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!"

Sunday, December 29, 2013

Updating about the AAAA's

I think I am long over-due for an update on each of the kids, so here goes!

Angela: I don't blog about Angela as much now that she is in  high school. There are parents and kids from her school who occasionally read the blog and Angela needs some privacy. Angela is a Jr. in high school this year and every day reminds me that in just a few months she'll be turning 18! Can you believe it??? Angela just finished her soccer season, and she lettered again! I'm so very proud of her. She's willing to try just about everything. Just before Christmas she started her floor hockey season and is anxious to find out which team she'll be playing on. Angela and Axel both did cheerleading for the fall but I think we are going to opt out for the second part of the season. She and Axel want to play basketball and we can only go so many directions at once! She loves to spend time in our sensory room dancing to music. Of course "One Direction" is a favorite. She's also liking Lorde and Katy Perry.

Axel: Axel is a 6th grader this year. He has grown up so much more than I could have ever imagined. He continues to make up for lost time. When we brought him home he was very much like a 4 year old, playing with toddler toys and going through all the developmental stages he'd missed out on. Now I would say he is very much like a 7-8 year old. He still loves Thomas the Train but his Thomas play is becoming more sophisticated. Axel really loves our sensory room, mostly hanging out in the ball pit, burying himself up to his eyeballs! He doesn't have a lot of time for the "little boys" unless it's to boss them around, but he can be very helpful with them too. Axel really likes to play Angry Birds and has figured out how to download every version he can find. Today I received a notification from one of our iPads that our email to customer services wasn't very clear and could I please call them to discuss my complaint. In other words...Axel emailed them. HA! I am frequently having to adjust the security settings on the iPads to limit where Axel can get to. He is very quick to figure out any piece of technology! Axel's speech is slowly coming along. We hear more words and phrases coming out now and then, but most of the time we get Axelese, which unfortunately none of us understand.

Abel: Man has this boy grown! He is going to be a really big guy! When he came home he was wearing size 4 pants, and he's now wearing 7 huskies. He is one solid kid! Abel is doing really well with speech therapy, where we focus mostly on communication. His speech therapist is doing a lot right now with auditory training, teaching him to tune into and recognize sounds he was missing before he got is hearing aids. He is doing well with Occupational therapy too, where they've been focusing on sensory integration and his fine motor skills. When he came home he could not do any types of fasteners, but now he can button his pants by himself and is learning to zip his jacket. Abel's behavior has improve significantly in the last month! He is starting to play more appropriately with toys. He loves to spend time in our sensory room, where is favorite activity is to be thrown into the ball pit or swing on his tummy.  After much negotiation with our school district we have recently come up with a new school plan for him. We'll be doing a mixture of homebound and school-based services as he learns to learn from people other than me, working up to full days in school. In the fall he will go to the ASL class where Axel currently attends. I can't wait for him to go because his communication is going to explode!!!

Asher: Asher is growing up! His communications is really taking off and he can tell us so much now, all in sign! He can tell me he wants me to pour some of my drink into his glass, or that he wants me to come sit by him. He is experimenting more with making sounds. He tries hard, but I don't really expect that Asher will be much of a talker. If he proves me wrong I'll consider it a bonus. We adore Asher just the way he is! Asher is really enjoying 1st grade. Its funny to see this tiny 9 year old boy who is in class with 6 and 7 year olds who tower over him! A few weeks ago he had a swimming day at school so I went along. Oh he had so much fun! I really like the program Asher is part of this year. He has a 1:1 assistant who is fluent in ASL which has been the key to increasing his vocabulary.

Our Christmas was grand this year. It was a true pleasure to have big brothers Noah and Tyler with us for the week.

Monday, December 23, 2013

We did NOT fall off the planet!

We are still here. Really.

I'm in a blogging funk lately. There is so much going on and I don't even know where to start. So tonight, how about I post some pictures that should have been posted months ago?

Lets to back to early October, shall we? Our trip to the pumpkin patch! The Apple Junction in Hastings. We love this place! It was our third year and we've been happy every time. It's not super crowded and there are several different things to do. It isn't huge, which is just fine for us. What's more important for our crew is getting them out and experiencing life!

The water pumps. Anyone who knows Asher knows he was totally obsessed with this! I loved that there were enough pumps for all our kids to participate at the same time. Notice Abel is watching closely how this is done. 

This is the look he gives when you tell him to do something he really doesn't think he wants to do. 


Enjoying the ride out to the pumpkins.

This is an observation tower that is about 30 ft in the air. Two years ago we  had to DRAG Axel up the steps because he is not very fond of heights. This year he went up pretty easily, but no, he was NOT going to look at at the beautiful view. Notice Abel is wearing a backpack? It has the water bottles in it and he really liked carrying the weight around. And yet, he hates wearing a weighted vest. 

Asher loved the inside of this wooden train!

Don't tell Angela, but this is the closest she's going to get to driving. 

Driver negotiations

Asher absolutely loved the wagon ride. All that vibration to soak up with his body. Heaven!!! He put his face on e.v.e.r.y.t.h.i.n.g. to test the vibration levels. 

The kids were all so proud of their pumpkins! Except for Abel. He was a bit puzzled by this whole experience. Thankfully it wasn't super crowded so he didn't have to deal with tons of people. 

I love this one. Classic Abel. "I am NOT putting my face in that thing!"

Saturday, December 14, 2013

Remembering Charlotte

One year ago today, our nation suffered the tragic loss of 20 children and 6 adults at Sandy Hook Elementary School.

Today we remember all of them:

Charlotte Bacon
Daniel Barden
Rachel D'Avino
Olivia Engel
Josephine Gay
Dylan Hockley
Dawn Lafferty Hochsprung
Madeleine F. Hsu
Catherine V. Hubbard
Chase Kowalski
Nancy Lanza
Jesse Lewis
Ana Marquez-Greene
James Mattioli
Grace McDonnell
Anne Marie Murphy
Emilie Parker
Jack Pinto
Noah Pozner
Caroline Previdi
Jessica Rekos
Avielle Richman
Lauren Rousseau
Mary Sherlach
Victoria Soto
Benjamin Wheeler
Allison N. Wyatt

The first name on that list, Charlotte Bacon, is the daughter of my high school classmate, Jo Jo and her husband Joel, sister to Guy.

Our hearts ache for their loss knowing there is nothing any of us can say or do to make it better. Nothing that can bring Charlotte back for them, nothing to erase the memories of that day from their hearts and minds.

What we CAN do is remember Charlotte and honor her memory. Charlotte was a lover of animals, especially dogs. In the wake of the tragedy, therapy dogs were instrumental in helping the family and community members deal with their grief, loss, fear and anxiety. Charlotte's parents started Charlotte's Litter. The goal of the program is " to advocate for animal assisted activity with Therapy/Comfort Dogs and their roles as supportive friends and trusted companions.  We strive to create turnkey programs that make Therapy/Comfort Dogs accessible to every man, woman, and child."
Orange Dog by Charlotte Bacon.
If you would like to help children who have suffered through a traumatic experience, please consider contributing to Charlotte's Litter. Your tax deductible donation can be made by going here.

Monday, December 09, 2013

Happy 3rd Gotcha Day Axel!

Three years ago,
on December 9th, 2010
in the city of 
Kragujevac, Serbia
Axel and I woke up early in our hotel room. 
We got all dressed up for our big day.

We walked just a few blocks away to the social center. 
There all the papers were waiting or me to sign them.

All the important people were there. (they're the same people who were at Asher's adoption ceremony exactly one year later!) 

You were declared

Axel Djorde 

That done, it was time to go down the street to the police station.
You loved walking with your legal guardian. 

The police station is a HUGE building!

We applied for your new birth certificate,
passport and Certificate of Citizenship. 

We had to wait a long time. 
Mostly because they had to re-write documents several times
Trying to get the right spelling of my name.

Finally it was done! Just nine days and you were officially my son! 

Who would have known how much different our lives would be just three years later? 
Who would have predicted how tall you would grow,
how much you would learn,
how much you loved life?

You're an amazing young man, Axel!
 I am so proud to call you my son!!

Thursday, December 05, 2013

Happy Adoption Day Asher!

Two years ago today
Belgrade, Serbia

Asher walked out the doors of the institution
where he had spent 2,591 days.
7 years, 1 month and 5 days. 
His entire life.

We got into a car for the drive to his birth city
Kragujevac, Serbia

I signed the adoption decree

The ceremony was held

And when it was all done....

was legally declared our son.

Happy Adoption Day Asher! 

We sure love you!

Monday, December 02, 2013

Refusing to communicate

Axel is in a full-immersion ASL program for deaf and hard of hearing kids who have cognitive impairments. He is the only child in the program who is hearing. This is his 3rd year in the program. Using ASL, Axel is able to tell whole stories, using much facial expression and variations of his signs to change their meaning.

At home, Axel refuses to sign. We struggle to get single signs out of him. I often play dumb when he does this, only responding when he finally, begrudgingly, gives the most basic of sentences, "I want more pancakes please." with much drama as if it is a lot of work for him. But oh Axel, I know better.

Tonight Axel headed to their bedroom. As he was going down the hallway, when he thought he was out of my sight, he silently motion for the little boys to follow him.


I slipped on my spy boots, snuck outside and around to their bedroom window.

Axel had wanted to play "School" and needed students! He sat on his bed as the teacher, with the little boys on the floor in front of him as the students. He was signing away.

"Asher. What month? November! Right! It's November. Look! New month! December. D.E.C. (spelling the abbreviation) Look. Count. How many days? 1, 2. Right! Dec 2nd. Today. Today."

I tried to make a video but it was too dark from outside for my camera to pick it up without moving to where I would be discovered. 

Sunday, December 01, 2013

Three years ago today

Tonight we sat down with Axel. He has enough language now that maybe he can tell us some things. He can at least understand a lot of what we're telling him.

"Axel, do you remember a long time ago, you lived in a different house very far away? Do you remember, there was a different mama and papa?"

I showed him some pictures. They were pictures of his foster family.

"One day Mama got on a plane and flew very far away. Then I went to a house and knocked on the door, and a little boy came to the door. Do you know who that little boy was?"

"Me!" Axel signed.

"Yes, that's right! It was you. You were a little tiny boy. And I came to the door and said, "I am your new mama."

Tuesday, November 26, 2013

And he hears!

I've been waiting for a month for today to roll around.

I don't remember if I posted that when Abel had his tonsils and adenoids removed last month, he also had an ABR done, which is a definitive hearing test. Many of us were shocked to find he did, indeed, have a hearing loss. Mr. Stinker Pants is very good at compensating!

We ordered his aids a few weeks ago and were able to pick them up today. Angela came along to offer  her assistance, having the audiologist first put her hearing aids on, then doing Abel's. I would have posted pictures of the actual visit, but I was busy wrestling the 12 legged cat named Abel to hold him still. It went better than our last visit, that's for sure! Still, Abel was on hyper-altert and not at all happy about having his ears messed with.

Now that we are home, he's had his hearing aids on for four hours and is doing great!

Look how grown up he's getting!

At $2,000 per ear, they are absolutely getting tied to his head! He doesn't keep his glasses on without a strap, but with the strap he completely leaves them alone. I don't want him to have two straps on his head so I have ordered a . Safe-n-sound band that will manage both his glasses and hearing aids together. I hope it works for him!

Friday, November 22, 2013

Two years ago today

Two years ago today

I walked down the hallway surrounded by a group of officials.
In front of us was a toddler-sized table with three toddler size kids eating their meal.
The social worker pointed to the boy who's back was to me. 

"This is him. This is your son. Lazar."

I knelt beside him, gently placing my hand on his back.
"Hi." I whispered, my throat so tight I could barely speak.

He kept his eyes on his food, seemingly unaware I was there
except that he pulled his plate closer to him
afraid I would take his food.

I choked back my tears. 
I couldn't let him see me cry.
"Hi Lazo." I said softly. 

He stopped eating. Frozen still. 
Without taking his eyes off his food,
still holding his plate,
he smiled.

A minute later, his food gone, 
we were escorted down the hall to the playroom.
He held the hand of his caregiver.
Walking behind him I saw he walked like a brand new walker
and really wasn't much bigger than an 18 month old toddler.

The social worker told him in Serbian 
"This is your mother."
as she placed him in my arms.

This picture was taken seconds later.
He was SO tiny.

After only a minute I had to put him down because he was too overwhelmed. Poor baby. He was so lost. So disconnected from the world. But slowly, over the next few days, I would begin to reach him.

Wednesday, November 20, 2013


A few months ago I heard about non-profit organization called "I Run 4". Inspired by a close friend who was battling hip dysplasia, Tim Boyle founded the organization to give both runners and honorary runners a way to give one another both mental and emotional encouragement.

Last week I put all four of my kids' names onto the list of Buddies who would like to be matched with a runner, and by the next day they had been matched. The timing couldn't have been more perfect, since Axel's runner, Debbie, was scheduled to run the Big Sur half marathon on Sunday, November 17th.

Axel was excited to learn about this person who was going to run a really big race, so the day before he made her a poster. 

Debbie was so excited to have someone to run for. Another someone to focus on when she's running. I told Debbie Axel's story, how he came to us from the other side of the world, about his spinal fusion and the fact he had never been given the opportunity to run. Now that he is able to, he LOVES to run, though his technique is a bit interesting. LOL

Debbie wore Axel's favorite color orange for her race, and she and took this picture for him just before the race. 

Debbie ended up setting a personal record for the half marathon! She got a medallion at the end of the race. Do you see it hanging around her neck? She worked hard to earn that! Axel was very proud of her when I explained she had to run a very long way to get it. 

Axel loved seeing the pictures of Debbie before and after her race! Then today a package arrived in the mail for Axel. 

*edited to add* Tonight I went into the boys' room to make sure everyone was all tucked in and found this:
Axel brought Debbie's medallion to bed with him.

Since it's beginning IR4 has grown exponentially. There are now somewhere around 2000 runners around the world waiting to be matched with a buddy. I know a lot of my readers have kids or family members with a wide variety of special needs. If your special person would like to be matched with a runner, please visit the IR4 website for more information! I found it very easy to sign my kids up, and my kids are really excited to be able to cheer their runners on!