Tag: life

Today the installation of MySQL on one of my biggest servers decided to die (it was post upgrade) and multiple phone calls, emails and texts followed.  My customers are always great, I am really lucky.  I worked my butt off to get it fixed and even with patient customers, a server issue always presents itself in a very stressful manner since so many people rely on technology working.  Working NOW.  NOW!!!  Always working.  Luckily server issues are rare.

2013-10-23 20.18.12This is my best friend.  Her name is Meredith but we mostly call her “Ninja.”  Yes, my son’s dog was named after her (it was her idea, who am I kidding).  It’s nice to have a friend who calls and calls you back 3 times throughout the aforementioned rough day to make sure you aren’t ready to jump off a bridge.  I’ve known her for 10 years but we were on a break (ha, a “Friends” reference) after we were mutually insensitive to each other while we were going through really hard times.  Our fight (which wasn’t really a fight because I hate confrontation and avoided her like the plague) is something that I will forever regret.  I’m grateful to have her back in my life because she is awesome, supportive and makes me laugh like no one else.  If we were gay I would definitely ask for her number.

She hates the couch in this picture and literally has it sitting on her curb tonight waiting for pick-up tomorrow.  I have no idea where we are going to sit when I go over to her house for free food but I guess that is my problem.  Her TV is too far from the couch and I have to rely on sound to know what is going on in any show.  I deny needing glasses, she just has too long of a living room.  I don’t care, really. Well, not until Longmire returns with some new episodes (she got me hooked on that stupid show).

Anyways, that’s Ninja.  She has a couple of awesome kids and a husband who tolerates me. 🙂

2013-10-18 08.48.28So I have this awesome friend who has this awesome husband (ok, he’s not awesome awesome – I’m just afraid of him after being trapped in a bathroom last April) and two cool sons. It is my goal this summer (or sooner) to get the Triplets out to Denver and have her son, Nick, take some portraits of my kids.  He does awesome work for a kid (he will always be a kid because I am too young to have friends with teenagers) and I wanted to share. Check out: Off Road Colorado Photography  

Hopefully he will add some more of his work to his facebook page… 🙂

In life we do a lot of waiting.  Waiting for the phone to ring, waiting for a check to arrive in the mail, waiting in line (at Disney World if you’ve been lucky enough to go).  What purpose does it serve to  wait for things in life? The big life changing things that you want to do but can’t.  For many people I know, they put off the big life changing stuff because they are afraid.  I know how that is, it has happened to be a few times in life.  Generally speaking, change doesn’t make me fearful or anxious because I think change can be really good.  Most of the changes in my life have worked out well.

I want to make some big changes in my life right now but my life is very much like a giant cruise ship.  It doesn’t turn on a dime the way a speedboat does.  Slow, steady, calculated.  It’s frustrating as hell for me but its my reality.

Hurry up and wait.  I just worry (occasional worry that crosses my mind, not the all consuming worry that keeps you up at night) that when the waiting is over, that something catastrophic will happen in my life (again).  I don’t want to regret waiting.

In the short term (today), I am waiting to hear from the Tire / Alignment place I dropped Wasabi off at last night to see about having his tie rod end replaced because I am pretty certain it is causing my issues.  I’d love to have two jeeps.  Wasabi for wheeling and a JKU for mall crawling (driving the kids around).  One day… 🙂

Can you relate?

During our time together this morning my Julie shared this poem with me after I shared a bit of my pain with her, stressing that the best part of our lives has yet to happen.  Which is a light at the end of the tunnel of darkness we are going through now.  She is an amazing child.  I believe she drew this poem from her time in 3rd grade last year with Mrs Buttkus:

Mother to Son


Well, son, I’ll tell you:
Life for me ain’t been no crystal stair.
It’s had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor—
But all the time
I’se been a-climbin’ on,
And reachin’ landin’s,
And turnin’ corners,
And sometimes goin’ in the dark
Where there ain’t been no light.
So boy, don’t you turn back.
Don’t you set down on the steps
’Cause you finds it’s kinder hard.
Don’t you fall now—
For I’se still goin’, honey,
I’se still climbin’,
And life for me ain’t been no crystal stair.

Watching my husband for the last two years and seeing all of the changes he has attempted (some successful, some failed), some good, some bad.  I realize that I have silently been on a journey of my own.  I will be turning 35 in 6 weeks and I am the proud mother of 4.  By my next (36th) birthday I hope to have finalized the legalities with my husband after our 10 year marriage, and that our journey as friends will have developed to a place where we can peacefully and pleasantly co-raise great kids (I wrote 4 great kids, then 3, then 4 and have decided to cut the number out because it sucks to write 3 when you currently have 4 children).

I became a mother at age 21, by choice.  I’ve spent the last 14 years raising children and focusing on my kids and lots of things (and taking care of people) other than myself.  Since Rachel’s diagnosis I’ve spent a lot of time organizing her care (medical/educational) and I’ve been working super hard to give all 4 of my children awesome experiences to ensure that my 3 unaffected children  look back and feel they had a good childhood.  I’ve also worked at raising awareness for Juvenile Batten Disease (Batten Disease in general) and have raised thousands of dollars.  It has been important to me to do this because her disease is 100% fatal and I can’t look back on this and wish I had done more. Medically, there is nothing I can do to cure her, I need to do what I can to help others that will be dignosed in future.  If gene therapy starts working, there is a chance that with more research and funding they will be able to provide a treatment for this disease.

Within the last year or so I started to look at myself and I’ve made some changes (slowly, very slowly) and sometimes it has been 2 steps forward, 1 step back.  Lots of silent tears have been shed, lots of nights I went to bed early because, as we have all experienced, some nights are easier cut short rather than stay up and wallow.

I’ve spent more time with my friends, got back into Jeeps (<3) and started eating better.  I recently started seeing a new therapist who is helping me transition into the next stage of my life and last week she asked me where I want to be at the end of this. I quickly rattled off my answer to her and the look she gave me made it clear she really wants me to think about this. I realized that while I can fire off a short answer, I deserve to think it through and come up with a longer, more detailed answer.  A picture for my future.  I know the picture includes me in flip flops with toenails matching my jeep with kids at my side, but the rest is pretty blurry. I’m looking forward to wading through that fog and sketching out a clear drawing then coloring it in as time goes by.

Life is good, even in the midst of struggle, hurt and disease.  Life has been very good to me.

Let us toast to our lives with this merlot snow cone that my 6 year old suggested to me at a birthday party for the remarkable baby Charlie.  It was a great idea, Boston.

It comes at you without warning, without incident, without time to gather your emotions and run in the closet and hide.  I’m sick of going through the motions of grief because that isn’t who I am and it certainly doesn’t match up with my personality (obnoxious, fun, energetic (usually)).  I’m sick and tired of feeling like this but I’ve realized in the 4 years since she was diagnosed that I’ve grieved things my entire life (we all have) and while it is more inconvenient than having to get your period when you aren’t having more children (4 is enough, right?) it is something that we all go through in different ways since the first time we dropped our favorite toy from the high chair.

You can’t talk about half of it with people you know IRL (in real life) because you’ll be an even bigger pariah than you already are.  I wrote this on Rachel’s Facebook wall today:

Seeing similar aged kids do things that Rachel can’t / won’t can be horribly painful for me (Rachel’s Mom). It isn’t something that rationally makes any sense to me because I am extremely happy for the kids who get to hit their milestones and to the “rite of passage” stuff. But hit me on the right day and it feels like a knife piercing me in the center of my heart. I know other parents with dead / dying children feel the same way from time to time…. we just don’t talk about it as to avoid taking away anyone else’s joy away (joy that they fully deserve). Just some of my morning thoughts that came up this morning over a cup of coffee.

After a 3rd grade history fair (they call it the wax museum) I nearly cried when another mother who has a daughter the same age as my 9 year old invited me over for a glass of wine.  Someone who doesn’t know me extremely well but well enough to have my kid over a few times actually wanted me to come over (AND SERVE ME FREE WINE!!!!) .  I surprised myself and accepted her invitation and had a great time!

When Rachel was first diagnosed people came around, they called, they texted and asked if there was anything they could do (etc).  There are a small group of people I know who have stuck by me this entire time and been there for me but most people don’t know what to say, don’t have the time in their “busy” (relative term here people) lives.  I think it boils down to the disease that my daughter has is so overwhelming for people that it is easier for them to pretend that it doesn’t exist.  To the people (pretty much entirely female) who have stayed with me, I will never (EVER) be able to repay you or express to you how much you mean to me.  You’ve taught me more about people, love and human nature than you will ever know.

I’ll never stop being grateful to one of my best friends “Ninja” for saying to the guy who asked me “How’s Rachel?” after I answered… “She has 3 other children, you know.”

Trying to balance long-term terminal illness with raising 3 healthy and emotionally well balanced children is exhausting…. but hopefully be the most rewarding thing I will accomplish in my life.

Let the rain and the tears fall this weekend for next week shall bring sunshine.  If it doesn’t I am calling up Jeni and we are making a LIQR STOW RUN.

I’ve squandered my time and interests, steering clear of blogging and keeping a journal of my life online.  Part of me has been busy with other things and the other part simply didn’t want to see the changes in my daughter and the easy ability to chronologically look at the decline.  I imported some of my very old posts into this blog and am going to revisit blogging and “the internet.”  <3

Sadly, her son passed away last year but that doesn’t stop us Batten Families from sticking together. Thank you to Cheri who treated us to lunch this week! <3


Rachel had another grand Mal on friday night, this one was while we were at a carnival sitting in the very top of the zipper. We were tipping back and forth as they were loading people into each car waiting for the ride to start and she starts convulsing. John was on another ride with Julie, London and Boston on the other side of carnival. I got Rachel away from the cage so she wouldn’t bang her head and started yelling down to the short line “Stop the ride, stop the ride, my daughter is having a seizure.”. Not sure if the ride attendants understood me but someone got them to stop and bring our cage back to the ground so I could get out with her as she was still seizing. When we got down I looked at the most capable teenagers to go to John (good thing he was wearing a lot of lime green and is really tall so is easy to recognize) and he came running.

She went home with John and I stayed with Julie and the boys and after my adrenaline stopped pumping we finished out the night on a good note. It is very important to me that Julie, London and Boston keep as normal as possible and not let Rachel’s disease overshadow every childhood memory.

The best part is that we all went back on Saturday night and Rachel and Julie both rode the zipper… TWICE! 🙂

I took Rachel to her second appointment with her Pediatric Rheumatologist and he confirmed that she does have Lupus, also known as Systemic Lupus Erthymisomethingerother. How does a beautiful and innocent kid end up getting an early death sentence and Lupus? It’s total bullshit and rather than be angry this fine evening I would like to pose a question to those folks that still read my infrequently updated blog.

What do you live for?

Last year I spent many weeks living to cross off items on the bucket list, taking my kids to multiple states and experiencing all sorts of awesome things. Already this year I have driven my kids down to Florida and back and watched the miracle of Rachel and London learn how to swim. I have personally been living to make sure Rachel, Julie, London and Boston get to experience countless amazing days while Rachel can.

This year I want to continue this mission but maybe travel a little less (my new Jeep is not so good with gas mileage). Planning on sharpening our camping skills, maybe get a little sailboat. I’m looking for more adventuring ideas, things to enjoy, experience, to LIVE for.

So… What do you live for?

Took this picture of Rachel today. We clocked 100 miles with the Jeep’s top down today. It was 65 degrees in Massachusetts today!

Can’t believe it is January already. Julie started back to school a few weeks ago and is enjoying her social time, she is pretty overwhelmed with all of the stimulation but loves it overall. London is starting preschool next week in the afternoons and they are all going to Art Class again starting later this week. Rachel was kind of upset about not going but I said she could bring some art supplies to Granny’s house as she’ll be at my Mom’s for her regular Friday night “date.”

Rachel is about 95% blind. The other five includes a spec of vision (literally a spec) out of the corner of at least one eye and she still has “light / dark perception.” She is handling it as well as can be expected. I try to get her to talk about it and how she feels and if she has any questions about her blindness and for the most part she is as happy as can be expected (and then some). She and I are going to the University of Rochester next week for a “check in” to see how she is progressing as they are studying Juvenile Batten Disease. My fingers are crossed that her disease progression is considered slow for her age.

The day after we get back from NY I am driving down the kids to Florida to stay the week in a house I booked months ago with a heated pool in the back porch. One day at Disney (can’t believe how expensive it is) and another day at a petting zoo. Our Make a Wish trip was amazing yet difficult for Rachel (and us) because she wasn’t on the right medication and it was so hot. My brother, nephews and my other brother and his girlfriend (Andrea) are all planning on coming down during the week.

Get out your fine china (I am so not fancy enough to ever own any). Wear your best jewelry (I made Julie wear her new princess earrings today despite her fear she might lose them) and treat this day like its your last on earth. Some days are harder than others but you should try every single day.

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?

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