Tag: life

It’s been 11 months to the day that Rachel went away. Well, closer to a year now that I let this blog post slip away and stay in draft mode. I’ve been talking a lot with the kids and having conversations in my mind about what I am doing with my life. What kind of Mom I am.

When Rachel was alive but getting worse because of Batten Disease, it became more difficult to leave the house. I was able to get her out of the house but it was really hard to accomplish and we could only go out for very short periods of time towards the end because of the bathroom and she couldn’t bear her own weight long enough to safely transfer from her wheelchair to the toilet. She didn’t really want to go many places because it was hard on her and loud.

In private moments away from Rachel (when she was in school) I would talk to the kids about what we would do when she was gone. It was a shit conversation to have with them. Knowing that their sick sister was holding them back from living life, knowing that I would one day be without my daughter. But I promised them that one day we would be able to go and DO THINGS. We are coming up on a year and I’ve started to fufill that promise.

It isn’t an easy task to get over the mental block of depression and anxiety that I seem to be left with. I shower, get dressed, have clients, a part time job and I take pretty good care of my kids. But something about getting dressed and LEAVING the house for reasons other than working at Amazon or buying food is really hard. I wish I knew why. This is the house where my daughter died. I hate it here and I definitely feel better once I am gone.

I’ve called this last (almost) year “The Gap Year.” A gap year is often how you describe the year after high school or college that young people take to find themselves before taking the next step of college, graduate school or getting a real job. In my case I need to get a real life. I don’t want to leave my dead daughter behind in this process and maybe that’s why I have been tied to this house. Before she got really “sick” and affected by Batten Disease we used to go places, take road trips, visit amusement parks and go to the movies. (Movies with a lot of dialogue so she could follow along).

I’ve started a small list of things I want to do and places I want to take the kids to see. But the gap year isn’t over yet and the weather still mostly sucks. If you have any suggestions for things to do this summer, please comment below.

It has been 347 days since she died. It is so hard to believe.

The featured image is the kids on St. Patrick’s day. Green sprite.

Last night was a disaster.

I work at an Amazon warehouse about 28 hours a week at night / on the weekends. Lots of deaf people work there and in order to help the deaf and the hearing communicate, Amazon periodically offers (optional) basic sign language classes.

I went to my first class last night. The teacher and interpreter come in, both awesome and friendly.

What are the odds that the teacher’s name is Rachel, the same name as my dead daughter? I fought back tears the whole class, tried everything I could think of to hold it together. Seeing her sign the letters for R a c h e l repeatedly, knowing my daughter could never have learned to sign because she went blind. It was too much.

I am so upset that I couldn’t control my emotions, in public, for the first time since she died.

I am angry that my grief is public and I feel exposed.

My grief life and my fake work life have intersected. I want to quit.

I tried to cry it out in a bathroom stall but had to stop in order to clock in to start my shift. Standing in the time clock line, dozens of people saw me crying. Another grieving Mom dragged me into the bathroom and waited with me while I ugly cried. I stayed after the class and worked my shift.

I DESPISE how I feel when I cry in public. 3 more classes to go…

I’ve been busting my ass this past month.  Trying to bring myself back into the land of the living.  Therapy, a physical, multiple medication appointments to slow my racing mind.  I’m redoing our website for Geek Media in line with coming back from England.  Headed to England in a week and a half.

I signed up to start a 500 hour, comprehensive, Yoga Teacher Training as I want to teach yoga classes for grief and healing.  

Rachel died 188 days ago.  6 months without her, it feels like she died yesterday.  People think that losing a child gets easier with time and I can say after 6 months it seems to be getting harder.  I know I’ll never be “right” with her death.  This trip to England should have been organized by Rachel, not taken in her memory.

London and Boston had their birthdays and my kiddos are now Forever 16, 13, 12 and 11.  

I have been offered a part time job at amazon at night sorting packages for delivery.  I’m actually looking forward to it despite the low wage.  An excuse to get out of the house in a 1 million square foot facility, 4 minutes from home… I’ll be hitting my step goals for sure.

My thoughts are all over the place but I wanted to put them on paper. I’m trying to decide if I want to bring back my fundraising for Batten Disease.  No one I know in Denver, now, knew Rachel. Could I get people interested?  I finally started meeting people just in the last week out here. I had friends before she died here but everyone has pretty much disappeared.  Anna hasn’t left me, and I know she never will, but we have a bit more distance between our houses.

I imagine its frustrating for those who haven’t been through losing a child because they want you back to the way you were, the person you were.  The thing I enjoyed the most before she died terrifies me (4 wheeling).  Be kind to myself is what I keep on hearing.  Self care is another big phrase that gets spoken.  I’m not even sure what self care is.  I get sleep, I drink water and eat healthy and exercise but I think there is more to self care than just that. I have the rest of my life to figure it out.

I am definitely hoping to hold some kind of memorial for Rachel next year around her birthday in Massachusetts.

To fundraise for Batten Disease.  That is the question…?

The featured image in this blog is me and my youngest in a yoga class in Denver.

Nantasket Beach in Hull Massachusetts

We’ve been in Boston (well, Hull Massachusetts overlooking Nantasket Beach) since Sunday and have seen so many people we love and miss.  Friends and family.  People who have seen Rachel decline since 2009 and were able to hide their sadness after seeing her decline of 9 months (since we moved) better than I expected.  I have only cried once since being here, maybe twice.  Not bad, all things considered. Continue reading “Hull, Massachusetts trip during Easter 2015” »

The merry go round that is my life seems to be spinning faster these days. John moved to Denver on Friday and is staying with us for 10 days. It is pretty interesting to have him in my home after so many months apart and so many bad feelings between us. This is for the kids and hopefully we will be able to be somewhat nice to each other for them. Continue reading “December 8th, 2014” »

I am interested in Animation,Warner Brothers, Marvel , DC Universe. and photography  Im interested in Animation cause when i grow up i want to make animations for my kids and i watch cartoons all the time and i really want to know what its like to make them I am also interested in photography cause i think it would be awesome to meet celebreritys also its basic so yeah. I am also a fan in marvel and dc movies and comics cause ive played the video games  and every body needs batman and ironman in there life i like this stuff cause my imagination is huge



352c474ebf2336412073e8a8289f4a7d Warner_Bros_Pictures warner_bros__by_inkwell3-d4bv2do

1972 airstream sovereign

We have a big day today. The kids are going to meet the teachers and other students attending their virtual academy tonight. Rachel is going to the Carnation Festival with Megans’s Place and will have a dinner and shower with them before she comes home. While Rachel is having respite from us (lol) we are driving to Boulder and having a BBQ dinner with our extended family in Northern Colorado. Continue reading “The airstream life” »

A lot of very big decisions need to be made.  Until they are said and done I feel like I am being robbed of my happy.  Its silly to let “the now” rob of your happy but sometimes we don’t have a choice.

I was separated from my husband for 6 months last year and have filed for divorce 3 times.  Husband came home in January at my suggestion when he was having some health issues. We are at a stale mate and he won’t separate again, and you can’t force someone to move out of the house if they are on the mortgage. We are both in ABSOLUTE agreement that we are divorcing.

So the next step is to put the house on the market.  Soon.

Last Friday I took Rachel out of her residential school after one month and am working on figuring out where to have her go next.  She and I both vote that she returns to the local middle school for now.

I also need to sort out a vehicle that will fit all of my children and a wheel chair.  Preferably that can pull an airstream or I am going to have to sell it.  The kids are so excited about the Airstream, as am I, so that would be a crazy shame considering Rachel CAN CAMP with us in it!!!

College (for me) starts back up in 5 days.  Hopefully the DCFS “investigation” will be done by then.  DCFS was called  because “someone” was “concerned” about my ability to care for Rachel.  The child doesn’t miss a meal, a bath or her meds.  So aggravating.

[dropcap] THE ROAD RACE  IS BACK!!! [/dropcap]

2014-03-14 17.09.45Last week I decided (after some gentle nudging from a few people that I love as much as the sun loves the moon) to hold a second road race for Batten Disease Research. The third Team Rachel Race 4 A Cure is being held on May 18th (which happens to be my Rachel’s 14th birthday) in Hull, Mass. We are looking for everyone to chip in either as a walker, runner, volunteer, sponsor or raffle donor.

Please get in touch with me if you can help at team@teamrachel.com – click here for more information on the road race!

We’ve raised a lot of money and donated it all to research and would love to see several thousands more!  I know this is a rare disease and it seems hopeless but research into Batten Disease also helps other brain / neurological diseases like Alzheimers, Parkinsons, Multiple Sclerosis, Huntingtons and so many other rarer diseases which you hopefully never have to learn about.

So excited! Road Race meetings are being held every Wednesday night at my house 8pm starting Wed, March  26th!  <3

2014-03-08 09.44.19-1I feel like I have turned into a caterpillar these last few weeks.

I feel silly using the caterpillar to butterfly analogy. Like, please don’t bring it up to my face, but it’s such a valid feeling for me.

The last few years of my life have focused on taking care of my oldest daughter (first) and her younger siblings (second). I have tried to take care of my husband but mostly gave that job up except for a bout of vertigo this year.

I have sat at the very bottom of the list for a very long time. I think that this is a common practice, for women (especially mothers) take care of everyone else before themselves.

It’s time to re-evaluate things and put myself at the top of the list.

2014-03-04 16.46.40Last week London hit his head really hard and was unable to remember the last few weeks and every 15 seconds was asking me the same questions over and over again.  What is today?  Why am I not at school? Where is Dad? What happened? Why am I bleeding?

He cut his lip open and was bleeding and the questions didn’t stop coming and his short term memory didn’t return so I drove him to the hospital.

I will never understand how I have the ability to stay completely calm but I am very glad that I am not one to “freak out” in an emergency.  I drove him to the emergency room for an exam because I wanted to make sure his brain was okay.  After a cat scan and a popsicle he was ruled to be okay and sent home.  Gradually that afternoon and evening his short term memory started working normally again (the biggest feeling of relief in my life).  Having one sick child does not protect your healthy kids from harm, disease, accidents. That would be fair but life doesn’t work that way.

Life is so short and London’s head injury brought everything I am working towards to the surface.  In some regards I have been putting off my morphing to keep my marriage together, to keep my house together, to keep my sanity together. How can you really live if you put off your life for other people?  Its time I stuff myself with leaves, wrap myself up, hang from my feet and wrap my body in silk.

Keep taking baby steps and before I know it, I will be myself again.  Myself, only happier and more wise.  I am so glad London is okay and that I no longer suffer from depersonalization and derealization.  Feeling outside of my body was very, very scary but if I “get it” again, I will look back at that time and know I survived it once and can survive it again.


sleeping_rachelI gave up working on the steps I am taking to a somewhat normal life during the last 7 or 8 days. This past week has been a blur and has felt so strange, very not normal. The only two feelings that keep coming to mind are:

1. I feel like I have left my baby in the maternity ward and I am home. I should be with her. It is painfully quiet at night without her yelling for me.

The first night I had the wind taken from my lungs when I snuck past her bed (in the dining room) to grab a glass of water before I went to sleep. I looked over toward her bed on my way into the kitchen and saw she wasn’t there. The resulting feeling was terrible. That feeling was actually worse than how I felt when I had unpacked her stuff and settled into her new room and walked away from her hospital cottage with an empty suitcase. AN EMPTY SUITCASE.

2. This is similar to how I will feel when she is gone forever. I’m sure friends who have lost children will tell me I have no idea what I am talking about and I respect that but this is a real feeling and it is mine. At some point, long before should ever be possible in a parent’s worst nightmare I will lose my Rachel and my house, her room, her voice will be quiet forever.

I’m holding up incredibly well. She had a rough couple of days and I am sure the nursing staff is sick of seeing my (303) area code number show up but until I feel fully confident I am going to call as often as I think I need to. I did this job for 5 years with her disease and I know every facet of it. They forgot to send home her weekend medications on Friday but I was able to purchase what she needed for the weekend from our locally owned pharmacy. There were a few other issues which they are hopefully working out. A transition this giant can’t be perfect.

I want to lay in the street in front of my house and scream “I just want my baby back” but she is not coming home. This disease has robbed her of so much and none of us will ever be the same.

Letting her go was the hardest thing I have ever done. Admitting that someone else could take care of her better than I could was the strongest thing I have ever done.

I’m exhausted but so glad to be alive and healthy.

Normal is a really funny word.  It’s a standard we all seem to want to achieve but shy away from.  When we feel less than normal we become disconnected.  I don’t really care for “normal” but “normal” is subjective.  My “normal” is a bit odd, overachieving, overly enthusiastic about EVERYTHING.  I haven’t felt myself because I have been inside my house A LOT because of my daughter’s disease, a bit of depression (I think), divorce and a handful of children who don’t want to go anywhere.  My mind has been telling me that I will go back to my “normal” once my oldest daughter moves into the residential hospital school that she was accepted into (she moves in 8 days).

Getting back to normal is kind of like starting a diet.  You binge on all of your favorite junk foods, gaining a bit more weight, and go cold turkey on THE BIG DAY!!!  My getting back to normal started a few days ago when I thought it was silly to get deeper into the hole and trying to climb out. My diet, my getting back to normal started last week when I started leaving the house.  I have taken 4 steps towards getting ME back.

I’m starting to feel myself coming back and I kind of became excited.

Step 1. In Life 2.0 is leave the house. Shopping with the Triplets. Need a replacement betta fish and to browse the Old Navy clearance rack.



Step 2. Ask for help getting through this crap and discover 2 bottles of wine left in the Airstream by my brother after surviving Old Navy and resisting the urge to bring home a puppy. The wine was the result of my honesty about how bad things have gotten for me amongst friends and family on facebook.

step2Step 3.  Say yes when someone asks you to leave the house.  The someone was my oldest brother and the kids were asleep and their dad was in the house.  I went, stayed out until far too late and had a great time harassing my nieces friends (who still haven’t facebook friend requested me, I wonder why??!? lol). I wore flip flops out in the snow because I left the house so quickly to avoid making excuses for not going.



 Step 4. Wake up after late night with brother niece and her friends (unexpected Step 3) and leave Wasabi to go SNOW TUBING with Julie, Sue and Jeep Club.


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.

License PlateI’m at a point in my life where I believe that people who don’t struggle on a daily basis with at least one major issue aren’t in touch with life.  Who they really are, what they really want, how they really feel. I have been struggling with my internal feelings of being worthy and being good enough and have been thinking about this struggle a great deal.  This really expands on my life long belief that states “everyone has something.”

I have realized in my quest for understanding that people who struggle with that beautiful feeling of believing they are good enough, believing they are worthy… These people also struggle with feeling vulnerable.

I do an impressive job of looking like I have my life together despite some very tragic details.  My husband and I have been separated since July, my oldest daughter is dying from a genetic disease that I had hidden inside of me and I live with the guilt of marrying my oldest’s father after knowing him only a week (a detail which would have prevented this disease in my daughter). Guilt over being depressed, guilt over not finding some way (although it is truly nearly impossible) to help my 3 other children foster relationships with kids their own age.

Sometimes I struggle with leaving the house. I have always hated being confined to the house so this struggle is ironic since I can’t leave my house very often due to work, a sick child and a small vehicle.

I don’t really trust anyone to take care of my children except for me and I really don’t believe I do a very good job.  This is all deep down inside stuff.  If you asked me, rationally (and I am a rational person above all else), “do you think you’re a good mother” – I would say “yes!” and feel completely confident that dozens of people who know me would gladly stand up and say the same.

I have provided my children with some amazing life experiences.  Knowing what I know now I would have done more but this horrible disease called Batten Disease came along in 2009. Road trips, Make A Wish, Disney World, meeting distant relatives, putting a pool in the backyard, chickens, camping, thanksgiving dinner every week.  The list is impressive and yet I still feel like I am not good enough as a mother.

How can I really believe that I am not worthy as a mother with what I have accomplished?  I compare it to a licensed physician not feeling worthy to be a doctor.  

I have spent some time lately really considering myself, my life, my relationships.  My failures.  My successes. I have spent a lot of the past couple of weeks in tears.  It has been hard and I am so unbelievably far from myself but I wanted to come clean. On a blog. This is as close to a confessional booth as I will ever be.

I am capable of love and loving, even when there are no guarantees that my love will be returned. Most importantly I declare that I am worthy of love.

Happy 2014.  I am glad to be here. I started this year off with an airstream in my driveway which needs more work than I have any idea how to do, with 4 children asleep in their beds and with a promise to myself to live my life as emotionally naked as possible. With true authenticity I believe my dreams will come true and the good people will stay in my life and those that leave will be replaced by more authentic people who are worthy of MY love and time.

crazytimeEarlier this year I read a book called Crazy Time, it was recommended to me by my husband (who I am currently separated from) to help get through the emotions / motions of separation, divorce or whatever label you want to put on where we are at.  Here is a link to the book on Amazon, its actually a pretty good read that explains a lot about relationships (not just romantic ones).

Crazy Time: Surviving Divorce and Rebuilding a New Life

The funny part about the book in relationship to my life is that you really can’t just build a new life when you have kids, have a dying child and work with your spouse.  Splitting up is easy enough to do, just have some wine or whiskey on hand for when the nights get lonely.  But its the aftermath of the split that you have to be super careful with when you have children.  It’s especially hard with a sick child, and having a special needs or terminally ill child will often bring families to the edge of divorce.  Loving my children means loving their father, he hasn’t done anything to me or our children that makes our damage irreversible.

It is be so easy to hate the other parent.  It is so unbelievably easy to feel angry and resentful.  I was honestly in that place for several weeks.

In the space between my spouse and myself I have learned about self discovery. And within my period of self-discovery (which is thankfully still ongoing) I have found within myself the gift of love and of forgiveness.  To forgive myself, to forgive my husband, to try and see past the negative aspects of my life that have brought me to where I am right now.  To love, to forgive to live despite some pretty miserable circumstances and to see the light in my life when there is a lot of darkness.

My life is certainly not where I want it to be.  I’d like a Norman Rockwell life.  But really, I ask you, does that kind of life actually exist?  On TV we are being sold a false bill of goods that is absolutely unattainable and leaving people feeling low, like they have fallen short.  I won’t feed into the media, into the mainstream and judge my life against what society / media  tells us life should be like.

If I can love my children, their Dad, my life in a deep and meaningful way I know I can truly sleep at night with peace in my heart. This is probably the hardest thing I have ever done (change the way I think on a primal level) but it is proving to be the most rewarding change I have ever made.

As one of my favorite musicians ever, John Lennon, said it best with the song “All You Need is Love.”

It’s the most simple, clean truth there is.

My life *IS* crazy time but I live with 4 young children and the oldest is blind, can barely walk and has dementia. Imagine old lady dementia in a hormonal 13 year old.  It is pretty horrible, truth be told. Approach my kind of life with fear and anger and the results are unbearable.  Approach it with love, a sense of humor and a light attitude and the rewards can be endless. Crazy Time.  Embrace it no matter what “Crazy Time” means to you in your life.

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