Tag: school

Rachel started 10th grade this week and is having a great time. She has a new teacher named Ms. Nicole and 3 bus drivers and aids! She is doing great and enjoying being back to school and I am having a bit of a break and Rachel having a break from me.

Her walking is quite impossible, watching her fall apart has been killing me.  It’s emotionally hard, physically hard on me and on Rachel but her appetite is great and is enjoying her movies and iCarly.

She is dying to meet Miranda Cosgrove and Jimmy Fallon.  Any suggestions for making this happen would be great!

Rachel Vontungeln 15

I haven’t blogged in forever and I owe myself an apology.  I need this blog.  For posterity’s sake (my memory is shot) and to get my feelings out.  Feelings. I sound like such a bitch.  Feelings. FML.

I texted my landlord in December to see if she had any larger homes for rent and within a few weeks I was starting to move my kids and all of our crap to a new home in Northeast Denver. Continue reading “2016 is here and so are we” »

Julie, London and Boston's first day of school 2015

Today Julie, London and Boston started back to school (6th, 4th and 3rd grades) and tomorrow Rachel will return to Fletcher Miller (her special needs school).  Looking at the raw pictures I took early this morning I realized I should have put more thought into photo composition.  All of the single pictures remind me of mug shots.  Ha. The featured image on this post is the only decent picture that doesn’t make my kids look like they’re headed for the slammer.

Boston, on the left, has the perfect “I don’t want to go back to school” expression that we all felt this morning.

The summer has come to an end and its time to pick up my website work load.  Time to recover from “back to school” expenses and start saving for Christmas. 🙂

I put my three younger children into public school for the last 7 weeks of school as I have been taking a “Nursing Assistant” course for Rachel.  Both school and the course ended on the same day and I’m catching up on work.  I need to apply for and pass the state exam, hopefully I will get an appointment quickly. Continue reading “School is out for the summer” »

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” »

I’m watching Rachel stuff herself a few feet from me with some pancake donut holes that you can buy at Trader Joes.  It’s a Tuesday morning at 8:40 and my triplets (my other three children who are unaffected by this disease (I call them the triplets) are all at school. A little over a month ago I sent Rachel off to a new residential school and we lasted a month.  They offer some amazing activities there for kids who have a wide range of disabilities and I highly recommend the place.

But the place just wasn’t for us.

She’s home for now while we figure out the next step.  If the decision were hers she would return to the Middle School she was attending but we have to consider another option as well before she (hopefully) gets to return to her old school.  She is sitting in her recliner under an electric blanket and listening to Sesame Street on Sprouts.  Happy as a clam.  I followed my gut and I’m happy about my decision to bring her home.

My favorite part about her being home?  She is walking up and down the stairs and sleeping in her old bunk bed in her old room with her little sister, Julie.

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.

Rachel completed her first week at Massachusetts Hospital School.  Tuesday was a long admission process and she stayed at school until Friday night.  The school receives students (patients) on Sunday afternoon and sends the kids home on Friday afternoon.  The activities they offer to their student population cannot be compared at any other facility that I have ever heard of (swimming, horseback riding, water sports, bowling, cooking, music, PT, OT, ST, TVI and the list goes on… WOW!).  Over 90% of students are in wheelchairs and Rachel attended summer camp at the school.

The first week was hard on Rachel but Meredith and I visited her Thursday night for the monthly themed dinner (event) to check up on her and help her feel more grounded. As difficult as it was on her with her blindness and dementia, she did not get upset when I put her on the van today (Sunday) to return to school.

Rachel has a 1:1 person with her from the start of school until 9pm and it turns out that Gina (her 1:1 from public school) has been assigned to work with Rachel during the school week!! This made for a much easier transition on Rachel (and me).

This is not the best picture but I took it of her on Thursday night after I had tucked her into bed.  She doesn’t have a roomate (yet) and is quite pleased that the TV in her room has Sprouts (her favorite channel).

2014-02-27 20.10.11

Rachel, blind, bakes bread with her TVI, AnneliseAnnelise and Rachel have done it again. Fresh bread!!!! Best homemade bread I have ever had and the house smells great!

 

Blind Rachel bakes apple pie with her TVIWith the help of Rachel’s brilliant TVI (Teacher of the Visually Impaired), Rachel is starting to cook in school and bring home delicious treats to bake in our oven.

Our home smells amazing, I am getting fatter and Rachel has a huge self esteem boost! This is week 1: apple pie!