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The next couple of days are going to be a little bit challenging because I am going to the mountains for a couple of days to hang out with my BFF and her 3 kids.  I have a bunch of food packed and some red wine which has no added sugar and is vegan.  Hopefully we go on a nice hike or walk but at that elevation (8,000) I might die. LOL

Banana. Red wine. Chili for dinner. More red wine for dessert.

Sleep: 5 hours 6 minutes

Weight: Gained 2 pounds

Steps: 13,849

Breakfast was a cup of coffee.  Lunch another cup of coffee and 5 mandarin oranges.  I need to be better prepared with food, our bananas aren’t ripe enough to eat. I had some leftover 5 Guys French Fries for dinner (they were free, that is my only excuse).  I felt terrible at work last night after the fries.  My stomach hurt, I felt nausea and I had to push myself to not be sluggish.  I won’t be eating those fries again. Lesson learned.  🙁

Sleep: 7 hours and 28 minutes

Weight: Down 1 pound

Steps: 15,081

Breakfast is another boring cup of coffee with plain, soy creamer. I forgot to eat my banana.

I forgot to mention that I’m not following any specific sugar free book or website. I’m simply reading labels and not eating anything with added sugar. Foods with natural fructose (fruit) are allowed and I can eat as many fruits and vegetables as I want. I’m also attempting gluten free. I don’t eat a lot of tortilla chips but when I do I make sure they’re corn chips. Julie has a friend who is gluten free so I did some extra label reading when she first started coming over. No bread or pasta. Potatoes are fine.

Today my second child turns 14 but I’m abstaining from cake. I’m going to Make Believe Bakery here in Denver and will buy her some cupcakes. It’s an amazing, all vegan bakery that has the best cakes in the city.

Another important point to mention is the supplements I am taking. No, not a plug for a MLM business (but those work for some people)… I am taking: 1100 of Omega 3 (including 660mg of DHA and 330mg of EPA, 2,000iu of Vitamin D, 500mg Magnesium, 2500mcg of B12 and a “complete” Multivitamin (which has another 1,000iu of Vitamin D). I spent a good 20 minutes reading the ingredients of each to make sure they did not contain any animal products.

12:23pm. It happened. I felt actual hunger. Stomach growling, true hunger. I was able to satiate my hunger an hour later with this chick pea salad.

These are the vegan cupcakes I picked up for my kids. The were allowed 1 with lunch and 1 with dinner. To be honest, I felt guilty feeding them that much sugar but this is a process. It starts with me, much like veganism. I went vegan 2 years ago in May and they will celebrate their 2 years in July.

I had a black bean quinoa pre packaged meal for dinner with 3 mandarin oranges (they’re tiny). The quinoa seemed much less salty. Bring on day 5!

Sleep: 7 hours and 28 minutes

Weight: Down 2 pounds

Steps: 16,042

Day 3 was a bit easier. Boston had an orthodontist appointment on the other side of the city so I was distracted from my morning hunger. I had a banana and coffee for breakfast. After he was done with his appointment we went to Safeway where they had pints of strawberries 3 for $5. We went to target afterwards to pickup a few more things for Julie’s birthday (3/29). I had quinoa (and strawberries) for lunch which tasted unbelievably salty. I have had this particular quinoa many times since going vegan nearly 2 years ago but it never tasted that salty. I think I might have been dehydrated despite chugging water. Part of the detoxification process, maybe? I was really tired before going to amazon so I took a nap.

I feel guilty napping when my kids are home but this challenge is being done for me AND for them.

I had chips and hummus for dinner with sriracha mixed in. It tasted a lot like the curry hummus which I really like but can’t often find in the area I live in. I should have had cucumber instead of chips, saving my last cucumber for Thursday’s lunch.

I drank a ton of water in both water and seltzer water form. I spent the best part of 4 hours picking up boxes and envelopes and lifting them into the sort slides at Amazon. I was sweating and my back was killing me at the end. Some of those boxes are super heavy so I got an exceptional workout today. I did not feel like my blood sugar was low at Amazon (no dizziness) and was less sluggish than on Tuesday.

Sleep: 6 hours 35 minutes

Weight: Down 2 pounds (my stomach seems to be less fat lol)

Steps: 19,009

I’ll be honest. Day 2 was a bit rough.

I had a banana and sugar free coffee creamer for breakfast, chili beans and corn chips (gluten free) for lunch, and a salad which I mostly threw out (spinach, black beans, red onions, no dressing, tomatoes and cucumber. I just ate some grape tomatoes.

I slept in today and took a 2 hour nap before I went to Amazon.

I have lost a couple of pounds already and my ring size has gone done at least one full size.

There was definitely a feeling of being dizzy and out of it today. No headaches. I think I felt light headed because my blood sugar was low (I’m guessing). I definitely would not have been able to complete a long car trip today.

Lots of water which seemed to help because I definitely had an increased thirst. Its easy to drink a ton of water living a mile above sea level but my regular water intake was not enough. I felt sluggish at amazon but managed to do a good job. I wasn’t extra irritable, there was one guy who was scanning boxes to the pallets on my side and I did consider tripping him a few times but that was the extent of my grumpy level. Much better than yesterday.

Sleep: 10 hours + 2 hour early evening nap

Weight: Down 1 pound

Steps: 14, 3204

Bring on day 3.

Today is the day. I have decided to give up sugar for 30 days. Not fruit or natural sugar but sugar added into products unnecessarily like high fructose Corn syrup, corn syrup, fructose, sucrose and any other sugar. Fructose from fruit is okay on this adventure. Potatoes are cool. Bread is out since most bread has added sugar. Corn chips are okay.

During the first day I felt a bit grumpy but I didn’t; really feel any side affects. May have been a bit less hungry but nothing was a big deal.

I had a banana for breakfast with coffee and no sugar added creamer. Lunch was a bomb salad and dinner was some left over tofu that I had cooked with garlic, ginger and added some pickled cucumbers I made.

I am doing this challenge because I want a clean mind and a healthier body. Everyone who goes sugar free seems to lose weight and can focus better than before they started this. I hope it works. I am “on the wagon” for the next thirty days.

I started label reading and can’t believe how much sugar they add to nearly everything (including things like stuffing, ketchup, BBQ sauce is nearly entirely sugar, soda, tomato sauce, bread.

Sleep: 6 hours

Weight: Not telling but I’ll tell you how many pounds I’ve lost.

Steps: 13, 052

Day one is over. Bring on day 2.

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.

This is how I like to remember her…

The picture with 2 of her siblings (the little one wasn’t born yet) also features my brother, Clive.




When Rachel was little she loved a boy who had cancer. She was a sweet soul who only saw the boy for the boy, she did not see the affects of cancer on his body. After having cancer for a long time, he died as a result of having Neuroblastoma.

It is no secret that I didn’t put myself or Rachel’s brothers and sister through having a funeral for Rachel.

Instead, in March, I am going to shave my head (for the second time since 2006) in honor of Rachel’s friend, Nathan and all kids who have survived cancer, who died as a result of cancer or who are currently fighting cancer.

St. Baldrick’s raises money for pediatric cancer research and they hold fundraisers all over the United States, where folks raise money through donations and then shave their heads.

I am shaving my head on March 16, 2018 and am asking for donations. For Rachel. For Rachel’s friend, Nathan. For any child you know who has or has had cancer.

Please follow and donate to the tax deductible St. Baldrick’s fundraiser by clicking on this link.

I shave my head back in 2006 for St. Baldrick’s. This featured image on this post is me and Rachel as I was pregnant with her youngest sibling, Boston. My hair was growing back in.

Please donate. Please share. Pediatric Cancer is such a underfunded and curable cluster of diseases.

Something I want to write down to remember, to put into words…

When Rachel died, a small part of me felt relief.  For me.  For her.  Some people who have a child die after a very long illness don’t feel this way and some won’t admit to feeling this way. But I felt a small piece of relief when she died.  I feel incredibly guilty for this feeling.  My daughter died after suffering for a long time.  It wasn’t, usually, painful for her.  But emotionally, she missed out on several good years of life.  Batten Disease robbed her of her sight, her ability to walk, function normally, her friends and her childhood.

It got harder and harder to take care of her.  Listening to her talking incessantly.  The diapers that followed.  She couldn’t leave the house, she didn’t really want to leave the house.  It was really hard on her.  Hard on me. Hard on her siblings.

There was definitely a strain on our relationship that grew more obvious to me as she got more affected by Batten Disease, as more of her brain cells died.  I am sure that part of my feeling of relief comes from the strain on our relationship.

This is the part I really want to write down:

When I look at Julie and see how smart and awesome she is and reflect on my relationship with Julie (and her brothers) it makes me realize how much this disease really robbed me of.  What it robbed Rachel of.

When I think of what it would be like to have a healthy, nearly 18 year old daughter, it brings me to my knees.

What would it be like?  It’s a daydream I try not to have very often because it’s a reality I will never know.

One that I would do anything to have.

I miss her so much.

Rachel Eileen

Rachel Eileen, Age 5.

They aren’t really triplets but so close in age that I started calling them that, especially after Rachel was diagnosed. It was easier than saying 1, 2, 3 and 4 because I knew at some point “Thing 1,” Rachel wouldn’t be here. And here we are.

This is a picture of the kids taken by a photographer at their Homeschool Enrichment Program. I purchased the rights to share this picture on social media and make prints but I think she deserves credit. 🙂

Elizabeth Osberg Photography

Lots of folks still haven’t updated their website with 2018 copyright information as well as added their social media (Facebook, Twitter, Instagram, LinkedIn) to their website. Give me a shout and I can make updates for you… inexpensively. Adding a cute image giving a nod to our London trip for attention. ❤

I forgot it was picture day at Homeschool Enrichment and I’m on a budget so I didn’t buy any packages. I took these of the kids, quickly, as we were headed into school. The bottom picture is Rachel from a few years ago while we were waiting for the bus.

Julie

London

Boston

Rachel : 2014 or 2015

My Aunts, Uncle, Cousins and their kiddos + dog went to visit my Rachel right before Christmas. They made her a Christmas tree out of roses. She would have like to have touched the tree, very tactile for a blind kid.

How I wish things could be different.



Someone left a present each for me and the kids on our doorstep on Christmas morning. It was very thoughtful but I’d really like to be able to thank the generous soul. Thank you very much. Please come forward, I’d feel really good to be able to thank you.

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