Friday, September 23, 2011

"One cannot consent to creep when one has an impulse to soar." ~ Helen Keller

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Would you look at my girl? Caitlin took these yesterday. I think they are some of the most beautiful photographs we have of Zoey. They capture that indescribable spirit of hers. They, in my opinion, represent the quintessential Zoey.

I have studied each of these pictures at great length. Each tiny feature on her precious face. Her itty-bitty arms. Her auburn hair that has gotten so long and often over takes that tiny body of hers.  I look and I see things others may not. Her hair for instance. There is seldom a day that goes by that I am not brushing it or stroking it, that I don't marvel in the fact that chemo never took it. Then there is her little left eye that is ever so slightly different than the right, due to her stroke. We tend to forget that her vision loss is mid line over in that eye, because she compensates so effortlessly in and around her world. In the laughing photo, I see her little "shark tooth" as I call it, tiny and pointy and I am reminded that she is missing the other one.  I see her little left arm, that just  "hangs out", as she kinda forgets it is there. What I mostly see,  is a child who was never informed at her fragile beginning, that forces were at large that would have a lesser soul creeping through this life and instead, Zoey has taken all that has been thrust upon her and done oh so much more than soar.

I am taking some lessons from my girl this week. Just added 2 new inhalers to my already existing one. Trying to come up with a plan to recoup some of my 40% lost lung function. Had some allergy testing done and found out, after sticking me with 60 of the most common  environmental allergens, that I am highly allergic to 58 of them. My arms didn't just react to them, they revolted.

I seldom talk about me here on the blog, especially health stuff, but I have to tell you, with my impending birthday, I am totally psyching myself out on the health front. The latest of course being the lung/untreated asthma thingy. Which kinda knocked me off my mental game for a day or two. But I have a few more little lovelies going on. Most which I have known for awhile now. Weird combination and very eclectic. Like: Meniere's, which is a nasty, nasty vertigo disorder, Lupus, which I have tested positive for the antibodies on several occassions and have, thankfully, some of the mild symptoms and I am rare on what I would consider flair ups, a low platelet disorder called ITP, 3 nifty little heart things: MVP with moderate regurgitation, a prolonged QT wave, especially when I am low on potassium which can happen often because I take or rather should be taking, a diuretic for my Meniere's, as well as a crap load of PVC's and I am not talking about the pipes.

Let's see, have I missed anything? Nope, I think that covers it. My point, because I do have one, is although growing old is a bitch on some days, and that mirror is certainly telling no lies, I am really trying, trying being the operative word, to grow old as gracefully as I can. Seems my body has other ideas. But for now I suppose, I will do as I have often done over the last 5 years, and I will follow Zoey's lead. I will refuse to creep through the last half of my life and instead, I will soar.

22 comments:

colleen said...

Okay, so there it is... despite all of these "issues" you continue to amaze... as does your beautiful daughter....stay aware, do what you need ( better to know about allergies than not) and keep going. and BTW happy birthday, you spring chicken!

Erin B said...

I do agree, those pictures of your little beauty are indeed beautiful. I so wish I lived closer and could give Miss Zoey a big hug and feel her spirit in person.
So sorry to hear about your many speed bumps on this journey. It is wonderful though that you can gain such strength and perspective from a 5 year old!

Elizabeth said...

The light in those photos is so beautiful -- around her and most of all, emanating from her. Thank you for posting them -- all of them. I'd like a copy of one of them to post over my desk.

As for you and your health -- sigh. I pray for you to have continued strength and resilience. You, too, have a beautiful light --

The Annessa Family said...

You made my day so much brighter with those pictures of sweet Zoey - thank you.

As for health - I hear ya! I just got diagnosed with some scary stuff that has had been a little "off" this week. So much of it is in your head...and I still havent found that "off switch" for my mind yet...

BUT!

You are the same amazing woman you were before any of those diagnosis. Promise. In fact - your better. Because now you know more about what you need for your health.

Praying for peace.

Brooke
www.TheAnnessaFamily.blogspot.com

The VW's said...

Soar on sweet friend.....right alongside your most beautiful sidekick, Miss Zoey! You are both truly amazing! Hugs!!

Cammie Heflin said...

I LOVE those pix of Zoey! They are gorgeous! Addy kept touching the screen saying "Zoey Zoey Zoey". I'm pretty sure she misses her :( I'm so sorry things are going on with your health, it stinks, however, I know that you will keep right on going, no matter what! I love you dear friend, hope to catch up soon!

Michelle said...

Beautiful pictures, she has captured a piece of my heart from afar. Will be keeping you both in prayer.

Anonymous said...

FYI-
http://www.sads.org.uk/drugs_to_avoid.htm

Seriously, take this to "heart". I was diagnosed with Long QT, and didn't think it was that big of a deal. I'm a three time cancer survivor, afterall.

Then one day as I was waking up from a cadiac cath in the hospital I had three young doctors standing at the foot of the bed telling me they wanted to implant a defibulator, real soon, no big deal - they could schedule surgery in a week. Hmm, isn't that when I'm not supposed to make major decisions - when I'm drunk on drugs.

So I said sure. I got home, read the information THEY gave me and fad huge second thoughts. I canceled the surgery, all the while searching for a second opinion and being weepy on the phone with many cardiologists' admins. I was pretty frightened at this point.

Finally I was able to see Dr. Carey Fredman, who specializes in cardiology electrical problems. He is quite specialized indeed and if he diagnoses you, prescribes something or shakes a stick at you, no cardiologist will contradict him.

He told me to read this list of drugs (a different website, but same list.)

I stopped taking Tomaxafin (to my oncologist's dismay) and Cipro and I often refer back to this list. Well, I no longer have Long QT Syndrome. Three years later. And thank goodness no large (in my mind) metal implant. Imagine that.

So I hope you take the list seriously. If just to talk to your doctors about it. If you were in St. Louis and dropped Carey Fredman's name, they would first ask how you even managed an appointment (...guess I can be pretty pathetic on the phone..) and then be very curious what he said.

You've got so so so much on your plate of "stuff". It would be nice if LQTS was wiped off the plate. I know how that is.

Today was Down Syndrome Awareness Day in St. Louis. Albert Pouhlos has a foundation that raises money. A lot happened at Busch stadium and the kids liked it as much as the adults. Or maybe the adults enjoyed it as much as the kids. Hmmm. You might find something at KSDK.com if you have time for such things.

Zoey becomes prettier every day. Actually, every member of your family does. Really. Honestly.

Thank you for your blog.

Sweet Pea's Mommy said...

Absolutely adore those photos! Definitely some of the best I've seen! I see enlargements and framing in their future. :-)

Please take care of yourself! Those beautiful kiddos of yours need you healthy.

Anna said...

So glad you know and can proceed with treatment to get your lung function up to the highest possible. Those photos..... stunning.I love your list of what makes Zoey unique. I can see things in my little Grace too.....

Kristin said...

Praying for your health :)
Loving these pictures even more now that I see them on the big screen and not my phone. Just beautiful.

Jamie said...

your comment has made me teary!! The overwhelming faith for my Madie! Yeah I had to laugh at the heck with numbers and stuff..lol. Oh and those "hand over hand" art projects.! LOL I just enjoy Madies hand print on anything at least I know she touched the paint! These are beautyful pictures of Miss Zoey she has smitten me from day 1 finding her story when I was so scared of seizures.. We certainly have two little fighters on our hands :) and OMG yes I super jealous of Miss Reagan loungin in her adorable beach wear! Its so muggy and rainy in CT now. (((hugs))
me.

SECRET PEPPER PERSON: said...

Amen, sistah about soaring! You are also right about the photos of Zoe. Absolutely the best. She is a work of art and a wonder. Oh wait...that's the name of your blog isn't it :)

Becca said...

That beautiful, beautiful, amazing little girl of yours...I'm at a loss for words. She has a beautiful, beautiful mother, too, one who wears age with grace, class, and strength. I envy you all of that. I think we'd all do well to observe and learn from you. Happy early birthday, Heather!

Melissa said...

I love these photos. I think they are some of my favorites too! Zoey just shines through them. :)

Shelly Turpin said...

Zoey is beautiful - and I am grateful that you know what ails you and that you do something about it. It's strength. It's wonderful.

OK - talked to my PT about your little one. She says find a new PT. Your daughter will never walk with that PT - ever. She says 4 1/2, especially with everything Zoey has faced and overcome, is way too early to give up. I agree. She asked a million questions, of course. Does she weight bear at all?

cheekyradish said...

Beautiful pictures of the beautiful girl...

Aging... just isn't all it's cracked up to be... hope your health issues give you a deserved break!

Scrappy quilter said...

Zoey has always encouraged me in everything she has accomplished. It's so neat to see her encouraging her mommy!! The pictures...there aren't words to describe her beauty. It shines through both in her smile and from deep within. She is one beautiful little girl who is going to go miles, even though some don't think so. Love ya

Susan Hart said...

She is beautiful! It is amazing what little ones can go through and seem to take in stride. It's like "okay that doesn't work so Ill do it this way!" I've been following your blog since Zoey was born and praying for you all. I found it through Reagan's blog. As I will be 50 in 4 months, I can so relate to your issues as well! God bless you all!

Cole said...

And soar you do dear one. Your family is filled with such spirit and wonder! Health stuff is so very scary, but you are right to hit it head on- you have to! You're a mom- you don't have the choice to ignore your own needs! Hugs and love!

Anonymous said...

Love the last one - look

Aunt Bluebelles like a model!

Melani said...

I have not been on here in a long time, but these pics of your beautiful Zoey are just awesome! I too, noticed her pointy tooth, and thought it was kinda cute, and her hair, omigosh, her hair is just beautiful/wonderful/awesome! I have missed your family and blog. take care.