Tag: christmas

Julie had been wanting to try making vegan cupcakes but hadn’t gotten around to it, mainly because she was waiting on me to buy the ingredients. I took a stab at the cake while they were in their homeschooling enrichment classes today and this is quite good. I doubled the recipe and bought frosting off the shelf. I made this into cupcakes, paper lined and baked each pan of 12 at 350 degrees for 23 minutes. Since we are a mile above sea level you may need to adjust the time.

Ingredients

1 1/2 cups all-purpose flour (I added a few extra TBS to thicken the mixture up)

1 cup sugar (I used evaporated cane sugar)

1/4 cup cocoa powder

1 teaspoon baking soda

1/2 teaspoon salt

1/3 cup vegetable oil

1 teaspoon vanilla extract

1 teaspoon distilled white vinegar

1 cup water

Directions

Preheat oven to 350 degrees F (175 degrees C). Lightly grease one 9×5 inch loaf pan.

Sift together the flour, sugar, cocoa, baking soda and salt. Add the oil, vanilla, vinegar and water. Mix together until smooth.

Pour into prepared pan and bake at 350 degrees F (175 degrees C) for 45 minutes. Remove from oven and allow to cool.

Hope the kids like them. I’m going to bring each child 2 cupcakes at pick-up. Letting them eat in the jeep is such a bad idea.

Rachel would have loved these so much.

We do lots of different tradition’s for Christmas and here are them. The most common one is us opening one present on Christmas Eve but on Christmas Eve or Christmas day we have Chinese food at a restaurant and nobody does that in the US. this year we have a plan and it is We open our present’s with our family. Then, we are going to my mom’s friend house. Finally, we are going home and having Chinese food. sorry for this small blog and I hope you all enjoy

This past weekend I brought the 4 kids plus their father who just drove out here from Boston to the Breakfast with Santa put on by Rachel’s Special needs school (Fletcher Miller in Lakewood, Colorado). It was a great time, huge value for the money and a nice, inclusive environment for kids with special needs and their families.

Here are some pictures I took of my kiddos and a few of people that love Rachel (Hi Kristin and Becca).

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Julie, Christmas at Fletcher Miller Breakfast with Santa 2014

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I really love christmas it is just because it is a time to have fun with relatives, and presents. Here are 5 things I want for christmas and why.

1. a Lava Lamp. I love lava lamps because it brings colors and because they are prettydownload (2).

2. A acrylic moon it is because I have an acrylic sun and I think that it would be cool to have the sun and moon.

3.Paint and canvas.The reason I want this for christmas is because I love art because it is very creative .

4.81VxBsPnw+L._SL1500_Sticker art . I love sticker art it is easy and fun.

5.More adult chickens!!! I love animals and we have 5 chickens and I want to expand it so we can get 5 more!
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Moon-SeaCurrentLGChickens-Eating-Popcorn-5

London's Christmas Lego Ship

London's Christmas Lego ShipCheck out London’s Christmas ship!!!  London was doing some lego play this morning as we have a big trip planned to the Denver Museum of Nature & Science later today. Before we go we are going to the Bake Sale at Rachel’s school.

Leave a comment and let know London what you think!

Rachel and her StuffieIt’s a different kind of Christmas this year.  There are 5 stockings hung, the house is absent one husband and has gained one puppy.  Rachel’s health is continuing to decline on a continual basis and my other three kids are aware of some of the harsh realities of our life, more than last year.  Rachel’s speech is becoming harder to understand and she is mostly in a wheelchair or on the floor crawling but I have her walk to the bathroom and to her wheelchair on the front porch.  Often when she is in an angry mood she gets upset easily and screams like a toddler when her needs aren’t immediately met, other times she will sit content for hours listening to her favorite shows and movies.


Her decline has been hard for me because I have always liked to get out of the house and DO stuff.  We’ve spent more time at home this past year than we have ever done before and I find it depressing.  I’ve avoided the thought of obtaining a wheelchair van because I’m able to lift her as she still has some lower body strength (although it is considerably weaker since this time last year), although she weighs 185lbs.  I started looking at them this past week on ebay and there are actually a lot of them in the Northeast for well under $10,000.  I like Wasabi the jeep but it doesn’t fit Rachel nor her wheelchair and I am starting to face the reality that I need to find a way to purchase a used wheelchair van or get sucked into a depression from staying home.  Its good to get out of the house, its good to do things (even with a 13 year old that has a terminal brain disease).


I want to go camping with the 4 kids in the spring and have been looking at 1970’s airstreams and realized that between a wheelchair van and a camper, we can stay together as a family of 5 and go on trips together.


This life is certainly far from perfect, Juvenile Batten Disease likes to try and ruin lots of everyday things in life.  Some days the disease wins and some days we win the fight.  Rachel is definitely the one suffering from the disease but I’d be lying if I said it didn’t directly affect the rest of us.  Some days I feel crazy from the constant needing, some days I feel sad for the loss of her health and the loss of my marriage, some days I spend absolutely grateful for my good health.  Most days is a mixture of the three.


We love her.  The yelling, the seizure watch, her seemingly constant needs that have to be met, the depression of knowing that its going to get much worse, her frustration at not being able to be understood when she speaks makes it hard for me to remember who she was before this disease and see the person underneath that I love. The guilt of motherhood is the worst part of being a Mom.


Life goes on and we will forge ahead on this path. The tree is up, the stockings are hung, Santa has been written to. We all look forward to Christmas this year and enjoying a small, quiet celebration, grateful for what we do have and not sad for the things we lack. All we need is a cure for Batten Disease.  The cure is a long time away and out of our hands but the van is something I can tackle after the new year.

Rachel has been suffering from a nasty rash.  It started off slow around her shoulders and it has progressed down her body, leaving a whiteness in the pigmentation of her skin.  I’m concerned that it is an autoimmune rash and actually brought her to the doctor on Tuesday for an exam and blood work.  I asked the doctor to test her for Lupus markers and hopefully we’ll know in the next couple of days.  The rash is nasty and seemingly unrelated to medication or Batten Disease.  She is quite uncomfortable because its currently in her inner and outer thigh area so hopefully that will clear up or move soon. I’m also waiting on a Dermatology referral to Boston Medical Center.

 

Good News!  We are (me and the 4 kids) headed to Colorado for a quick trip to see the most AMAZING friends  and family in Kansas City and to cross The Flying W Christmas Round-Up from our Bucket List. Rachel has loved the Flying W since she was an infant so this should be a truly remarkable experience for her and for the other kids.  They are STOKED about going to the 8pm showing so they get to stay up!

 

This Saturday I am taking the kids (with the help of my Mom) to the Make-A-Wish Christmas party at Boston’s Logan Airport.  Apparently they have the party *IN* the Delta Airlines Hangar so I am really excited for the kids to see that.

 

Merry Christmas. 🙂  Today’s picture is the kids with Santa, taken at the Hull MA Carousel Shop.  I’ve put this picture in our yearly business Christmas card.  🙂

is drawing to a close and I’m up by myself tonight (a special shout out to our cat, Krabs, who is sitting next to me while I type). Christmas was good, we went to my Mom’s for Christmas eve and raced home to put out the reindeer dust, milk, cookies and carrots. Santa brought Rachel the “babydoll” stuff she asked for, PIXOS for Julie, an army tank for London and the Buzz Lightyear “yard” that Boston has been talking about non stop. It was a really nice day and the kids have finally calmed down from all of the excitement.

Today I brought up our Geotrax stuff that has been sitting in the basemenrt for at least a year and the kids played with it for HOURS. For whatever reason we don’t have a complete remote control train for the set (either the RC or the train but not a matched pair) and I looked everywhere. The kids manually pushed the trains for hours and had such a good time. I was going to play with the wii fit tonight but I didn’t have the heart to put away their train stuff. They are such good kids

I am absolutely broken over Rachel and what her disease will mean for her future. It is so unfair and I try not to think about it because I just cry hysterically and it doesn’t do me any good. I’m very good about keeping my emotion hidden, especially when I have to. She made me a box for Christmas at school with her paraprofessional with a little note that she had me read out loud. And here I am sobbing but doing everything I can to not let her hear my voice crack. Her hearing has become quite acute as her vision has been failing and she picks up on things she didn’t used to.

I hate this disease and how powerless she is. There is no fighting what is to come. No treatment. No hope. My child is slowly fading away and is generally unhappy, anxious, unsure and not living a life filled with quality and happiness.

And all I want to do is crawl under a rock and die for every moment that I fuss at her for things out of her control. The natural guilt of motherhood has always been difficult for me but it is borderline suffocating now. Balancing 3 presumably normal children who make a lot of noise and hopefully have very long lives ahead of them while taking good care of Rachel and making sure she has good moments and opportunities in her short life. That balance is absolutely impossible to strike and fills me with incredible guilt.

And while I have this inner symphony of juggling and guilt and batten disease and giving them good childhoods, I put a smile on my face and take them places and cook them dinner and show them how to “whack and unwrap” a chocolate orange and making sure they use the correct “Terry’s” terminology. How do you have a normal life in the face of the disease? I’m not sure of the answer but I do know that I am working my ass off to try and make things normal and wonderful and happy.

The kiddos and I already planning to make edible valentines for all of their classmates instead of the lame box o’ cards.

We’re also planning to learn how to make the PERFECT homemade Carrot cake to celebrate the birthdays of my mom, brother and his girlfriend (in March). Anyone have a good recipe?

Gosh this has been a busy couple of UNEVENTFUL weeks! Just the way I want it! We had THE REAL Santa and his Elves pay a visit to our house on Friday night, complete with presents for the kids, the cats and Holly (our dog). The kids were SO excited!

This week is a short week at school and on Wednesday they are having “Polar Express” day and I’ll be going in to help out with that. Today at 12:30 a blind man is coming into Rachel’s special ed class to talk about being blind but Rachel gets out of school everyday at 11:15 so I’ll be bringing her home for lunch then taking her back in. I hope I get to stay and listen to him speak.

I hope everyone is enjoying this Holiday Season. I have plenty of pictures to post and will get around to doing that this week before Christmas.

Now tell me, what are your family plans this week? My children and I LOVE this time of year! If you quickly type out your traditions I’ll read them to my kiddos and maybe we’ll adopt some of your traditions. Thank you!!