Truly Madly Deeply

Saturday July 16th was our 5th wedding anniversary! It is hard to fathom that 5 years have already gone by. I was diagnosed with NF2 just the year prior (in July of 1999) so it was a very trying year to plan a wedding in the midst of all the unknowns of what was going to happen down the road and coming to grips with the realization that I did not just have one brain tumor but several (quote by the radiologist "too numerous to count"). We had been told that year that the chance was very high that I would become deaf (the projection was much sooner than it had happened.....originally we were told 1-2 years but I was hard of hearing for about 5 years).

I recall hating the thought of losing my hearing and someone just mentioning the idea of learning sign language brought uncontrollable tears to my eyes. You see, for the NF2 person it is not just the idea of becoming completely deaf that is so tramatizing. Many people lose hearing due to various reasons/conditions. But for the person and family of someone with NF2, the digression and loss of hearing is a reminder of what is really going on inside the head. You try to do all these things to keep busy and avoid that fact the there is a scary but very real unknown that exists everyday of your life.

For those who know me very well and who knew me as a hearing person, music was a very important part of my everyday living. As I mentioned in an earlier post, it was quite common for me to fall asleep listening to music, to be wearing a set of headphones, and to memorize the lyrics so I could sing along with songs. I spent a great deal of time picking out songs for our wedding which kind of turned into a small fiasco as the DJ for our wedding really turned out to be a doofus!

Fortunately he did have the one song that meant alot to me and that I wanted to play for our first dance which we regard as our "wedding song". If you know us really well you will understand the lyrics and why the words are meaningful to us.

Harley was very much aware of the situation and being the spouse of a person with NF2 I think is the hardest position to be in. I know when I had cancer it was probably the most emotionally difficult for my family. Knowing all this and not knowing exactly what the future was going to bring, he took a tremendous leap of faith and showed his enormous sense of courage and love.

Harley, thank you for everything you are, have been, and haven given me. I love you very much and I don't know how I would have gotten through all of this without you. You have made my dreams come true.

Truly Madly Deeply

I'll be your dream
I'll be your wish, I'll be your fantasy
I'll be your hope, I'll be your love
Be everything that you need

I'll love you more with every breath
Truly Madly Deeply Do
I will be strong, I will be faithful
Coz I'm counting on

A new beginning
A reason for living
A deeper meaning (yeah)

I want to stand with you on a mountain
I want to bathe with you in the sea
I want to lay like this forever
Until the sky falls down on me

And when the stars are shining
Brightly in the velvet sky
I'll make a wish send it to heaven
Then make you want to cry

The tears of joy for all the
Pleasure in the certainty
That we're surrounded
By the comfort and protection of

The highest powers
In lonely hours
The tears devour you

I want to stand with you on a mountain
I want to bathe with you in the sea
I want to lay like this forever
Until the sky falls down on me

Oh can you see it baby?
You don't have to close your eyes
Coz it's standing right before you
All that you need will surely come

I'll be your dream
I'll be your wish, I'll be your fantasy
I'll be your hope, I'll be your l0ve
Be everything that you need

I'll love you more with every breath
Truly Madly Deeply Do

I want to stand with you on a mountain
I want to bathe with you in the sea
I want to lay like this forever
Until the sky falls down on me

- Savage Garden 1997