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.Read More
Thank you to the DiVito Realty family for becoming our second sponsor for the road race. We so much appreciate the support of our cause and of our daughter Rachel.
DiVito Realty: www.divitorealty.comRead More
Rachel’s parents own The Good Geeks and they have paying for all of the race day t-shirts that each runner, walker or volunteer will receive!
The Good Geeks: www.thegoodgeeks.comRead More
Many thanks to my Mom who created a new facebook event for our RACE FOR A CURE!
Please RSVP and share the event with your friends. Together we CAN raise $10,000!Read More
Team Rachel is proud to announce that the Greater Boston Running Co has agreed to sponsor our first ever 4 mile road race (2 mile walk). They will be donating race day bags, race bibs and 2 gift certificates for our raffle or race prizes. We are thrilled that they stepped forward to help us.
Greater Boston Running Company: www.greaterbostonrunningcompany.comRead More
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.Read More
I have wanted to take the kids on codzilla for about 2 years. Maybe 1 year. I forget.
We are going on Codzilla this sunday and will then be able to cross another item off our bucket list. So excited!
Here is codzilla info: http://www.bostonharborcruises.com/codzilla/Read More
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.
I came across a guide I hadn’t seen before detailing what its like to be a child with dementia. This one was written by a Niemann Pick Group (Niemann Pick is like Batten Disease except those affected kids can’t metabolize cholesterol) but is fully applicable to Batten Disease and the kids who are affected.
Many “bad” behaviors from dementia have trickled down to my younger children and there is no guide to fixing those… Hopefully as the little ones get older and mature certain behaviors and attention seeking issues will sort themselves out. Their big sister, their role model is losing her mind and we can’t stop it.
Here is the dementia guide that the BDSRA put out. <link to guide>Read More