I MISS NORMAL

I miss normal is the best way to describe why the tears are just flowing these last few days and my heart is aching. I asked a friend a few weeks ago how her and her family were doing and although I can't remember her exact words she basically said things are just normal and good. She expressed how she was grateful for normal...we aren't rich, we aren't poor, we are healthy and just happy to be where they were at.

I miss normal SO much. I miss hearing Dakota's little voice waking me up in the morning instead of the sound of a trach...I miss him telling me why he is sad instead of hearing him scream and cry and trying to guess out of the million things that could be wrong what it is...I miss playing with him, letting him take the lead and just enjoying being there with him instead of me doing all the play...I miss a normal day of just cleaning the house and doing laundry instead of therapy, therapy, therapy,...I miss just up and leaving last minute to go take something to Zach or run to the store instead of being bound down at home...I miss taking Dakota to the store with me and chasing him around and hearing his little giggles (I used to love it when Zach would be home and I could run to the store by myself. Now I HATE it! I hate having to wait for someone to be home so that I can go and I miss seeing his little body in my cart. It is so lonely now!)...I miss letting him decide what he wants for breakfast and sitting down at the table to eat with him...I miss cleaning up the messes afterwards instead of cleaning out a stupid blender and feeding bag...I miss our old bath times where he would LOVE to play in there forever and ask for bubbles (now it seems like such a chore)...I miss being able to go out and pull weeds or work in the garden while Dakota could run and play (he LOVED being outside)...I miss him asking to play with Tanner (our neighbor) and watching them just laugh and play together...I miss planning our summer trip to AZ to swim and play with cousins or to go camping(now the idea of it sounds impossible)...I miss going anywhere in the car without having to load up 10 million bags filled with medical and emergency crap...I miss having Zach being able to drive and take me out on a date...I miss Zach being able to go out and truly enjoy the things he loves to do like hunting and fishing...I miss playing on my slowpitch softball teams and doing what  I love to do...I miss our smiles and free spirits that seem to be taken over with the stress of our lives...I miss being able to ask anyone to babysit instead of having to bug the same three people every time we need to go somewhere...I miss seeing Dakota suck on his blanky...I miss his hugs and kisses A LOT, I give him plenty but they are just not the same...I miss going to Sunday dinners at the Friedlis and how excited Dakota was to be there, he hated when it was time to leave...I really miss his voice and ALL of the funny things he would say...I miss looking forward to his next milestones (I wonder every day what he would have been learning or doing now), instead we are back to square one trying to learn to hold our head up again (This is one of the hardest things for me. All you parents know how excited you are for your first child and how fast you want to see them sit up, take that first step, smile, talk, etc. You are experiencing EVERYTHING about parenthood for the first time. You look forward to every new thing and I feel like all of that was just taken from me. Everything he had learned and everything he was going to learn. Not sure if any of this makes sense, but it does in my head) I JUST MISS NORMAL!

This poem a trip to Holland describes perfectly the feelings of having a child with a disability:

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.

This describes it so perfectly. The problem is I got to go to Italy for two whole years and I know how truly wonderful it is there. But then in one split second I was kicked out to Holland. And yes, there are some wonderful things about Holland but I can't forget the memories of Italy. They are a deep part of me and consume my mind every day. And the part that scares me the most is that I don't know if I'll ever get to go back to Italy with Dakota or with any child in this life. And that is hard to take in. I will never let go of my hopes and dreams to go back but for now I am here in Holland and I am trying my best to see the beauties that are here every day. Some days it is hard though.

Sorry to dissapoint all of you who think that we are so amazing through this with this post. But the truth is...we still cry almost every day even though it's been 6 months. The truth is I can't wait for the second coming when Christ will come and we can return home and all this super HARD life will be done and Zach and Dakota will be perfect again. When the crazy preacher guy or whoever he was was advertising the end of the world was coming last month...I'm not gonna lie...I didn't believe him but if it really happened I wouldn't have been dissapointed. In fact in my own secret way I was hoping he would be right. Someone gave me a card that said...The grass looks greener on the other side but it is still hard to mow. I know that is true but man...no matter how often we mow it doesn't seem to get any easier over here.