Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, October 16, 2018

Down Syndrome Awareness Month: Update on the adult child

It is a sad fact that I can't follow through with anything. It is amazing to me (and to Dean!) that we
have completed any adoptions because they each require a ton of paperwork and a process that must be followed in a timely manner. I guess, for a time, God had me focused more than I'm able to right now. I still intend to do the breast cancer photos, and have actually spoken with a photographer about doing a specific photo shoot. Now to carve out some time!

In the meantime, it is also Down syndrome awareness month. We have had SO much going on here lately, I thought I'd give you a little update on Angela and all that she's been up to.

A year ago Angela entered a career exploration program with a local agency called Lifeworks. They had a pilot program going called "Small Group" at different locations throughout the metro area. Angela was in a group that was based out of the St. Paul skyway system. The very first day was difficult, though probably more for me and her staff than for her. It started with Metro Mobility dropping her off way too early, so there was no staff to meet her. But when she entered at a building she saw a huge escalator that she remembered from the one visit we made months before. She went up the escalator and found the coffee shop where we had met during that visit. She remembered I told her the job coach's number was in her phone, so Angela called her. All was good, and the job coach met her right away. The next day Angela got very lost, as in 6 blocks away (but still within the skyway system.) She found herself in the Federal Courthouse, found a security guard and told him she was lost. She was quickly reunited with her group. Of course, it was the first time they had lost anyone. Leave it to my kid. UGH!  Within a couple months of starting the program Angela was navigating her way around the whole skyway system independently, and was now acting as the leader when new coworkers started the program. This is something that is difficult for most adults! She was even able to exit the skyway, then take a city bus to a specific location, and sometimes took a couple co-workers with her. She did this successfully, and without knowing she was being shadowed by an employee who was not known to her. ;-)

In July it was time for Angela to find a job but we needed to get her through a major surgery first so opted to wait until the end of September to start interviewing.  She went on a couple of interviews but I didn't really think they were jobs that would actually pan out for her. Then her job coach took her to an interview at McDonalds. I was a little disappointed because I didn't want Angela working in the fast food industry. She is a bit food obsessed and I could just imagine her packing on the pounds! The interview went very well, and the store manager really liked Angela and her enthusiasm! She offered Angela 25 hours a week to start. I was very surprised. A lot of adults in our Down syndrome community are only given a couple of hours every day, some only a couple of hours per week. For many that is all they're able to work and stay on task. I wondered if this was really a good match for Angela, and maybe the bar was set a bit too high? I convinced everyone that 20 hrs a week to start would be better. She is paid minimum wage of $10.25/hr, and after 6 weeks will get a raise, then again at 6 months. This is pretty good for her first job, and on par with what others are getting paid for their first job.

Angela started her job with a job coach going along for the entire shift. The job coach showed Angela each task on her list. After the first day it was evident Angela could handle additional responsibilities, so they added to her list. They only needed to show her a new task once, sometimes twice, and Angela was able to complete them without assistance or reminders. Everyone has been saying how fantastic she's doing and all I can think is, "This is the same person who won't put her laundry away without lots of nagging from me!" At the end of every shift Angela is given $7 in McDonalds credit to buy a meal. The first day she came home with a lot of food. She and I came to an agreement that on Monday I will text her what she can order for the week, so now she's getting lower calorie items. She seems happy with this agreement, and it fits well with her desire to know everything ahead of time, at all times. HA!

Friday last week was the first day she was on her own, without a job coach. Dean and I couldn't resist, so we had lunch at McDonalds.  Angela was working in back when we arrived, but while we were eating she came out front.  That stinker completely ignored! She acted like she didn't see us! When she went in back we heard her announce, "My mom and dad are here!" When she came back out front, she continued to ignore us. LOL The good thing is she stayed on task, doing her job. She collects the trays, washes them, and gets them ready to be used again by putting the paper placemat thingy on, then stacking them behind the counter. She cleans all the tables and the condiment area, makes sure the beverage area is stocked with cups, lids and straws, and that all flat surfaces are cleaned off, straightens all the chairs and tables, empties the trash bins and places new bags, carrying the full bags out to the dumpster. Whenever someone comes in the door Angela greets them like royalty, with a sweep of her arm and, "Welcome to McDonalds Sir/Madam!" She says hello to the little kids, stooping to their level,  and elderly customers as well. Yesterday when I picked her up I asked the manager how things are going. She replied, "Oh my gosh! She makes our customers so happy! She even got a tip today! Everyone adores her." (Who gets a tip at McDonalds???)  The manager told Angela, "When you're done there you can go ahead and clock out." but Angela kept working another 30 minutes because she was enjoying her job.

I cannot begin to tell you how proud I am of Angela. The past year she has matured SO much, it is hard to believe she is the same person. Now she can work on that apartment she's been wanting. She's been on a waiting list for a roommate, and we hope it happens soon so she can fledge from the nest, just like all her older siblings did!

Monday, October 01, 2018

Breast Cancer Awareness 2018

It's been four and a half years since I was diagnosed with breast cancer. It seems like forever ago, and yet it seems like yesterday, all at the same time. Life is good!!! I am approaching the 5 year mark - a very important milestone in the life of a breast cancer patient! At 5 years, I can get life insurance!!! Well, that and statistically one's risk of recurrence decreases significantly.

So far I am still NED = No Evidence of Disease. You see, with breast cancer, there is no such thing as "cancer free", because it takes only ONCE undetectable cell to cross the lymph system, to spread through your body. Instead we are labeled "NED", because there is no detectable cancer found. Last spring I was all freaked out and convinced I had developed lymphoma as a result of chemo. My Oncologist ordered a PET scan, and all was well. That scan made me feel SO much better, knowing there was nothing hiding anywhere. At least nothing any scan could pick up.

So here I am.

I want to go back a bit, and share some things about cancer that I never did before. I don't know if the average person understands how devastating breast cancer can be. This year, after much thought and prayer, I have finally decided to share pictures. Not just pictures of my smiling self, but pictures of the effects of surgery. Yes, I'm going to show you pictures of my breasts, both my old and my new. I don't even remember my old breasts anymore. I don't remember how they felt in my hands or on my body. My new ones don't feel like real breasts. I can feel the implants inside them, and they cause me a few (minor) problems here and there, which I like to make jokes about.

If you are here for the first time, THIS LINK will take you to the post I wrote about the day I was diagnosed. So far in my 51 years, that was the darkest day of my life.

Thursday, June 21, 2018

Moving On

Sometimes I don't have time to write.

Who am I kidding? I am really busy, and rarely have time to write anymore. Sometimes it's just easier, and faster, to talk. We've been getting ready for some big changes here in the Garden of Eagan.   Today I'm talking about some of them.

Monday, May 28, 2018

Prom 2018

I can’t believe that little boy we brought home just a few years ago is now old enough to attend his high school Prom! He went with is good friend Corinne. They had a great time, even in the sweltering heat! 

Monday, May 14, 2018


We're in a new phase of life here, in the Ellingson/Spring household.

Angela will be 22 next month. Her older brothers were all long moved out by this age, and she has older friends in their mid 20's who have moved out into supported living situations. Angela is eager to join their ranks. Angela has been in a career development program since November, and we have been telling her that she has to finish that program before we can talk about her moving out. That seemed forever away. And yet, it is coming up in just a couple of months!

I'm so proud of Angela! She has come a long way the last two years. She continues to learn skills and improve on old ones. She takes disability transportation to her program every day. She calls me to check in at key times. She knows what she wants most of the time and is learning to advocate for herself to get it. (well, that may include taking a bottle of pop from a store when she doesn't have money to pay for it, because...well...she wanted it.)

Moving an adult who has a disability into supported housing is a long process. Thankfully some of the things - like funding sources - are already in place. Still, we need meet with agencies to find one that offers the level of supports Angela needs, in addition to having staff we are comfortable working with.  Once we find the right fit, Angela will be placed on a waiting list. We're told the average wait in our area is 6-9 months.

In Minnesota, because of the Olmstead Act, there are lots of different housing options for people who have cognitive disabilities. The level of supervision needed can be provided in a variety of settings. For those who are most independent, there are apartments and townhouses with staff just doing "check ins" and providing transportation. For those who need more support there are apartments where the level of supervision is very customizable, provided the individual can spend some time unsupervised. Electronic services have come a long way, and staff can be notified if a client isn't in bed by a certain time, or hasn't taken medications by a specific time, etc. For those who need 24 hour supervision there are group homes. In our area there are social activities galore, and an adult like Angela should have a very rich social life. I think that is the part Angela is most excited about, to do her own things without Mom tagging along or doing the driving!

How about the mom and dad? How are we handling this phase? Dean says he is not ready to see his little girl move out, but that he never will be. I think I'm doing ok, and I will continue to be fine with it all. Until moving day comes. That day I will just want to tuck my girl under my wings and keep her in the nest. 

Saturday, April 14, 2018

When the Mom Sleeps - Narcolepsy

Disclosure/awareness post. If you don't like this kind of post, move along.

I wrote about Narcolepsy and how I was diagnosed back in 2007.
Narcolepsy can make functioning, and getting things done, really tough sometimes. Oh, I get things done. That is, as long as I don't stop moving. If I stop moving, or sit down during the day, all bets are off. It is the reason I stand most of the day. Very rarely do I actually sit down. If I do, I will be drowsy, unable to carry a conversation, and if I'm not actively involved in a conversation, I'll fall asleep in a few seconds. 
But being AWAKE makes a huge difference in my ability to stay focused. Twenty years ago when I wad diagnosed with Narcolepsy, the stimulant Ritalin was the only drug available. I was miserable on it. It caused me to have chronic headaches and dizziness. I was awake, but my mind felt scattered and unorganized. It was certainly not ideal.
About the same time, the drug Provigil was nearing FDA approval. My sleep specialist told me, "Just wait! Your life is going to change dramatically with this drug!" He wasn't kidding. The first time I took it, I got SO much done in my house! I thought "This is what it feels like to be awake? Wow! I like being awake!" Because I'm hypersensitive to a variety of meds, one of the problems Provigil caused me was, oddly, an inability to sleep! I found that I could take just 1/4 - 1/2 dose and I could stay awake during the day but I would still have a little trouble sleeping at night. Because of that I resorted to only taking it when was going to be doing a lot of driving, or driving long distances. (for me, 15 minutes is a long drive and I will get very drowsy.) or when I'm going to have a particularly long day.
Then two years ago I was diagnosed with severe obstructive sleep apnea and started sleeping with a c-pap machine. Between a weight loss of 85 lbs, getting back to running, and improved sleep with my c-pap machine, I didn't feel like I needed the Provigil anymore. But winter in Minnesota, and lack of sunshine, is really hard on me. I take 5,000 iu of Vitamin D daily during the winter (dropping to 3,000 during the summer) along with several other vitamin supplements. Lately I've had so much to do, but all I can think about is napping. Our morning "get the kids out the door" routine involves two shifts of kids, and me taking an hour nap between those shifts. When the last of the kids are out the door, I often find myself headed back to my pillow and blankets. I might sleep for a couple of hours then get up, run some errands, then come home for another 60-90 minute nap before the kids come home! Considering I sleep a minimum of 7 hours at night (more typically 8-9), thats an average of 12-13 hours of sleep.
I'll admit, I can be slow to recognize a pattern.
Last week my kids were passing around a nasty cold. Behind some bottles of kid cold medicine, I found my last bottle of Provigil on the shelf. Hmmm I wonder.... I looked in the bottle and there were several doses. I took my usual dose. 
I got more done that day than in the entire week prior.
Being awake, and having ambition to get things done, is really an amazing feeling. I'm always stunned that "normal" people, those who don't have Narcolepsy, feel this awake most of the time. Within 30 minutes of taking my medication I feel a light switch turn on. The synapses in my brain start snappin. Zip! Zip! Zip!!!!! My mind starts picturing all the things I want to get done that day. And, my favorite part, ideas form! Poor Dean. He hates that part because it usually means I start a list of projects that require his help. Don't think the kids are left out, because I usually come up with some new ideas for them too, and yes, they are often met with eye-rolls. "Oh GOD! Mom is awake again!"
Life as a mom who has Narcolepsy is interesting, but it is SO GOOD to be awake!

Thursday, March 08, 2018

Four Years

A lot can happen in four years, and that has certainly been the case in our family! March 2014 was a big month for us! Some of it I don't care to remember, but other parts I never want to forget!

The first thing that happened was this! Meeting Audrey for the very first time. Oh this child!
This picture, taken in Belgrade, Serbia, was the day after I was given custody of her. She was 9 years old, and about 18 lbs.

On March 14, 2014, Audrey became our daughter. 

But really? We had no idea the impact Audrey had already made on our lives. We had no idea how she would keep me going on the days I just wanted to stay curled up in a fetal position. Our shift was just beginning to happen.

These are some pictures I've taken over the last few months. I can't believe she is 13!

Audrey has grown A LOT! She's finally wearing "tween" clothes (wearing size 10 in most clothes). But, with all that growth, she hasn't changed much. She understands English fully now, so she can follow many directions. She continues to be 100% non-verbal, and uses only a handful of ASL signs to get her wants and needs met. Audrey lives for music! She will drop everything if she hears even a single note. Although she has been in school 3 years now, Audrey does not know colors, numbers, shapes or letters. Well, at least we *think* she doesn't. Everything is on Audrey's terms, so maybe one day she'll show us that she really does know all these things but just didn't want to disclose that information! We do continue to have concerns about Audrey's lack of learning, and several doctors have suggested she has more than just Down syndrome, so we will soon be meeting with a geneticist to have some additional testing done.

We cannot imagine our lives without Audrey in it. She brings with her something so special. Her eyes speak volumes when her voice does not. We will continue to help find her voice, however that may be!

Just. Move. On.

March 24, 2014.

Four years ago.

It's right around the corner, but I cannot wait.

On March 24, 2014  I posted the worst blog post I have ever written.

I would spend the next year going through four surgeries, chemotherapy, potty training the newly adopted child, feeding therapy with the same child, and learning to navigate the world of Oncology with my family.

In 2015 the surgeries continued, and in fact I just had my 16th surgery, my last reconstructive surgery in October 2017! Someday I will be brave enough to post the pictures, because I feel they are important to share. Just...not yet.

The last few weeks I have felt very tired and run down. Going back through my blog I know what it is now. It's a combination of very long Minnesota winters and Cancerversary sluggishness. For anyone who thinks people can go through cancer and "just move on", it doesn't work that way. My body knows its an anniversary. I had to look back in my blog to see what was wrong with me! Just like our adopted children go through odd behavioral phases during their adoption month, so too do I go through a bit of yuck. The body remembers trauma. Being told you have cancer is certainly traumatic. Today I just wanted to sleep the day away. And tomorrow too. And maybe the next day. Only I can't do that, because I'm MOM to a lot of people, and I thank God for them every single day, because each one keeps me going!

I make goals for myself! I probably drive Dean a little bit crazy with some of my bucket list items that he finds around the house. For example, I was going to teach myself to play guitar. I bought a guitar, and a book, and some wonky thing to attach to the guitar. Oh, it lasted about 5 minutes before I realized this was beyond me, thanks to chemo brain!...Just move on....Just move on...

So I would learn to DANCE! Yes, I've always wanted to learn Hip Hop.  I joined a class. The first class the instructor told me I have a good sense of rhythm, and he talked me up saying, "I can't believe you never danced before." (He's such a salesman!) On the third class he added the music to the steps. HA! I can dance, just not to music. Who knew? Thanks again, chemo brain. I never went back to class. ....Just move on....Just move on....

 Before we moved to the new house I bought all the stuff to become an artist. I have done some water color years ago (YEARS!) but this time I decided to try acrylics. I bought a big easel, canvases of various sizes, an assortment of brushes, and all the other things one needs to be an artist. I have yet to pick up a brush. (I had a good reason though, and maybe now I finally can get around to it?) I have yet to pick up my polymer clays again. They sit in my closet, drying out. My mind wants to try new things, and keep moving FORWARD, away from that day in 2014 when I heard the words, "You have cancer." Because "just move on" is whispered in conversations, said gently by people who don't know  how it feels. Said to myself, because why can't I "just move on"?

You see, I can't just move on. How do we, cancer patients, "just move on"? Next month I have a scheduled check up with my oncologist. It already brings anxiety. "What if I'm tired because I have cancer again?" Last week I took Dean to an appointment that is located in the same building as my oncologist. Just parking in that lot caused my chest to tighten and my stomach to turn in knots. I started sweating and my heart raced. I wasn't even going to THAT clinic! It angers me that I was so affected by the parking lot. ....Just move on....Just move on...

This check up will be like all the others: Visit with the doctor, then blood work to check for cancer markers... Just move on.... Just move on.... Well, for a long time I only had to go every three months, but then I was bumped up to 6 months between visits. While I was really excited to be at that point, somewhere inside me screamed, "Six months? That is a long time between blood tests! What if something happens between now and then?"...Just move on...Just move on....It doesn't help that at my last visit my doctor wanted me to meet with someone to discuss my treatment plan should I develop cancer again. I won't lie. I was really angered by that. I did schedule the appointment but ultimately didn't go. I felt like they were willing me to get cancer again! Or maybe they knew something about my cancer, like that I'm GOING to have a recurrence, it's just a matter of when. Paranoia much? No Leah, "Just move on"!

Yes, dear readers, all of that goes through the mind of a cancer survivor. Most days I can just shove it back, ignoring the whispers of my subconscious mind and go about my day. But there are days when I'm hiding it from the world, but I can't hide it from myself. It's impossible to hide it, really. Every morning when I step out of the shower, the scars are reflected back to me in the mirror. So many scars! Each one a memory of another surgery. Another scare. Another day of stress to my family. Another near miss. Reminder, after reminder, after reminder. Just. Move. On.

So here we are

It's March 2018 already. I haven't finished updating from 2017 and 2018 is slipping away fast. There are life events I want to tell you about, but I keep thinking "I'll finish catching up first, then I'll do it!" Only, that never really happens. There are a lot of new readers here, and return readers who want to know what's happening with us! I think I'll just do some regular posts and sneak the other updates in when I have time. And I go!

Thursday, January 11, 2018

Dear Blogger: September 2017

Hi Blogger!

September 2017...

The kids went back to school! 
Oh man, do our buses come early this year!

We even managed to take our annual driveway picture!

One early morning as the kids were eating breakfast, I caught some movement out of the corner of my eye on the deck. The Hummers had found us!!!! With the kids off to school, I had nothing to do (cough cough), so I found myself in the sun, photographing the birds. I will spare you all the pictures, because I took thousands throughout the month, literally.

Angela and I took lots of field trips together. 
This is the famous Spoon and Cherry at the Minneapolis Sculpture Garden

These two darlings turned 13!!!!!

Audrey wears her cake well. 

Angela  had yet another CT scan done. 
She's had so many that I don't even remember what this one was for.

We went to the annual Step Up for Down Syndrome
With the Down Syndrome Association of Minnesota 
(Abel didn't want to be in the picture.) 

Our little Dorothy. This is the only time of day her
face is clean, before her very first bite of 
breakfast. I figured I should document it. 
And also, she forgot how to smile.

Dean and Axel both had a Friday off
so we took a field trip. We tried out the 
food trucks at Rice Park in St. Paul.

Goodbye September!

Dear Blogger: August 2017

Oh Blogger, we're getting there, aren't we?

Well, I have to back up to July for a minute, because I missed some pictures! I just didn't look in the right files. Silly me!

The Aquatennial Parade. So much fun! 

Notice I have a tight grip on shirts? These two wanted 
to bolt toward whatever musical group came by.

The best big sister!

This guy! He loves him some swim time!

Dean and I celebrated 14 years together!

And my oldest biological baby turned 30! Happy birthday Noah!

Now lets get back to August, shall we?

It takes 1.75 lbs of blueberries to get us through a Sunday morning breakfast!

I continued running...

And after a 22-year-long hiatus from running, I ran my first 5K.
I came in 2nd place in my age group, with a pretty decent time! 

Dean and Asher took in a Twins game with some friends.

 And before we knew it, it was county fair time!

Angela and I had several girl dates.

And we spent time at local parks.

Angela had a second sleep study done. 
She was found to have very severe Central sleep apnea
and wears now sleeps with a cpap machine. (as Abel and I too!)

And on to September we go!