Tag: jeep

Look no further.  They exist and are made by a company called Access Unlimited in New York. Now I have to win the lottery or sell a kidney.  I don’t think organ sales are legal?

Here is a link to the pdf quote I got to have this made for our Jeep to suit Rachel. $6500

Not being able to do the things we used to do and go the places we used to be able to go is taking its toll on me and the kids. We have the van which was generously donated by our friends, family and wonderful strangers through GoFundMe but it’s 20 years old and not reliable enough to go long distances.

Does anyone out there have one of these? What do you think?

www.accessunlimited.com

This is the last couple of hours where my boys are technically both 8. Today is London’s 9th birthday and on September 30th Boston turned 8. A gift that I mentally decided to give the boys was being on my phone less. Facebook, while fun, is a huge distraction for me. My iPhone takes pictures, easily, but doesn’t provide me with the quality I’d like to archive long-term.

I have a really nice camera which I splurged on but haven’t really used it. It is pretty stupid. I have 4 beautiful children and a gorgeous jeep. The season is autumn and the leaves are gorgeous.

So this afternoon I handed the boys specific colored shirts to contrast with each other but also to celebrate the season. I like the fall, I think just about everyone I know would pick this as their favorite season.

New England definitely has prettier foliage than Colorado but it is still beautiful here. I haven’t spent an Autumn in Colorado since 2005 when London was born at our home in Colorado Springs.

Here are my “Irish Twins.” London is wearing a burnt orange waffle shirt and Boston is, well, Boston. Boston always needs a haircut or he looks like he has just been cured of lice. Love my boys.

The boys climbing Token

The boys climbing Token



London is beat by his little brother climbing up

London is beat by his little brother climbing up



A perfect autumn day

A perfect autumn day



London, just hours away from being 9

London, just hours away from being 9



This picture sums up Boston perfectly.

This picture sums up Boston perfectly.



Boston trying to... breastfeed?  Had to share this one even though it is totally out of focus.

Boston trying to… breastfeed? Had to share this one even though it is totally out of focus.



Boston is a really smart, energetic child.  And loves to spend my money.

Boston is a really smart, energetic child. And loves to spend my money.



He is constantly "fake smiling."  Capturing one that is real is usually pretty hard because when it usually indicates he is up to mischief.

He is constantly “fake smiling.” Capturing one that is real is usually pretty hard because his smile usually means that he is up to mischief.

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.