

On Rosh Hashanah [it] will be inscribed and on Yom Kippur [it] will be sealed…Who will live and who will die. Unetanneh Tokef from the High Holy Day Liturgy.

During the fall of 2011, we sat with our daughter between us during the Jewish High Holy Day Services.  We were fresh out of treatment and in the early, halcyon days of remission.  As we sat and recited these words, we were so sure, so full of HOPE that we were among the lucky ones.  As fate would have it, Yom Kippur of that year was also Kyla Rae’s sixteenth birthday.  It seemed as if the stars had aligned to make everything right.  We recited those words with such confidence.

Kyla Rae with Mom and Dad
Kyla Rae with Mom and Dad

Fast forward six weeks, and our world came tumbling down.

It was the Monday after Thanksgiving.  We were all still living in the realm of HOPE.  We had resumed our annual post-Thanksgiving party which that year also served as a celebration of Kyla Rae’s remission and a thank you to some of the many people who had supported our family during the previous year.  My daughter came to my room after getting dressed for school.  I was stealing a few extra minutes under the blankets before getting up to go to work.  “Mom, I found a lump in my breast while I was getting dressed.”  CRASH!!!

I hopped out of bed and told her to lie down so that I could feel it.  I still remember telling her that it was probably nothing, but it was a LUMP.  I kept reassuring her that I really didn’t think it was anything but that we would call the team as soon as clinic opened and go straight down just to make sure.  I didn’t let her eat breakfast in the hope that we could get an emergency PET scan that day in order to reassure her that all was fine.

We were in the clinic by 10 AM.  The doctor on call reassured us that the location of the lump was a very unlikely sight for reoccurrence but that he felt multiple lumps…in both breasts.  By noon, Kyla Rae was having a PET scan.  “Smart mom,” I heard, “not letting her eat breakfast.”  By 3 PM we were back with the doctor and our favorite nurse practitioner.  The doctor told us that indeed there was something there as well as something in her sacrum, but that it was probably not cancer.  LIAR!!  One look at the tears coming from the eyes of the nurse practitioner told us that this was not true.  We were sent home with the promise that we would hear the next day about scheduling a biopsy to determine what the “lumps” were.

A few hours later I received a call from Kyla Rae’s primary oncologist.  He asked me what we had been told earlier that day.  After relating the conversation that we had with Dr. LIAR, he told me to forget what I had heard.  The cancer was back, there were multiple tumors, and our only option was palliative care.

But wait.  Rhabdo doesn’t show up in the breast.  Isn’t that what Dr. LIAR told us?  Rhabdomysarcoma is a muscle cell tumor.  It can show up any where there are muscle cells I was reminded.  We discussed plans to return to the clinic on Thursday and the call was ended.

By this time, my daughter, my husband and my son (our other daughter had returned to school the previous day believing as we all had, that her sister had beat the monster) had followed me into the living room.  I looked at my daughter and she said to me, “I am going to die, aren’t I.”  No parent should EVER have to hear those words from her daughter let alone have to confirm them.

Five months later on a rainy day in April, we buried our daughter:

Kyla Rae Tillem, Forever Sixteen. Dancing with the Angels.

Update:  Today marks seventeen months since our daughter lost her battle with cancer.  My husband and I have both returned to work full-time.  Our two older children have continued their college studies.  Zara, our oldest daughter will graduate from Syracuse University with a Bachelors of Architecture next June.  She has managed to stay on track despite the loss of her sister/best friend and as she said in her eulogy for Kyla Rae, her future maid of honor.  Our son, Benjamin finished at the local community college in June and has since transferred to the Park School of Communication at Ithaca College.  He has also made connections with people at both NBC and the Office of the Mayor of New York City so that other teenagers with cancer can attend special events.  We couldn’t be prouder of the way these two have managed to continue on despite the loss of their “baby sister.”

My husband and I are now officially empty nesters.  Kyla would have graduated high school this past June and also would have left for college this fall. Somehow this empty nest feels emptier.  There was no freshman orientation, roommate drama or convocation for  us to attend this time around.  Despite all of this, we are making a life for ourselves and trying to live each day in Kyla Rae’s light.  We continue to shed tears and miss her in a way that is beyond description.  Tears continue to flow at the most unexpected and inopportune times, but we made her a promise to find a way to continue on and so each day we try to live up to this promise.  Our other children deserve at least that much from us and so much more.

Dancing Kyla
Dancing Kyla

Kyla Rae was a dedicated ballerina and danced intensively for ten years prior to her cancer diagnosis.  We have established the Kyla Rae Tillem Memorial Dance Scholarship at the Ballet School of Stamford where she danced, so that young dancers that otherwise could not afford to, can take ballet class.  Donations can be made via their website linked above, but please indicate on the donation form that it is for KRT Dance Scholarship.

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

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