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!"

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! 

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! 

Wednesday, January 03, 2018

Dear Blog: June 2017

Dear Blog,
Sorry, I had to skip a day to deal with some medical excitement around here. More about that later. For now, let me tell you about our crazy busy June!

You may remember that we used to have a small above-ground pool in the yard. The kids LOVED it, and we spent most of the summer in it. But it was small, which limited us to 3 people in the pool at a time. We *really* want to put an in-ground pool in, but we can't on our lot. Then I was engaged in my new favorite habit, which is called "Browsing Facebook Marketplace", when I stumbled upon a local fellow selling  his GIANT above ground pool. And its wasn't round! 

Dean was still recovering from his double knee replacement so I was on my own on this project. I got my son Tyler and his friend to come help me move this GIGANTIC thing. I got it all taken apart and those strong boys moved it into the van. 

Once we got it home, I went to work getting the yard ready. You read in my post about May that I had the steps off the deck moved to the other side of the deck to make way for the pool. Then I had 9yards of sand dumped on the driveway. That is a LOT of sand! And, it had to be moved from the drive way to the back yard, by wheelbarrow. Tyler and his friend helped with two yards, and the rest I did on my own. Oh man, that was a lot of work, but for once in my life, all that hard work felt good.

Then I had to get the sand leveled. I didn't really know what I was doing, so the internet helped me some. Mostly I was winging it.

We took a break and celebrated Angela's 21st birthday. She requested a Tye-dyed cake. Dean is the cake maker in the family, and he did not disappoint! Angela was very excited to have her Tye Dye cake. She had a group of friends come over to celebrate. I have no idea why I have no pictures of that! 

There was a RUSH to get this done because 1) there was heavy rain coming and that sand is 18 inches deep on one end and it would wash away and 2) We were going to be leaving town and I wanted the pool filled and warming up while we were gone. And also, that rain would still wash away the sand if we didn't have the weight of the pool on top of it.

While the kids waited patiently for me to finish the pool, they had some other water fun. 

These two headed to Down syndrome camp. It was Axel's first every experience with sleep-away camp. He loved it! 

Once all the sand was ready, we were kind of stuck! That liner is HUGE and weighs about 500 lbs. A couple neighbors were nice enough to come lend us hand and drag it into place. 
Getting the sides up wasn't so easy either! I was frustrated trying to do it myself, and Dean wasn't able to help much because of his knees. Another neighbor came and helped us. What would we do without nice neighbors? 
FINALLY it was time to put water in the thing! It took 10 hours to fill. 
And then it was full! YAY!!!! We left town a couple hours later.

Our family was headed to Joni & Friends camp in Michigan. Unfortunately Abel isn't really fond of activities like this, and staffing for him at the camp would be a big problem. Nobody can ever quite be prepared for Abel, as he is a handful. We arranged for him to go to another camp that was staffed just for him. He had a GREAT week! He was so excited to go on his own vacation! 

 Joni & Friends was an amazing experience for our family!! It is staffed 1:1 for each of the kids who have disabilities. Those staff, called STM's (Short Term Missionaries) become like family over the course of the week. We had so much fun!

On the way, we stopped on the shore of Lake Michigan to play around.

Amos and Audrey loved it the most.

We discovered these rare finds, thought to be extinct,
do still exist! 

On the way we stopped to eat. Our kids are always very well behaved
in restaurants, and this morning was no exception! The wait staff
always has lots of compliments for our kids, and that usually leads to 
conversations about adoption, and how these kids came to be in our family.

Imagine our surprise when we asked for our tab, and and received this! 
We were so blessed! 

Once at camp there were all kinds of activities for the kids.
Amos and Audrey loved the fire truck!

Amos signs "truck".

Audrey doesn't always show a lot of interest in things
but she sure loved the fire trucks!

There was horseback riding 
(notice Asher managed to take a dangler along for the ride)

And I do mean, he LOVES them. I am missing
a bunch of pictures, but one night there was a petting zoo
and Amos was in absolute heaven with the little
pony that was there. He didn't want to leave to eat apple pie.
And horseback riding? Oh he was just beside himself.

Those who know Axel will be stunned that
he ENJOYED rock climbing! 

Almost enjoyed the rock wall too.

Asher, who loves climbing all things wasn't really so thrilled
with the rock wall. He didn't like the harness. 
He DID love the zipline though!

Our very dear friends the Stumbo family was at the house
right next door to us. Asher has a slight crush on Ellen. 

Angela also made a new friend. I have forgotten
her name at the moment. She is in her 60's. One thing I found interesting
is people often don't recognize that Audrey has Down syndrome.
But this lady looked at her and said, "Audrey, look at my eyes, what do you see?
They look just like your eyes Audrey, because we both have Down syndrome." 
She recognized Audrey's features right away. 

Our family grew over the course of camp. This is all of us
pictured with the kids' STMs. They will forever
be part of us.

Everyone commented that Angela seemed to find her way into pictures
at camp. They do a slide show at the end of the week and Angela was in an awful
lot of pictures! LOL In July Joni & Friends sends out a 
thank you card to all the STMs. No surprise that Angela was on it!

When it was finally time to go home, we stopped 
in Wauconda IL to visit my sister Ila and her husband Bob. 

When we finally arrived home, the pool was ready for swimming!

As we expected, the kids spent most of the summer 
in the pool. 

I also did a lot of running in June, working toward my goal of running
a 5K by August. I made good progress in June! 

As if June wasn't exciting enough, I also turned 50 years old. 
YAY ME! I feel like I EARNED 50! LOL
Dean pulled together a surprise birthday party for me.
I only managed to take a few pictures, and didn't get one with all of my friends.
Thanks everyone for a great birthday celebration! 

Yep, that about sums up June 2017!