Thursday, July 30, 2009

"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before."~James Buckham






One of the many blessings,yes there were blessings amongst the deep pain and sorrow, that came from being on the "long term residency" plan of the 4th floor,was that Miss Zoey and I were able to spend some amazing one on one time together.Now,trust,me I wish that the circumstances were different but that time together was just that,amazing.Since we have been home there has been little or no time for her and I to just snuggle up.I miss that.In a weird way.Tonight, a rare occurrence happened around here.The house,the entire house, was ... silent.Not empty silent,just silent.Jess was upstairs in her room relaxing after a long school day.Taylor was in bed with a nasty migraine.The boys were upstairs carrying on their summer tradition of watching a movie in their "theater" bedroom/bunk bed.Tonight's viewing choice,"Spy Kid's 3-D".Joe will be none too happy in the morning, as he only made it about a 1/4 of the way through.And Mark ... working.New show=crazy hours.That left Zoey and I.She was pretty wiped out by 8:15 and was so content to just hang with me on the couch.As tired as she was,she still was full of personality.Such sweet noises and darling looks and the most sincere and unsolicited hugs and kisses.At one point,she was just lying on her back,twirling her hair and sucking that upper lip the way she has always done since she was a fragile newborn.It is her way of letting us know she is exhausted.And I,I just stared at her.As I did, I glanced up at the sculpture you see in this photo and in one split second all these emotions came flooding over me.That sculpture was given to me the day after Zoey was born.It came from the Cayman Islands and was a gift from a very dear friend.That sculpture represents so much more then a bond between a mother and child.To me it represents the indomitable spirit of this little girl.One who fought to be here from pre-birth and to this very day has never,ever stopped fighting.I looked at her tonight as she so peacefully tried to lull herself to sleep.I looked at her little curled up left hand and her little left eye that ever so subtly floats upward.Both are reminders of the devastating stroke she suffered in-utero.I listened to her gentle little voice and was reminded of the fragile baby that was so medically compromised that we never,not ever,heard a peep from her,not a sound,not a cry,until her heart was repaired at 5 1/2 months old.I watched her smile so sweetly at me and again thought of the smile I yearned to catch a glimpse of in those early months.People always spoke of smiling Down syndrome children,I saw them in all the books I poured over but again, I had to wait until her heart was able to tell her body that it was indeed alright to expend such a simple gesture without taxing an already over taxed body.That same smile she flashed at me tonight, gave way to the sickening and heartbreaking Infantile Spams months where there was no longer a smile to be found.Anywhere.It had been lost in a dark and ugly haze of a tiny brain living in constant chaos.Tonight,as Zoey twirled her long hair I was reminded of the hair,that by all accounts should be long gone from the nasty cocktail of chemotherapy drugs but tonight as I stroked that auburn hair I was reminded of the stubborn and determined child who said,no way,you took my hair once,I worked hard to get it back,I'm keeping it.In our very brief and uninterrupted half hour together,a wide range of emotions and memories were replayed in my over worked and seriously over tired mind but each one gave way to not bitterness or sadness but rather disbelief in the spirit of this little soul who has defied all logic and in some cases,medical explanation.By 9 o'clock I headed upstairs with the tuckered out fighter.I need to do what I did tonight ever so often.These reminders will lend hope to the uncertain future that lies before us as well as serve as fuel for the journey.Spirited,courageous,feisty fuel.

Love this little set of pictures.Well, except for the fact that she looks super washed out.I played around with the color and couldn't figure how to get it back.She isn't that pale although I think she is nowhere near the energy level she should be at.I have no idea how long to expect her to drag before she feels more energetic.I want her spunky and I don't think she feels very spunky on some days.One picture is of Zoey pretending to put a phone up to her ear.She just started doing that every once in awhile if prompted.I lover her disgusted look too ... we get that alot!

If you ordered bracelets,first,thank you and second,I am mailing them out tomorrow.Thank you also for all your well wishes on my complaining jaunt.I feel a bit better today and may be finding my out of the worst of this latest episode.Not a fun thing to function with at all.

15 comments:

stephanie said...

Heather that was so lovely. I love that sculpture, it's just beautiful.I'm glad you got some quiet time with Zoey, funny I got some myself with Em last night too. It's very rare I agree.
Hope you continue to feel better, and more yourself. Taylor too, we have migraines in our house too, no fun there! Hugs, kisses and always prayers to you all.

blogzilly said...

I'm glad you explained the sculptures significance, as I was going to ask because I liked it and finally got the answer down in the text. It's cool...I can imaging what it has come to mean to you.

Nice pictures, and a strong, sincere message of hope in your blog, very inspiring.

ABandCsMom said...

What a sweet post. I often have times when I just sit with Carly and gaze at her. Such blessings our little ones are.

I think Zoey looks great in her pictures. Cute as ever!

Lacey said...

I was just feeling the same way. Jax very rarely fusses, and I'm always so busy getting meds, starting feeds, shuttling him to appointments that I never just sit and hold him. I realized that last night when he was really fussing again, from these headaches, and I was holding him.
I can't wait to see you guys in a couple of weeks. Oh, Tanner said he was excited because Jake has some transformer that i can't remember the name. Oh the things kids remember.

Michelle said...

I love the quote, LOVE the sculpture. The sculpture, I think, says it all between you two! There is so much more there then a mother-daughter bond...it is an eternal devotion, a eternal love and commitment to each other. She lifts you up as well as you do her. We are very blessed to have our 'special spirits'...so glad you had that wonderful time with her last night, a reminder of all things good, perfect and worth fighting for!

Jeana said...

What a beautiful post. I love the disgusted look...priceless. Can't wait to get my bracelet, it will be a great reminder of the journey Zoey has led and the one Kaelyn has just began.

Tish Hearne said...

That was a beautiful post, Heather. I'm glad that you and little Miss Zoey had special time together - a priceless time of connecting souls.

Continue to feel better with each new day; we're praying for you all.

Cjengo said...

What a nice post, and I love the pictures

Cjengo said...

By the way, please stop by www.emilyssmileboxes.com. My daughter started this charity after my sons in utero stroke. I thought you might like to see her site. You know how awful it is to spend so many days in the hospital

Googsmom said...

{{{HEATHER}}}}

Your such a wonderful lady!!

Anonymous said...

Beautiful post Heather. You have such a wonderful way with words. what a gift. So sorry taylor is feeling bad. hopefully we will get to meet soon.
Mackenzie is getting excited about college.
Take care,
Kelly Kile

scrappy quilter said...

I just love this post. It makes me yearn for when M was so small when he came to our home to his "forever family". Now he is 19 and in transition to living in a group home. Oh how I yearn for those days. Thanks Heather for this beautiful picture of Zoey. It's brought many wonderful memories which I really needed tonight. Hugs

Kristen's mom said...

Love the pics! I think we are both enjoying our new freedoms...freedom from the awful AML treatments. Each time I go to the clinic I ask the docs about Kristen's energy level and each time they same the thing, "She has been through a lot, the treatment for AML is intense and it could take 9 months to a year after treatment to get back where she was." I try to find comfort in those words but I still worry that something is cookin. I don;t know if the worry will ever go away.

Anonymous said...

Heather - What a wonderful gift someone gave you after Zoey's birth. Perfect, so fitting of you and the "little one".

Love her expressions from smiling to"disgust" as you put it. Wonderful that you and she had some together time last evening.

Your post sounds like you are feeling better today. May each day bring you health and happiness to help with all the "stress" of life in the Needham household.

Would you put name of Mark's new show (working on) in an uncoming blog. Would like to know so I can "scope it out" when it airs.
(That proud auntie thing)

Taylor - so sorry you have migraines. They are just plain "ugh" Feel better. You must be heading off to Pepperdine soon.

Looking forward to receiving my bracelets. Many friends are waiting for their "bracelet". (Check mailed out Thursday)

Love & hugs to everyone

Bluebelle/Loraine

sturpin said...

What a beautiful moment. Thank you for sharing it with us.