Saturday, November 8, 2008

"I shall persevere in spite of everything,and find my own way through it all,and swallow my tears."Anne Frank

The house is eerily quiet.Jess has headed home.Taylor is at work.I turned on the TV for company.The boys are settled into bed after books.Calming effect on us all.I,dozing in mid-sentence as exhaustion hits, the moment my body comes to rest.In addition to a few books of their choosing,we are reading "A Cricket in Times Square".I love that book.One chapter a night and we are almost done.The stillness of the night is a stark contrast to the events of the day.The stress that has permeated the house is palpable.I began the day with expectations.First mistake.I figured I would be so thrilled to be home that I would surely make the most of my short time here.Instead I teetered on the edge of full on panic attacks all day.My children,once again did not get the best of me.Mark and I decided,well actually Mark decided,I should spent one more night at home.Reluctantly,I agreed.I will head down first thing in the morning for Mark to get back in time to take Jake to CCD class before church.They will go to church at 11am and then Mark plans on taking them bowling and filling the day with some much needed distraction.Something I failed miserably at today.I sit here with guilt once again that I have failed my children in one way or another.Especially the little guys.Joe sobbed when I put him to bed.He begged me to stay home another day.His behavior,as witnessed by Jess and Taylor also,is the worse it has been in months.We all,him especially,have worked so very hard at keeping his temper and behavioral issues at bay and well,it's all back, with a vengeance.Jake is a stress case too.Thinking he is hiding it but absolutely transparent to me.Once again I found myself repeating,to the boys, something from Zoey's NICU days, which was"It's not forever".It was deja vu.And not in a good way.My patience was less then in check today.I lost sight in some moments, that these are little guys who's life has been turned upside down.How do I make this better?How do I pave the way as not to leave wreckage along the way?These boys deserve more.My older girls deserve more.Zoey most especially, deserves so much more.Do I feel we are entitled?Maybe.Dues paid ...... I think so.Have I left unrepairable scares?Sometimes I think so.I made apologies all day long.Bedtime has always been our time to make amends.Children are so forgiving.Often more so than we are on ourselves.Being home,without Zoey,is beyond difficult.Even knowing Mark is with her.I have been blessed to have been able to be at with my children all of their lives,everyday.Being away from them has always left me with a feeling of missing something,a part of my very self.With Zoey,that feeling is magnified exponentially.I feel a literal ache in her absence.When I am at the hospital with her it is much easier to shut off the world back at home but when reversed I cannot resist the urge to not drive back down there and be with her.Hold her.Kiss her.Be still with her.How do I stretch myself in so many directions and still give to all, what they need?I can't.I can try but in the end,I can't.So once again I am forced to accept that which I cannot change.Surrender once again.Today Zoey continued her streak of amazing days.Mark said she was playful,smiling and she ate ...really well.We are beyond thankful that our prayers have been answered and Zoey has weathered this last week in such true Zoey form.We stand in awe of her grace under pressure.Her numbers are down but not quite zero.We are anxious for her ANC to hit zero and then we would know we would be on the upswing before long and possibly be sprung for a week or so before Round Two.Today has been an emotionally difficult day.I let my kids down today.I let myself down today.I quite frankly believe I let God down today.Yes,tomorrow is a new day.But what will it bring?Try as I might,I start off positive,ready to take on the world but somehow, sometimes, that all slips as the day progresses.As reality pays me a visit.A sometimes gentle but often an in your face reminder, that we are all a family living,or at least trying to live,in the wake of an unwelcome visit from cancer.How is it that Zoey seems to be fairing the best.Is it because she dwells in this constant state of grace?I think so.We thank God for seeing her through this past week.For easing her way and strengthening her body for what ever lies ahead.In the end, she comes first right now.All of us have the same end goal.To bring Zoey home healthier and stronger than ever before.Remaining strong and united as a family may prove to be just as big of a challenge.We remain faithful and hopeful that we will all emerge as unscathed as possible.Especially Miss Zoey.Pray for our tiny fighter.


Laurie said...

Wow! You are one amazing mommy! Remember that! I have been lurking on your blog reading about your beautiful Zoey and I have to say again, you are an AMAZING mommy! You do the most important thing everyday and let your little ones know you love them. You also show them your courage and heart in all you are doing whether you feel you suceeded in meeting all their needs or not. Please know that many are praying for you all and especially sweet Zoey for quick healing and comfort for all of you. Thank you for sharing your journey!

Anonymous said...

Heather - You're doing great. Keep the faith and keep fighting. Children are so resilient and they will remember more that you were by their sisters side when she needed you the most, then anything else. It will reassure them in the long run that if they have a need, you'll be there. Zoey's fighting hard because she can feel the love that you bring with her every day from the whole family. I want you to keep positive and know that we're all here for you. Christy

My name is Sarah said...

Hi Heather, this is Joyce. Last evening Sarah and I went to a skating benefit that Scott Hamilton does each year to raise money for cancer research. During his opening remarks he talked about his diagnosis and his treatment and then said the most important thing to him was meeting others that had survived and were smiling. Those on the other side of the journey. He calls them the 4th angels. I was thinking about all the 4th angels in our Ds world who have beat this AML.

As he closed the program he very emotionally told the audience that we must find cures, but until then we must smile for that is what makes a difference. At that moment, I couldn't help but think about little Zoey and her smiling face each time you have posted photos in the last week. And then Sarah looked at me and she said, "Mom, he is talking about Zoey. She is always smiling and she is going to be OK."

The friends that we were with looked at me and I knew they were sorta dumbfounded that Sarah made all those connections in a short moment of time. So I told them about Zoey and her amazing family. They will all add your family to their prayers.

Anonymous said...

As I sit and read your thoughts, I see so much of my very own thoughts and feelings.

This word cancer is so ugly. I too saw my family fall into a very dark time because of it. I do see now, that we should have gone into counseling. I believe our other children would have faired much better through Carlys 26 months of treatment and hospital stays. I cant undo what's already done, but I can advise you to seek outside help in order to bring your family through this very trying time.

God bless you and your entire family. May He bring you all through this very trying time.

Joany and Carly, (Michigan)

Jodi C said...

Although we have never met, we have traveled on some of the same roads. Please know that you are anything but a failure. I struggled with that very thought as I fought along side Sarah and giving only what I could to our other child. Please always remember that not only is Zoey resilient, but your other children are as well. Be gentle with yourself, you are doing the very best you can. This too shall pass, just hold on and the love you give your children will sustain them, even when you think it is not nearly enough.

Anonymous said...

Heather, Heather. You are doing an amazing job. Even if all things were lined up perfectly now, the boys would be emotional. They adore Zoey too and don't really understand. They are fearful and often fear manifests as anger. The change in routine is trying on all of you. Give yourself a break and show yourself the love, understanding, compassion that you show them and others. It's difficult to give to ourselves, but you must now too. I am touched by the post about Scott Hamilton's fundraiser and how he addressed the issue. He is an incredible person. I'm a long time figure skater and have met him quite a few times. A ray of sunshine. May all of our prayers, thoughts, and encouragement help you today, love, Christi Harman

Aunt Kim said...

Heather--I am praying for the "little fighter" in you. You are such an amazing woman and I am a little in awe of you. You had a bad day, and as you know more than anyone, they happen. I can't even begin to comprehend. But you are so obviously the strength of your family. And you will have better days. Soon. Every day I have been praying for Zoey. And for you. I am going to pray even harder today.

Presley's Aunt Kim

Cleo said...

Heather, you are always doing the best you can with the understanding, awareness and knowledge that you have.
Acknowledge yourself for being centered when there is incredible disorder around you. Acknowledge yourself for being courageous and for doing so much more you thought you could.

May Zoey and all of you continue to open yourselves to divine intervention. May all of you
surrender yourselves to become a channel for healing. May all of you be surrounded and protected by the power of grace. May all of you be blessed and receive divine guidance.

Keeping Zoey and all of you in my positive thoughts and prayers. Sending loving and healing energy your way.

Much love

Carey said...

Oh Heather, you know, I am STILL struggling with making the days meaningful for big brother as well as our little former patient. I think you get in a fog, and it's so hard to get out of it. I wish there was a magic pill or something, I would have already taken it!

We are unfortunately still seeing some of those awful behaviors in our son, I'm really trying to work on that.

I hope Zoey's ANC reaches ZERO soon! My theory was always, it can't start going up until it goes down! I think our first round from start to finish was, 23 days (I think). Everyone's different, but she's doing so well, hopefully she'll be in and out like Chelsea usually was!

ntmjbmom said...


I can so identify with your feelings..when my eldest two were little, I spent almost 1 1/2 years in-and-out with our daughter..and then she passed away.

Our whole family went through such hell.

Then years later, their little brother is dx with brain cancer..and WHAM..we are re-living the trauma, fear, separation all over again.

It's so unfair that so much is asked of these siblings..and a family that has already dealt with so much..and that goes for both of our families!
I'm so sorry..I wish the shit would get spread around a little more evenly..but it's like some of us get dumped on.

The anger, the's okay. God is certainly big enough to handle are safe, sobbing on His shoulder and pounding into his chest.

(and ours!)


Kele said...

I am praying for all the tiny fighters in your family, Zoey, Jake and Joe. Hearing how difficult it is for them makes me hurt so badly, I can only imagine how difficult it is for you to see. so with all three of those sweet, beautiful children is where my prayers will be tonight.
Love to you all sweet friend.