As told by Kat

Toosday

// November 24th, 2009 // 4 Comments » // Life // Life

I realized today that trash day isn’t until Friday this week. Its kind of like a personal challenge to me. Waiting out an extra day, making sure I spent my extra day wisely. I’m sure its some kind of weird sickness to look forward to trash day as much as I do but I figure I’d rather have this sickness than something really bad. LOL

We’re having Thanksgiving with my Mom, Dad, Brother and 2 (favorite) Euro-relatives that are here for the week.

Thanksgiving is my least favorite holiday. I am looking forward to a couple of days break this year but Thanksgiving still lands on the bottom of the holiday totem pole for me. I feel thankful every single day of the year. I know lots of people say that but I truly do.

Thankful that I am sane, thankful that I am healthy with lungs that work and a heart that beats. Thankful that I have 4 (relatively) healthy children that adore me when I make them cookies and have 4 little faces that light up (mostly) when they see me. I make good decisions (finally), I am a good advocate for my children and I am extremely enthusiastic about the little things.

What are you thankful for, every day of the year?

Christmas lights 1.1

// November 22nd, 2009 // 5 Comments » // Life // Life

Need one more weekend to finish upbut this is how it looks. The kids are so excited!

The weekend

// November 21st, 2009 // 7 Comments » // Life // Life

First of all, lets pay due respect to trash day that was on thursday. We love our trash day!

Friday night Julie had Daisy Scouts and in my alone time between dropping her off and picking her up I swung by the pizza place near our house and preordered dinner. John and Rachel walked to the pizza place and the boys and I ran and grabbed Julie then all met to have a nice dinner. I like that pizza place because its affordable and they are becoming to know us as regulars. People who know us are far more forgiving than perfect strangers. The pizza place is about to open up a small breakfast bar on the other side of their building space that isn’t being used right now. I look forward to trying it out.

Saturday (today) I took Julie out for a pastry at the bakery in our town and we brought home treats. While we were there another Mom and her girls (one of which is in kindergarten with Julie) was doing the same thing we were and we ended up agreeing to meet at the park near our house. We were at the park for nearly 2 hours! They are going to sleep well tonight.

Once John closes the shop I am dragging the 5 of them to find a real Christmas tree that we’re going to put out on the porch and decorate the hell out of it.

Tonight Lulu is coming over for dinner and to see the kiddos. I’m hoping she’ll be able to take Rachel and Holly on a short walk while I cleanup.

On Sunday John is smoking ribs and Uncle Clive (and maybe my parents?) are coming over. Definitely going to bake some cookies, too.

So if you wonder how I am dealing withthis disease….. read my answer above. We’re doing things that normal families do, regardless of her outbursts and personal challenges. Lightning strikes in all sorts of ways. Just try and enjoy every day without worrying when lightning will strike you. Don’t waste your time on this earth worrying about what might happen because there isn’t a damn thing you can do to prevent random, horrible things from happening.

Enjoy your weekend. Do something wonderful. Think of Rachel .

You have a choice in life. You can choose to have a good day regardless of your challenges or you can let your challenges choose for you.

Choose wisely. (Post a comment if you agree. Tell me what YOU did this weekend to make it wonderful!)

Lightning Strike

// November 18th, 2009 // 3 Comments » // Life // Life

Not sure why I titled this entry “lightning strike” because there isn’t a lot to elaborate on. Rachel has been figuratively struck by lightning and the whole situation sucks on so many different levels. We’re just trying to cope with the “today” and the issues with her vision, cognition, behavior and outbursts. Thinking about the “tomorrow” makes it a lot worse. Seeing my other 3 children mimic some of the behaviors that she models totally sucks but most of the people that witness it realize that they are copying Rachel and the people we know have been pretty understanding.

I’m at the shop today. They boys are at daycare until 5, Julie is at school until 445 and Rachel is out to lunch with John. I’m not a big fan of manning the shop but I’m so glad that John stole a couple of hours to go with Rachel to Lowes and Lunch. Those are the most important moments.

Spending more time working which has been good for me, personally. My Mom has been helping a lot with Rachel because I have very few options as far as her care. I can’t find “just anyone” to watch her the way I can a “regular kid” so its pretty much either my Mom or John. That part has been challening, especially as Rachel gets out of school at 11:15am on the 4 days she goes every week. Maybe she will be able to extend her day a little bit but I’m not holding my breath that she could sustain a longer day. Today at 2pm is her PT evaluation, I’ll be interested to see what they say.

Going out tomorrow night for a couple of drinks. Looking forward to it!

Taking Julie out for a quick nibble at the bakery in town on Saturday morning. Totally looking forward to that!

Must plan something special for Boston next because its his turn.

Happy 6th Anniversary

// November 15th, 2009 // 9 Comments » // John, Kat // John, Kat

John and I were married 6 years ago today. I can’t imagine stuffing any more stuff into the time we have been together (8 years). If you had told me that this guy (John) on yahoo personals was the one I was going to marry, have 3 more kids with and everything else that has happened, I would have died laughing (and crying). Life is full of surprises.

I have

// November 11th, 2009 // 3 Comments » // Kat, Life // Kat, Life

really great kids

Blank

// November 10th, 2009 // 2 Comments » // Boston, John, Julie, Kat, Life, London, Rachel, School, Thanksgiving // Boston, John, Julie, Kat, Life, London, Rachel, School, Thanksgiving

Can’t think of anything to write about tonight. I still have a horrible cold / upper respiratory infection that seems to be a “super cold.” I have been having lots of irrational thoughts about never leaving the house again and wearing a face mask to check the mail. Definitely the virus “talking.” Julie thinks I need to wash my hands more.

The kids had microwaved hot dogs with ketchup for dinner. Kind of proves that I feel terrible.

Both Julie and London brought home “manilla turkeys” to decorate and I doubt that our dining room carpet will ever recover from all of the glitter it soaked up tonight. Julie’s turkey is so thick with glitter that I think it needs a custom piece of plywood just to support the weight.

Rachel had a good entrance and exit to school today. We brought Holly (our dog) to school with us and that most certainly lifted her mood and made the transition easier. I think I better bake some cookies for them tomorrow. You can never have a mom who bakes too many cookies, right?

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!