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!"

Thursday, March 31, 2016

When prayers are answered

Years ago, December 2011 to be exact, I traveled to Serbia to meet a little boy we would come to call Asher. During my visits there I met a tiny boy who touched me in a way no other child ever has. I blogged about him then, calling him "Ivan" to protect his privacy.

"Ivan" had a volunteer named Slobodanka, aka Boka, who came to visit him nearly every day. She LOVED that boy. She really wanted to adopt him but her husband was not in agreement.

Fast forward to spring of 2013, and Dean and I met Boka again, only this time her husband was there! They were on the playground with "Ivan", and he didn't even look like the same child! He had gained a bit of weight, but most importantly, he was no longer crying. He had found love. Boka had given me her contact info but sometime in our travels home I misplaced it.

Tonight, imagine my THRILL to find this article, and pictures of my boy Ilija (his real name) living with Boka and her husband as his foster family. I am overjoyed, to say the least. This child's face has haunted me for years, and now I know he is safe and loved!

You can find the article about Ilija and his new family here.

Thank you God, for answering this prayer!

*note* In the blog post about "Ivan" I talked about a boy I called "Tommy". You'll be happy to know "Tommy" is now called Abel.

Thursday, March 24, 2016

Remember that one time when I had cancer?

Two years ago today I posted this. Its been months since I've read it, because I cannot read it without tears stinging my eyes. I remember that person. The one who was so scared and couldn't breathe for what seemed like days. I remember the way the words, "I expect this to show you have cancer" cut through the air like a razor blade. I remember trembling in a way I didn't know was humanly possibly and being unable to make it stop.
Two years. I'm a different person now. I am a woman who survived cancer and it changes you. Cancer made me stronger in some ways, and weaker in others. It made me more compassionate and willing to step out and be kind to others in a way I that had never occurred to me before. Before cancer. My life is now "before cancer" and "after cancer".  If you haven't had cancer you won't know what I'm talking about, and may accuse me of being a bit dramatic. You don't know. You can't know. I chose to share my story with you anyway. A story which prompted many of you who had been stalling to get your mammograms done. (and two of you being diagnosed with cancer!)

So, here it is. My words from two years ago, from that time I found out I had cancer.


Audrey saved my life.

My new daughter, who we just brought home, saved my life.

I had to have a physical for my adoption. This is standard procedure and required. I've had the same physical four times now, as every adoptive parent does. My doctor reminded me I was due for my annual mammogram. I scheduled it for a few weeks later then, in the excitement of getting ready to travel I missed the appointment.  I would have forgotten again but this time Dean reminded me. His previous wife had breast cancer and he wasn't happy with me for skipping a mammogram last year.

Dean insisted on coming along for my 9:00 appointment then we would get a coffee afterward before dropping him off at work.

 First I had the mammogram done. Nothing like having your breast pulled down all the way from your chin!!! The imaging screen was behind me, out of view. When all the images were taken the tech put them up on the screen so she could make sure they were good images and nothing needed to be re-done. I turned around to see them myself.

Suddenly I couldn't breathe.

This didn't look like my mammogram from 2 years ago. No. No it was very different.

The radiology tech said she needed to have the radiologist review the films. When she returned she told me I'd be having an ultrasound. I was brought to a little waiting area while they got the ultrasound ready.

There were a couple other women waiting with me, all of us in our white, scratchy clinic robes. I wondered if they were just getting screened. I wondered what they knew about their breasts. I wondered if they were as scared as I was. 15 minutes ago I wasn't scared, now I was petrified.


The tech put the wand to my breast. I asked her to turn the screen a bit for me so I could see. I was in school for a year for sonography. I didn't finish (we adopted Asher instead) but I was there just long enough to know what I was seeing on the screen. "That's not a cyst." I said.

In my head I was screaming, "Oh my GOD that is NOT a cyst. I know that is not a cyst."

Breathe Leah. Just breathe.

I went back to the little waiting area again, but this time I was alone. There were no other women waiting because they had their mammograms and got to go home.  It was only a minute before the nurse came back to get me. "Do you have anyone with you today? The radiologist would like to talk to you."

I wanted to vomit. They don't ask to talk to you, and if you have someone with you, when everything is all good. This was not all good. I could feel it, all the way in my bones. Every cell of my body screamed "RUN!"

I waited in a small conference room while the tech left to retrieve Dean from the lobby. I noticed a box of tissues on a nearby desk and quickly grabbed a handful, shoving them into the pocket of my scratchy robe.

Dean came in and sat down by me.  I couldn't talk. I wanted to vomit. I was afraid if I opened my mouth some kind of floodgates would open and the result would be really bad. And then the radiologist, in her white lab coat, stood before us, the tech at her side with her blonde pony tail and her pink and purple scrubs.  "I've reviewed your mammogram and ultrasound. You do have a mass there that is small, but it needs to be biopsied."

That is when my world started spinning.

I buried my face in Dean's chest and sobbed.

But is where the doctor didn't follow the script that was in my head. It was at this point she was supposed to say, "This is just a precaution. Chances are this will come back fine."

But she didn't say that. She just stood before us, waiting patiently while I composed myself. She said nothing.

She told us we would have the results back by noon tomorrow (Friday).

The radiologist and tech left to prepare the procedure room while Dean and I sat and waited.

"I can't have cancer." was all I could whisper. It was all I could think.

Couldn't this biopsy wait until Monday? Let me digest this for the weekend? do not waste any time here. This is a breast clinic and this is what they do. There would be no waiting.

Just a few minutes later they came back to get me. Dean disappeared to the lobby while I laid down on the exam table. The radiologist put the ultrasound wand to my breast and I stopped her. "You see these all the time. What do you expect these biopsies to show?"

She took a breath. Her words were gentle and soft, but very firm, very clear. "I am honest with all my patients. You're scared and you want to know so there is no reason for me to be vague. I expect this biopsy will show that you have cancer."

"I need a number. Can you give me a percent?"

"Well...I would say I'm 95% sure."

And then I cried. One of those silent cries where you want to say something, I needed to say something, but my throat was too tight to talk and...again...I couldn't breathe enough to talk.

"I'm ok. I'm ok. I'm ok....." I said. While I tried to breathe.

And then I told her why I was upset. About our family. Audrey. Everyone. I can't have cancer.

I cried some more.

Finally I said, "Ok...lets get this done."

The doctor was so patient with me. How many times has she had a freaked out woman on this same table asking the same questions?

She put the wand back to my breast and I told her what I understood of the image on the screen. "You would have made a good sonographer." she said.

She painted my breast with antiseptic. She explained she would be inserting a needle with novocaine (or some other numbing stuff, I don't even remember.) and it would hurt a little. It did hurt, but not as much as my tooth last month. Then she inserted a second needle for deeper numbing behind the lump.

"Next I'm going insert a special needle. When I'm in the right position I will activate it. It makes a loud clicking noise but it should not hurt. If it hurts please tell me." The whole procedure looked just like this.

Courtesy Mayo Clinic Health Library
I waited for it to hurt. My whole body tensed up with the waiting.


I tried not to jump but I did anyway. It sounded like a staple gun. There was a small tugging sensation, but no pain.

"I need to do three more just like that. I will tell you each time so you don't jump."

I asked her to show me the sample that was taken. It was about an inch long, and a thick spaghetti noodle. "There's my cancer." I thought.

I started taking deep, cleansing breaths like when I was in labor. Long, deep breaths to take me somewhere else. To a beach, with sunshine. Anywhere but here.

"Ok. Here is the next one."


I exhaled. I didn't know I was holding my breath.

"Alright. This will be the third. I'm activating now."


"Ouch. That one hurt a little bit. Not bad. Like a pin prick."

"That was the deepest one. This last one you should not feel at all. Activating now."


"There. That was the last one. Now I'm going to place a small metal clip, about the size of a grain of rice, into the lump. This marks it for future reference so if a new lump were to appear we know this is the original one."

The tech bandaged me up. Then the doctor asked if I have a picture of my kids. I showed the pictures I took back in August, then of Audrey on the day she was removed from the institution. Skinny, with her head shaven and in ratty clothes. Then I showed her a recent picture. "She's beautiful." we said together.

"This is a small lump. I can't say for sure until we have the biopsy results back, but typically this is treated with a lumpectomy and 6 weeks of radiation. Very rarely is chemotherapy needed for this type of lump. Six weeks of radiation won't stop your life. You'll be a bit tired, but it doesn't knock you down like chemo does. I expect that you'll be meeting with the oncologist and surgeon on Monday. But sweetie, you are going to be ok. This will likely show a very slow-growing cancer. Its gonna be ok! YOU are going to be ok."

I hung onto those words. No, I clung to them as if they were a life-ring tossed to me while I bobbed and floundered in the ocean.

They handed me a bright yellow sheet of paper with post-biopsy wound care instructions, then walked me back to the small waiting area. There were three other women waiting. I sat down in a chair in the corner. I started to cry. I couldn't stop. The tears just kept coming. Here were three women, waiting for their own  mammograms, and here I sat, golden ticket in my hand, sobbing. One woman wiped a tear from her eyes while the other two hid behind their magazines. I realized I was freaking them out and tried to compose myself. I picked up a magazine. What does it say? I couldn't really focus on the words or content. There is a puppy in the picture. Cancer. Do I have cancer? I don't like how the room on this page is decorated. What will the biopsy say? I couldn't concentrate on anything but the words screaming inside my head.

Yet another tech came to get me for another mammogram. This one is needed to make sure that little metal clip is in the right place. As she started to position my breast on the plate, my whole body started to tremble. Like I was freezing only I was dripping with sweat. "I need to sit down." I said, and she quickly moved a chair to me. Apparently I was a bit pale. I just needed a minute. Just a minute. Why was I shaking all over? I realized I was a bit shocky, probably from being really tense about feeling pain during the biopsy. Probably from just being told I have cancer.

I needed to talk to Dean. He didn't yet know what the doctor said in answer to my questions. He didn't know the doctor said this was going to show I have cancer.

We took the couple of mammo films that were needed and I was finally allowed to get dressed. I got into the changing room and pulled out my phone to text my sister. My hands were shaking so bad I dropped my phone twice. I sent her some garbled text about "its not good."

I walked to the lobby and spotted Dean. He came to meet me as my phone rang. It was my sister. "I can't talk now." I said, and hung up on her. I couldn't breathe. I was starting to hyperventilate. I wanted to away...I felt trapped. "Get me out of here." I mumbled to Dean. Really, I needed him to lead me because I didn't know where to go because I couldn't think.

We left the lobby of the breast clinic, and the eyes of others waiting, and stepped into the bigger, main lobby of the clinic. I lost it. Never in my life have I cried so hard. Dean just held me as I sobbed. I felt my legs give out under me and Dean held me up. Through choking breaths I told him what the doctor said. That she expected this to be cancer. "I can't have cancer!" I cried. I cried so hard. Dean cried with me and held me, there in the lobby of the breast clinic. And I became aware of women coming off the elevators, moving into and out of the clinic, going about their business, seeing this woman freaking out and knowing in an hour that could be them. Or for some, that was them just months ago and they know. They know the shock. The disbelief. I didn't want to be part of them.

Finally, after several minutes, I was able to catch my breath. Everything about today was about breathing. It was so hard to breathe all day. I had to call my sister back. I looked at my phone. A little over an hour.  In one hour I had a mammogram, and ultrasound, a biopsy, and found out I probably had cancer. It was only 10:30 a.m.

Yesterday I was fine, today I have cancer.

Wednesday, March 23, 2016

Dear Department of Homeland Security

Dear Department of Homeland Security,

As part of our adoption finalization process it has been required we verify the Certificate of Citizenship for (Amos). Although we had only received this document from you two weeks prior, per your request we returned it to you. You then overnight shipped it back to us.

Today, two months later, you have requested a copy of the back of said document. Enclosed please find a copy of the back side of the Certificate of Citizenship. Please note this is a quality copy, and all items appearing on the original document are visible on the copy.

Tuesday, March 22, 2016

Happy Coming Home Day!

Two years ago today, three exhausted people arrived at the Minneapolis St Paul International Airport: M
e, Axel, and newly adopted Audrey.

A lot has happened in her two years home. She is an amazing part of our family, and we can't believe we ever lived without her.
March 22, 2014

March 22, 2016

Monday, March 21, 2016

World Down Syndrome Day 2016

Monday, 3/21 is World Down Syndrome day 2016, to honor the three copies of the 21st chromosome, which is what makes Down syndrome. 

We have lots of reason to CELEBRATE our children. Down syndrome is just a small part of who they are (but it is absolutely a part of who they are!) But our world isn't all about Ds anymore. Its about living, learning, and joining in society even when the world deemed our kids as worthless and of no benefit to the community which some of them were born. Down syndrome is our normal here, and I forget about it most of the time. The purpose of World Down Syndrome Day is to bring awareness to the fact people with Ds, our children included, are people with worth and are valuable members of society.

Angela: If she just had Down syndrome, life would be so much less complicated. Now that we know the medical secrets hiding in her body, we know that NONE of her health issues have ANYTHING to do with Down syndrome. Just getting rid of the high ammonia level has affected her ability level in drastic ways. Suddenly she can write much better. Her speech has changed for the better - even with her hearing loss! She has impulse control like she has never had before, and her ability to reason has also improved. She's even reading better. She is a completely different person than she was just six months ago. Down syndrome is not her issue, it is everyone else's problem.

Axel: Such an amazing kid. A true caretaker who would make an amazing dad someday. He frequently goes behind the people in the house, putting away things we've left out because we were going to use them again in 2 seconds because we are apparently not capable of cleaning up after ourselves. Axel's speech was profoundly affected by his years in the institution. Years of nobody talking to him, or caring for him on a daily basis, left him unable to make the words he needs. Axel has a lot to say though, he just has a tough time getting it out. It is amazing to me how much Axel has recovered since becoming part of our family. No, Down syndrome is not his issue. It was everyone else's problem which is why he is left without a voice.

Abel: Number two without a voice. Sadly Abel is probably the most institutionally damaged child of all our adopted kids. Home 3 years, he is still very much a feral child. I don't talk about him much here because, to be very frank, sometimes it is hard for me to find positive things to say. He *IS* making huge progress thanks to the amazing staff at his school. Everyone from the office staff, to his teachers and support staff, to the phy. ed. teacher have helped him to make great leaps in his ability to function in the world. But I won't sugar coat things here. Abel will never live independently. He will always need extremely close supervision to keep him and others safe. Down syndrome isn't his issue. It was everyone else's problem which is why he was left to develop such primal survival skills in order to have his most basic needs met. Imagine having to threaten his institution caregivers with physical harm just to get a drink of water or an extra bite of food.

Asher: A third child without a voice, stolen because of one culture's fear of those who are different. A problem solver with an amazing sense of humor. Asher will never talk more than a (modified) word here and there, and yet he is an amazing communicator. There is never a question what he wants or needs, or of what he's interested in. Down syndrome isn't Asher's issue. It was a problem for everyone else and it is the fault of a society that he has no voice.

Audrey: Our fourth child without a voice. Our fourth child who has to learn to function in a world after 8 1/2 years locked away, severely neglected, because she has Down syndrome. A child so smart, so capable, who now appears to others to be severely autistic and ambivalent to the rest of the world. But those who know her well? They can see who she really is inside there. A strong, opinionated young lady who knows what she wants. Down syndrome isn't her issue. It was a problem for everyone else, and is they who hid her away from the world, preventing her from becoming the capable young lady she was meant to be.

Amos: Child number 5 without a voice. who will probably be forever a toddler because the world in which he was born didn't feel he was worthy of life. So smart and cunning with amazing problem solving skills. The child who, because he had no exposure to LIFE, spends much of his time with anxiety so high he laughs maniacally while staring at the ceiling. Down syndrome is not his issue, it was the problem of everyone else who didn't want to be responsible for a child "like that".

Our kids have Down syndrome. No, they cannot do "anything they set their minds to". Two, at least, would like to drive a car but never will. All want to talk but for at least three of them its unlikely to happen. All want to cook for themselves, but for at least two it will never happen. All want to have purpose in life, and for two of them that will likely never happen. But all the limitations facing them are not because of Down syndrome itself, but due to society setting limits upon them at birth, forever changing the course of their lives.

Thursday, March 17, 2016

The countdown

Every day Angela asks me, "How many days until my surgery?" 

We're both anxious, but I think for very different reasons. I have explained to Angela several times that she will still have her gtube when this surgery is done. Unfortunately it doesn't matter that we have the conversation every day, even multiple times per day, she is convinced this will be the end of the tube. She wants her life back, and in her mind her gtube represents when her life changed so drastically.

But Dean and I, we are anxious as parents tend to get. This surgery is completely expiramental. It has never been tried before. There is no way to predict how her liver, or her body, will respond to the changes about to be made. She has a history of wound healing problems, and there is no way to know if this will still be a problem, altbough the doctors suspect it was due to undiagnosed hyperammonemia. And then there are the wounds themselves. They will be huge. Oh my baby girl. I hate this for her. 

And then there are the logistics of the hospital stay. Angela will be in intensive care for several days (a week to 10 days was the guess) then another week or so before coming home. There will be lost income and much juggling of the other kids, but I think we're as prepared as we can be. 

Today we went to the hospital for ultrasound imaging of Angela's legs. Her doctors wanted a good look at her vasculature as they plan to use one of the veins to close the defect in her liver. We were both glad to be one step closer. Two days before surgery we will go back for bloodwork to get her typed and crossed as they anticipate she will need blood during surgery. She was all smiles waiting for her ultrasound.

Thursday, March 10, 2016

Asher 3rd grade program

It was just a little over four years ago (December 2011) that we brought this tiny little boy home. We named him Asher. He was so very tiny when he came home. Seven years old and looking like a mere toddler.

His 8th birthday, his first with us, he wast just starting to understand about birthday celebrations, and he loved it.

We waited a few months before Asher started school, starting kindergarten just before his 9th birthday. The first few months were tough for him, learning to function in a school setting. There was SO MUCH going on in a classroom for him to process, in addition to not understanding English. But then, after much discussion and many meetings, the school district agreed to give my suggestion a try and hire a 1:1 interpreter/assistant to work with him and give him communication as well. That is when Ms. M. entered his world, and she has been nothing but a gift ever since. 

Ms. M. has given Asher a true voice in his school. She has helped him learn to navigate the playground, lunch room, and classrooms. She is teaching him his first sight words and his first friendships, I have  no doubt Asher would not be where he is today without Ms. M.

 Every year Asher has participated in his school music program. Tonight was his 3rd grade program, and I am so very proud of him. He has come so very far. 
There are two people who really want to see this video. I'm sorry he's so far away. (click on it to make it bigger)  He's on the far left, front row in the bright blue plaid shirt. For those who haven't been here to see him every day, I wish I could describe to you how much change is represented in this video. From that tiny baby of a boy who came home 4 years ago to now. 

Thursday, March 03, 2016

Meeting of the Minds: Abernethy Type II Malformation

Today we met with the surgeons at the University of Minnesota to discuss our three options for treatments of Angela's liver malformation, Abernethy Type II Malformation.

As I mentioned in a previous post, we have three options:

1) Medical management: This is what we're currently doing. Everyone on the liver surgical team agrees that medical management is not going well for Angela. The drugs cause side effects that are not just unpleasant, but life-altering. She has lost all independence, is limited to how much time she can spend away from home, and is now embarrassed to have friends over. As for me, I do what I need to do, even if that means donning a hazmat suit for the cleanup that must happen multiple times per day. Ok, I don't *really* need a hazmat suit, but I feel like I do. And, it doesn't matter how careful we are with planning and timing, the moment we're due to walk out the door, or the bus arrives at our driveway, or we arrive at a desination, we have a major problem that requires not just a trip to the restroom, but a full shower for Angela. You can read about the medication and its effects here.

2) Liver transplant: Angela qualifies for a liver transplant, and we could put her on the list now, however she would never get a liver. She isn't sick enough. Her liver cells themselves work fine, they just don't get enough blood to do the work that is needed. There are a lot of people on the list who are far more sick than her, and in end-stage liver failure. And even if we put her on the list, that doesn't solve the problem of #1.

3) Lastly, the surgical fix: This is where we're at. The team has proposed a multi-stage process to attempt to close the defect. It is complicated, it is risky, and it has never been tried before in her particular variant. The good news is, they think she is a really good candidate to give it a try. If it fails, she would then go on the transplant list and be more likely to get an organ because her options would have decreased. Because Angela has a history of wound healing problems they'll be talking to her previous surgeons to come up with a pro-active plan to manage this. However, its very possible those problems were caused by the high ammonia levels we didn't know she had. The biggest risks for Angela are blood clots and stroke. (and it is suspected her previous strokes were caused by this disorder, as there is an old, calcified clot inside her portal vein, and vascular malformations in the liver are often accompanied by vascular malformations in the heart, spleen, and braid.) The surgeon expects 3-4 surgeries to get through the repair process, 10-12 days in the hospital with each phase, and somewhere around two months between each phase She will be on anticoagulants shots for the entire process (the first surgery through to several months after the last) in hopes of preventing her from developing clots.

I am waiting for a surgical scheduler to call me back, but we are looking at scheduling surgery for the beginning of April.

So thats it. That's where we're at with this. Deana and I are scared to death about the potential for problems with this surgery but really, we don't have any other options for Angela to have any quality of life if we don't at least try.