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Home » Life
Aug30 0

Bee sting

Posted by Kat in Life

Today. Bleh. I’m in the midst of organizing a care package of special formula for an online friend who has a son that suffers from Craniosynostosis ( www.craniokids.org ) and while I am in the grocery store sorting that out, Julie gets stung by a bee. The manager was less than helpful, needless to say I wasn’t too happy. Thankfully, she didn’t have an allergic reaction.

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Aug29 1

First official blog post

Posted by Kat in Life

My first post in the new blog. How exciting! The girls are in bed and soundly sleeping.

Today I won worst mother of the year award as it was super hot out today and was rushing to get the girls out of the van at wal*mart and I nailed Rachel in the head with the sliding door on the van.

I saw it happening. I feel terrible. She has been over it since I bought her a lippy (lip gloss) but I am sick to my stomach as I saw it happening (as the door was sliding towards her head and it was out of my control).

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Aug03 0

NH

Posted by Kat in Life

Today we got back from New Hampshire. Left late yesterday mainly so that we would be out of the house so John could sleep last night off. He is working overnights this work so the store can get some “Plan-A-Grams” sorted out. Totally sucks for us. He managed to catch her T-Ball game tonight after we got home and all was well with the world. Rachel is staying the night at Granny’s with my neice Sarah and no doubt they are having a blast. I put Julie to bed about an hour ago. While I know that my house could use some moderate housekeeping, I am too exhausted and will be heading to bed. Zzzzzzzzz.

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Jul22 0

Minivan!

Posted by Kat in Life

Picked up the minvan today (2003 Caravan) with the girls as John had to work…. I am absoultely in LOVE with it. Gone are the days of being crammed into a small car. I’ve always prided myself on tiny cars and fitting everything into a small space but I have to say that I will *NEVER* go back. It’s comfortable and convenient and “high-up” like my Wrangler was… I love it!

Tonight we had T-Ball and after having an entire inning of Rachel crying everytime the other team hit the ball and one of her other team mates getting the ball, I went out there and coached her. The *VERY* last pitch was the only one that went our way and I practically threw her on it so she could get it… she was positively BEAMING that she got the ball!

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Jul21 0

In search of

Posted by Kat in Life

Finally bit the bullet and went to look for a minivan. I found one online last night that I am absolutely in love with. We have agreed to buy it and I go back with the girls tomorrow to pick it up. We are trading John’s Hyundai in for the Dodge Caravan and he will be taking my VW Beetle. So excited! I love this thing!!

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Jul12 Comments Off

the fair

Posted by Kat in Life

July 12, 2004 Today was a great day. Took the girls to the Hingham Police Fair today, it was absolutely amazing! I can’t believe how many things they had going on at once, I have *never* been to a town safety fair like that. I was a little bummed that we had to leave when we did because they were going to fill the field with foam for the kids but Rachel’s friend Max had a birthday party. Rachel had a fantastic day! Debbie, Sean and Samantha came over for the first time tonight and we had pizza, I really enjoyed their company. I can’t wait to see them married and fully settled, they seem like a great family. Exhausted. John had three clients today (on his day off) and missed a good chunk of todays fun but it was all worth it. When I first met him nearly 3 years ago he was a very nice guy. In these last three years he has truly transformed to a very good MAN.

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Jul04 0

Zzzzzzzz

Posted by Kat in Life

Didn’t do much today. I (Kate) slept for nearly four hours during the day today to try and recover from my Gallbladder surgery on Friday. Bummed that I didn’t make it to New Hampshire to hang out with Shawna, Lisa, Tanya and co but apparently John pulled rank and said I wasn’t well enough to go.

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Nov15 0

Our Wedding Ceremony

Posted by Kat in Life

Introduction to the Ceremony

Greetings Friends and Family
We are gathered here today
Before God
And in the face of this company,
To join together John and Kathryn in holy matrimony;
It is not to be
Entered into unadvisedly,
Or lightly,
But reverently and soberly.
Into this Holy Estate,
These two persons present
Come now to be joined.
If any one can show just cause
Why they may not be lawfully
Joined together, let them
Speak now or forever hold their peace.

I require, and charge you both,
That if either of you know any
Impediment, why you may not
Be lawfully joined together in
matrimony, you confess it now.

Please welcome Kathryns Grandmother in a Bible Reading
Wedding Prayer :: 1 Corinthians 13 4-7

“Love is patient, Love is kind
No eyes of envy, true love is blind
Love is humble, it knows no pride
No selfish motives hidden inside
Love is gentle, makes no demands
Despite all wrong, true love still stands
Love is holy, love is pure
It lasts forever, it will endure

Love is loyal, believes the best
It loves the truth, love stands the test
Love is GOD sent in His Son
Love forgives all we have done

In this world where hatred seems to grow
True love goes against the flow
And becomes so hard to show

In this world where push turns into shove
We have strength to rise above
Through the power of His love
Lord, we need to know the power of Your love

Wedding Ceremony

This is the day you have chosen to become husband and wife.
We are here, not only to witness your commitment to each other,
but also to wish you every happiness in your future life together.
Within its framework of commitment, and loyalty,
marriage enables the establishment of a home,
where through trust,—– patience and respect,
the love and affection which you have for each other
may develop into a deep and lasting relationship.
We, who are witnessing your marriage,
hope that despite the stresses inevitable in any life,
your Love, Respect for each other,
your trust and understanding of each other will increase
your contentment and heighten your joy in living.

Please welcome Bill Blais for an Irish Blessing.

Irish Wedding Blessing
May the raindrops fall lightly on your brow
May the soft winds freshen your spirit
May the sunshine brighten your heart
May the burdens of the day rest lightly upon you
And may God enfold you in the mantle of His love.

May the road rise to meet you
May the wind be always at your back
May the sun shine warm upon your face
and the rain fall soft upon your fields
And until we meet again my friend
May God hold you in the hollow (palm) of his hand

May God be with you and bless you
May you see your children’s children
May you be poor in misfortunes and rich in Blessings
May you know nothing but happiness
from this day forward

But rich or poor, quick or slow,
May you know nothing but happiness
From this day forward.
May the joys of today
Be those of tomorrow.

The Vows

Will you please, as an expression that your hearts are joined together in love, now join your hands.

Johns Personalized Vow

John: Kate,
I choose you, and Rachel, to be my family.
I promise to honour & respect you, and to provide for you to the best of my ability.
I promise to make our home a haven where trust, love, kindness, and laughter are abundant.
I make these promises to you, lovingly, and freely, and vow to honour them all the days of my life.

John, do you take Kathryn to be your lawfully wedded wife, to live together in marriage. Do you promise to love her, comfort her, honor and keep her For better or worse, for richer or poorer, in sickness and health And forsaking all others, be faithful only to her. So long as you both shall live?

John: I do

Kates Personalized Vow

Kate: John
I cannot promise to always be rational.
I cannot promise to always be strong.
I cannot promise to be faultless.
I cannot promise to always be the same.
I cannot promise not to hurt your feelings sometimes.

I promise to share my thoughts with you.
I promise to be supportive of you.
I promise to be honest with you.
I promise to help you achieve your goals.
I promise to understand you.
I promise to love you

Kathryn, do you take John to be your lawfully wedded husband, to live together in marriage. Do you promise to love him, comfort him, honor and keep him For better or worse, for richer or poorer, in sickness and health And forsaking all others, be faithful only to him. So long as you both shall live?

Kathryn: I do

Exchange of the Rings

These rings are a symbol of the unbroken circle of love. Love freely given has no beginning and no end, no giver and no receiver for each is the giver and each is the receiver. May these rings always remind you of the vows you have taken.

John: Kate, with this ring, I thee wed. Take it and wear it as a symbol of all we shall share.

Kathryn: John, with this ring, I thee wed. Take it and wear it as a symbol of all we shall share.

Declaration of Marriage

Forasmuch as John and Kathryn have pledged to each other their fidelity, lifelong commitment, and love in the sight of God and their friends and family, I therefore, by virtue of the authority vested in me by the state of Massachusetts, pronounce them to be husband and wife.

Those whom God has joined together let no one put asunder.

John, You may now kiss your bride!

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Sep26 0

8 days

Posted by Kat in Life

You have been alive for 8 amazing days. This morning, I began the day with a walk from our house to Granny and Granddads new house on N. Truro street. You weren’t that thrilled with the walk and had me hold you with on hand and push the stroller with the other. Quite tiresome, but worth it. Your Father had the night off tonight and we ended up cleaning the house, again! There is an amazing phenomenon at Straights Pond – about 20 pairs of swans have joined forces and have decided to call him pond home for the time being. It’s both amazing and beautiful, just like you. I often think of the swans when I look at you. What is not so wonderful, yet amazing is that you (in 8 days) have trained yourself to sleep all day and stay awake for most of the night. Somewhat of an infant induced insomnia/exhaustion has set in. I have always been an insomniac, but once I fall asleep I am a heavy sleeper. I love my sleep, but I love you more. Your tiny fingers are just like mine, only smaller.

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Sep17 0

You’re here!

Posted by Kat in Life

Rachel! You have arrived. At 9:48am you entered the world at 6lbs, 3oz and 20 inches long. Dr. Iannessa wasn’t there to play catch but Dr. Mackey sure was. He did a great job…. a little uncomfortable because I had never met him before and he is young/attractive. I know they say when it comes down to it and you’re delivering a child… that modesty goes out the window. That was not the case. :) Some forceps and a couple of stitches later you entered the world with a cry. It was the MOST AMAZING FEELING OF MY LIFE!!!! I still can’t get over that I am now holding the little person who was in me, kicking me. I have just watched you for the last 2 days, mesmerized!!! Just to watch you move and kick – I felt that! You are precious. I hope one day you have your own child and you get to experience this. XOXOXOXO

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Sep02 0

Autum notes

Posted by Kat in Life

Did you know that I don’t like to write with black ink? I have put off writing important things (including this journal) due to my lack of a non-black pen around. I have to go sit for Thomas (4) in a few hours. He is very well behaved but I am not looking forward to it. I never look forward to it. Too many things to do, you know? You have become extremely vocal as of last night. The sounds you come up with are absolutely beautiful!!! It made the 4am wakeup call more lovely. You love your 11pm feedings… cereal, maybe bananas and some formula. You re a consistent “through the night” sleeper. Back from baby-sitting…. Not sure if I could handle having two children, that was a lot of work. I definitely would have a hard time working from home if there were two of you. You are really teething and in so much pain. I am just glad that you’re alive and that you can feel the pain. It has been really started to cool down this week, I love this weather. You’re wearing a onesie and a full jumpsuit in your crib with a comforter covering you. All of the kids are back in school, the tourists have gone home…. the soda is cold and business is great. What could be better? Tonya being healthy. If I could make one change, I would restore the health of your thoughtful, loving, strong, beautiful, intelligent, and rugged Aunt. It makes me sad that there are so many “bad” people in this world and that Tonya is so “good” but has Unknown Primary Cancer that is in several parts of her body. I pray everyday that she beats it. If you are anything like her when you grow up, you will intensely love animals.

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Aug24 0

Happy Birthday!

Posted by Kat in Life

It’s raining out. I love this time of year. Every year around my birthday it cools down and the rainy season rolls on in…. followed by the cool, crisp air of autumn apple picking, pumpkin carving, and Halloween. Then it gets colder.. hot chocolate, Christmas Trees, Presents, Parties….. The cusp of Autumn is upon us. Great time for clean slates and new beginnings… new school year, new pencils. Lots of stuff I love about this time of year. So exciting. I wonder what time of year will be your favorite. Well Miss Rachel, I am heading to bed. This *22* year old needs her sleep. :-)

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Aug23 0

Almost my bday

Posted by Kat in Life

Well, it’s about 30 minutes until my first Birthday as a Mum. I love you. This year will be a very frugal birthday, but I have you and that is all that matters. You’re sitting across from me fast asleep. How sweet you are, I love you dear, sweet, baby Rachel. I only hope that you realize that I make every decision based upon your best interests. By the way… while I think about this… no more peeing on my hands. That was gross. You’re awake! Ja’nelle still hasn’t had the baby and I think they still don’t have a name. Just wanted to let you know how much I love you and thank you for sharing my birthday with me.

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Aug18 Comments Off

3 Months!!

Posted by Kat in Life

Today is your 3 month Birthday!!! You now smile ALL the time and can recognize me, your Father and Grandparents. You LOVE eating cereal, banana and are still in size one diapers. I haven’t given you a bathtub since the day your cord fell off, you really enjoy coming into the shower with me. Last week we went to see Toni, Paul and Adam. You enjoyed interacting with Adam, he is a handsome baby. At 2 months you weighed 10.5lbs. You have got to be 2lbs heavier than that now. I have a TON of size 1 diapers, Toni gave me a bunch as Adam has already grown into size 2′s. You have a mild rash on your girl part so I am changing you a ton. Ja’nelle is due today, they still haven’t chosen a name for him…. they are considering Ryan and Tyler. Right now you are swinging in your baby swing and are as happy as can be. Adrian, Linda, Sarah and Haley are all living up the street until they find a house. Tonya is having radiation on her brain to try and get rid of the cancer. Clive just got a new job and will hopefully be moving with the animals and Tonya to New England. I am having a barbecue next weekend for all of the women I met on Parentsplace. That is all I really have to say for now. I regret that I don’t write more often…. I’ve just been busy and occupied. I love you.

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Jul23 0

Through the night!

Posted by Kat in Life

Rachel slept through the night for the first time. (2 months 5 days)

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Road Trip for Research!

On June 14th, 2012 Rachel (12), Julie (8), London (6) and Boston (5) and I will be headed from Hull MA to Eureka CA and up to Seattle and back to fufill one of our bucket list items. Along the trip we'll hand out flyers and awareness bracelets and try to raise $7206 for Batten Disease Research, $1 per mile. If you would like to assist us in our goal, please click on the link below and donate through paypal.

GOAL: $7206 ($1 per mile)
$226 Raised to date


Tax ID# 45-3078380

Bucket List

Eastcoast / Westcoast Road Trip!
Visit Redwood Forest
Swim in the Pacific Ocean
Meet Izzy and Elly
See Seattle Fish Market
Organize 2nd Batten Road Race
Ride a Camel
Go to England
Visit Niagra Falls
Go to Mall of America
See the Flying W Christmas Show
Be in JNCL Cellcept Drug Trial
Go Kayaking
Spend the weekend on a boat
Organize a Batten Road Race
Go Geocaching
Go to LegoLand
Drive an amphibious vehicle
Ride Codzilla in Boston Harbor
See a N.E. Patriots Game
Go to Santa's Workshop (CO)
Milk a Cow
Go Camping
Go Jet Skiing
Visit top of Pikes Peak
Visit the Royal Gorge
Go on the Cog Railway
Go to Disney World
Visit an Alpaca Farm
Collect Fresh Eggs
Own a Home again
Cruise to Bermuda
Go to Canobie Lake Park
Go Fishing (Rachel)
Ride a Train
Go Lobstering
Go to Santa's Village (NH)
Go to Storyland
Feed Santa's Reindeers

Things that are in progress are in have a * before it. If you think you might be able to help us experience another item on the list, please email me directly. Thank you.

2012 Road Race

2nd Team Rachel Road Race

Date: Sunday, October 28th
Time: 9:00am Race Start
Location: Hull High School
180 Main Street
Hull MA 02045
Stay tuned for more information!
Proceeds will be donated to Batten Disease Research at Massachusetts General Hospital.

2011 ROAD RACE

Goal: $10,000
Raised: $25,000

$250% of goal!
435 Participants

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About Me

TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives. Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old. Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.

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