Wednesday, October 31, 2012

Halloween 2012

Another Halloween has come and gone.  I cannot believe we are about to start November.  Our trip to Disneyworld is in 25 days!!  Can't wait.

Finley and Cainan had a Halloween parade today at school and I forgot my camera.  I talked to Finley's aide and she knows someone who took some pictures, so hopefully I will have those to share soon.

4th grade they don't do costumes or parades, I am afraid, so Arlington was out of luck.  They did have crazy hair day and did a fun pumpkin carving activity, so she was satisfied.

Tonight was trick or treating for our town.  I do wish they would hold it on the weekend.  During the daylight.  Ah well.  So at 6pm we set out in the dark and hit up a neighborhood not far from our own.  Our neighborhood is REALLY in the woods, so we don't get trick or treaters, so that is why we leave.

The kids had a great time.  We hit about 20 houses and they got a good bit of loot.  Their favorite though?  A whoopi cushion. 

You read that right.

I am going to find this person and give them my children.  The last thing our son needed was something that makes fart noises.  Because this throws him into a fit of giggles time and time again.  I cannot believe each one of them got one. 

15 years ago today, Mat and I were having our wedding dress rehearsal and dinner.  Where has the time gone.

Enjoy the few pictures I have!

Arlington is ready to go!
 Arlington is pretending to be a zombie:
 Hitting the first house:
 Candy monsters check the windows:
 Time to check the loot:

Tuesday, October 30, 2012


We get asked all the time if we are angry at God about what is happening to Finley.

Our answer is simple.  No.

Are we angry?  Sure.  More sad than angry most days.  More frustrated than angry some days.

But angry at God?  No.

God didn't do this to Finley - genetics did.  God didn't punish us, or give us a challenge, or feel like this is how our family was meant to be.  Genetics did.

God doesn't kill people, give people cancer, cause good or bad.  That is not what I have ever believed.

I believe you make your own destiny.  God is just there to meet you at the end of it.

Monday, October 29, 2012

Making Meals Monday

I am pre-posting through Tuesday because who knows what Sandy the Hurricane is going to do to our power here in Massachusetts.  I feel like we are a bit too far north to have the major effects of the storm, but our power goes out here all the time, so I won't be surprised.

anywho - I realized I forgot to post LAST Monday, so because this week's storm is preventing me from buying extra food, I will post what we had last week.  I know you are excited.  Don't deny it.

Crock Pot Brown Sugar Garlic Chicken

This is the most I have used my crock pot since we got married - these last three weeks.  I do love the thing.

2 1bs. skinless, boneless chicken thighs.
1/2 c. low sodium soy sauce
1/3 c. packed brown sugar
1/4 tsp. garlic powder
1/4 tsp. ground ginger
1 Tbsp. ketchup
1 Tbsp. toasted sesame seeds

Place chicken thighs in the slow cooker. Whisk together remaining ingredients in a bowl and pour over chicken.Cover and cook on low 6 to 8 hours or on high 3 or 4. Serves 4 - 6.


Mini Tacos

My kids ATE THESE UP!!!  I was shocked.  Arlington ate like 6 of them (they are small, but still).  They were super easy and very yummy.

Won Ton wrappers (I bought the pre-cut ones - in the fridge section near the organic food)
Hamburger meat (I bought a pound)
Taco Seasoning
Brown the ground beef. Season with taco seasoning. Place the wontons in a cupcake pan…bake a few minutes on 350 degrees…or until wontons are golden. Fill each cup with meat and top with cheese.
Asian Salmon



  1. Make several shallow slashes in the skinless side of the salmon filets. Place filets skin-side down in a glass baking dish. In a medium bowl, whisk together the olive oil, rice vinegar, soy sauce, brown sugar, garlic, pepper, onion and sesame oil. Pour the liquid over the salmon, cover and refrigerate for 1 to 2 hours.
  2. Preheat the oven to 350 degrees F (175 degrees C). In a medium saucepan combine the rice, water and dill weed. Bring to a boil, then cook over medium low heat until rice is tender and water has been absorbed, about 20 minutes.
  3. Remove cover from salmon, and bake in the marinating dish for about 30 minutes, or until fish can be flaked with a fork. Serve salmon over the rice, and pour sauce over.

Sunday, October 28, 2012

Halloween fun

Yesterday we took the kids to a park here in Massachusetts called Edaville.

We got a groupon for this place, and it looked like fun.   And we (mostly Mat) tend to be cheap, so this screamed us.

For $8/person, we got to go into this park which had rides, pumpkins, candy giveaways, a train ride through cranberry bogs, a museum, and a children's playland.  It was a good way to spend the afternoon.

the kids got to wear their costumes, and were given candy after each ride they rode.  They were stoked.

They had a fun time and I took some pictures of our day.  Enjoy!!

Friday, October 26, 2012

Winding Down

Blindness Awareness month is winding down.  I wanted to post some books that I think are worth reading.

I really enjoy reading books about blind adults and their accomplishments.  It gives me hope for Finley's Future.

So here are some books that I have read.  I hope you out there in blog land will consider reading them as well.  They are all well written, and written from the heart.

Happy Reading!!

Touch the Top of the World - by Erik Weihenmayer.  They also did a movie called Touch the Top of the World as well. 

Eye Envy - by Michael Stone.  We got a personal note from Michael when he sent the book.  Pretty cool.  This one talks about all different types of personal stories of retinal degneration.

Check this Box if you are Blind - by Susan Meyers

This one is a story told by a sister of a blind adult.  He has a few other issues besides Blindness, but it talks about her struggles as a family member of a blind adult who refuses to "be blind".  Her brother also tells his story.

Thunder Dog - by Michael Hingson

Michael's book is my favorite of the ones I have listed so far.  Michael is a blind adult who was in the World Trade Center (working) on the day of 9/11.  The story is about how his guide dog helped him get down from the 78th floor to safety and what it was like being in the towers that day.  Very moving story.

The Forever Fix - by Ricki Lewis

We know Ricki personally.  She is a great person, and a scientist.   If you are looking for something a little more techinical, but still stories of individuals who have helped make gene therapy history, this is a great book.  Loved every page.  Made me cry a few times!  Our RDH12 Fund for Sight is mentioned, and the boy she wrote the book about - Corey Haas - has been CURED of LCA. 

Happy Reading!  Knowledge is power.

Tuesday, October 23, 2012

Two Years

October is such a special mon

Not only is it Blind awareness month, it is also the month we officially became the RDH12 Fund for Sight.

In July, 2010, Mat and I attended our first Lebers Congenital Amaurosis conference.  There, we met 3 other families who have children with RDH12 LCA.  Mat and I pitched our idea of becoming our own foundation.

And those families all said yes.

We got all of our ducks in a row, and with the work of us and those families, October 2010 we signed the papers to become an official foundation.  We had been in talks with Dr. Bennett and knew we needed to raise $70,000 in order for the research to begin.

Things moved quickly after that, and I can't believe it is October 2012.  Two years we have been a foundation.  Two years we have grown from 4 families with 5 children to 15 families with 18 children.  Two years we grew from a $5000 bank account to nearly a $700,000 bank account.


We have raised nearly 3/4 of a million dollars.  I just can't stop saying that because it just seems unreal to me.

And raising that money means on thing.  Finley, and all children with RDH12, have a chance of a life with sight.  A really, really, really good chance.

Our next goal is getting that clinical trial started in 2014.  Two more years into the future.

Imagine what we can do between now and then.

Happy Anniversary RDH12 Fund for Sight.  And happy anniversary to all those families that are helping us make our dreams a reality.

Monday, October 22, 2012

Getting ready for Halloween

I won't lie and tell you that Halloween is one of our favorite holidays.  It is not.  The kids love it, though, and so we do it for them.

I love fall, though, so instead of Halloween decorations, we put up a lot of fall decorations that I can leave up until I decorate for Christmas.  And we do give Thanksgiving a lot of love in this house.

We took our annual trip to the pumpkin patch this past Saturday while my parents were visiting.  We live in the "country" so my mom's comment about it being a "real pumpkin patch" made me laugh.  We had to trample out into the muddy fields, and get the pumpkins from the vines.

The kids each picked a pumpkin, and today we carved them.  I took some pictures so enjoy!

The kids stand next to a huge inflatable pumpkin.  I did not pick their outfits.  I was out with my parents, and Mat brought them to the pumpkin patch as such:

Finley found the dirtiest pumpkin she could:
Cainan picked the first pumpkin he saw, so he was done:
Off the pay for our loot:
Arlington's favorite thing to do is pose.  I think she will take Vanna's place someday:


Cainan is the only one who cooperates with pictures:

Finley thought this should be her pumpkin:
She was so excited to carve her little pumpkin:
Spilling some guts:

The finished project:
Cainan's pumpkin:
Finley's pumpkin:
Arlington's pumpkin.  She wanted it to have glasses: