I hate this disease

I hate this disease

Posted by in Batten Disease, Life, Rachel

My apologies for not updating this website in months.  I’ve either posted bits and pieces about how things are going on facebook or I have completely fallen off the face of the earth.  Some days I would really like to just disappear and not have to watch as this disease slowly kills my daughter.  So much of who Rachel is gone but I saw a glimpse of my “old” daughter today.

Tami (the lady who worked with Rachel on a 1 to 1 basis in elementary school) stopped by with her beautiful daughter Becca today and Rachel was bringing up things that we had forgotten.  Rachel speech is terrible, her extremities are always freezing yet she lacks the sensation of them being cold and she can barely walk (and for those who are late to this blog she is also completely blind yet born totally healthy).  She has become a danger to herself and those who work with her because she is so unsteady on her feet.  If 190 pounds comes crashing down due to a motor planning or balance faltering moment, she can easily break a leg (and bleed out internally (hypovolemia)).

This is not a pretty picture and I will be completely honest (something I am known for, they tell me):

I have tapped out.

Rachel, my beautiful Rachel, will be starting at a hospital school about 30 minutes from our house in 8 days.  She will live there during the week and come home on the weekends.  I know it won’t be long before the weekend trips home will become too difficult.

Batten disease is so hard on myself and especially my other 3 children. As much as Rachel didn’t ask to be born with a rare, terminal brain disease, my other 3 children didn’t ask for Batten Disease to be front and center in their childhoods.

To listen to their sister scream, yell, demand and generally wreak emotional havoc on their Mom is really hard on them.  A lot of her behaviors that I deal with are well worn grooves that have become deep over time.  Things that Rachel does with me, at home, are behaviors that are much, much less with others (especially new people).  The yelling, the death threats, the hitting, the everything.  Its all a product of a little girl who’s brain is dying.  Things got much worse when she started her period.

I love Rachel so much and wish there was something more that I could do but if you have to pick between your sanity and the emotional health of your children who will hopefully live long happy, healthy lives or a very ill and terminal daughter…

I had to choose.  I HAD TO.

And I have chosen myself and healthy children.

And it kills me.

The school that she is going to be living at is awesome.  She spent last summer there as a day camper and had THE BEST time.

Like legit.  The best time (a few iPhone pics are below).

They have every piece of equipment you can possibly imagine to safely take care of Rachel.  They have activities adapted to kids (under the age of 22) that you have to see to believe..  They swim, they ride horses, they do awesome crafts, they cook, they are a community.  She has fought me on wanting to go, not wanting to leave home but I’ve worked the idea into her head with the help of my Mom.  I know the transition will be hard on her I believe that this is the absolute best place for her to go.

As a Mom you want to protect your kids, see them grow and develop and harvest a passion for life.   I’ve done so much with her yet I wish I could do so much more.  I’ve been told that this transition will be harder on me than on her.  And I believe it.

My other 3 kids need me and Rachel needs to be in a place that can physically manage her and have enough people in rotation to give her the best years of the rest of her life. This is the hardest thing I will ever do.

I wish it didn’t have to be this way.

I love her so much.

Here are some pictures of Rachel taken by her awesome person that was with her during middle school (Gina).  Gina has taken a job at the same school Rachel is moving into and is helping Rachel (and me) bridge over into this new way of life.

It’s 4am. I need sleep. Vacation week is upon me and this is my last week with her.

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Rachel my snowboarder

Posted by in Batten Disease, Life, Rachel

rachel_snowboardFor the 4th day of spirit week at school (Olympic Day), I sent her in as a Gold Medalist Snowboard (complete with board and all). She won a prize and $5 to the book fair.  The smile on her face was priceless!

 

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Fresh bread by Rachel

Posted by in Food, Life, Rachel, School

Annalise and Rachel have done it again. Fresh bread!!!! Best homemade bread I have ever had and the house smells great!

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Rachel bakes!

Posted by in Life, Rachel

With the help of Rachel’s brilliant TVI (Teacher of the Visually Impaired), Rachel is starting to cook in school and bring home delicious treats to bake in our oven.

Our home smells amazing, I am getting fatter and Rachel has a huge self esteem boost! This is week 1: apple pie!

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No road race this year

Posted by in Life

Hello folks. I just wanted to officially announce on Rachel’s website that we won’t be holding the race this year. Between Rachel’s worsening condition and our family dynamic changing I just don’t have the energy or time to invest in the race this year. My number one priority in life is to make sure all 4 of my children are taken care of to my best ability.

I know lots of people are bummed about this but in my heart I know its the right thing to do.

xoxoxo

– Kat

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July 31st Paint for Team Rachel at Sea Dog!

Posted by in Batten Disease, Fundraising, Life, Rachel

paintAn oldie but a goodie, dear friend Geri Calos has organized a night of painting and is donating $5 from each registration to Batten Disease Research!  Please consider signing up if you can, this is located at Sea Dog Brew Pub in Hull, Massachusetts! Click to register!

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What an awesome Race!

What an awesome Race!

Posted by in Batten Disease, Life, road race

Between the 428 registered runners and walkers plus all of the gracious volunteers and Aquarion Water who were passing out reusable and recyclable water bottles, we had over 450 people!  About an hour after the race, costume contest and raffle was over it started to rain.  I couldn’t be more thankful to Hurricane Sandy for holding out and not ruining Rachel’s special day.

We have over $22,000 in the bank that we are going to donate to research once the donations stop flowing in!  Thank you so much to our WONDERFUL friends and family and the community of Hull, Massachusetts for supporting our second race.  It was an incredible day!

HERE ARE THE RACE RESULTS

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The road race is on Sunday!

The road race is on Sunday!

Posted by in Batten Disease, Life

I can’t wait to get ‘er done and hold this road race. Being a Race Director is very much like organizing your own wedding, except in my case, much more sad and depressing. Years from now when she has passed I’ll have all the time in the world to be depressed and lament on how much I miss her but not today. Today calls for action, it calls for determination, it calls for pushing down sad feelings and raising some money for research.

The race is on Sunday 10/28/12 and if you can’t attend but want to contribute there is a donate button on the right hand side of this page (scroll down). Thank you!

Register Online: http://www.active.com/running/hull-ma/team-rachel-race-4-a-cure-2012

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Rachel’s Walking

Posted by in Batten Disease, Life, road race


And a conversation about the road race and her Halloween costume!

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Rachel 12.5 Video taken 10/22/12

Posted by in Batten Disease, Life


Notice her speech and cognitive decline…. Just showing what Batten Disease is currently doing to Rachel.

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