The Beginning

I'm not a big writer, but I decided to start a blog to help me share and vent all my struggles right now. Its been hard lately.  Our son Luke was diagnosed with spinal muscular atrophy last November and since then our world has changed drastically. SMA is a degenerative muscular disease with no cure. Luke never rolled over and still can't sit unassisted. Crawling or walking won't ever happen without a miracle. We believe in miracles and still pray for healing all the time, but we know God uses everything for a purpose. When we got the diagnosis it broke our hearts and it still hurts. Whenever I see a child his age and remember what he should be doing it breaks my heart all over again. But Luke can say mama and dada. He can laugh. He can breath and eat. Some kids with more severe SMA can't even do those things without machines and tubes. I'm so grateful for the time we have had with him and I'm learning more and more each day to trust that God is in control. People tell me all the the time that when they try to imagine what I'm going through they feel that their life is so blessed. I totally understand that because healthy children are such a blessing! But I feel like my blessing just looks different and has different challenges. Luke is my blessing and he's perfect to me.  Someone told us about a poem about raising a child with disabilities when Luke was first diagnosed and it really describes how I feel.

WELCOME TO HOLLAND 
by 
Emily Perl Kingsley. 
c1987 by Emily Perl Kingsley. All rights reserved 

I am often asked to describe the experience of raising a child with a 
disability - to try to help people who have not shared that unique 
experience to understand it, to imagine how it would feel. It's like 
this...... 

When you're going to have a baby, it's like planning a fabulous vacation 
trip - to Italy. You buy a bunch of guide books and make your wonderful 
plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may 
learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your 
bags and off you go. Several hours later, the plane lands. The stewardess 
comes in and says, "Welcome to Holland." 

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm 
supposed to be in Italy. All my life I've dreamed of going to Italy." 

But there's been a change in the flight plan. They've landed in Holland and 
there you must stay. 

The important thing is that they haven't taken you to a horrible, 
disgusting, filthy place, full of pestilence, famine and disease. It's just 
a different place. 

So you must go out and buy new guide books. And you must learn a whole new
language. And you will meet a whole new group of people you would never have
met. 

It's just a different place. It's slower-paced than Italy, less flashy than 
Italy. But after you've been there for a while and you catch your breath, 
you look around.... and you begin to notice that Holland has 
windmills....and Holland has tulips. Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy... and they're all 
bragging about what a wonderful time they had there. And for the rest of 
your life, you will say "Yes, that's where I was supposed to go. That's what 
I had planned." 

And the pain of that will never, ever, ever, ever go away... because the 
loss of that dream is a very very significant loss. 
But... if you spend your life mourning the fact that you didn't get to 
Italy, you may never be free to enjoy the very special, the very lovely 
things ... about Holland.