As told by Kat

Yogurt Cream Pie

// March 14th, 2010 // No Comments » // Food // Food

1 Graham cracker lined pie dish from supermarket.
2 cartons of strawberry yogurt
1 large carton of cool whip
1 container of strawberries to match yoghurt .

Directions

Remove plastic cover of pie dish and keep handy. Fold all ingredients together and scoop into pie crust Replace plastic cover and freeze. Yummy desert and ready when you need one in a hurry. because it will keep for months. Defrost for 1 hour before ready to serve.

Sunday

// March 14th, 2010 // No Comments » // Kat // Kat

Boston is playing with his toys, Rachel is laying on the couch listening to Toy Story and talking with Boston. Julie and London are in the other room playing “Batman Legos” together. We have a pretty intense storm rolling through and lots of wind blowing around the house. John is sleeping in our bed upstairs and my brother (Adrian) is a floor above him sleeping in our guest bed.

We went to BJs last night and got piles of fruit and veggies which I can’t wait to dig into today. My brother promised to make us breakfast this morning and I’m trying to balance waking him up vs. letting him sleep. Kids will be starving soon. Maybe one of the kiddos will have to go up one flight and make a lot of noise at the bottom of the stairs leading up to the floor he is sleeping on.

I’ve been spending a lot of time thinking about how to handle childcare this summer and what to do. I definitely have several trips planned with this summer, several of them will take us to amusement parks. Sometimes I wish I were a child again so these heavy things wouldn’t be hanging over my head.

Bills. Parent/Teacher Conferences. IEPs. Marriage. Familial Responsibility. Playdates. Volunteering. Childcare. Fundraisers. Boatloads of Laundry. Dishes. Pets. I’d like to escape from reality for just one day and enjoy the freedom of not always having to put on a “happy face”. Trust me, I know that isn’t going to happen but it is certainly nice to daydream….

I forgot to update

// March 5th, 2010 // 2 Comments » // Batten, Rachel // Batten, Rachel

Rachel did not have the surgery yesterday, I cancelled it at the last minute. I couldn’t get over how terrifying the post-operative clean out appointments would be for her. I tried very hard to get her a Valium type medication from both the ENT and our Primary Care but no one felt comfortable prescribing that for her because they are respiratory suppressants.

I am going to push harder for her to use saline and maybe try to pin her down and use a neti pot on her. Increase the humidity in her room and possible get her a hospital type bed so she can sleep reclined. I’m also going to see if I can get our primary care Dr. to prescribe a steroid nasal spray to try and decrease her inflammation that way.

I have no doubt that the end result of the surgery would have improved her breathing but I couldn’t get past how terrified she would be every time I took her back for another “clean-out.”

I feel good about my decision.

My brother comes out to visit next week…. better get the lobster order ready.

I promise a “non Rachel & Batten disease” entry later today.

Depressed

// March 4th, 2010 // 3 Comments » // Batten, Rachel // Batten, Rachel

Rachel seems to be going into a depression. Who wouldn’t be depressed, losing your vision, losing your mind.

I’m looking at old pictures of her, seeing that smile, trying to remember what the BEFORE was like.

This just can’t be real.

Well

// March 2nd, 2010 // 6 Comments » // Batten, Kat // Batten, Kat

I pretty much feel dead inside tonight and I thought I’d be nice and share it all with everyone who reads my blog. John went last week and got tested to make sure he isn’t a carrier of Batten Disease. Those results should be back in another week or 2.

I’m terrified, literally terrified that he will come back as a carrier for JNCL. Its really unlikely, but I have heard of this happening before in a conversation with another Batten Parent who got their diagnosis some years before we did.

My healthy other 3 children can sometimes be what get me out of bed in the morning, knowing that they have this future I must look forward to. I can’t imagine what it is like for the other parents that have multiple children affected. Please don’t ever let me find out what that is like.

I know my mind is getting the best of me tonight. I’m going to bed.

Oh and Rachel is having sinus surgery on Thursday. I haven’t told her. It is going to be hell. A more acutely experienced hell than normal. I’d like to add some curse words at this time but I don’t want to lose my most regular commenter (my Mom). So assume I said them so I can temporarily feel better.

‘Nite

Haven’t been blogging much

// February 21st, 2010 // 1 Comment » // Kat // Kat

Today we had a BBQ at our place with a couple of families. Last night we had 3 kiddos sleep over. Its hard to see Rachel feel left out because of the symptoms of her disease or how kids, to know fault of their own, want to get away from her. I have to find some way to continue to have playdates with other children and take Rachel under my wing so she can be the big sister. She definitely does much better interacting with the adults she meets, probably because they are more understanding. I don’t know. I’m trying to be a good mother to my normal children, sort out this disease in my head and be a good mom to Rachel and protect her from further pain in her life. This is so complicated and sad and I just try and block out the “sad” as much as possible so I can work through the “life” and the “complicated” as fast as my mind will process.

We had a good weekend. The kids loved having friends over and I loved having the cake John bought. I ate way too much of it but I really don’t give a shit. Cake washed down my feelings, kept a smile on Rachel, Julie, London and Boston’s Mommy’s face. And sometimes all they need to see is their Mommy smiling and the world will be okay.

My tooth

// February 20th, 2010 // 1 Comment » // Kat // Kat

I spent the best part of the last 10 days in increasing agony because of what I thought was an infected tooth. The tooth continued to get worse and worse despite the antibiotics I was taking. My dentist tried on two occasions to numb the tooth and had no luck. On Thursday I was in very rough shape, I was having problems sleeping and by the time I saw the endodontist I was shaking, vomiting and in so much pain I thought I could easily (and kind of happily) die! The only thing that helped was swishing cold water on the right side of my mouth.

Turns out my regular dentist and I thought it was THE WRONG TOOTH. This Endodontist was amazing. Numbed me up once we figured out that it was a rear molar (#2) and then did a fantastic root canal (which I fell asleep during 3 times).

My tooth is fixed.

I am in no pain.

I have my life back and my kids have their Mom back. Yay!

Me. In a Bar.

// February 16th, 2010 // No Comments » // Christmas // Christmas

I pulled this off of Barefoot Bob’s facebook page. That’s my brother and his girlfriend, Andrea.

www.barefootbobshull.com

I

// February 11th, 2010 // 1 Comment » // Batten, Kat, Life, Valentines // Batten, Kat, Life, Valentines

I am working on accepting that some children’t won’t grow up and live happily ever after. It is a concept that I live with and I struggle with every single day.

My children don’t see the struggle. This evening for dinner they had their choice of Mommy’s homemade chili or an unlimited supply of cupcakes. 3 / 4 chose cupcakes and my Julie chose both.

Who doesn’t love cupcakes? (Answer: No one I care to know).

Some kids don’t have a “happily ever after.” They just don’t.

Monday Mawn-in

// February 8th, 2010 // 1 Comment » // Kat // Kat

We had a good weekend. Friday I took Julie to Childrens and we got the “all clear” for her heart murmur! I wasn’t worried about it because there are countless people out there walking around with benign murmurs but it was really nice to hear good news.

Friday night Rachel and Boston had a sleepover at Granny’s because Boston is POTTY TRAINED! We promised him a sleepover as a reward and he had THE BEST time. I took advantage of being “half off” from kid duty and took Julie and London to dinner at Barefoot Bobs Friday night and then to the dollar store on Saturday. We managed a playdate and met a HUGE dog called MayDay and ran some errands.

Sunday I took John and the kiddos to the MFA and everyone had a good time. Karen, our tour guide, gave us gloves so we could TOUCH some of the exhibits. AMAZING! Even Boston had a good time.

Friday

// February 5th, 2010 // 2 Comments » // Doctor, Julie, Kat, Life // Doctor, Julie, Kat, Life

Today I am taking Julie to Children’s Hospital to have a recently discovered heart murmur checked out by a cardiologist.

Julie has spent the last week telling everyone she knows and then immediately following it up with “don’t worry, I’m not worried.”

She is such a good girl. I’m looking forward to having a few hours alone with her. Will update later.

Nightmare

// February 2nd, 2010 // 1 Comment » // Kat, Rachel // Kat, Rachel

I refuse to spend my time with her overcome with the overwhelming feelings of living a nightmare.

But we are.

Living a nightmare.

This is so unfair.

She barely got started living.

The nausea / nightmare feeling hasn’t gone away since July and it never, ever will.

EVER

The Bucket List

// January 24th, 2010 // 11 Comments » // Batten, Bucket List, Colorado, Julie, Kat, Life, London, Maine, Rachel // Batten, Bucket List, Colorado, Julie, Kat, Life, London, Maine, Rachel

So if you follow Rachel’s facebook page or know me “in real life” you’ll probably know that the idea of a Bucket List has been the topic of several conversations between me and the kiddos. They don’t understand that this has ANYTHING to do with death so please don’t comment or email me worried that I have a doom and gloom attitude that is negatively affecting them. My positivity is borderline disgusting. LOL

I’ve put “The Bucket List” on the top right of the blog and plan to add many, many more things to the list as the weeks go by. The plan is to take a very long (nearly) cross country trip stretching from Boston up north to Maine and all the way West to Kansas City then Colorado and back. We have free access to several amusement parks through September and I’d like to take advantage of this gift from “Give Kids the World” (the place we stayed in Florida on our Make A Wish trip).

I’m also setting up a FLICKR account to link our pictures from all of these successful missions to show the world that life is too short to wait on the important things in life. Life is too short, people. It’s a fact. Batten Disease is such a shit disease, I refuse to let it steal my Rachel until she has had the chance to use up her body and slides into home base covered in fattening food and exhausted from life.

The more afternoons I can get my children sticky with ice cream this summer, the better! I’ll leave you with a picture from Summer 2009 (the extra 9 year old boy in the picture is my nephew Ryan).

You keep that thumb in the up position, baby. Hold on tight because I’m going to drag you all over this country!!!

For the unaware, “The Bucket List” was a movie that came out in 2007. < link to IMDB>

Pennies for Haiti

// January 24th, 2010 // 1 Comment » // School // School

One of the classes in the kid’s school is organizing the penny collection. I better dig under the couch cushions to fill our sad little bag. LOL

Trip to Maine

// January 18th, 2010 // 2 Comments » // Batten, Boston, Bucket List, John, Julie, Kat, Life, London, Maine, Pictures, Rachel, Vacation // Batten, Boston, Bucket List, John, Julie, Kat, Life, London, Maine, Pictures, Rachel, Vacation

I scooped John and the kids up and took them to Maine for the weekend. We had a great time although I had promised to tray and do some sledding or snow tubing. We met a family of chickens and a herd of alpacas, went swimming and hot tubbing and took the kiddos into a sauna for the first time. We even brought home 3 dozen farm fresh eggs which have already begun the transformation into baked goods.

Here are some of the pictures which I will directly share from facebook (you don’t need a facebook account to see ‘em).

http://www.facebook.com/album.php?aid=374918&id=266424125552

We had THE BEST time! Here is my favorite picture of Rachel from the weekend. Just goes to show that you don’t have to see well to have a fun and full life. Experiences like this are more valuable to Rachel than to a sighted child because of her tactile senses.

I think I think I did a sufficient job at flipping Batten Disease off this weekend. Tomorrow morning we’re going ice skating for an hour. Can’t wait! Gotta get them into a swimming pool more often. They love the water (just like their Momma) and love the hottub (just like their Daddy).