Summer is the Time to Celebrate.

July is the month I was born. July is the month I celebrate my life. Each birthday reminds me of how blessed I am to be alive, to be able to breathe without oxygen (most of the time), to be able to raise my children, love my husband and live my life.

I walked up a hill the other day. When I reached the top I stopped and cried. My tears were for the struggle I felt in my chest, air does not come easy these days. I cried for my friends, many were much younger then I, who can not walk up hills anymore, I cried with gratefulness for I had done something I couldn't have done a few months earlier.

I am stable. Again. I celebrate because I can.

A favorite song -

So much pain and no good reason why
You've cried until the tears run dry
And nothing else can make you understand
The one thing that you held so dear
Is slipping from your hand
And you say

Why, why, why
Does it go this way
Why, why, why
And all i can say

Somewhere down the road
There'll be answers to the questions
Somewhere down the road
Tho' we cannot see it now
And somewhere down the road
You will find mighty arms reaching for you
And they will hold the answers at the end of the road

Yesterday i thought i'd seen it all
I thought i'd climbed the highest wall
Now i see the learning never ends
And all i know to do is keep on walking
Walking 'round the bend singing

Why, why, why
Does it go this way
Why, why, why
And all i can saysomewhere down the road
There'll be answers to the questions
Somewhere down the road
Tho' we cannot see it now
And somewhere down the road
You will find mighty arms reaching for you
And they will hold the answers at the end of the road

Why not take the plunge?

Since a bi-lateral, double lung transplant  is the "cure" for cystic fibrosis many have asked how come I don't just go ahead and get this procedure done.  There are plenty of times when my sentiments are the same.  I'm tired of being in limbo, struggling to maintain my health only to have infection drag me down again.  Enough already, out with the old, in with the new, let's get on with the next chapter in this book of my life.

Like most problems in life the answer of transplant is not simple.  The variable and complexities are many but can be narrowed down to a prime directive that dictate who gets lungs and when:  The doctors' priority is to keep you alive, so simply put, when you can live longer with transplant then without then they are ready to give you new organs.  Statistically speaking, the average lung recipient lives five years after transplant.  Ugh, the harshness of math, cold and calculating yet conveniently clear and comfortably measurable;  the language of science is black and white.  Other considerations for transplant such as quality of life, cost of care and the psychological/emotional impact of chronic illness are left to drown in the murky,  muddy waters of  feelings, beliefs and ethical dilemmas.

Life is simple.

GOING HOME.

Again.

Grateful.

Today's Longings

Entering day five of the second hospital stay of this year. I have not been "well" since the beginning of the year. I spent three weeks in February in the hospital, went home tired, completed two rounds of out patient antibiotics with no real relief so I'm back at UT hospital.

I am discouraged. Seems I've developed some new challenges. My oxygen saturation level is not stable. My hemoglobin continues to drop. I received a blood transfusion today. Now the questions are why is my hemoglobin low? Will my body respond and begin to hold onto the red blood cells that were replaced today. If not, then???????/

My experience with chronic illness is that it throws life off kilter. Getting better only to get worse again is demoralizing. I long for consistency.

Constantly fighting the resentment due to missing out on events, laying in bed on beautiful days, wrestling with the "big picture" so much that it is exhausting to think of the the daily necessary details of life AND at the same time acknowledging that I am one of the "lucky one" leaves me on an emotional see saw ride, up and down, up and down. I long for steadiness.

What does tomorrow hold?

Trying to remember who I am.

A few years ago if you would've asked me who I am then I would've spouted off a list of what I do. The list would vary depending on when on the time line you asked but may have included any combination of the following: wife, mom, counselor, professor, speaker/teacher, realtor, landlord, property manager, bus driver, social worker, home school teacher, case manager, program director, board member, grant writer...... the list would've been long because I was busy. I enjoyed being busy. I enjoyed setting and obtaining goals. I enjoyed multitasking. I enjoyed the controlled chaos of juggling family and career. I enjoyed doing.

If you ask me today who am I then you will get a different answer; depending on who's asking and my mood, I might say that I am a domestic goddess. This sounds so much more luxurious then homemaker. Or I might say I am a psychology researcher conducting a long term field study on child development i.e. a homeschooling Mom. I might even say I am a professional patient helping to identify the flaws in our current health care system (and there are many).

However, ever so slowly and painfully, I am coming to understand that who I am is different then what I do. Because of the "gift" of sickness, I do not do nearly as much as I used to do; nor do I do as much as I want to do. I do less but I am more; or at least more aware of who I am.

Wow, it's late and I am not sure I am making sense. Time to stop writing; ending this entry with this quote- “I am so clever that sometimes I don't understand a single word of what I am saying.” ― Oscar Wilde

Resurection Day

Setting aside all arguments, not getting caught up in the understanding (or lack of), choosing to dwell on the hope of all hopes, resting in pure goodness. This is what my belief looks like today.

Today I am reminded that I am not the only one who has been amazed, bewildered and surprised after being disillusioned, despaired and demoralized.

Today is a good day.