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!"

Wednesday, December 31, 2014

Good Riddance 2014

Dear 2014,

You were not super kind to us. You are certainly not my favorite year. Thankfully many of our really good memories of you are related to Audrey, getting her home and watching her grow and thrive in our family, as well as memories with the other kids.  But you also brought with you Cancer, many surgeries, chemotherapy, mastectomy and the beginning stages of breast reconstruction and much heartache to go along with it all.

You, 2014, are done. Good Riddance! 

Saturday, December 27, 2014

Just One More Time Mom

When my adult kids were little, there were several occasions when they were involved in some REALLY fun boy activity, like BMX racing. Eventually the time would come to load up the bikes and go home. I'd holler to the kids it was time to wrap things up, to be met with, "Just one more time around Mom, ok?"

If your kids EVER say that, STOP. Stop all activity RIGHT THERE. "Just one more time" is a warning from the universe an accident is about to happen! DO NOT allow the activity to continue. It took me a couple times to learn this lesson, but learn I did after a couple emergency room trips for stitches with a kid or two.

There was also that one year, at the end of summer. The night before school started I made the mistake of saying to my sister, "Wow! We made it through the whole summer without any stitches or broken bones!" Silly me, there were still a few hours of summer left! By summer's end just a few hours later Tyler was sporting 80 (yes eighty) stitches in his head.

You think I'm going to tell you someone here got hurt. Don't worry, I have not done any prophesying over any activities around here so as to jinx the kids. Instead I thought things in my head, about me.

In my Christmas Eve post you may have picked up mention of a hospital visit. (and of course those who follow me on FB know about it.) On December 20th I started running a very high fever (103) and thought I was coming down with the flu. By morning one of my reconstructed foobs was hot and swollen, feeling like it was going to burst open. I ended up in the hospital ER, having a large pocket of fluid aspirated, then being admitted for a couple days of IV antibiotics before having surgery December 23rd to remove the tissue expander on that side. We left the other side alone, but the troublesome side I will have to start all over with reconstruction in a few months. I made it home on Christmas Eve and we still had Christmas here with Dean's family on Christmas Day.

But through all of these problems I've had through the reconstruction process I have always thought to myself, "Well, at least I'm not one of those women who end up dealing with necrotic tissue and open wounds."

Do you see where I'm going with this?

Yesterday my new incision opened up.

I've talked to my doctor and learned how to care for the wound until I see her in clinic on Monday. The problem is a large area of thin skin left from my original surgery back in September. I just doesn't heal well. I'm not a happy camper. That side now looks like a horror movie.

And so I'm going to stop thinking. Anything.

Wednesday, December 24, 2014

Twas the Night Before Spring Christmas

Twas the night before Spring Christmas
when all through the house
the people were frantic
without Mom about.

The stockings were hung
the packages wrapped
in hopes that our Mom
soon would be back.

When what to our wondering ears did we hear?
Dad and Mom home from the hospital
and Mom with good Christmas cheer!!

We ate Christmas Eve dinner
and Dear Abel soon crashed,
But the rest of us soon to the kitchen we dashed!

We got Santa his cookies and wrote him a note

We read the Christmas eBook, the paper one lost and remote.

Then Mom, in her infinite wisdom did say,
"Lets  dance to some Jingle Bells to end our great day!"

And we each heard her exclaim
As she tucked us in tight,
"Merry Christmas my loves! I am so blessed tonight."

Friday, December 19, 2014

The Bucket List

Our mortality has a way of slapping us in the face sometimes. Cancer will do that to people. It causes people to realize they have a lot left to do. I have a few things on my list I have always wanted to do but never had the time, money, or the guts to try. Here's my list, in no particular order:

1: Ballroom dancing - ok really I would like to try any kind of dancing. Well not ballet, as I would be an insult to the art. But Ballroom, hip hop, Jazz, Tap…all of those. I want to try something.

2. Skydiving. Actually Angela and I want to do it together but I think I'm too afraid to do it.

3. Ziplining. I want to go to some tropical place and ride a zip line through the jungle. As long as there are no snakes I'll be fine.

4. Visit Australia. I need to make this happen soon so I can see my friend K. We have known one another for about 10 years through the Down syndrome community. A few years ago K. was diagnosed with stage 4 breast cancer. They day she told me I wanted to jump on a plane right then. Somehow I need to make this happen.

5. Honeymoon. Dean and I still need to go on our honeymoon. Maybe we'll do that in Australia?

6. Be on a talk show. Seriously. Ok, not likely to happen but when it does hopefully its not Jerry Springer or Maury Povich.

7. Learn to sculpt with clay. I want to do it for real and make  nice stuff. I just need to learn HOW.

8. Tae Kwon Do. Yep, I want to do that too. If I do ballroom dancing and TWD at the same time, I should get into pretty good shape, right?



Ok, thats all I can think of at the moment. I know the others will come to me as they frequently do during the day! How about you? Whats on your bucket list?

Sunday, December 14, 2014

In Memory of Sandy Hook

Today our nation's heart is heavy as we remember this day, December 14, 2012 at 9:35 a.m. when we cried out first in disbelief, then anguish as the faces of 20 darling children and the 6 adults who tried to protect them appeared on our TV screens. Twenty six lives lost in a matter of a few seconds.

Today my heart aches with the family of my high school classmate,  JoAnn (Jo Jo)  Bacon, her husband Joel and son Guy as they continue to find their way in life without their precious Charlotte.

In memory of the lives lost the organization "Where Angels Play" was started, dedicated to creating accessible play spaces in the names of each person lost on that fateful day. If you're ever in the West Haven, CT area you can visit Charlotte's Playground. You can find the others on the playground locator by clicking here.

Charlotte family also started their own organization in memory of Charlotte and her love of all animals, especially dogs.

The mission of Charlotte's Litter is to create a team of therapy dogs all around the country who can respond in a crisis situation. As a dog owner and trainer, I can vouch for the comfort dogs and other animals can bring into stressful situations. 

Today, in memory of Charlotte, I would like to ask you, my readers, to consider donating to Charlotte's Litter.  And today, hold your children a little tighter as you remember the families of Sandy Hook who must carry on.

Thursday, December 11, 2014

Never say Never

In April 2010 I met a tiny little boy in Serbia. His name was Sasha and he was just a toddler, not yet two years old.  But Sasha was different than all the other kids in the the institution. Sasha is a congenital quad amputee, meaning he was born without arms or legs.

 Little Sasha had an amazing spirit that carried him through the months he had spent in the institution.  Although he was living in an environment lacking in stimulation, he did his best to play with the few things provided to him. I knew at that time that Sasha's family was on their way for him. Just a couple more months and they would be holding him in their arms.  Never again would he spend his days laying in a crib, calling out to caregivers who only answered when they had a spare moment.

Soon, in June 2010, HIS day arrived! It was finally HIS turn. Devon and Jeremy Toomey answered the call to bring their little man home. They named him Bowen.

When they arrived home in the US, they sought out services from Shriners and local physical and occupational therapists. Along the way one therapist did an assessment and proclaimed that Bowen would never be able to sit up on his own, much less get around any way other than rolling on the floor. But the Toomeys knew better. They knew they should never try to limit their child.

Just a few months later Bowen sat up on his own.

Bowen struggled his way through lots of skills: Learning to crawl, to play with toys, to feed himself, to chew his food and accept food with different textures. But, have I mentioned that Bowen is an amazing kid? Bowen conquered all those things.

Next came swimming, 

And using his helper legs
(the feet are backward to give him better balance)

Using the iPad when he visited our house.

Keeping up with his brothers is important to him. He wants to do everything they do, and he does!

Bowen is a big guy of six years old now! You name it, he is learning or has learned to do all the things little boys his age do. Nothing stops him. Even when things are hard he is determined to succeed, or at least give it a good try!

Bowen is in school now. Check out his latest skill: writing. I know many of my kids could not write this well at 6 years old!

To the therapists, the doctors, the "specialists" who see kids like Bowen all the time, and to parents who  are considering adopting a child with special needs, please…if you listen to nothing else…listen to this one thing:

NEVER listen to "NEVER". 

Wednesday, December 10, 2014

A Little About Us

This is a repost from 2011, with some updates in italics.

This is for all of those who are new here, who haven't read all the way back to 2005 when I started this blog. LOL Seriously, I have been blogging since 2005. Wow.

 15 interesting facts

I'm Leah, and that's my guy Dean up there who I'm clinging to. We love each other to pieces! Seriously, life just gets better and better. Dean and I met on August 22, 2003, and committed our lives to each other in July 2005. We have trouble remembering the date for some reason. It's either the 23rd, or the 27th. Or maybe it's the 24th. (if we were smarter, we would have just done it on the 22nd so we didn't have to remember another date! Shees!) Seriously, every year we have this discussion, and I have to call my sister who's granddaughter was born that same day which is why she wasn't present for the event...cuz she was busy catching a baby. Except she's usually waiting to call me to ask when our anniversary is so she can wish her granddaughter a happy birthday. Clearly it's a family thing. We like August 22nd better anyway. And just so you know, there is a reason we can't remember the date, and it has to do with the fact both Dean and I have a couple anniversary dates running through our heads, mixed in with birthdays of kids. But really, August 22nd is that date that is important to us, because that's the day our lives changed forever.
July something, 2005

15 Interesting facts.  (this is gonna be tough, because I am not that interesting!) So, in no particular order:

1) I was in the U.S. Army for 8 years. I was active duty reserve for 3 of those years, and then I went IRR after my second baby was born. I LOVED the Army and wish I had stayed in longer. But I was young and dumb. And impulsive.

2) I have been married a lot. It goes back to that impulsivity thing. I first married when I was just barely 19. I'd known him 3 months when we got engaged, and we got married on our 7 month anniversary. I'm pretty sure I caused my mother some psychological damage. But, I had two beautiful boys with him, Noah (27) and Tyler (26). We were separated within 4 years and divorced shortly after. I was young. And impulsive.

3) When I was 26 I remarried. This was not on an impulse, and we'd known each other more than a year by that point. He had two boys who I consider my own, since I raised them for 10 years. Rob will soon be 29, and Bryon 26. Together we had Angela. We were married 9 years. I learned some things.

4) When I was ready to let someone into my life again, I made a list of qualities that must be met by anyone I dated. He must have a bike, (read the link, there are more details there) can't smoke, have good relationships with his parents and siblings, own his own home. Dean met 4 of the requirements, lucky duck!

5) One year ago Dean was 100% against adopting. It was great for other people, not for us. (update: we now have 4 kids who are adopted) 

6) Axel  has been with us for almost 4 months now. (update: Axel has now been with us 4 years, Asher 3 years, Abel 21 months and Audrey 8 months.) 

7) Every day I catch find Dean scrolling through photo listings of children available for adoption. (Dean is no longer scrolling through photo listings.)

8) Dean and I love dogs. We had four but recently had to say goodbye to our Rubee. We miss her a lot. Over the last few years we've had a lot of puppies here too. I love puppies, but they are WORK! I don't miss the work. Or the poop.

9) I hate snow. I hate cold. Minnesota is the wrong state for us to live in. Then I realized that neither of our parents are here for much of the year because they are snowbirds. But the services here for the kids  are too good to move south, so we stay. Someday we will have a winter home.

10) I had a "Before I turn 40" list. One of those things was to get my own bike.
"Nooner" 2004 Vstar 1100 In this picture he's loaded for a road trip, making him look small! He's not!
What I didn't know is that before long I'd have to add "Spank" to the team. 

11) One summer I put 10,000 miles on my bike. Last year I only put on about 3,000. It was a sad summer for  Nooner, and for me.  You see, Nooner needed brakes, and all our money was getting put into the adoption. This year it will be better, I just know it! (the years have gotten worse, not better. I've had my bike for sale twice because I just don't get out and ride anymore. But then I think "It didn't sell because THIS is going to be my year. I have hope that summer 2015 I will be back to riding!)

12) In the past year, God has brought me to the most amazing places. They are not places one would choose to go for, say...a vacation. But I went, and our lives were forever changed because of it. Pretty soon Dean will get to experience it too, because there are plans in the works. (I have been to more great places, but never for a vacation. Always places that are life changing.) 

13) I hate cooking. No, really. I suck at it even more than I hate it. (I still hate cooking and I still suck at it.) 

14) Dean has a blog that he has abandoned. If you want to see him write more, you can go comment on it.  I happen to love getting his perspective on things. 

15) I am a full-time student. I just took this year off so we could complete adoptions and stuff. I go back to school in September, and have about 18 months left. Dean says he's retiring when I'm done and find a job. He cooks much better than me, so that will be a good thing.

And I've added one more:

16) I love my life. Every single part of it. It's the life God chose for me and He knows what's ahead. Everything from today is preparation for tomorrow. Whatever He's preparing me for, I can't wait to see!

Tuesday, December 09, 2014

Asher update: 3 years home

There was a disclaimer posted on the original blog post which you can find here.

Three years ago today Asher arrived home. I can't believe three years has passed so quickly, or how much this child has changed in just 36 months.

When Asher first came home he was 7 years old but stuck at a 6-12 month level. He was 40 inches tall and 31 lbs. He had just learned to walk a couple of months before and toddled around. Asher had never seen solid food, only baby food consistency. He did not know how to chew, he was not potty trained, and clung to me - or anyone else - like a baby rhesus monkey.

Three years later and Asher is now 10 years old. He is ALL BOY! He spends his days going over, under, behind or on top of everything that is possible to get his body into those places.

Asher had no communication when I met him, but now he is signing up a storm! He has a 1:1 interpreter with him in school and his vocabulary grows larger every day! Suddenly in the last couple of months he is trying really hard to say words. It is so fun to watch his attempts.

Asher has grown A LOT! He is now 60 lbs and 49 inches tall! He has developed a slap-stick type sense of humor and loves to be silly. When he gets up in the morning he signs "Good morning" before his eyes are even open, and asked me to sing our good morning song. He is quick to dish out a hug and kiss for his Mommy! Asher is very close to Audrey, the two of them often found hand in hand. It helps that they are in the same special education class together. He also likes to play with Abel a lot, but a bit more rough and tumble than with Audrey.

Asher has brought us three years of amazing JOY. To see him blossom from a shy, fearful little guy tormented by severe PTSD into this funny, loving little man just makes my heart full!!! Every day I thank God for bringing Asher to us, giving us the opportunity to witness yet another miracle.

Wednesday, December 03, 2014

She's leaving!

We have to watch Audrey really close. A couple times per day she decides she's leaving.

Don't worry. At the top of all exterior doors we very loud alarms to warn us when Audrey or Asher open the doors! 

Four Years Ago

Four years ago I was on the other side of the world, in the city of Kragujevac, Serbia. 

It is the day I was allowed to take this little man out of foster care!

It was a day of many sad goodbyes.

Goodbye to a family who had loved and cared for him for 2 1/2 years.

Goodbye to the foods he had always known.

Goodbye to the language he understood.

Goodbye to a life as one of "the have nots".

There were good goodbyes too!

Goodbye to being hidden away.

Goodbye to being forgotten and devalued.

I was a new mom again, and had no idea the wild ride ahead of me!

You can read the details about that day here. 

Tuesday, December 02, 2014

26 Years

On this night 26 years ago my then-husband, K. and I walked around the Christmas Tree lot, my ginormous pregnant belly leading the way as I balanced 15 month old Noah on my hip. December 2nd was my due date, and I knew if we didn't get the tree up that night it might not happen at all.

It was 1988 and I was 21 years old. We lived in this cute little house. (it was white with red trim in 1988) Imagine it buried under 2 feet of snow.

We put the tree into the bed of the old Ford pickup truck. It was such a cold night that night, the snow crunching under our feet as we hurried into the house. My husband wanted to let the tree stand outside overnight but I was insistent. It HAD to get put up inside. Tonight!

We got it centered in the tree stand and situated in our tiny living room. My husband sat down on the couch to rest and promptly fell asleep. I got Noah into his PJs and tucked into his new big boy bed, stopping in the baby's room to look into the empty crib. I put my hand on my belly, knowing very soon that heavenly baby smell would be filling the  room. I climbed the stairs to our attic and started carrying all the Christmas boxes to the living room. Up and down the stairs I went, box after box.

I checked all the tree lights and strung them on the tree, stopping now and then to stretch my aching back, taking inventory of what was left to do. One hour, two hours…three. Around midnight I declared the house decorated and lugged the now empty boxes back up the stairs and gave them a shove into the attic. Finally, I turned off all the lights and sat on the couch admiring the beautiful tree and the Christmas season ahead of us. It was then that I realized how badly my back ached, and that I was exhausted. I thought of all that was ahead of us.

I struggled to get my pregnant self off the couch and woke my husband to come to bed. I knew we'd be having a baby soon.

At 4:30 a.m. I was woken by a very STRONG contraction. Wow! I got up to go to the bathroom but had another contraction before I got there. I went back to bed to watch the clock. 90 seconds later I had another contraction. RUH ROH! My husband had already left for is early shift job. I picked up the phone to call him, "Uh, you better come home quick!"

"What? I just walked in the door 30 seconds ago. Ok, I'll be right there!"

Thankfully he only worked a few blocks away. So, too, were his parents. I called his mom to let her know we'd be over in a few minutes with Noah. My husband walked in the door while I was trying to tie my shoes. He grabbed Noah and the already packed diaper bag and headed for the car. He was moving about 30 times faster than me. By the time I got to the back door he was gone.


I called my mom. "Well, this should be interesting. He left without me." I wasn't sure what to do. I called his mom. "Is K. there yet?"

"He just pulled in the driveway. I'll run out and get Noah from him and send him back right away."

My contractions were coming consistently between 1 1/2 - 2 minutes and they were very strong. I wanted to sit down but was really afraid if I did I wouldn't get up, but have the baby right there instead. A few minutes later my husband pulled in honking his horn. I'm sure the neighbors loved that at 5:00 a.m.!

It only took us 15 minutes or so to arrive at the hospital. They put me on a monitor and checked my cervix. I was not even one full centimeter dilated! HOW could that BE???? UGH! I was so afraid they would send me home but the monitor showed my contractions to be very strong so they kept me. A few minutes later the doctor came in to check me again and I was at 4 cm so he broke my water. The very next contraction I told the nurse I felt like pushing. Her response? "Oh you do NOT! We *just* checked you and you were only at 4. Have a few more contractions and quit panicking."

Oh I was mad. The very next contraction I told my husband to call that nurse back to my room. "You better check me now because I am going to PUSH DAMMIT!" She wasn't happy with me. She was very rough when she went to check me, then started verbally back pedaling. "Oh wow! You're at TEN!!! The doctor LEFT the hospital!"

That movie-like flurry of activity happened and the next thing I knew it was 5:58 and I had a screaming 8 lb 10oz baby boy laying on my belly.

Raising Tyler wasn't always an easy job, but he sure made it fun!

Today Tyler is 26 years old. He is going to school and living his life. But he is THE BEST big brother to the 5 A's. He frequently helps us out on the weekends, and while I was going through chemo he was often here getting things done that I couldn't physically do.

For 26 years I have been his mother. You make me proud, Tyler!