Family, Life, Race Update

Posted by Kat in Batten Disease, Blog, Boston, Bucket List, John, Julie, Kat, Life, Rachel, Research

We are all back to school doing full-day classes. Rachel has settled into 5th Grade, Julie is loving 2nd grade, London can’t wait to go to Kindergarten everyday and Boston is enjoying going to full-day Montessori. Boston has been acting up A LOT so I am trying to find ways to give him 1:1 time and so far I’ve been taking him on morning bike rides before school. This morning we went to the beach because we had a few minutes to spare and looked for shells.

On my walk home from Julie and London’s bus stop I was lamenting to myself that getting all 4 kids ready for full-day school in the morning (NOW) is easier than it was when it was only Rachel who was going to school.  I can only imagine what the neighbors thought while Rachel screamed and cried and yelled and hit us while we got her dressed in the morning and that is pale in comparison to the intense sensory agony she was in while we brushed her hair, her teeth or put socks on her.  I am so grateful for medication and how it has given us intermittent good times with her at home and substantial amounts of good time at school, and with Granny or one on one with someone.

Tomorrow we are running our annual jewelry table for Endless Summer (www.endlesssummerhull.com) with a twist because this year we are seeking runners, walkers, volunteers and business sponsors as we are raising money for Juvenile Batten Disease.  The race planning is going very well and we are getting a lot of buzz around our town through all 3 schools, loads of residents and our customers.  I am very excited about this race, c’mon October 23rd!

We have put Rachel’s name in the hat for the trial and are waiting to hear as to when she can start  I have filled out all of the paperwork, caught her up on vaccinations and have gotten permission from Dr Sims (Rachel’s Neuro at Mass General) to be her local doctor.

Things we have planned?  Outside of the upcoming road race I have two pretty giant things in store for my kids.  A day or so after Christmas we are driving down to florida and renting a house with a pool and will spend our Winter break in the warmth.  :)

Next summer?  A few days after school lets out I am taking a complete cross country road trip with my cherubs going from Boston to California and back.  We are also planning to drive north for a few days and spend time with James and his family (James is Rachel’s biological father).  I know people have asked me why I would bother doing that as James has been out of her life (by his choice) for many years but really this isn’t about me or about him.  This is about the kids.  I think it will be great for my 4 children to meet their twin sisters.  Technically they are only Rachel’s half sisters but my motto has always been “You can’t have enough people love your kid.”  (Or in my case, kids).  I have a lot of planning to do for that but the details are all on hold until after this road race.

London especially wants to dip his toes in the Pacific ocean, his life’s dream is to live in California and drive a minivan.  I figure a good test drive through Cali could help him to see if this is something he wants to aspire to do or not.  Yeah, he is barely 6 but he talks about it everyday.

Life is too short to waste it waiting for things to happen so you can move forward.  Move forward, move things into place.  Make things happen.  Your life could be over tomorrow.  Live without a lot of regrets.  Live enthusiastically.  IF we only know, truly, how many people in this world, in America, in your own town, maybe even on your street, who are fighting for their lives…  Just thinking about it is very humbling to me.

- With love, Kat.

And school begins…

Posted by Kat in Julie, Life, London, Rachel, School

Rachel is in 5th, Julie is in 2nd and London is in Kindergarten!!!!!!

Today is a great day!

Posted by Kat in Batten Disease, Birthday, Fundraiser, Halloween, Julie, Kat, Life, London, Rachel

Today is my 33rd birthday so I imagine my Mom is once again thrilled that she is no longer pregnant with me (I am mostly joking lol).  I was born over 3 weeks late and weighed over 10 pounds so I really can’t blame her.  Thank  you Mom, aka Eileen, for giving me life and putting up with my crap, foul language and obnoxiousness all of these years.  :)

I also want to thank my Mom for being the first to sign-up for Rachel’s road race which is in 2 months.  I can’t say I was outright nervous that no one had signed up because I know people are really busy with “back to school” whether it is their child or grandchild headed back in the next few weeks.  I guess my Mom had mental telepathy and for that I am so grateful.  We have one official walker!!!!

This week I am finalizing the Sponsor information for businesses who can give over and beyond the registration fee as well as walkers and runners who will ask their friends to donate on their behalf.  Plus the prizes and raffle items.  I have never done this before and got some really great ideas at the Batten Disease Golf Tournament I took John and the girls to yesterday.  They raised about $30,000!!!!  My goal is to raise $10,000 this year for our walk/run/raffle.

Have a great day today if you read this entry!!!

Photo: Rachel (6), Kat (?) and Julie (2.5).  Not really easily seen is London who was 8 days past his due date and born the next day.  We were at a pumpkin patch in Colorado.

Xanax?

Posted by Kat in Batten Disease, Boston, Julie, London, Medical, Rachel

Taking Rachel into her Primary Care doctor this morning to talk about Xanax as a possible med to help Rachel with her anxiety and obsessive thoughts. Something to help her like Risperdal did but without the weight gain (WOW!).

This weekend I think we should take the kids to the beach. We live a block away from it but we never go because I hate the texture of the sand. Most people avoid swimming situations because they don’t like the way they look in a swim suit but frankly I don’t care about that. Its the sand that keeps me away.

12 more days unti school starts for Rachel and Julie!!!! 13 days for London and and 20 for Boston. London should get “THE” letter in the mail this week to let him know who he has for his Kindergarten teacher. So exciting!

Picture:  This was taken earlier in the summer when the pool looked like pea soup.  Nothing can keep Juliebean out of the water.

Meet Juliebean

Posted by Kat in Julie, Life

Meet Julie. She is a 7 year old 30 year old who is tremendously helpful and caring!

Nearly 2 years

Posted by Kat in Batten Disease, Boston, John, Julie, Kat, Life, London, Rachel

Tomorrow marks the 2 anniversary of Rachel being officially diagnosed.  Its been a hard 2 years but I’ve worked my ass off to make it as fun and as successful as this time could possibly be.  There are huge marks of decline in her but at the same time we can’t ignore her infectious laugh, her record setting appetite, her love for her Granny and dozens of other things that prove she has a good quality to her life.  That is all that this is about now: Quality of Life.

I have this ridiculously high in calorie cake that I plan to make tomorrow to mark the occasion.  (Chocolate Snowball Cake).  If I die from clogging my arteries with this delicious cake please note that I died happy. 

Here is a picture I took of  my A-Team last week which visiting our new shop in Weymouth (they never look at the camera at the same time, lol):

Rachel, Julie, London and Boston (July 2011)

This is a picture of the wonderful person (Sue) who took my husband and kids out on her boat last week.  We went to fascination and she won a WHEEL SPIN!!!  She might kill me for putting this picture on the blog but I wanted to give her an honorable mention because there are very few people in the world who are so giving and I really appreciate her in our lives.

Sue at Fascination

I took Rachel and the kids to the Hull Fire Station for their safety day.   Her siblings climbed up onto the Jetski (on trailer) and where they go, Rachel has to go  (my rule lol) so I heaved her up:

Rachel on the Hull Fire Jet Ski

Have a good day if you are reading this.  I’ll post another entry with more pictures tomorrow.

4/1/2011

Posted by Kat in Boston, John, Julie, Kat, Life, London, Rachel

Nothing too special to write today. I’ve promised John not to “get him” on April Fools Day today. Last year I had him believing the trash company wrote us a nasty letter and fired us because of the volume of our weekly garbage output. He was fuming and about to call the trash company and then I said to him “April Fools.” I’m not sure he has forgiven me for that. LOL

I started going back to the gym and have done a few Yoga classes (free child care, woohoo!) and its good to work out again but the kid free time is priceless.

Rachel and Julie have a father-daughter dance tonight for girl scouts, and Julie and London have Art class after school. I have a 10am yoga class today (the boys are going to childcare at the Gym) and all I want to do is stay home and watch the drizzle from my couch with a cup of coffee in hand.

Happy 7th Birthday Julie!!!!!!

Posted by Kat in Birthday, Julie

Happy 7th Birthday Julie

What do people live for?

Posted by Kat in Boston, Bucket List, John, Julie, Kat, Life, London, Rachel

I took Rachel to her second appointment with her Pediatric Rheumatologist and he confirmed that she does have Lupus, also known as Systemic Lupus Erthymisomethingerother. How does a beautiful and innocent kid end up getting an early death sentence and Lupus? It’s total bullshit and rather than be angry this fine evening I would like to pose a question to those folks that still read my infrequently updated blog.

What do you live for?

Last year I spent many weeks living to cross off items on the bucket list, taking my kids to multiple states and experiencing all sorts of awesome things. Already this year I have driven my kids down to Florida and back and watched the miracle of Rachel and London learn how to swim. I have personally been living to make sure Rachel, Julie, London and Boston get to experience countless amazing days while Rachel can.

This year I want to continue this mission but maybe travel a little less (my new Jeep is not so good with gas mileage). Planning on sharpening our camping skills, maybe get a little sailboat. I’m looking for more adventuring ideas, things to enjoy, experience, to LIVE for.

So… What do you live for?

Took this picture of Rachel today. We clocked 100 miles with the Jeep’s top down today. It was 65 degrees in Massachusetts today!

Julie rides the Fire Truck

Posted by Kat in Julie, School

Julie won the first grade Read a Thon prize of riding the fire truck to school! Here is Julie riding in the truck!

My “old dog” learned a new party trick

Posted by Kat in Batten Disease, Julie, London, Rachel, Vacation

When I took the kids down to Florida last month they had unlimited access to a swimming pool. During that time Julie reproved that she is a great swimmer, London learned how to swim and dive (!) and Rachel “let go” and learned how to swim! Here is a video of Rachel swimming!

Excuse the weird formatting, I took the video with my phone.

January

Posted by Kat in Batten Disease, Blog, Bucket List, Julie, Kat, Life, London, Medical, Memories, Rachel

Can’t believe it is January already. Julie started back to school a few weeks ago and is enjoying her social time, she is pretty overwhelmed with all of the stimulation but loves it overall. London is starting preschool next week in the afternoons and they are all going to Art Class again starting later this week. Rachel was kind of upset about not going but I said she could bring some art supplies to Granny’s house as she’ll be at my Mom’s for her regular Friday night “date.”

Rachel is about 95% blind. The other five includes a spec of vision (literally a spec) out of the corner of at least one eye and she still has “light / dark perception.” She is handling it as well as can be expected. I try to get her to talk about it and how she feels and if she has any questions about her blindness and for the most part she is as happy as can be expected (and then some). She and I are going to the University of Rochester next week for a “check in” to see how she is progressing as they are studying Juvenile Batten Disease. My fingers are crossed that her disease progression is considered slow for her age.

The day after we get back from NY I am driving down the kids to Florida to stay the week in a house I booked months ago with a heated pool in the back porch. One day at Disney (can’t believe how expensive it is) and another day at a petting zoo. Our Make a Wish trip was amazing yet difficult for Rachel (and us) because she wasn’t on the right medication and it was so hot. My brother, nephews and my other brother and his girlfriend (Andrea) are all planning on coming down during the week.

Get out your fine china (I am so not fancy enough to ever own any). Wear your best jewelry (I made Julie wear her new princess earrings today despite her fear she might lose them) and treat this day like its your last on earth. Some days are harder than others but you should try every single day.

Busy week

Posted by Kat in Batten, Julie, Rachel

Lots of good stuff going on with work, Rachel changed to a new medicine and London was covered in spots (the chicken pox). Rachel has lost about 6lbs (I’ve found at least that much) and we ended this week with a ham dinner with my parents and brother.

Rachel watched “Ice Princess” tonight which is a movie that she used to watch A LOT but hasn’t seen it since going blind. She kept on saying things and asking questions that only a sighted person would be able to ask / say but it was obvious that she was recalling the visual memories of watching the movie years ago while listening as a newly minted blind person. I can’t describe the complexity of how that broke my heart in at least 3 different ways.

You may not know that I often refer to myself as “The Iron Maiden” because I “never” cry (it is a rare event) but thinking about what it must be like for her to not be able to see, how confusing things are for her. It sends me over the EDGE and my iron clad tear ducts fly open.

Tomorrow I am taking the girls for haircuts. Julie says she doesn’t want hers cut but will come along for the ride. Rachel needs her bangs trimmed. I believe Julie is declining the hair cut because she is obsessed with becoming a princess and I am guessing that she thinks all princesses have long hair. I should show her pictures of Lady Di and cross my fingers that she agrees to getting the wedge cut again (she looked so cute in that!).

The First Post

Posted by Kat in Batten Disease, Blog, Boston, Fundraising, Julie, London, Rachel

I’ve stayed up until nearly 2am to put this blog together and make it look good enough to put Rachel’s name on it.  It’s kind of hard for me to stay on top of everything when the children are awake, especially when Rach is home.

Not everyone who will read this knows about us so I’ll quickly explain that we are a family of 6 that lives in the Boston suburbs with 4 great kids.  Rachel is 10 and has (suffers from (I hate that term))  Juvenile Batten Disease which is very rare and you can either read more about it here or go directly to www.bdsra.org and the Batten Disease Support & Research Association will be able to educate you better than I can.  Our other children are Julie (6), London (5) and Boston (4) and they are truly the best kids (wish the food bill were a little cheaper but other than that… lol).

In the last year I (Rachel’s Mom) have been working on getting Rachel’s educational and medical needs met and more recently have done some fund-raising work.  We hosted a Lemonade stand on the fourth of July, had a table at Endless Summer and have started selling candles at Batten Candles.  The next major fund-raiser we are working on is a 5k Race / Walk in our beautiful seaside Hull, Massachusetts town (May 2011).

If you have any fund-raising ideas for Batten Disease Research, please contact us (and thank you)!

Camping Test Run

Posted by Kat in Bucket List, Julie, Memories, Rachel

The night before last I put up our new tent so the kids and I could have a dry run for camping. John’s back has been bothering him so we gave him a pass to sleep indoors (the house was 10 feet from our camp site). When me and the kids finally got settled, Rachel decided she had her fill and we got her tucked into bed. London, Boston, Julie and I all survived the dry run! I think if the weather is a little cooler the next time we try and I get Rachel a sleeping mat or something to cushion her, she will stay with us the whole night! Here are some pictures, the last one is my cot (yes, I cheated)….

This is another item on our bucket list and we’re in progress. Rachel has to complete a night with us, preferably at a real camp site and then we can cross it off the list! I’ll probably stop at a KOA site on the way home on our road trip.

Let the record state that it is a royal pain in the ass for one adult to try and put up a tent without the help of another adult. I was ready to pass out and would not have been able to put it up without the help of Rachel (who is very strong) and Julie. Thank you girls!