As told by Kat

The stages of grief

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

I hate being sick

// November 8th, 2009 // 4 Comments » // Batten, Kat, Life, Rachel // Batten, Kat, Life, Rachel

Over the past two days I have developed some kind of lung infection with a sore throat. Julie has a cough that keeps her up coughing at night. I need to feel better tomorrow. NEED TO.

We had a good Sunday, our only family day together ever week. Each kiddo took a bath and while Rachel (who was the last to go) had a good soak we talked a bit about her eyes. You’ll have to remember that she has made very few comments about the loss of her eyesight in these last months which was another symptom of something “major”going on with her.

She was about 20/40 at the beginning of this year, tested at 20/125 and 20/320 in May 2009, then tested at 20/400 (with lighthouse cards) in early June 2009, then 20/250 in July (but was inconsistent with her answers, as she had been at the other two eye places). Her “certificate of Blindness” is signed 7/13/09.

Her eyes have progressed welllllllllllll passed 20/200 in these last couple of months with substantial loss of peripheral vision. You can literally tell by looking at her eyes that they are substantially more affected than they were in early October.

Still can’t get over it. She was born and was normal! (There aren’t enough exclamation points to emphasize that point, in my opinion).

I had to remind her that glasses can’t fix her eyes and that there is nothing that we can do to make it better. I’ve talked about this with her a couple of times before. This time her reply was “You mean I’m gonna be a blind kid?” I said that yes, she is (trying not to let her hear me cry). She then became concerned that she was going to be alone. I reassured her that she won’t be alone and she became concerned that I am going to die, that Daddy will die and that Granny will die.

Then she asks me: “What if you and Daddy and Granny and Julie, London and Boston all die?”

I then went through all of the people that will help take care of her and she kind of mentally walked away from the topic to play in the bath water.

Tomorrow is another school / work week. Hopefully it will be a bit brighter.

Can’t sleep

// November 7th, 2009 // 7 Comments » // Batten // Batten

Can’t get over this and what is in Rachel’s future.

Can’t get over how unfair this is for her.

Can’t get over how hard it must be for her.

Can barely breathe.

I just can’t believe this is happening.

Gulp

// November 5th, 2009 // 3 Comments » // Life // Life

The Orientation and Mobility Specialist came to fit Rachel for a “pre cane” an pointed out that the sign I requested has been hung. She, btw, is totally awesome and gave me a ton of helpful suggestions for the “right now” while Rachel has some usable vision and for when the vision goes away.

But between the arrival of the sign and the pre cane I just don’t think I am capable of ingesting enough chocolate to eat the feelings from this day away.

It can’t hurt to try, right?

Hairless Bears

// November 5th, 2009 // 1 Comment » // News // News

Very interesting article @ Daily Mail Reporter here.

Thank you

// November 4th, 2009 // 4 Comments » // Batten, Julie, Kat, Life, Rachel // Batten, Julie, Kat, Life, Rachel

Thank you to those that emailed and commented on my blog. It does make me feel better to be heard and not “suffer in silence.” Really I am not the one who is suffering but it is very painful to have a front row seat.

And thank you to Veronica at ATT Wireless who kindly cancelled Rachel’s cell phone and waived the early termination fee.

Better day today. “Better” is a relative term I should clarify. I still had to lay her on the floor with a rolled up towel under her head for a pillow and pin her body and arms down so I could brush her teeth and she tried to spit in my face in the process but the bottom line is that I got the job done. I hope she is having a good day with the Melissa & Doug music set I got for her this week. She was unhappy with music class this week because she couldn’t sing YMCA (she can’t mentally keep up with the song and can’t see the arm movements) and she actually was able to tell me “I can’t keep up.” I can’t imagine. Hopefully her person (Mrs P) isn’t suffering from a headache right now.

Julie is at home with me today with a hacking cough. She isn’t sick, just sick of coughing. (And she is eating oreos next to me right now).

If anyone has any grocery coupons they no longer want / need I would be very appreciative to have them. I am trying to cut down our food bill as much as possible.

If someone

// November 2nd, 2009 // 10 Comments » // Batten // Batten

could explain to me how to be a good mother to a child that is recently blind, suffering from dementia and borderling schizophrenic symptoms with a good dose of rage and topped of with the inability to self inhibit…

THAT WOULD BE BLOODY AWESOME.

Because I wake up feeling like shit and I go to bed feeling like shit.

And nothing I do for her ever seems to be right.

This is a nightmare and at the end of this I will be eaten alive by guilt because on some level I am sure I will feel some relief.

I HATE THIS DISEASE! Please let tomorrow be a better day. I want my little girl back.

November 1

// November 1st, 2009 // 4 Comments » // Life // Life

Took the Halloween decorations down and put them away and my 4 little helpers assisted me with putting up Christmas lights.

All 4 of my beautiful babies are thrilled!

Happy Halloween!

// October 31st, 2009 // 1 Comment » // Life // Life

After my post about “dressing up” for Halloween I went bought a cheap cape, witch hat and black lipstick / nail polish. Painted my nails, applied lipstick and was all ready to go out.

Enter Murphy’s Law.

The wind was HOWLING all evening causing the hat to blow away and the cape to be a choke chain. I didn’t make it down our front steps before deciding to take off the hat and cape (leaving me with no costume).

So I figure that there has to be some Murphy’s law about that…

Nevertheless, here are some pictures of my Halloween creatures. Kids had a good time, the boys quit early and Rachel’s vision loss was extremely noticeable. She was a trooper despite being unsteady and unsure of her steps. Julie had a great time. We walked from our house to “F” street and then got a ride home. We have a huge pile of candy and the kids feel so good about this day. Today was lived to its fullest and I am grateful to my brother and parents who helped us enjoy it.

Halloween Eve

// October 30th, 2009 // 4 Comments » // Kat // Kat

I feel like a jerk today even though I’m having a good day and the kiddos are as well.

What if this is the last year that Rachel can see?

I said I was going to dress up for Halloween but over the last two weeks I’ve decided against buying a costume. The kids were really excited that Mommy was going to dress-up. John even has a costume idea (tough biker guy with fake tattoo sleeves). I need to get out tonight and buy a costume. Maybe I will drag my brother with me.

Seriously, people. You only live once. Try and make it count at every turn in the road, at every bump and on every rainy day.

Halloween Eve Eve

// October 29th, 2009 // 6 Comments » // Kat // Kat

Also known as trash day. Must pay respect to the best day of the week.

I have been struggling with something recently, nothing to do with my children and nothing to do with this nightmare of a disease. And nothing (suprise suprise) even to be blamed on John. Actually, John and I are doing well, as well as anyone would in our shoes.

I’m taking a break from TV, from facebook and any distractions in my life that lead me away from tackling something (and no, not my weight) that needs to be tackled. Yes, this is a vague entry but I truthfully feel very uncomfortable talking about it. I’m not a “vague for vague’s sake” kind of person but thats how this has to be.

Keep reading my blog if you’re interested in keeping in touch. Would it kill you to post a comment once in a while?

Tues

// October 27th, 2009 // No Comments » // Batten // Batten

Just got back from a couple hours out with my brother and friend. Still can’t tolerate the heat of a buffalo wing. Maybe I’ll try them again in 15 years.

I was reading a comment on someone’s facebook status update. The comment on the update was along the lines of “God is watching over your son making sure he is okay.”

Um, dude. The child is terminally ill due to a genetic and incurable neuro-degenerative disease. I didn’t even really understand the concept of neuro-degenerative until this summer. Wiki covers the gist of it:

http://en.wikipedia.org/wiki/Neurodegenerative_disease

Saturday

// October 24th, 2009 // No Comments » // Boston, Julie, Kat, London, Rachel // Boston, Julie, Kat, London, Rachel

It is dark and gloomy today but soccer is still on. Julie still won’t play on the team that we sponsored and are coaching. My girl is, at this age, not interested in playing team sports. I prefer solitary fitness activities as well so I can’t say that I blame her.

Boston won’t stop eating the organic banilla yogurt. Gross! At least no one is fighting him for it.

Rachel is, right now, watching Nickelodeon as best as she can. Her blindness is becoming more and more apparent.

London is my cookie monster. Can’t keep fresh baked goods in the house for very long with London Jack around.

I am clearing out my email, ordering pictures via shutterfly and tying up some loose ends. I cannot say enough about having a regularly updated “to do” list, it really makes a difference.

gmail + google calendar + google docs = increased productivity and happiness

I love Google!

Rachel goes back to school on Monday. Her new schedule is M, Tu, W, Th. 8:45 – 11:15. I am excited for the new set-up.

Thursday

// October 22nd, 2009 // 2 Comments » // Batten, Boston, Colorado, Julie, Kat, Life, London, Pictures, Rachel // Batten, Boston, Colorado, Julie, Kat, Life, London, Pictures, Rachel

Another trash day has come and gone.

This was a pretty uneventful week, the kiddos are all healthy (knock on wood) and Rachel went in to school for some OT and Speech therapy which she enjoyed. Next week she is going back to school on a modified schedule that fits in with London and his preschool hours. She hasn’t been going to school since the week of Disney (Make A Wish) trip.

Julie is sitting next to me playing with her new wooden stamp set that I amazoned her as a special treat. The weather is perfect for October and Rachel, London and Boston are playing on our porch, actually on the other side of the window I am sitting next to. Its very nice to see them playing. Rachel is doing some pretend play in their play structure, pretending it is a ship that she is sailing to California with her GPS. Its nice to see her imagination at play. She started a stimulant medication this morning and I’m hoping that we will see some long-term benefit and behavioral improvement. Her vision continues to get worse, which we know to expect, but it still sucks to see. The blind have their own world that I have never been exposed to but I’ve been thrown into the deep end of the pool and am trying to learn quickly.

London and Boston are back to daycare 2 days a week and are staying until 5 so I can get some work done (which is quite busy as of late). Both boys are in preschool (London is where Julie went and Boston is in the little green school across the street from our house) and they are happy. London is going to be Woody and Boston is going to be Buzz Light year. Julie wants to be a “Girl Frankenstein” and Rachel wants to be a “Mummy.” WTH am I going to find a Girl Frankenstein??? The kids are convinced that I *NEED* to be “Jessie” from Toy Story. Looking forward to Halloween (which is also my last day as soccer coach for the season).

A very nice person is taking my girls out tonight for a couple of hours and I am sitting next to three hampers full of clean laundry with no chance I can get it folded before she comes. I guess, on the bright side, is that the laundry is clean.

Most people say “Calgon take me away” but I’d rather think about this:

Cooks Illustrated Soft & Chewy Sugar Cookies

// October 16th, 2009 // No Comments » // Food // Food

2 cups unbleached all-purpose flour (10 ounces), preferably Pillsbury or Gold Medal
1/2 teaspoon baking powder
1/4 teaspoon table salt
16 tablespoons unsalted butter (2 sticks), softened but still firm (60 to 65 degrees)
1 cup granulated sugar (7 ounces)
1/2 cup granulated sugar (3 1/2 ounces), for rolling dough
1 tablespoon light brown sugar
1 large egg
1 1/2 teaspoons vanilla extract

1. Adjust oven racks to upper- and lower-middle positions; heat oven to 375 degrees. Line two large baking sheets with parchment paper. Whisk flour, baking powder, and salt in medium bowl; set aside.

2. In standing mixer fitted with paddle attachment or with hand mixer, beat butter, 1 cup granulated sugar, and brown sugar at medium speed until light and fluffy, about 3 minutes, scraping down sides of bowl with rubber spatula as needed. Add egg and vanilla; beat at medium speed until combined, about 30 seconds. Add dry ingredients and beat at low speed until just combined, about 30 seconds, scraping down bowl as needed.

3. Place sugar for rolling in shallow bowl. Fill medium bowl halfway with cold tap water. Dip hands in water and shake off excess (this will prevent dough from sticking to your hands and ensure that sugar sticks to dough). Roll heaping tablespoon dough into 1 1/2-inch ball between moistened palms; roll ball in sugar, then place on prepared baking sheet. Repeat with remaining dough, moistening hands after forming each ball and spacing balls about 2 inches apart on baking sheet (you should be able to fit 12 cookies on each sheet). Using butter wrapper, butter bottom of drinking glass; dip bottom of glass in remaining sugar and flatten dough balls with bottom of glass until dough is about 3/4 inch thick.

4. Bake until cookies are golden brown around edges and just set and very lightly colored in center, 15 to 18 minutes, reversing position of cookie sheets from front to back and top to bottom halfway through baking time. Cool cookies on baking sheet about 3 minutes; using wide metal spatula, transfer cookies to wire rack and cool to room temperature.