Thursday, July 5, 2012

Welcome to Holland - July 5 Marks One Year

July 5, 2011 - We started this journey in Mitoland....

By Emily Perl Kingsley:

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.

- - - -

Today, July 5, 2012, marks one year of diagnosis of Leigh’s disease for our family. Slowly, we have fumbled our way to Holland.
A year ago this morning, Neil and I sat listening to Dr. Koenig tell us the ugliest most gut wrenching, shocking news that no one should ever hear. We lived in a fog for many many weeks and months, slipping in and out of shock, but we kept going because of Will and in spite of ourselves. Every morning for at least a month I woke up thinking I had a bad dream and then realize it was true, cry, then live the rest of the day thinking how surreal it feels.
I suppose I could dwell on a lot of things today, and likely I will. But for now, I just want to say thank you to our family and friends who have supported us this past year – with tears and laughter. I know God has been watching over us, even though I’m so angry with him I can barely handle it.
Right now, I try to view these years as what might be the happiest time of our lives. We have a beautiful, wonderful son who is very much alive. We have real hope for giving Will the gift of a brother or sister or both. Neil and I have developed a wordless language that has made our marriage even stronger. Our families and friends have often lifted us up in our ugliest hours. Neil’s company is a thriving business. I was able to reduce my work week to do more for Will and our family. The list could go on for days.
So, thank you family and friends and most of all, thank you to Will.

And now, a walk down memory lane!

First Bath

Month 1

Month 3

Month 5

Pumpkin patch

Month 8

Month 8

First Christmas! Sick with RSV so no Santa pic.


Happy Birthday Will - 1 year old

Month 12 Trying to walk....

Month 13 - the old "w" sit that is a no-no

Month 15 - Started therapy and got some boots

Month 16: The ol' SPIO suit and still trying to learn to walk.

Month 16: Crawling around on one of my birthday gifts.

Happy Halloween  ARR matey


Christmas - Started walking Christmas day!

The "Fonz" lean back.

Christmas presents
Month 22 - Forward facing in the car seat

Month 23 - still needs some help / nervous mom while walking on the concrete

Can sit to stand quite easily now.

Mopping up.

Month 24

Happy second birthday!

Month 26

Month 27

July 5, 2011 - We all wanted to hide in a bag around this time... Diagnosed with Mito.

September 2011: Trip to Stanford for EPI-743 trial.

Pumpkin patch - yup, that's Houston for you, shorts in October.

Halloween 2011

Christmas, 2011

Helping dad out around the tree

Hay ride December 2011

Christmas Sing-a-long at school. My little Rudolph is concentrating hard.

Packing for our week 13 trip back to Stanford for the drug trial

The bag of empty EPI!

Eating chips!! And NOT choking. A miracle.

Breakfast with Santa at the Aquarium.

January 2012 - "I just climbing climbing" - with mom or dad there to catch him.

Helping dad build my new "big boy" furniture

Chillin' with my girlfriend, Caroline

Smores for everyone!

UMDF Energy For Life walk - raised more than $23,000 for research to a cure!

Trying to get a family photo pre-walk on a very rainy day.

At the zoo - first trip!

"Football player" hat, gloves and ball and riding a bike. Not sure how all that works really.

Going to his first theater performance with friends from school.

Pre-hair cut mohawk


Puppy dog walk in gymnastics

High fives with Mr. Glass

Happy Easter! Did an awesome job gather eggs this year.

April 2012 ECI Graduation

With Mr. George

Birthday boy! April 2012 / 3 years old.

Dress up

Trying on some new boots.

Working on his pinning at school

June 2012 A frozen yogurt mess!

July 4, 2012 - Driving the boat with daddy-o

Watching the water.

Cheers to the next however many months, years ahead of us with my little Mito Warrior.


  1. Lori, these pictures are so amazing. as always, I love the month 8 pics with that hat. what a cutie! I can't believe its been one year. The photos sum up so much accomplished, and so much love. Will is such a champion. Biggest hugs to you!

  2. Oh Lori, how precious! Looking through those memories brought tears to my eyes. What a cutie you've got! Thanks for sharing! All the best to you guys!

  3. Lori - your Italy/Holland story reminds me of the book "The Gift of the Ladybug". Shortly after I signed up for the mito walk I got a promo in my Inbox that buying the book on a specific day would have all the proceeds go to UMDF. It's now one of the books the kiddos like to read the best.

    I pray for many more years with your little warrior. Love pick #64 in the green shirt. He has a little sparkle in his eye that seems to say "I know something you don't know.". Hmmm....maybe he does ;-)

  4. BEAUTIFUL family and baby boy!

  5. With tears in my eyes and a heavy heart all I can muster is what an incredible family you are. The love Will has beams through in every picture.You and Neil have given Will every thing he needs to make this journey. Always know my love, support, and all I have to give are yours even my life. Love to all 3 of you MOM aka DEDE

  6. What an incredible journey to Holland you guys have had. Will is so precious and just radiates joy for life in all his pictures. Praying for a wonderful year ahead full of life and love!

  7. Wow, I can't believe it has been a year, but on the other hand it feels like this journey you are on has already lasted a lifetime. I love looking at the pics of Will and seeing what an awesome little boy he is turning into. I can't wait to keep watching him grow, hopefully we will get to do it for many more years to come. I am thinking of and praying for your family every day and rest assured Abby still says her "Will prayer" every night at bedtime:)

  8. Thanks so much for sharing the Kingsley piece. It really spoke to me, helped me to see another side of the Martin family. Awesome pics, too! The 2nd pic really made me smile:) And I love seeing the gymnastic photos, too! We are proud to be in the extended 3 Rs Plus family.

  9. I love watching him grow in all these precious pictures. You guys are simply amazing. Here's to dancing many more months in Holland.

  10. I love the Holland poem, it really puts things in perspective! I still am at a loss of words most of the time when I come here to type. I always just want to say how sorry I am and how much I pray for you, Neil and Will! You are such amazing parents and have given Will so much love and support to make him the mito success he is! The pics are so adorable, what a handsome little man! Love yall!!

  11. Lori and Neil, you are amazing parents. Love Monica

  12. Lori
    Time does fly I bet!
    Well that is a great post, love all the pics
    A social worker gave me that poem when we first found out Jagger had Mito, and it is so true!!
    Hope Will is doing well and it was nice meeting you guys in DC

  13. Dearest Cousin Lori,

    Will is sooo adorable! I loved getting to see these precious photos and catch up on your lives after all these years of being out of the loop. You and Neil are clearly incredible parents and I send you all my love and blessings. It was great to see you and reconnect at Mama's funeral.

    Loads and loads of hugs,

  14. Lori,

    Will is so fortunate to travel thru Holland with you and Neil. You are amazing traveling companions.

  15. What wonderful photos! You guys are amazing!

  16. What wonderful photos! You guys are amazing!

  17. Beautiful photos! and that is a lovely poem! hope everyone is doing great!

  18. I was reading abour your son on CNN and he is so cute and adorable. You are beautiful parents and beautiful family.
    I am so sorry for what you are going through. I hope he will ling long and happy life and all this will just pass.
    I was reading somwhere a long time ago that there is some improvement that patients with that kind of desease experience while on natural juices therapy, precisely speaking there is this cancer treatement that also heals many other deseases and hugely improve the functions of all body systems. I just wanted to share with you that info and if you would ever like to research the "Gerson's Therapy" Max Gerson is a German doctor who invented cure for Cancer, Dabetes, Asthma, Tuberculosis and many other but he was silenced by medical powers. You might want to read about him and his therapy as he basically invented a way to cure with food most anything that body has to deal with. By strenghtening body systems body is able to rid of most unthinkable deseases.

  19. Lori what a wonderful story and how sympathetically you tell it. I came out in a sweat while looking at the pictures.
    We had 5 children, lost our oldest son who looked something like Will when he was 7, and then revisited the nightmare 25 yrs later with our youngest daughter who developed symptoms at 20.
    You're an inspiration, and make the task of raising awareness & funds so much easier for us all.