Sunday Night

Posted by Kat in Batten, Christmas, Kat, Life, Rachel

Just added a Christmas theme to Rachel’s site and updated on her rash. Check that out here.

I am taking the kids to Colorado again soon. It will be a quick trip before Christmas and I’m excited and nervous. Excited to see great friends and family, ecstatic to take the kids to see the Flying W Christmas Round-Up (its on THE list) but a bit nervous about the weather. I’ll definitely come back soon enough to not miss Christmas (KNOCK ON WOOD). If you see a tall geeky looking guy floating around Hull looking lost, buy him a coffee (medium regular please).

This weekend we have the Make A Wish Christmas Party which is being held in the Delta Hangar @ Boston Logan Airport. It will definitely be a once in a lifetime experience.

We’re opening up a second shop on January 1. I have been so busy working on that, staying up extremely late with John. I’ll be glad to get that part over and I’m very excited to see how the new shop plays out in the first couple of months. Lots of good things to come in 2011! Let’s hope they have that drug trial, that Rachel is eligible and they see a slowdown in disease progress. If only…

Kids and Santa 2011

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!).

Love this time of year

Posted by Kat in Batten, Halloween, Rachel

I love the anticipation, the weather, the thrill my kids get when someone asks “So, what are you being for Halloween?” So much excitement and easy happiness that I simply cannot get enough of this time of year.

John is making a cheesecake with Rachel right now (its 8am) and I have plans to make candy apples with them later on. My brother and nephews are coming up and we’re having a small, family Halloween thing on Sunday nigh and a friend is having a birthday party for their freshly minted 8yo daughter.

Life would simply be perfect if it weren’t for… Can’t let myself think like that today because there is nothing I can do. We, as a family, must force ourselves to ignore the disease and enjoy this weekend in spite of the challenges brought to Rachel through her diagnosis.

Happy Halloween, everyone. Do me a favor and tell me what your kids are going to be for Halloween and/or what you’re going to do this weekend to make it amazing.

(Note: If your “amazing” is going to involve baking a cake, I’ll be happy to hand over my address. LOL)

Who would have

Posted by Kat in Batten, Rachel

Who would have, COULD have conjured up this situation. Not only is Rachel ill and declining, we have been told that she is eventually going to die and there is nothing that we can do. No treatment, no trials, no plans of attack or courses of action.

As a parent it is an unimaginable detour in life and I don’t think you can really grasp the what this is like unless you are a Batten Parent or have a child with a similar diagnosis. Its not like she’ll be lucky enough to get hit by a bus at age 20 and get it over with, she gets the nice long road of losing ability after ability until there is nothing left but death.

There are dozens of books out there about a wide range of diseases and illnesses and how to cope. There are local support groups (which I doubt make it all that much easier) for other major diseases.

Don’t get me wrong. I’m THRILLED that there are so few of us out there but I just wanted to say that we are in an unimaginable situation, one that has little comfort and very few answers. A situation that so many people pray for but those prayers are never answered because our children are still dying.

Possibly pessimistic to say this (its definitely realistic) that there is no hope for Rachel given the complexity and location of Juvenile Batten Disease. I block this feeling out and I am living life but sometimes it just KILLS me to say that there is literally nothing that I can do to save my child. I’ll raise money towards research for the rest of my days but nothing being able to save my child, my daughter…. well, it just kills me.

Feel free to read and not reply to this. The traffic on this blog is very high but not reflective in my (much appreciated) comments. I guess if I were in your shoes I wouldn’t know what to say either.

Batten Disease Fundraiser

Posted by Kat in Batten, Halloween, Life

We didn’t get too many good pictures from the “Our Promise to Nicholas” Fundraiser last weekend because it was at night and I was chasing kids but I did get three pictures.

Saylor and Julie decorating pumpkins at the Batten Disease Fundraiser

Rachel decorating pumpkins at the Batten Disease Fundraiser

Boston (Buzz) and London) decorating pumpkins at the Batten Disease Fundraiser

It was freezing!!!!!!

Sunday is for Chocolate

Posted by Kat in Batten, House

Today is Sunday and I just pulled the emergency chocolate handle and my wonderful husband ran to the store for some chocolate. We had some girls spend the night and took them back a little before lunch then we went to my parents place for dinner. We have so much to do on the house before the winter comes, I’m tired from getting up early to do a charity walk and broken hearted watching Rachel struggle. Today has been a harder than normal day for her.

If you pull the emergency chocolate handle in our house you get a bar of chocolate. I am pretty sure there is an emergency nap handle but I’m one of those people who wake up insufferably grouchy if allowed to nap.

Registered a new domain for Rachel today and our future fundraising efforts and am so excited about that! I’ll post more when I’ve got something tangible to show.

Halloween Candle Special

Posted by Kat in Batten

Buy 3 candles and get the 4th free! Use coupon code “freecandle” during checkout to redeem. We’ve upgraded our Pumpkin Pie scent to something more true to the actual pie and we know you’ll be pleased.

Visit www.battencandles.com to order online. Thank you!

All proceeds are donated to the Batten Disease Support & Research Association towards Batten Disease Research.

Batten Candles raises money!

Posted by Kat in Batten

Vanilla (white), Macintosh Apple (red) and Apple Pie (brown). No labels or tags but I wanted to add a new image into this entry.

I’m proud to say that The Good Geeks have footed the bill for the supplies so that Batten Candles could get a running start. We raised $500 in the month of September and are looking to match that in the month of October.

If you would like to buy a candle but are having trouble ordering online (international?) please email me and we can work something out. I can ship USPS or UPS (we have accounts with both).

Please oh please buy a candle and help me alleviate the space issues in my kitchen. www.battencandles.com

Educating people on Batten Disease

Posted by Kat in Batten

I walk a very fine line between concentrating on Rachel / protecting her from information and educating people to raise money for the BDSRA (Batten Disease Support & Research Association). Yesterday, John, Clive and the girls sat at the table for Endless Summer which is a small town “end o summer” festival. On our table were loads of beads and string for kids to come up and string a free bracelet or necklace. Our table was pretty much swarmed the ENTIRE time.

Also on the table were small sampling of the Batten Candles that we’ve just started selling, Batten Candle Business Cards and a sign for donations (taped to my big stock pot (love having multiple uses for the same item)). So the point of this little story is I had several people ask “What is Batten Disease?” and I’ve realized that I need to come up with a better answer. I tried a few different explanations on different people but, really, they walked away horrified. I need to learn how to “dumb it down” so people get the jist of the disease (how it works), that it kills everyone who gets it and the long term symptoms.

So if any of you Batten Parents (or brave people) can give me a one or two liner that I can say to most people and modify when Rachel and her siblings are around, I would REALLY appreciate it. I’ll get an inner forearm tattoo and maybe just show people. Ok, I am mostly joking about that. But I could use some help. Thank you.

Oh. I sold only 7 candles at the festival. 3 were bought by my friend (thank you!!!), 2 by my Mom (thank you!!) and 2 by strangers (thank you!!!!). I think between the candle sales and the bead donations, I’ll be sending the BDSRA about $225 tomorrow.

Home Delivery

Posted by Kat in Batten, Boston, Death, Rachel

I’m struck by how convenient it is to have everything delivered. Amazon, Peapod, Water, Dairy. I have 4 kids and 2 of them generally don’t travel / shop well, I’ve decided to get more things delivered. It probably sounds a little bit extravagant but I will definitely be saving money without having my 4 best friends asking for junk food to be placed in the cart.

Last night at bedtime Rachel informs me that she wants to die (she has said this before). Tonight I tried a totally crazy approach because the regular “of course you don’t want to die, honey” approach doesn’t work with her. I told Rachel I was going to go downstairs and get her a “death pill” that she can swallow and she will die. End of story. Bye Bye. When I came back into the room she wouldn’t let me get near her, and realized that she doesn’t want to die. I am hoping I won’t hear the “I want to die” stuff anytime soon because I really don’t think it is good for her sister and brothers to hear. We also talked abut Batten Disease and how she “got it.”

Before the death pill talk she told me she is going to be dead in 10 years. I told her she was full of crap and she can’t rid herself of her pain in the butt mother that easily. Boston (nearly 4) is very upset at the thought of me or John or anyone dying so I have started to tell him that I am going to live forever. By the time I actually croak he’ll be old enough (knock on wood) to realize that people don’t live forever.

She has been having a great couple of days and even slept in her room by herself last night. I better plan something fun for them to do soon, I think they all need a day trip to look forward to.

Both girls are signed up for girl scouts and Rachel’s meeting has been pushed to “late” so I can attend and leave the kids at home with John. I’m so happy about that.

Life goes by so quickly

Posted by Kat in Batten

I think the longest period of my life was when I was pregnant with Rachel. I had a really hard time (for many reasons) and it felt like I would be pregnant forever. Fast forward 10 years.

School is back in session, work is busy and I’ve started a little candle business to benefit the BDSRA. I’m still waiting on the “NCL” embosser to place a pretty foil seal on the top of the lid. It’s like watching grass grow… waiting…. !

www.battencandles.com

The product images aren’t accurate yet but you won’t be disappointed if you order “sight unseen.”

Batten Candles

Posted by Kat in Batten

I registered the domain name many months ago and have toyed around with it for too long. I’ll be launching the website on September 1st and donating all of the proceeds to Batten Disease Research in hopes of finding a cure for my beautiful girl, Rachel.

Here is the website: http://www.battencandles.com/

Here is the facebook page, please become a fan and invite your friends: http://www.facebook.com/pages/Batten-Candles/109108849146358

I guess I should add this to my bucket list.

Day 10 – Royal Gorge

Posted by Kat in Batten, Bucket List, Colorado, Memories, Vacation

The Drive: Today I drove the kids and I from the northern part of Colorado Springs to Cañon City (and back). We had free tickets through our Make-A-Wish trip and Give Kids the World and I thought it would be a great time for the kids. Yet another Bucket List item got crossed off today!

The Royal Gorge is the proud home of America’s highest suspension bridge and is sure to scare the crap out of you if you, like me, are afraid of falling from heights. We didn’t make it all the way across the bridge because the “swaying” made me really uncomfortable and I didn’t want to scare the kids. I really enjoyed the incline railway (click here to see it) and I took a bunch of pictures of the kids at the bottom, next to the beautiful Arkansas river. There were a lot of stairs all over this place and it became quite difficult to manage for Rachel. I carried her (all 110 pounds) down 2.5 flights of extremely steep stairs to the bottom of the gorge, piggyback style. Worth. Every. Last. Step.

Total Miles: About 100

And tonight I went out to coffee with some great friends. I’m waiting on my girls to email me some of their pictures but I did have one I felt was good enough to post. Here is JJ and Mel (Marie and Susan came too!)!!!!!

Day 8 – Colorado or Bust

Posted by Kat in Batten, Bucket List, Memories, Vacation

The Drive: Hays, KS to Colorado Springs, CO to Pueblo, CO to Colorado Springs, CO.

We drove down to Pueblo to have a BBQ with great friends then headed to our hotel in Colorado Springs late last night. London freaked out at night when a regular lightning storm rolled through, he was so upset! Our hotel is pretty nice and we’re staying here until Wednesday then will head to the campgrounds for a couple of nights.

We had a little time in between getting to Colorado Springs (where we used to live) and having to leave for the bbq in Pueblo so I drove down memory lane. I was taken back at how emotional the ride was… driving past restaurants, parks and other places we used to go when Rachel was much more healthy/normal/sighted than she is now. Thinking back to then makes the losses more obvious and as you can imagine I was pretty upset for a short while.

We also stopped at our old house and dropped in on our neighbor, Jacquie! We haven’t seen her in a few years when she came out to visit us!!! It has definitely been too long since I’ve seen my friends out here.

Total Miles: 399

Day 7 – Our last day in Missouri

Posted by Kat in Batten, Vacation

The Drive: We laid low today because it was pretty hot but we did manage to cook up 2 fresh chickens that we bought yesterday @ Skyview Farms. The birds were fresh and we cooked them “beer can” style. Actually, my brother did all of the hard work…. The rest of us were great at taste testing. I gave them baths, did some laundry and packed. After dinner I drove the kids from Lee’s Summit, MO to Hays, KS so we could get a head start on our drive to Colorado.

Total Miles: 300