Wednesday, December 17, 2008

Happy Holidays from all of us...

Mikey told me that he wanted his adoring fans to have an update. And you just can't ignore Mikey telling you what to do.

I'm going to get a nice photo spread together when I get on vacation next week and publish a holiday update to everyone. We've had a mostly triumphant year and we've managed to keep our family moving in the right directions across the board, and the update will give you guys all of that.

So this is a quick update to let all of you readers know that we're going to start using our blog again and share Mikey's story. In light of the 2 years of experience we have in living with a very special child, we've decided to do a couple of things, but we need your help to make them come to a reality.

* We are going to write a memoir of the first two years of Mikey's life. We're going to try and take our story and put it to use for families that go through things similar to us, and hopefully give them some hope for the future and courage to face it head on.

* We want to start an advocacy group to help families find, secure and manage in-home nursing, medical supply deliveries and manage the massive paper nightmare that floods your kitchen table with decisions to make, decisions made for you - mostly not to your liking, and how to manage the people in your home.

Here's what we need from you:

1.) We need pictures, stories, emails you have related to our story. I know I sent lots of emails to folks that I haven't kept as good track of as I'd like - but it's not like I was busy or anything.

2.) The concept for the book needs to have more than just our perspectives and all of you folks reading this probably have lots of little details that we didn't see because we were so busy just getting through our days. So I'm looking for your stories of watching our family go through these past two years. I'm sure we've done things we wish we could change, would do again without question and things we did that we don't even know we did - whatever you have, send it over!

Until the update, Merry Christmas from Mikey and his family.

Monday, February 18, 2008

What a Year!

Mikey turns one today.

Our little boy turns one.

The little boy that had to fight so hard to take his first breath has been with us for one year.

It's sort of unreal that this day is here - the pain, drama, sleepless nights that started a year ago are so vivid and real that it seems impossible to have made it through 365 days. Then you look back and it feels like the blink of an eye. All the cliche statements are true and I don't need to write them all here - you all know.

Shell wanted very much to put up a bunch of pictures (big surprise there, eh?) and post a blog entry. For me, it's been hard to know what to say these past few months. Life is so busy and we get so little sleep that it all just runs together into kind of a blurry mess. When I used to sit down and write these blog entries, I'd usually have a point to make - something that had to be said. But the real story is one of struggle and pain and living on so little sleep that you can't think straight. Truth be told, yes, there are genuinely amazing moments that happen all the time - but they're so mixed into the sleepless blur it's hard to remember them clearly.

I think people want to see our family grow up together, see how the spirited fight that our youngest boy has in him and see where his life goes. And there's no shortage of fight in this little boy, let me tell you. That being said, this blog has been a very, very personal airing of feelings and it's hard to find the courage to keep that going all the time. Sometimes to say exactly how we feel about something, it means sharing stories and details that are too personal for the web to see. Afterall, we have real people - ones who may be reading this blog right now - that come into our home in a professional capacity everyday of the week. We have public agencies that have the right to pry into our lives at any time - and they can read this blog. So it's very hard to share our day to day story in the tone I've always written in, because, well, I usually don't like pulling punches, softening the blows, etc. Rough stuff happens all the time and the smallest things can send our day into a tailspin - but as much as you want to shout those things out, we need all these people that aren't just family or friends. So the blog is going to evolve into Shell's daily control - something she can post the pictures of our days on, tell her side of the story and keep everyone in the know about how things are going here on the homefront, where we fight the fight that legends are made of on a daily basis.

What I can say about this past year is this:

I've never been prouder to be a father than the past year. My three children have made me the proudest man in the world. Michailey and Emme have proved themselves to be amazing little girls that get amazing grades in school, love their special brother without thinking about it, and love each other and their parents more than anything in the world.

Mikey has opened my eyes (and continues to do so) to just how normal he really is. He needs love. Check. He likes to be tickled. Check. He knows my voice and it makes him happy to hear me and see me. Check. Check. Check.

I can admit that it's hard to accept that I'm not raising the boy I thought I would have. I fall prey to wondering why it happened to him. What really happens is that I selfishly don't put him first and I put my own desires first. I can't say I won't do it, but with Shell's help, I'm realizing just how normal Mikey really is.

One year ago today, my wife and son's lives were in the balance. It wasn't hypothetical - it was real. It wasn't a tv show. Today, they've both had their passports stamped in St. Maarten and spent a week in New Orleans at a 5 star hotel. They're here, full of life and love - no matter what your sense of a higher power is, you can't tell me it isn't amazing.

Check out our slide show! I'm working on getting them into the blog, but for now, click here!



www.flickr.com








kasprzyk's Mikey Blog Photos photosetkasprzyk's Mikey Blog Photos photoset



Monday, October 29, 2007

So, it's been a while, eh?

Back in March, when things looked so grim, so dark, so utterly menacing, this blog had a purpose. Admittedly it had two purposes. One was to stop my phone from ringing - selfish, but practical. The other was a weak, poor attempt to replace something I was missing. Something that was so vital to my being, yet impossible to recognize in the state of mind I was in - I needed a friend.

Many people were genuinely surprised when I started a blog because they know me to be intensely private about many things, and exposing my family's life to the world seemed so counter-intuitive. Maybe it was my way of crying out for help.

And help came.

It came in the form of family and friends that overwhelmed my world with love. Without so many of the people that have helped us, it would have been impossible to sit in my room overlooking the ocean, working for a dream client, earning good money for my family, and feeling any sort of peace in my soul.

So many things that are amazing to me have happened. I'm grateful to Vic (Dad) for standing by my side and helping me bring his daughter home. I'm grateful to my sisters (Jenna, too) for the wonderful friendship and love they've given me. Dawn, Audie and Jenna are not only classy, wonderful sisters, I count them as my friends for life. While I've been away, I've truly missed them all.

I'm grateful to my Mom for all the nights she spent making sure I could at least pretend to sleep in the hospital while my loved ones slept in their hospital beds with blinking lights, beeping machines and cords, wires and tubes connected to them. There's nothing like your Mom to help make things a little easier. I've learned that being a parent doesn't mean you can take the pain away, but you CAN make it easier and she did.

I'm grateful to Doug and Erik have truly shown what brothers are all about. I respect you both enormously.

I'm grateful to Father Croglio, the man that has married and remarried me to my loving bride. The man that came to my side within hours of hearing that I needed him.

I'm grateful to my father for an email he wrote me where he took hundreds if not thousands of pounds off my shoulders when he told me that I wasn't going crazy and that my burden wasn't that of one man. I can't tell you what two lines in an email can do for your spirits.

With all this gratitude going on, it's hard to remember what the fuss is all about, isn't it? Shouldn't I have been grateful for all these people before they spent hundreds of hours consoling, helping, putting my girls to bed, propping me up, helping me get my work done? I should have and I probably wasn't. I may not have been awake enough to realize that I'm part of a family - a large one at that - of people who would give you the shirt off their back if it helped you. I'm ashamed that it took almost losing the love of my life and my only son to help me see.

What I've learned to be most grateful for is the peace in my heart when I think of my wife. Most of you know us to be the ones that won't think twice of telling each other what we think, whenever we feel like it. Sometimes it's downright uncool. Some of you have seen us struggle with our lives in ways that have brought tears to your eyes. There's no rule book for this. There's no guide posts along the trail. When you're cutting a trail with a machete, you're going to nick yourself and others along the way.

But what many of you have never seen, heard or witnessed, is the quiet love that my wife and I share. No matter the surroundings, the problems, it's there like a warm summer breeze.

So, in front of an amazing sunset, with my son as my best man, my girls sprinkling rose petals down the walk, and Dawn and Erik at our sides, Shell and I renewed our vows of love once again. She is my everything, she is my one true love. The one you get, hold on to, treasure your moments with, and never forget the heart racing fear that you may one day not be together on this earth. My advise to all of you is to make damn sure you're with the person you'd go to the end of the earth for and then never, ever let them go.

I share these pictures with you as proof that love endures all things if you only hold on. I share these pictures so the world has proof that love is all you need.

Thursday, August 30, 2007

THANK YOU!

Dear Friends, Family and all the people who have
prayed, thought about or supported us in anyway…This
is for you.




We don’t know how to begin to thank all of you who
helped out at the benefit. We know there were many
people behind the scenes who cooked, cleaned, made
food and donated baskets, money or their time. It was
AMAZING!

We felt so honored and loved by the amount of people
who showed up and blessed our family with their
smiles, their hugs and well wishes. We are truly
lucky to have you all in our lives and our family in
your hearts.

We’d like to continue to write, upload pictures and
give you information about Mikey and our family as
often as we can. I can’t believe how the summer flew
by and I barely saw the sun with all the appts. and
therapies Mikey has had. My girls barely got a chance
to ride their bikes or swim in the pool. But don’t
feel too bad for us. In a few weeks we will get a
chance to earn some of that time back and make up for
the time Mikey and I spent in the hospital.

We have an opportunity to vacation this fall. We will
upload the pictures from where we are at when we get
there. You can start guessing if you want. It’s a
beautiful place that I have never been and Mike, my
husband, can’t wait to whisk our family away to this
place. No nurses, No therapies, No doctor appts.!!
Mikey’s first airplane!!


We have a lot on our plate right now but we had to
make the time to do this video for you and let you
know how much we have needed your prayers and kind
words. The cards that are coming in are so touching
and warm. You have no idea how loved that makes us
feel. I only hope one day I will be able to give back
all the love you’ve shown us.

Thank you, we love you, this is more than words can
express.

Love,
Mike, Michelle, Michailey, Emme & Mikey

Wednesday, August 15, 2007

Meet Mikey!!!


Okay...so our family and friends decided to have a benefit for our family this Sunday, 1:00pm at St. Christophers Church, 2660 Niagara Falls Blvd., Tonawanda, NY.

Mike, is working on another movie and I have pictures of the first few days when Mikey and I were in the hospital.

We are very excited to hopefully meet a lot of people who have shown us so much support during these past 6 months. Many of my doctors and Mikey's doctors will be there.

There is going to be a huge basket auction, raffles, a bounce house, 50/50 split, food, music and so much more!

If you are not able to make it out that day...please know that we understand. We are grateful for your thoughts and prayers. They help more than you know.

~Michelle & Mike

Until then...here are a few of my favorites of Mikey and our family! (I will update when the blogger photos finish uploading)