I
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.
Read MoreChristmas week
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?
Read MoreSugar Cookies
I am going to make and decorate sugar cookies with the kiddos on Saturday while John is working (he hasn’t been home much this week). This is the recipe I plan to use.
http://allrecipes.com/Recipe/The-Best-Rolled-Sugar-Cookies/Detail.aspx
Read MoreLondon Jack (2 years ago!)
Is that even possible that so much time has passed? This was taken in Feb 2006 in Colorado.
I’ll throw in a few other Feb 2005 shots…
Rachel
Julie w/ Rach
JulieBean
Me
You know you love your kids
When you stay up late making 6 dozen cupcakes to pass out to various people who love your children.
When you address 21 valentines for your first grader and 10 for your preschooler at 11:30pm on 2/13.
When you work your ass off to support them and still juggle your life around so you still manage to spend quality time with them (individually and together), thus causing you partial insanity along the way.
When you keep a written and photographic journal of their life and yours, the good and the bad, so that they will know when they get older that life isn’t always perfect or easy.
When you don’t run away screaming while managing a half dozen strategic operations to keep the house running, food on the table and clean clothes ready to wear…..
(Anyone want a cupcake?)
Read MoreValentines Day
I am going to be bringing in cupcakes for Julie’s preschool (all three classes because I hate the thought of leaving any kiddo out) and I need some decorating ideas. Keep in mind the school is peanut free and we don’t want the preschoolers using welding equipment. 
I’m also up for any craft ideas for either the school or my kiddos. I used to be all Martha Stewart and then life got in my way. The amount of collective children that belong to the people that read this is quite astounding…. so post some comments with your brilliant ideas.
Operation Valentine’s Sushi
Valentines Day is something that we historically celebrate as a family and we will plan to spend dinner on 2/14 together for many years to come. This year I want to make sushi for dinner as well as a traditional American dinner (mac n cheese) for the children. I have most of the supplies (nori, rice wine vinegar, rice, ginger) but I have never actually made any sushi, although I have eaten a good share of it on the last two cruises I went on. We bought some store made stuff the other day and it was absolutely *HORRIBLE* and an experience I wish never to relive.
If you have any advice, suggestions, links to good websites or ideas I would certainly appreciate it. John has definitely proven himself in our kitchen so I have pretty big shoes to fill. Help!
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
Recent Comments