Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Thursday, September 30, 2010

I Challenge You!

Tonight I sat in my bed , watching a little TV, unwinding. I hear a "MOM!!" It's James, he's fighting something so I run in "what is it Jay?"
"My stomach and my chest hurt really bad"
"OK buddy, come on down and into mommy and daddy's room"
James proceeds to hop in my bed and I ask him some questions about what's wrong. We discovered it's a combination of indigestion and gas. Poor James is curled up, holding his breath and saying "It just hurts so bad". My mind goes to Annie - she spends most of her day, most all of her day's in this type of pain. I tell James "ya know mom can give you some medicine for that"
"What is it?" James asks.
"The stuff Annie takes all the time?" He asks
"Yup." "Ya know when Annie cries and screams, this is usually the reason, her tummy hurts a lot and she's not able to tell me so she cries."
James: "I'd cry and scream too. She's really smart....... Rett Syndrome really stinks"
"I know buddy. That's why mom and dad are always asking people for money, so the researchers can find a medicine to take it away."
"Mom, I'm going save my money and when I have $100 I'm going to give it to the researchers so they can help Annie"
"how are you going to save all that money James?"
"I'm going to do all the chores I can here and at Grammy's and Aunt Jen's and Aunt Katie's"
"You have a good heart buddy, I love you!"
"Love you too mom"
You see, James remembers a time when Annie wasn't sick. When Rett Syndrome was "hiding in her body" as he say's. He remembers when she said "Hi Jay"! and threw a ball, and was able to grab him and hug him all by herself!
He remembers when she could play "peak a boo" with him.
He remembers when her hands worked so well she could actually hold a book and turn the pages.
He remembers when they could play together, not him doing "hand over hand" to play with her.
He remembers when she could crawl,

and feed herself.
When he was able to rough house with her, not worrying about "brittle bones" like he has to now.
He remembers when Annie was able to care for him, instead of him always being her caregiver.
James has been Annie's #1 supporter since she was born, just 16 months after him.
James remembers before Rett Syndrome. When his best friend could play. He tells us that whenever Annie's in his dreams it's always "after her miracle". He wants his sister back.

So here's my challenge to you. My 7 year old is going to raise $100. Can you match him?
What can YOU do to raise $100 in October - Rett Syndrome Awareness Month?
Skip dinner once a week for the month?
Skip the coffee at the coffee shop?
Ask 10 coworkers for $10?
Join us at Quest for a Cure and get pledges to walk?
There's a million ways to get your hands on $100
Will you take the challenge? Will you play your part in saving the lives of 30,000 little girls in the U.S. alone? Will you help relieve their pain and give them a voice? My 7 year old is! Join him in his fight to get his sister back! Visit Annie's Page to hear her story and donate on-line.

Wednesday, September 29, 2010

An Open Letter to Special Needs Professionals

This was posted as a note on a friends facebook page, I just had to share! What perfect timing with all that is going on in our lives lately!

An Open Letter to Special Needs Professionals

By: Pia Prenevost


New teacher, or therapist, or doctor? Is that you?

Oh hello...

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well ... you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see ... a confident parent ... or an angry parent ... or a happy-go-lucky parent...

You might think that I understand everything ... or nothing ... or that I have all the experience in the world because I have done this before ... or that I know the rules ... or that I don’t know the rules and that is for the best... You might believe ... that I am high maintenance ... or overreacting ... or maybe neurotic ... or disengaged and uninterested ... or that I don’t really care ... or maybe I care too much...

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents ... the ‘special’ ones ... can be a pain in the ass. I know that. We know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves.

We are your harshest critics. We are our own harshest critics too.

We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.


This essay was previously published on

Friday, September 24, 2010

I know, it's been WAY too long!!

I haven't updated in a really long time. So sorry. You know, life, it totally gets in the way of everything that I have to get done :) Soooo, I'm giving you the shortened, run down of what we've been up to the past month or so....

School started on September 7! I now officially have a preschooler, kindergartner and first grader! Yikes!!
James is LOVING school! Which is such a blessing. He just loves learning, always has. He had a beautiful time in preschool but kindergarten for some reason wasn't the best fit for him. He's now going to a new school and he couldn't be more thrilled with 1st grade! I'm a little sad that he's gone ALL DAY! but to see him bounce into school and skip out of school with a huge smile on his face and tons of stories to tell me, well, it's sooo worth it!!! Oh, did I mention that he goes to the same school as Annie - LOVE IT!
Annie is in a new school as well. She had a LOT of changes happen in a short time. Annie was going to summer school and had an amazing teacher. This teacher was incredibly interested in Rett Syndrome and was excited to help Annie get her eye gaze computer. It was her job to help us with our therapeutic goals and after a few weeks I was so confident that she would just be wonderful for Annie. And then she moved to Japan!!! Oh CRAP! So thankfully Annie got a new teacher (pictured here) and YES, Dana is just as sweet and wonderful as she looks in this picture. She LOVES Annie! The only problem is that we are STILL having issues with our therapy goals (we have incredibly inappropriate PT goals and we have OT services but NO OT GOALS which is illegal but no one seems to care, even the lawyer that we hired last spring when this started - yah, I'm mad.) and we have not only gotten a new teacher but an entirely new team. So we are once again training, teaching, educating, and trying to get a whole new set of people to "understand" Annie! I can honestly say that I am so tired of trying to explain everything to everyone that I am just about ready to throw in the towel and say "forget it! she's not going to school anymore!" We have dropped her from full days to half and from 5 days to 4. We have LOTS of meetings set up so we will see how they go and try to find the best fit for our beautiful, eager to learn, Annie! I'm hoping and praying that we can get Annie into the right fit and get her some goals that she can reach for.
Honestly, could this child BE any cuter!? This is little Gracie's first crack at school. She is going to the preschool at our church. There's a little "separation issue" and I thought it might be easier to be at a place where she's familiar, uhhh, I was wrong. Gracie LOVES people but only people she knows, like the kids in our neighborhood I swear she would walk right in their house, turn on the TV and ask for a juice box, but people she doesn't know, she pretty much hides behind me and refuses to speak. Gracie is the kid that kicks and screams and cry's when her mom leaves the classroom (reluctantly, after a 1/2 hour of tying to acclimate her). So I'm patient because this IS her first time at school and Gracie, although upset about leaving me, is very eager to tell me all that happened in school and how fun all the kids are! Sooo, I'm hopeful that the separation will get easier. The great news is that Gracie is a smart little lady, she won't have any issues with learning and this preschool is so amazing about teaching the kids about the bible and Jesus - Gracie is already equipped with prayers that she's "teaching" the rest of us!
Little G - hard at work!

The next new thing happening with us is that we have ripped out our rickety, crumbling, carpenter ant infested, inaccessible deck and have put in a new cement patio with all the bells and whistles. We started with the front yard and added "ribbons" on the driveway to widen it so when we pull Annie in and out of the car in the winter our feet aren't standing in snow. We then put in a walkway from the driveway to the back patio. Finally we put another walkway from the main patio to a second patio that leads close to the
"jungle gym" for the kids.
Annie "supervised" the whole project!

We started with re-staining the jungle gym - thankfully EVERYONE helped!

Then we "demoed" the deck! Mostly Scott's job but we got some great help from Uncle Jeremy!
Oh, and Gracie!

This is the enormous dumpster, and NO, there was no problem filling it!
Then came the sod cutting and the gravel laying.

Here is the final driveway "ribbons"
The final walkway from the driveway to the patio.

The small patio and walkway leading to the main patio. The small patio will eventually be "Annie's Oasis" - filled with purple (her favorite color) flowers and fit with a padded glider that she can just relax on.
this is the main patio shaded by our maple. We got a fire-pit and a patio heater so we can enjoy the outdoors even in the fall. Oh, and it's completely accessible for Annie!!! She can "walk" everywhere!
We've been enjoying it by roasting marshmallows,

The kids have loved riding their bikes, scooters and pulling Annie in the wagon all over the patio!
Look how happy this little girl is! I know 99% of it is because she's with her daddy but the other 1% is because she can use the WHOLE patio and get up the the jungle gym to play with her sister and brother!

Next we celebrated Jay's 7th Birthday!! Oh man, I know, he's 7!!! Instead of a "friend" birthday James opted to go camping with his family - my little outdoors man!
Jay leading us on a hike
Annie, loving the outdoors! (rockin' the 80's pony tail!)
James, cooking dinner
James, hard at work!
Annie, loving every minute!
All 3 at the campfire!
How Gracie camps!
We spent Friday night with just the family. The cousins came up on Saturday, just in time for the rain. All the kids came back to our house for a sleepover in front of the fireplace in their sleeping bags watching movies and eating pizza - nice and dry!

Sooo, other than that, not much. Oh, Annie climbed a tree for the first time (just kidding but look how happy she is to be sitting in a tree with her brother!). Ok, so that wasn't such a quick post but I had to get in all the pictures! Oh, and we have gotten APPROVED for Annie's eye gaze computer the ECO 2. It arrives in just about 2 weeks! So there will be a lot of talking going on in our house. Stay tuned for videos!! :)

Saturday, September 18, 2010

Quest for a Cure!

10-10-2010 we will be walking to END Rett Syndrome for Annie, the 30,000 girls that suffer in the US alone and the baby girls that are born every 90 minutes that will have their freedom taken away by Rett. Will you walk with us? This is your chance to be part of a miracle! Grab some friends, coworkers, neighbors or bring your family and sign up at: . Don't forget the kids! There will be a clown with face painting, balloon animals, prizes, games and of course, TONS of food! Help make Rett Syndrome the first reversible brain disorder! If you are unable to make it to the walk but still want to help, visit our First Giving Page and make a donation in honor of Annie!

Saturday, September 4, 2010


Lisa Leonard is an amazing artist who creates the most beautiful handmade jewelry. Her creations are wonderfully inspiring so it's only fitting that her latest creation was made for Rett Syndrome, for our girls, for OUR cure! It's called "IMAGINE" , costs only $40.00 plus $7.00 for shipping and ALL proceeds will be donated to Girl Power 2 Cure!

I can imagine a life without rett syndrome!
Leave a message or contact me to order yours!

A Hiking We Will Go!

It really cooled off today - in the 60's! Hard to imagine just a couple days ago we were swimming in 90 degree weather. Today was perfect for a hike! We went to Stoney Creek. The kids loved it! I love how each of their unique personalities shines:

How James hikes

How Gracie hikes

How Annie hikes

Lunch on the trail