As told by Kat

Exhale

// December 30th, 2009 // 4 Comments » // Batten, Boston, Julie, Kat, London, Rachel

Having to explain to my 9 year old daughter who can’t see very well that she can’t learn to ice skate really SUCKED! If only for one winter, I wish that Rachel can ice skate. Please let it be possible.

Earlier today Rachel told me the money she is saving is for a car. I gently reminded her that she can’t drive a car and she said her “person helper” would drive her in it. I told her she should have Julie drive her.

This sucks so hard. A nightmare. I have noticed she is having a harder time identifying her siblings. As of late she would confuse her brothers but now she can’t differentiate between her sister and brothers. She’ll walk into a room looking for me and if I don’t immediately answer her calls of “Mom, Mommy?” she immediately walks out because she can’t see me. Such a good kid that deserves a full life. I guess I better get moving because I don’t have as long as I expected. Its a very painful lesson. I’m currently looking into planning some mini trips for us when the weather warms up, doing things that can be DONE rather than just seen.

Lots of rage today from her. Her emotional filter is apparently on vacation (hopefully not a permanent one). I’m grateful, in some ways, that Julie, London and Boston are so young because they are doing great in the face of our daily life. But its hard because they cannot grasp the concept of her recent blindness and can’t remember to “keep the floor clear” (or she’ll trip and fall or break their stuff out of sheer frustration). Most adults I know can’t grasp the concept of her recent blindness, either. What does that tell you? My little 3 are awesome with her. I’m starting work with having them identify themselves to her but that will take time.

DO NOT TAKE YOUR LIFE FOR GRANTED!!!!!!!!!!!!!!!!!!!!!!!!!

Christmas week

// December 27th, 2009 // 4 Comments » // Batten, Birthday, Boston, Christmas, Food, Julie, Kat, Life, London, Rachel, Valentines

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?

Christmas Week

// December 21st, 2009 // 5 Comments » // Christmas, Kat

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!!

Thanksgiving 2009

// November 26th, 2009 // 3 Comments » // Thanksgiving

Thanksgiving should be renamed: “Key Lime Pie Day.”

Today was a good day. Good food made by my Mom and awesome desserts made by my other half. Rachel had a good day today, she has been “entertaining” my cousin and his wife who are here from England. I spent 10 minutes watching her watch TV before bedtime tonight and was humbled by how much she overcomes on a daily basis and how truly little (very little) Rachel complains.

Life is so humbling if you stop and look around for a minute.

Love my kids. Love Key Lime pie. Anyone else out there love a good key lime pie?

The stages of grief

// November 9th, 2009 // 7 Comments » // Birthday, Kat, Life, Rachel

I just found myself googling the 4 stages of grief only to find out that there are 5. Who knew?

I’m assuming that its normal to bounce around from one stage to the next and back again?

Anyways, here are the four FIVE stages of grief.

1. Denial (Check) and Isolation (No) (Doesn’t that make six stages?)
2. Anger. (Check)
3. Bargaining. (No)
4. Depression. (No. I’m so sad for her and what she will miss out on but I won’t give into depression and miss out on the good moments and the good days)
5. Acceptance. (No)

I can’t imagine the day that the warm sun rises and I actually feel acceptance.

I tried to spend a few moments today imagining what Rachel would do if she were in my shoes. What would be her plan of attack if it were her daughter with this disease. What would she do? Because whatever *that* is, is what I want to be doing. I need to get out of the overwhelming sadness I feel for her and the speechlessness of it. I need to start fundraising so there is never another child lose their eyes, lose their mobility, lose their mind. In Rachel’s honor I need to make a difference.

I changed the “About me” on the top right hand side of the blog to sound a bit more cheery. I don’t feel that cheery yet but I’m hoping to get there. I want to spend my “Kat time” (when I’m not working or with the children) on promoting awareness and fundraising for the www.BDSRA.org.

I start most of these paragraphs with I. I don’t know why.

I have talked about fundraising a few times since July but I don’t know where to get started. I haven’t gotten closer to figuring the “getting started” part in the months since July so I figure I better get started NOW or I might find that 2 years has passed and I’ve done nothing. And doing nothing is simply not an option.

Please email me at mrskatvon@gmail.com or comment if you have fundraising ideas that have worked for you (or someone you know) in the past. Also please contact me if you are willing and able to help. I definitely plan to have a raffle. I also plan to contact Rosie.

Thank you!!!