Friday, June 6, 2014

I bid you adieu...

So it's been about 2 months since I've posted anything. Things are going pretty well. The twins are 7 months and doing great!  Macy's counts have been relatively stable. She has ortho and nephrology coming up soon and hopefully all is still well. She will be 4 this fall, and if I had to guess I would say her transplant will probably be in the next 2-3 years.  She is starting dance class in a couple weeks, and will start school in the fall. I'm super nervous about that just because I know she's gonna get sick. But we need to let her live life too. I don't want her to miss out on all the things we are trying to save her life for. So I'm going to just suck it up and let her do it all. 

Let Macy be Macy. 

She loves dancing. And she loves being around other kids. 
She needs these experiences now. To live now. FA has no cure. Life expectancy is around 27-29 years old (and that's with a successful transplant). I try not to think about that part. I try to assume they will find a cure in her lifetime, so I don't have to think about that. 

Anyways, the original point when I started this blog was to keep family and friends up to date on what was going on with Macy so I didn't have to talk about it all the tine with everyone over and over. All of our family and most close friends are on FB now. When it seems like transplant is near I'll probably start a page for her on there; or just use my existing one. 

I found a company that turns your blog into a book, so I'll do that first. Then after I receive it I will probably delete this blog.  I want to thank everyone for all the support and kind words since Macy's diagnosis. I can't believe it's been 3 years since that horrible day.  It sure has been a whirlwind, but it's the hand we were given and there is nothing we can do about that. What we can do is choose to be happy anyways, and try to live as much life as we can while we are still here. 

"Nothing worth having was ever achieved without effort" Theodore Roosevelt

Here's a couple current pics of the kids. 
     Emmet (left) Reece (right)
    Our family of 5 at the zoo!!!

Lastly I want to close with my favoritest (<~~~~is that even a word) poem of all time. It's 'George Gray' by Edgar Lee Masters. 

I have studied many times
The marble which was chiseled for me--
A boat with a furled sail at rest in a harbor. 

In truth it pictures not my destination
But my life. 

For love was offered me and I shrank from its disillusionment;
Sorrow knocked at my door, but I was afraid;
Ambition called to me, but I dreaded the chances. 

Yet all the while I hungered for meaning in my life. 
And now I know that we must lift the sail
And catch the winds of destiny
Wherever they drive the boat. 

To put meaning in one's life may end in madness,
But life without meaning is the torture
Of restlessness and vague desire--

It is a boat longing for the sea and yet afraid.

Edgar Lee Masters 

Signing off for the last time!!
Take care,