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!"

Monday, May 14, 2018

Transitions

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.
Narcolepsy.


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!
SaveSaveSaveSave
SaveSave

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 so...here 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! 

Tuesday, January 09, 2018

Dear Blog: July 2017

Well hello there, Blog!

Yep, I've been really busy the last couple of weeks. Between sick kids, including Abel in the hospital with pneumonia, Christmas and New Years, I got behind. Again. I intended to get all caught up before 2018! Oh well. I'm back now.

So July 2017 was really busy. I know it was, but I can't seem to find any photographic evidence. Apparently I just spent a lot of time with the kids, enjoying our time in the sun!

You may remember we fed several hummers over the summer months. They didn't find us our first summer here, so I hoped they would this year. They usually arrive in our area the first week of May, so I put out my feeders the last week or so of April, hoping to entice a pair or two to hang out in our yard. Even though I kept refilling the feeders with fresh nectar every couple of days, by July I had given up hope of being discovered by the birds.

Like a lot of people in Minnesota, what we DID get is an invasion of Asian beetles! They are nasty things, killing trees all over the place. My outdoor plants and our trees were attacked. We were able to save the trees before they were completely decimated. Unfortunately some of our trees were gotten by a fungus that destroyed them, so they'll be coming down this spring.

The 4th of July came and went. The only kid who got in front of the camera was Amos.

 A friend was moving and her dog stayed with us two weeks. He joined me on some runs. His name is Dudley, after my Dudley who passed away two years ago.

I re-discovered my good camera. Now I just to relearn how to use it! LOL

Audrey happens to love the camera, even though she refuses to smile.



And that, blogger, is the last of the photographic evidence of July!