Activity #21

OBLIVIOUS?! NOT AT ALL...Hayden's spirit is relentless. She is a bundle of energy with a dash of what my elders referred to as "piss and vinegar". She never stops with her questions, especially pertaining to food that she wants to eat but is being denied. I say that she acts oblivious to her looming health situation, because she continues to be exactly as I described. But, at the same time, she has the astute and keen observations and comments of a Yale professor. She asks questions and responds in ways that continue to amaze, entertain and delight us.

The recipient of these gestures is her ever loving, tirelessly giving, and amazingly empathetic brother-Spencer. Spencer is 15 years old, and Hayden is 12. This combination makes for your typical preteen to teen sibling interaction. It is sometimes sweet, but most of the time antagonistic. There is nothing different that goes on between them, then that which is going on in most households across the world. Big brother picks on little sister, and little sister worships and hates big brother simultaneously. I know this sounds impossible, yet if you have ever had a sibling, you understand perfectly the paradox.

The best way to bring this scenario to life, is the most recent example of their interactions. If you are looking for politically correct phrases or acceptable descriptions, this blog is not for you. You have been fairly warned:

A typical Saturday for Hayden involves hours of play with her best friend Rachel Wick. Rachel lives 2 houses down from Hayden, on a happy little cul-de-sac in Carmichael. When Rachel is otherwise engaged, and unavailable for such, we all suffer! None more than her immediate family. This past Saturday was no different. As her mother said, in nice terms, Hayden was being a "pill" because Rachel couldn't play with her. The doorbell  rang, and Hayden thought that this marked the end of her tragedy because Rachel had come to play. Much to her dismay, when she opened the door, it was her brother Spencer who had forgotten his key. He was met with Hayden's disapproving glare, and these loving words--"it's just the brat!", SLAM! Spencer then re-opened the door to come in and countered her not so kind words with "I love you too, Hayden!". Well, not to be outdone, Hayden replied with her favorite comeback-"Shut up Fagot!". (I warned you.... Yes we discourage the use of this word constantly, and as a disclaimer we don't approve of it as a whole. As in most cases, that doesn't seem to matter when Hayden is in one of her moods.) So very disappointed, Hayden stomped up to her room in tears, with every stomp, the "unmentionable" word being reiterated!

What's a brother to do? What he usually does. Laughs, shakes his head, and continues on with his life. Despite his own lack of modesty at times, Spencer is amazing. He loves Hayden, and has been her comfort, protection, love and  thorn in her side. Just as it should be. Here's to you Spencer! Keep up the good work!

Actvity 20

It's almost April. Hayden had her surgery to remove a tumor in her chest on January 12, 2010. If ever there was a reason to embrace the concept of "patience" this has given us one. We still don't know what the prognosis for said tumor is. Cancer? Not? We wait.

In the meantime, Hayden continues to be her usual amazing "self". She plays with her best friend down the street from her house, she asks for ice cream EVERY DAY when she gets off of her school bus, and she gives out her hugs to the lucky ones in her life. More recently, she has begun calling her mother "lovely". Her depth and intelligence surprises us every day, though by now, we shouldn't be surprised at all. An example might be her acute observation of 2 dogs walking down the street that most 12 year old children would recognize as just "cute dogs", she saw 2 "cute Spaniels". They were Cocker Spaniels. Exuuuuuse me, Miss Dog Aficianado! 

It is cliche to say that every day is a gift, but that is the world we are living in right now. We are having our own acute observations as we wait for the word from the experts that will determine our fate in this latest health battle. And we will continue to love our "little lovely" more and more with each passing day.

ACTIVITY #19

The following is Hayden's mom's FACEBOOK STATUS for 3/11/10:

When two out of three dentist recomend crest or colgate that's one thing but we now have two out of three pathologist saying my baby girls tumor is cancer. We are still waiting on the fourth from childrens Oncology group. I'm still hopefull but having a hard time, I never did like roller coasters.

We wait and wait and wait, part of us wanting the answer, and part of us wishing that limbo was the force that is  going to keep the cancer away forever. Denial. Call it what you will, I am not sure any of us are ready for reality. 


Sure, there is still hope that we won't be on the cancer treadmill, but it's not looking that way.


In the meantime, we pray. Not even sure what to pray for. I think that God knows that a mother's tears are prayer enough for now.

Truth be known, we would like to be the exemption. The Ones that beat the odds! But now....we wait.  One thing that we are SURE of is that we will not wait, worry or pray alone. Hayden is loved by many, and for this, we are thankful.

Activity #18

Please refer to Activity #3. OK. now that you have read that blog, we can all agree that today, Hayden cannot be described as a hobo.  Because today, courtesy of my awesome sister-in-law, Fina, she was the proud recipient of a pedicure at the Turtle Bay Resort.

Fina is the Director of Guest Services at Turtle Bay, where Hayden and her family are vacationing this week. Turtle Bay is located on the beautiful North Shore of O'ahu, Hawaii. One of my favorite places on earth. As a special treat, for a special girl, Fina arranged for Hayden to receive a pedicure. Those of us that  know Hayden, were cautiously optimistic about this upcoming adventure.  See, we know that if Hayden could be a hobo, so that she would never have to cut her toenails again, she would. However, much to our surprise, she emerged from the experience "pretty in pink", and none the worse for wear.

I think that the most amazing things about this experience was not the pedicure itself, but the visit that took place between Hayden and Fina. When Hayden realized that Fina was the sister of my husband (and Hayden's beloved Uncle Puppy), that was all she needed to know. As her eyes lit up, she made the connection, and insisted on a phone call immediately to connect the not-so-long-lost brother and sister. She called her Uncle Puppy, and would not let him hang up the phone until he talked to "his sister". They talked, exchanged a few brief words, and all was right with the world.

Fina is amazed at how bright and articulate she is, and proclaimed that if not for her features, no one would know she has Down Syndrome. That's right! She's amazing! And she is no hobo!

Activity #17

Hannah Montana wears a wig! And it seems socially acceptable, right? It just so happens that Hannah Montana is one of  Hayden's very favorite shows/characters of all times! Little did we know that there would be a day in Hayden's future when chemotherapy would be taking her beautiful, blond hair, and leaving her with the option to be just like Hannah Montana, and wear a wig. Never in a million years does this stuff happen to the people you know and love! Considering that Hayden is one in a million, should we have predicted this? Probably not. We usually don't wile away our hours by day dreaming about those that might get cancer in our lifetime. It's all part of this process we call life, I suppose. But the only way that I can manage my thoughts on this subject is by being in perfect denial until it happens. What ever "it" is. I will say that since the diagnosis, I have a continuous twitch in my left eye. People tell me it is a way to relieve stress and anxiety when our eyes twitch. So, maybe I am not in denial. At least my eye isn't.

The best part of my day will be going  to Hayden's house and presenting her with my found treasure of the week! A Hannah Montana Ipod speaker system that I found at a discount of 50 percent off~ I am so excited to give it to her, but mostly excited just to see her smile when she sees it. With Hayden, it doesn't matter what it is, if she likes it, you may as well given her a million dollars. Goodness knows, she has given us a million reasons to smile. Happy Saturday Hayden!

Activity #16

A day without Hayden is like a day without sunshine. True talk, true statement. Ever wandered around your day, thinking to yourself "something's missing"? I have. Lately, it is the fact that I haven't seen Hayden in 24 hours. Sometimes I find my car driving on automatic pilot towards her house, just to find out that she is at her bff's house down the street. That's OK. I get to feel her essence, see her jacket on the stair banister, or her latest piece of artwork, "To: Dad, Love: Hayden" on a chair. It's almost always a house with trees and a sun in the sky. Each year, the coloring gets a little better, but the message remains the same. She loves her house, her family, her life.

There are days when I walk into her house and she is glued to the 7 inch television that hangs under the kitchen counter. Not a word for her Aunty, maybe a quick "hi". That's ok. I get to kiss her head, and give her a squeeze. Sometimes it is met with a "please stop it, Aunty", and sometimes it is ignored. That's OK. I still got to sneak it in.

There are days when I walk in to a resounding, "HI! AUNTY!" and a big smile and a voluntary hug on her part! Sweet! Do I have my favorite times with her? Probably. Am I ever disappointed by their presentation? Never! After all. A day without Hayden, is like a day without sunshine. And the sunshine warms my soul.

Activity #15

If the worst of the worst, happens to the best of the best, then we should have seen this one coming---like a freight train. There is no other way to put it, no sugar coating, no politically correct grammar to hide behind. Hayden has cancer. The surgery to remove the tumor that grew back in her chest, once benign, is now NOT! I think that someone who has as many challenges as she has had, should be able to pull a trump card on something like this. Don't you? I mean, is it at all fair that she thinks that the surgery was the worst of it, and she still has such a long road to haul? I don't. Can I call "sub", God? Put me in. I'll play this hand for her. Please?! If I would, please understand that I would do it in a flat second. Not to be a heroin, but because it would be fair.

So, every moment, every day is to be even more appreciated and valued now. Opportunities are not to pass us by. Time to be spent together should be spent together. So... today, I called her and asked if she wanted to run and errand with me. Of course, that was all the motivation that she needed to get in the bathtub and get her hair washed (much to her mother's relief). I arrived to her house to find her squeaky clean, getting her hair done by her mom, and expecting a lunch date as well.

On the way, we sang, we talked, and we laughed. Towards the end of the trip, I told  her that I really missed my mom and that I was very sad last night. With all of the wisdom and innocence that is hers, she told me to ask God to let my mom come back from dying. I explained to her that God wouldn't do that, and she said that she didn't want to die, but if she did, she wouldn't have Down Syndrome anymore. The wisdom of a babe. In heaven we are all "perfect".  I asked her how she felt about that, and she said "good". We both understood what she meant.

Challenges. They are the story of her life. She looks different, she talks different, she walks different, she thinks different, and man oh man, does she LOVE different. And for that love, I would walk a million miles.A pure, simple, unfiltered and unexplainable love that you could ever be so blessed to receive. That is what you get from our girl. So I pray. Please God, let her always have Down Syndrome. Not because I want her to have challenges on this earth, but because she is already perfect, and I think You will survive without her. I cannot say the same thing about the ones she loves so perfectly. Amen.