Tag: disease

To put it as directly as possible: my oldest daughter is dying, I’m a single Mom and life is a bit tough at present.

I realized that I was due for a magnificent stress relief yesterday. I was at the bus stop putting my daughter on her bus with my Mother at my side. It was not a regular moment, my Mom was in from Boston visiting myself and my children. I had let my daughter stay home all week from school so she could spend every waking moment within fingers’ reach of my Mom. Continue reading “Grief Released” »

2014-03-19 17.29.45Rachel’s new school is full of people just like me and just like you with feelings, hopes, laughs and tears.  Young people who have been admitted to the school because they were born with (most) a disability or acquired one along the way like my Rachel.  I know that some of the kids there will probably attend the school until age 22 and will transition into the mainstream world.  I also know that due to privacy the staff is unable to divulge medical information to the other children about Rachel or her fate.  When I am visiting, different kids will strike up a conversation and I have started to tell them things about Rachel.  That she was totally normal and healthy, reminding them (especially the boys) that she is only 13, that she is blind.

Last night I told two of the other students that Rachel is terminal and the name of her disease (Batten Disease) so that they could read more about Rachel.

There is a boy at her school who is truly amazing.  He can maneuver his iPad with his feet faster than I can with my fingers.  He took a liking to Rachel over the summer when she was in summer camp at her new school and I have reminded him, specifically, that she is only 13 and a MINOR.  🙂 Last night at the theme dinner I told him about her disease and that she is terminal.  I also told him about her website that you are reading right now.

I think its only fair that the kids who care about her know that the Rachel you see today is not the Rachel that will be in a few years (and not the Rachel that I knew when a few  years ago).  It is heartbreaking, but only fair to let the other students who are cognitively capable of grasping her disease know what is to come.

Reality sucks but I’d rather be a realist.  Living an honest, pragmatic life has made living with this stupid disease much more bearable for me.  The picture is from dinner last night.  I had to threaten her to get a smile because she was so busy letting me stuff her face with mashed potatoes, gravy and chicken. <3

Another installment of my life is below. Life is not always Facebook pretty.

This morning: So picture me in yesterday’s yoga pants and tank top with plaid shirt over the top. I’m doing my morning chores, a little more relaxed because school is closed today due to the winter storm that is finishing up. While I’m making coffee, getting my 13 year old on the toilet to pee, drawing her bath, dishes, laundry, etc… I’m also reliving yesterday. Going through my head are the scenes from last night… And I step in dog poop in my new $10 flip flops from Santa.

I promise that I let the dog live. I didn’t want to…

Last night: The kids have been home for 2 weeks. I made a beautiful ham dinner that I call “thanksgiving” and it’s the same dinner I make every week to show gratitude weekly rather than yearly. Ham, gravy, peas, cranberry sauce, and special mashed potatoes. It’s pretty awesome and a favorite with my kids.

I call my kids in to the kitchen so I can make them a plate because, like us grow ups, kids don’t all like the same exact combo. 1 hates gravy, 1 loves cranberry sauce, 1 wants meat ONLY and the other needs small bites with extra gravy in a bowl with delivery.

So I’m feeling like a slave. I’m stressed. Money is tight post Christmas and I just got another property tax bill and I’m awaiting a giant gas bill from having to keep the heat higher than ever (in my entire life) so Rachel’s toes don’t’ fall off from circulation issues.

So I’m stressed. Feeling financial pressure. I’m stuck inside another day.

I finally make myself a plate and walk into the dining area. One of my children has removed all of the chairs to make a fort and there is nowhere to sit. No one looks up or waits for me to eat. I’m a provider of sustenance who is stressed out and tired.

And I lose my shit.

Threw my dinner out. Chewed one of my kids out. Stormed off into the kitchen and chucked my dinner plate into the sink and it smashes. Everywhere. Three kids sniffling over their dinners, one confused and refuses to eat. I feel horrible.

I start cleaning up the mess in the kitchen and doing the dishes. I call their Dad on the phone to be backup and he is unavailable.

I’m a mess. Stressed out. Emotionally spent. Help is not coming.

I get one son bathed and send my other son in for a bath afterwards. I’ve tasked my healthy daughter to play with her sister. I’m still in the kitchen.

And then Rachel has a horribly magnificent seizure. She turns blue. I feel like I’m outside my body. I’ve just freaked my kids out and now they are freaked out seeing and hearing their sister.

And now I’m crying, holding my daughter, turning her head to the side, feeling her saliva roll down my hand. I call my best friend and cry on the phone while Rachel is still seizing and tell her “I quit.”

I’m not cut out for this.

No one is.

I finally tracked my husband down and got him to come to the house to reassure the kids. There is no pride to swallow.

Another snow day today and I rescinded my resignation.

We recently, quickly updated the New England Chapter of the Batten Disease Support & Research Association from a Drupal based website to WordPress. Continue reading “N.E. Batten Disease Chapter” »