→BATTEN DISEASE

It has been 139 days since my daughter died and I still haven’t been able to write her obituary.  I don’t want anyone else to write it or any offers of help, it’s something I feel I must do on my own. 139 days feels like a grain of sand on a very large beach.  Like no time has passed.  Like it was yesterday.  It still surprises me how much harder it gets with the more time that passes. I need a road trip.  Maybe that will give me some inspiration to write a tribute to my daughter, one that she really deserves.

The triplets are taking a bike class at a recent Rec center all week. I didn’t know it was there, about 2 blocks from where Rachel was in school. I have to drive past it 20 times this week. She isn’t inside in a classroom, waiting for donuts or me to bring her something. She isn’t anywhere. My mind still lives in escape mode, that she is alive, she will just be back later. Passing buildings where she might be existing inside and return from “later” tears open my mind’s game and rips me back into reality. The worst feeling I’ve ever felt. I hate this life. The only escape is sleep and alcohol.

Hello.  We haven’t talked in quite some time I know I haven’t been the best Of moms, hello, I’ve been traveling in the desert of my mind And I Haven’t found a drop Of life I haven’t found a drop Of you, I haven’t found a drop I haven’t found a drop Of water Water I try desperately to run through the sand As I hold the water in the palm of my hand ‘Cause it’s all that I have and it’s all that I need and The waves of the water mean nothing to me But I try my best and all that I can To hold tightly onto what’s left in my hand But no matter how, how tightly I will strain The sand will slow me down and the water will drain I’m just being dramatic, in fact, I’m only at it again As an addict with a pen, who’s addicted to the wind As it blows me back and forth, mindless, spineless, and pretend Of course I’ll be here again, see you tomorrow, but it’s the end of today End of my ways as a walking denial My trial was filed as a crazy suicidal head(read the rest)

begin again after child dies

It has been ten weeks since Rachel died and it has been pretty rough. So easy to fall apart and just sit with the grief.  Living with the grief can easily kill a person.  It’s not just the fact that she is dead, I’m only now starting to deal with the disease and what it did to her.  The disease took away so much from her over 10 years and I was too busy being a Mom to process the disease.  Being a Mom without Rachel takes up way less time now so being sad and thinking about things, being left with my own thoughts, can bring me to the edge. I’ve been struggling with good days and bad. I’ve stopped talking to just about everyone I know.  Left with my own thoughts. The Colorado summer sun arrived and my ability to continue walking and get my steps in got really hard last week.  So… I joined Planet Fitness and have been going there everyday since.  I have tried tanning twice and my white parts are red.  I don’t think tanning is for me. Last week I gave myself 14 days.  If I couldn’t make a noticeable improvement within myself(read the rest)

I was at a Memorial Day BBQ this weekend and found myself with other parents who both have children the same age as Rachel was (should be). All of our children should be starting their senior year and living through all of the milestones that this year of life has to offer. College tours, homecoming, prom, senior pics, graduation.  The other parents knew that my daughter had recently died and yet they found it fitting to complain about having to pay for senior pics, cap and gown fees. Money, from what I can gather, is not an issue. Parents just complaining about the added expenses of their children, their healthy children, moving to the next stage in life. I burst into tears, behind my sunglasses and looked away, toward the field we were sitting next to.  Wishing I had my daughter back, healthy.  Knowing she’s not coming back, wishing the ground would swallow me whole. If you know someone who should have a child around the same age as yours, please try and be careful with them. We’re sore.  Sensitive. Broken hearted. We’d do anything to not be wearing the shoes of a grieving parent. Well, anything except trade with(read the rest)

Tomorrow night will mark seven weeks since my oldest child died. This has been a hard seven weeks, and even longer eight years of her disease taking over, slowly killing her. The kids and I are doing alright, some days are better than others. I find that it is hitting Boston the hardest but he has always been sensitive like that. I love them all so much. An unfortunate and unexpected side effect of such a tremendous and profound loss of my daughter has been involuntary urination in my sleep. I have urinated in my sleep three times since she died. Last night was, by far, the worst. I was soaked. I don’t know what is causing it. I am totally sober, getting in plenty of water and nutritious foods and walking several thousand steps every day for my health. This catastrophe happened three hours after I went to bed, and I went to the bathroom right before I went to bed. So fucking embarrassing. I decided to blog about it because I figured there is somebody else out there who is going through something really hard and maybe, just maybe they’ll Google search this and find me. And know(read the rest)

Rachel's Birthday

Tomorrow would be Rachel’s 17th birthday if she were alive.  It is going to be a really hard day for me.  I’ve posted an event on facebook asking folks to do something special for her birthday.  Try veganism, eat a cake, donate to a food pantry or animal shelter.  Something.  Here is a link to the event on facebook: https://www.facebook.com/events/116765288898308 I knew she was going to die but it never really sunk in until she did. Life is so short.

Since she died and even before, Tuesdays are my hardest day of the week.  It is the one day of the week that the triplets are in their homeschooling enrichment program.  A day that I am without children to keep me distracted.  Today was pretty hard, I have been feeling pretty terrible since Rachel died and I forced myself to take a 3-mile walk to distract myself during what I will call “lunch”. I only started to feel better after the kids came home. I’m pushing through.  Next week is their last Tuesday at school before the summer. Todd and I are taking them sandwiches and will be joining the school’s “last day” picnic. I can’t believe next week will mean they head into 5th, 6th, and 8th grade.  It’s crazy how time flies. Rachel, if not for Batten Disease, would be going into her senior year next year.  Is that even possible? Rachel, if not for Batten Disease, would be going into her senior year next year.  Is that even possible? Is that even possible? Still waiting on the necklaces to arrive via UPS. As a distraction, my mind has been thinking of tiny houses and yurts. I love(read the rest)

It’s easier said than done.  Having your child die. For years I could speak about having a terminally ill child quite easily as I had clearly removed myself from what that really meant.  I sit here next to a box of ashes that holds the true meaning of “terminally ill” and I am frozen. After she was diagnosed with Juvenile Batten Disease I set out on many road trips to take her and my other 3 kids places, while we could.  Making the most of life, making loads of awesome memories.  On every road trip, as the kids were listening to books on tapes or watching a movie, my mind would always wander and I would think long and hard about what I wanted to do to celebrate her life when the time came. My rule, without question, was to spread her ashes within 48 hours. I have had her ashes for a week. They sit next to me while I work, sit in my lap while I stare at the wall from the couch and they either lay next to me in bed or on the table next to where I sleep. 48 hours is long since gone and(read the rest)

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