Wednesday, November 5, 2008

grace:elegance or beauty of form,manner or motion





I wish I could say there were an overpowering emotion that charted the course of my days but the truth of the matter is, that my emotions seem,well,somewhat none existent.I believe by necessity, my days just go in a weird self driven manner.The days go because they have to and I go because I must do the same.Make sense?If it does,good because I don't think I understand it myself.Some would say I am being propelled by adrenaline.Survival mode.Some would say it is denial, motivated by self protection.Some may say it is just good old fashion shock.Me,tonight,I think I choose to believe it is grace that is sustaining me.Some may say I may be in for a rude awaking one of these days and quite frankly,they are probably right.Don't get me wrong,I often think my days are spent walking in the foot steps of some other persons life.I cross the threshold of the 4th floor elevator doors and cannot believe my child has cancer.The big "C" word.The, no not me, that must be someone else's sad chapter of their life but most certainly not my life.But no,this is my life,my 20 month old baby daughters life.Yet another unbelievable but undeniable diagnosis.My true feeling can be summed up in a shirt that my dear friend Tera sent me.I plan on getting a few more.It is so me and is so appropriate.And, sorry mom, if you are reading this,I know you have always hated this word but the t shirt I will be wearing tomorrow reads "Leukemia Sucks"...... I like it,short but sweet and straight to the point.So, you see, if I am left with my thoughts, this seemingly unemotional state is actually riddled with myriad of inexplicable feelings.I am certain that this is part of the process,part of the journey.Can I just say that this latest lesson,if that is what it's called,is one that I am not enjoying much.No one on that floor is.Especially the precious children.All of them so deserving to be far, far away from the place that they have found themselves.Today I am thankful that my heart has allowed grace to penetrate it's slightly hardened exterior.This grace that moves me and fills me,this grace that allows me to function and get out of bed each and every day, is a gift given by one who exemplifies the meaning of the word.Miss Zoey GRACE is my teacher and although I find myself apologizing to her for having to be labled with such an enormous title,I am so blessed to have been chosen to be her mother.I reap the rewards of that role daily and I intend to not let her down ..ever.So today it's grace.Tomorrow, well,I can't promise you it will be as pretty but I can promise you for it to be just as authentic.As for the little patient.Doing her thing.Happy and still smiling.Her numbers are scary low today.White count 1.1 and her ANC is 240.Half of yesterday and tomorrow probably will be zero as I suspected.The doctors are pleased as her counts are doing exactly what they should be.Blasts,which measures immature blood cells,are at 0 and platelets and red counts are down as well.Zoey is text book in the protocol thus far and our prayers are that this trend continues.It has to continue.And the home front ...... burn out is happening already.Joe didn't want to go to school so my friend who was watching him just let him hang out.Taylor is maxed out.She is trying to be mom and trying to remain a 17 year old.She is doing a phenomenal job.Above and beyond.But she is tired.We have a slightly tentative schedule for the up coming weeks so hopefully the kids and all the people who have so generously and selflessly stepped up to help,can have some type of constant.I am tired,Mark is exhausted.The other girls worry from a far but check in daily.We wish we could all be home together.No such luck.I am off to finish laundry and get a jump on lunches tomorrow.All is quiet.Just me and my thoughts.Not always a good choice but tonight fatigue may win.Once again a very humble thank you: to all of you who come and lend your support here with comments and prayers.To all of you that do not comment but come to check on our little princess.For the countless emails and phone calls.To Maureen who stopped by tonight with a very generous gift of gas cards from your mom's group.Please give your group a HUGE thank you from us all.What a nice way to end my day.To our family and friends,new and old,near and far,thank you,thank you.We have a long road ahead and your support eases the travel.We could never,ever reiterate that enough.Keep all the prayers and good vibes coming.Remember,"it takes a village" and this village that surrounds us surrounds Zoey, amazes and astounds us.So don't stop ..... okay?

19 comments:

Mia hat eins mehr said...

Zoey is such a princess. She really shines. I am with you in my thoughts. Every day that goes by with Zoel looling like that on the pics is a good day! Day by day, step by step.

Love
Claudia

Sara said...

Wow! Zoey looks absolutely adorable in those pictures. Amazes me how she looks so happy. She is a miracle and together you and her show people how strength, courage, and prayer can get you through anything. You both are a true inspiration. Thank you for sharing your sweet Zoey with us. I am praying for her. And I pray for your strength as well, Heather.

Sara

Anonymous said...

I am a friend of Larkin's Mom. I have been praying for you all throughout the day, every day. I always direct my prayers to Mary, the Mother of Jesus, and ask her to petition Her Son. Jesus always tried to do what His mother asked of Him. I ask for strength for your family and for Zoey to have a textbook response to her treatment and to come out the other side healthy. I also ask Mary to hold Zoey in her arms and keep her safe. I feel sure that Mary is doing that when I read your updates and see the pictures you are posting. I also ask Mary to support you and carry you at the times when you feel that you can't take another step. I will continue to pray for all of you.

Ami G.

Reagan Leigh said...

Heather,
I'm glad you like the shirt! You know they have it in other colors and styles as well. You can wear one every day of the week if you'd like (although I wouldn't advise it). I hope it's as stylish as the other one you saw. Though not pretty, the words speak the truth (straightforward just the way you would say them yourself) ...leukemia sucks. And it sucks for every person that has to go through this journey...but even more so for little Zoey who has already been through a lifetime of trials and tribulations in her 20 months. We're still praying all day long!
Love,
Tera

Denise said...

Each morning I go by my daughter,Courtney's cemetary and as I drive by her stone I ask her to watch over your sweet Zoey! We send our prayers here from Indiana. I remember with Sydney's heart surgeries I was in sort of a zen feeling, its amazing how I feel God takes over for us.
hugs,
Denise

Carey said...

Yipee! Textbook is good. I hope everything continues on this path, and that she doesn't start showing any side effects as her counts drop.

Mandy said...

Zoey is in our prayers from here on out.....even when she's at home, healthy and happy :) She is a little doll!

Maureen said...

I think Zoey has a career in gymnastics ahead of her - girlfriend is so darned flexible!

Continued prayers for an uneventful experience... Zoey is an inspiration and a truly amazing little girl with an amazing family.

Maureen
who agrees that it takes a village

Cleo said...

ZOEY GRACE, you are so BEAUTIFUL. Keep leading the way, you know exactly what you are doing.
Many Blessings to you ~

Heather, keep your mind focused in GOOD HEALTH and STRENGTH.
Be OPTIMISTIC about the course of Zoey's treatment.

LOVE is the only power on earth that truly heals.
"Love bears all things, believe all things, hopes all things, endure all things".

Please know that constant prayers, positive thoughts, healing and loving energy are coming your way every day. :)

Lots and lost of love

Moses5 said...

You do not know me as I found you through one of my Friends Renee but I have checked your page daily for updates and progress reports and am praying for your family through this rough time. Please keep your head high and give that baby girl as much strength and courage as you can muster up, She seems to be a wonderful and beautiful little girl. I will continue the prayers and check daily. From Cali

Anonymous said...

Hi Heather, Zoey Grace looks so chic in the argyle leg warmers and yet maintains her overall youthful appearance, especially with the let in the air.... She and you all continue to inspire us. Keep those textbook responses coming, love and prayers, Christi Harman & Family

Anonymous said...

Such a sweet little gal. We will be praying for her to feel good throughout treatment. Too keep strong and remain infection free.
I fould her via Rene Garcia's blog.

My daughter, Carly (Ds/T21) has been down this road too. Carly had ALL not AML. The treatment is somewhat different. It's 26 months worth of chemo. It stinks just the same.

Take care of yourself, rest and eat. Zoey needs you strong and fighting this battle along side her.

God will be watching over little Zoey and the rest of your family.
Good luck and we will be praying.

Joany and Carly from Michigan
carepage: carlyscarepage100

orange1986 said...

Zoey is seems like such a sweet little girl. You posted today about the idea of grace and so I wanted to share this with you,its actually from my shampoo bottle but I thought that it was beautiful and fitting,
Amazing Grace:
"life is a classroom. we are both student and teacher. each day is a test. and each day we receive a passing or failing grade in one particular subject: grace. grace is compassion, gratitude, surrender, faith, forgiveness, good manners, reverence, and the list goes on. it's something money can't buy and credentials rarely produce. being the smartest, the prettiest, the most talented, the richest, or even the poorest, can't help. being a humble person can and being a helpful person can guide you through your days with grace and gratitude."
And this quote as well.
Pure Grace:
Pure Grace
one of the best tools for longevity and good health is not just taking a walk outdoors but taking your walk while holding the hand of God. when we walk in gratitude for each and every moment, we empower ourselves by empowering our spirits. when we breathe in nature through our eyes, ears and lips, we become certain that not only are our souls eternal, but that God knows how to manage our lives, our troubles, our worries and our days better than we do. so today and everyday "let go and let God."
Love,
Kelly

My name is Sarah said...

Hi Zoey, Sarah here. I am so digging your baby leg warmers. You wear them better than any baby I've seen. You look so cute. I hope you get to go home pretty soon.

Christina said...

Ah, she is so beautiful! :)

I hope she stays that perfect textbook model, or maybe even more perfect :)

Lots of hugs and prayers for you guys!

Cheri said...

Zoey Grace...she is doing her thing right now...letting her body take over and fight this thing, enduring it all with her signature smile. I just love her Heather...I really do! We continue to pray for her, and your family, daily!

Cheri

Shannon said...

I'm a new blogger and I found you through "Growing Up with Abbi" and now I check in each day. I've added Zoey's picture/link to my sidebar. My prayers are with you.

heidi marie said...

i wish i could wear leg warmers like zoey and look just a fraction of how cute she looks in them! :) such a beautiful smile.

and i in no way have traveled your path but what you said makes complete sense. it is survival mode. you do what you have to do to get by the day. you don't think...you become numb. prayers as always and you are an amazing mother.

Anonymous said...

There are prayers said for Zoey and your family by people you will never know. Just know there are more prayers than you will ever know. Its the best I can do during your hardest days.

With love and heart,
CLB