Blogging about life in Minnesota, raising our five 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, May 20, 2015

Little Girl at the Piano

Four years ago, my friend Hope Anne and I became very close phone friends as she prepared to travel to Ukraine to adopt her new daughter Katya. Let me tell you a bit about Katya.

Katya was born in Ukraine with a skull that was badly misshapen and in need of surgical reconstruction, not only for cosmetic reasons, but because her brain did not have room to grow. This early fusion of her skull plates caused Katya to suffer chronic, migraine level headaches. Luckily for Katya, she was living in a Ukrainian orphanage where she was severely neglected and malnourished. Since she wasn't growing neither was her brain. Luckily for Katya, she wasn't having headaches yet. Well at least not that anyone knew.

Because Katya was severely neglected and malnourished, and because the orphanage staff didn't actually talk to her, Katya never developed language. She didn't have the ability to tell anyone if her head hurt or not.

Luckily for Katya, she didn't really need language. Not only was she severely neglected and malnourished, but when she was adopted at the age of six, there was no such thing as "school" for her. She had never had even a tiny bit of exposure to anything educational. Katya had never seen a crayon, held a pen or pencil, or been handed a book. 

Because she was severely malnourished and neglected, Katya was often the victim of assaults by the other orphan children who, though malnourished themselves, were much bigger than her. Survival of the fittest is something children who live in orphanages know well, and Katya was anything but fit. 

Katya lived in a primal fight or flight mode. Without language her only way to communicate was through screaming, scratching, hitting or kicking. She wasn't a pleasant child to be around and the caregivers frequently bullied her for no reason other than to release their frustrations. Never loved and certainly never cared for, when her family arrived to adopt her Katya had no idea how to sit in a person's lap, much less accept love and affection.

Katya was a feral child. 

Katya screamed, and screamed and screamed some more. She kicked, scratched, choked and bit. Katya fought for her life. She fought the family who promised to love her and care for her no matter what. Like a wild animal confined to a cage for years on end, Katya paced back and forth in her new home. Home one year when I first met her, Katya was still pacing. She was still screaming. She was still learning what it meant to be loved. She was still learning to feel love, and she was afraid of it.

I want you to understand the sacrifices an adoptive family makes when they choose to love a child like Katya, because I can tell you from experience, this is not a "love at first sight" type of adoption. When a family adopts a feral child, the family has to choose to love the child. They choose to accept scratches instead of hugs. They choose to confine themselves to home for weeks on end, all for the child who has never had exposure to the outside world and isn't yet ready to experience it. They to choose to listen to hours and hours of screaming, keening, and crying. The family chooses to watch their home be destroyed item by item as the child learns to function in the world. The family chooses to put the value of a child above the value of possessions, vacations, popularity or community status.

I want you to understand that a family adopts a feral child because they understand the child has value even when nobody else can see it. Even when the rest of society asks, "But why is this my responsibility?"

But as much as I want you to understand, I want you to see. Something so simple. Something so pure and innocent as a little girl having her very first piano recital at 10 years old. Four years of love and sacrifice. It is only a few short notes. Turn the volume up on your speakers and you may hear a tiny, shaky voice trying to sing along with those few short notes. Remember that these few short notes are possible because of all the sacrifices made by one family. But my favorite part of all the smile of pride as she runs back to her seat. 

Pride. Sacrifice. Joy. Patience. Acceptance. Choice. Love. Katya.

If you would like to read more about Katya and her family, her mom Hope Anne blogs at Welcome Home Katya.

Sunday, May 17, 2015

The Big Switch…take two!

When we brought Abel home two years ago, we had all the boys in the second bedroom and Angela was still in the basement bedroom. Some of you have been reading here a long time and remember that as the Pirate Room. Unfortunately I wasn't happy with where everyone was and  "The Big Switch" happened, and everyone moved to different rooms! When we brought Audrey home last year it was very easy to move her into Angela's room. Because we use the Ikea Kura beds, we had only to flip the bed over to make it into a bunk bed. Easy peasy! Eventually Dean and I even got used to sleeping in a queen bed in the very small bedroom. Ok, maybe not the small bedroom part.

But then a couple weeks ago we decided we need a different house for our family. We would like to be able to provide short term respite for adoptive families who need a break, plus the property where we live now just isn't working well for us as a family of 7. Plus we have Angela's graduation party coming up and I just wanted things cleaned up a bit.

And so "The Big Switch Back" has started! 

Getting the rooms cleaned out and moved around to put the house on the market, in addition to all the school activities for the kids, after school sports, doctors and therapy appointments means I have been one busy mom. While I've been doing that stuff, Dean, Tyler and Bryon have been working on the maintenance projects. Why is it these kinds of things don't seem to get done until you decide to sell your house? Or have a graduation party for your oldest daughter? And where does all this STUFF come from?

Apparently we are hoarders because tucked away into every corner of this house there is more crap than I ever could have imagined. A couple months ago I read the book, "Life Changing Magic of Tidying Up, the Japanese Art of Decluttering and Organizing". If you haven't read this book yet, I highly recommend it. The premise of the book is about only keeping things which bring you joy. It is not about what to get rid of, but about what to keep. When I read it the first time I got anxious thinking about all the stuff in my house that did not bring me joy and how I couldn't wait to get rid of it all. So, as I purge the house for moving I am following this method and only keeping things which are necessary and/or bring me joy.

How about you? Are you ready for a purge? Have you read the book or are you interested in it? 

Friday, May 08, 2015

Happy Mother's Day

Happy Mother's Day to all the moms reading!

There are probably some new readers here who have come from the Pioneer Press article about our family. Let me give you a little tour:

Some are curious about life juggling kids and cancer. You can read all posts related to breast Cancer by clicking on the Breast cancer label in the left sidebar.

If you're hete to learn about our adoptions, or the Serbian adoption process, you will want to move over to our adoption blog.

Thanks again for paying us a visit here. I hope you stay awhile! 

Sunday, May 03, 2015


Dean and I recently made a really big decision. Although I am very excited about the possibilities ahead of us, the work involved may cause me to have a nervous breakdown! If only I could put our lives on hold for the next month or two.

We're hoping to have the house on the market by June 1st. You know, in the midst of Angela's graduation week and all that goes with it. We need a different space but are not going far. We don't want to change any of the kids' schools. Although we haven't found a new house yet, I have absolutely fallen in love with one I think is perfect for us. I love the space, the lot, the location, the kitchen, the bedrooms….everything… It makes me giddy thinking about it. But we can't even make an offer on anything until June 1st. And, well there is this small problem with Dean's opinion of it. We'll see if its even still on the market at the end of the month. 

Sunday, April 26, 2015

The week that Dean left town

Audrey and Abel had their surgery on April 7th.

On Saturday I took Angela shopping for her prom dress.

On Sunday Dean went down to Arizona. His parents own a condo there and that's where they spend their winters. Dean was helping them pack up then help them navigate the airport and fly home.

On Monday morning Angela got up from school very pale and running a low-grade fever. She's had a bit of "Monday-itis" several Mondays in a row, only she is truly not feeling well. (Its very odd and makes me wonder if there is something in the house she's reacting to.) Anyway, I kept her home and she ended up sleeping all morning. About 10:00 Axel's teacher called and said he wasn't feeling well, and neither was his interpreter. Around noon Angela woke up saying her head and neck hurt really bad, and she didn't want to turn her head at all. She also didn't want to wear her glasses, I think because of the migraine. It was time for us to visit Dr. Mary.

On the short drive over Angela started acting very strange. She was moving her hand in front of her as if she was wiping off a window, "My eyes is foggy." she kept saying. I took this to mean her vision was blurry. Then she started talking NONSENSE and doing a weird shaking with her head. I asked what she was doing. "I don't know. I'm shaking my head but I don't know why."

When I got her out of the van we started walking to the clinic door when she dropped to the pavement. I tried telling Axel to run in and get someone to help but he didn't understand what I wanted. After a few seconds she was able to stand back up though I was supporting a lot of her weight. I waived at the receptionist and said, "We're going straight to a room!" and kept walking.

In the exam room we got her up on the table so she could at least lie down. Her temp was still 101 with Tylenol and still she complained about her head and neck. We did some blood work and a strep test, which was clear. However, the doctor looked in Axel's throat and he had a real mess going on in there. He tested positive for strep. Given Angela's history the doctor wanted me to take her to the hospital, and she called ahead to let them know we were coming.

She was in bad shape when we got there. Her blood pressure was down to 60/40 and she was extremely dehydrated. (The ER doctor later told our ped. that we should have been transported by ambulance but her blood pressure wasn't that low in the clinic.)

We ruled out all kinds of things, including leukemia since her white count was at 28,000, in order to arrive at doing a spinal tap to test for Meningitis. Although three doctors had listened to her chest by this point, and all said she sounded clear, the ER doctor decided to do a chest X-ray to rule out a sneaky case of pneumonia.

And he wins the prize!

Unfortunately that hospital had no beds open so Angela was transported by ambulance to the partner hospital. Angela is all about medical stuff, and ambulances, etc so she was thrilled to get a ride!!! When I arrived there a short time later two doctors were in her room. That's when I was informed she not only had pneumonia, but a quarter size "pocket" of something they could not identify. It did not look like a mass, but some type of fluid. They asked if she had been exposed to anyone with TB. They also asked how long Audrey had been home. It was one year last month. Both doctors exchanged looks then wordlessly left the room. When they returned a few minutes later they were fully gowned, had face shields, gloves and booties. They didn't *think* she had TB, but it was possible and they weren't taking any chances.

So let me recap a bit: Angela is admitted to the hospital at what ended up being 2:00 in the morning. I had four kids at home, one of whom tested positive for strep. Dean was out of town. Luckly of all the kids to be hospitalized it was Angela this time. The one who always says, "Just drop me off at the door" and is disappointed when she doesn't get admitted!

As it turned out all the kids ended up testing positive for strep. I had my pre-op physical and begged my doctor for antibiotics so I wouldn't have to cancel my upcoming surgery. Dean came home in the early morning hours on Friday. On Saturday Angela was very disappointed to discover she had missed her prom, and on Sunday she came home.

The final verdict of this hospital stay is this was a bad episode of aspiration pneumonia. Angela's swallow has gotten MUCH worse, and we need to get her back to Boston to visit Dr. Nurko. He is the only doctor in the country who will treat Angela and her Cricopharyngeal Achalasia. The pulmonologist here, who works with people who have achalasia of the LES, doesn't want to touch her because she is high risk. The Pulmo here, who trained under Dr. Nurko and now has a manometry clinic here said no, Angela needs to back to Boston. ASAP.

Insurance says no.

I spent the past week both recovering from surgery and arguing with the insurance provider about getting Angela back to Boston. Guess what I'll be doing more of this week?

Long overdue updates

I don't know how many times I have come to update, only to realize I have no idea where to start. There is SO MUCH going on in the Garden!

I guess I'll start where I left off.

Here we are, 4 1/2 months into 2015 and our life is not looking the way I pictured it. There are already surprises, changes of direction, and "Oh my gosh!" moments that cannot be anticipated years in advance. Thankfully Dean and I are pretty "go with the flow" people!

In February I posted about an upcoming surgery Abel and Audrey would be having. The same exact surgery for both of them. Audrey needed one knee and both ankles fixated, and Abel need both knees and both ankles. The surgery went well, the recovery a bit interesting.

Abel's surgery was done first. Given his history of being very combative when coming out of anesthesia the staff had Dean and I go back to the recovery room long before he was awake. Ours were the first voices he heard and the first faces he saw when he opened his eyes. He didn't complain much about pain (and he is one of our kids who DOES tell us when he is in pain.) A short time later they told us Audrey was starting to wake up in the next cubicle so Dean went to be with her, since she is a total Daddy's girl!

We had driven separate, thinking that one of us (probably me) would go home with Abel who was ready first. It is always good to be flexible with your plans! HA! Abel said he had to use the bathroom so Dean and I wheeled him over. The dr. said there were no restrictions and he could stand and walk if he tolerated it. Dean and I each stood on one side of him holding him under the arms as he stood up pretty quickly…and promptly fainted. And then threw up.

There was no walking after that.

When Audrey was done and ready to go home she was not at all willing to bear weight, so we wheeled them both out to the van and got everyone loaded in. Abel constantly looking like he was going to pass out or throw up. It took both of us to get Abel into the house and to the couch, but it didn't take more than an hour before he started hobbling around, and throwing up anything we tried to give him. Within a couple of days he was walking normally again.

Audrey was another story. It took her nearly a week before she was willing to put weight on her legs. Her right ankle was swollen for days, but even when it went down we couldn't get shoes on because they rubbed on the incision.  Her foster family in Serbia had sent Serbian house slippers along. They are much more flexible and zip up the side. They are cut just right so they didn't rub on her incision at all. Three weeks out there are still some mornings when she's a bit stiff and sore but once she's up and moving she's fine.

The kids have check ups with the orthopedic surgeon this week for X-rays and to check progress. I'm curious what he has to say about the occasional swelling that Audrey has. With all of this I decided even if they're ready at the same time, there is NO way we are doing the four weeks of casting ankle to hip at the same time. Having two, simultaneously, who could not bear any weight was too much for this mom. Lesson learned!

Monday, March 23, 2015

What do you do when...

What do you do when your prosthetic boob falls out of your bra and onto your feet in the grocery store? Why, pick it up and put it back in of course!

What do you do when there is an itch on the INSIDE of your boob somewhere behind the tissue expander? (seriously, how is this even possible?) You shimmy around a lot trying to shift the tissue expander to scratch the itch, which is like a phantom itch and can't really be scratched.

What do you do when you're trying on a prosthetic sports bra thingy in Nordstroms and you get very stuck in it? You do NOT cry for help! You would take a selfie if you could get to your phone. You do struggle and twist your way out, finally exiting the dressing room sweating profusely. "I'm good for today." you say to the sales lady who's been helping you. (by the look on her face this is not a first-time occurrence.

Monday, March 16, 2015

One of those days

Today was one of those days...

...when I realize there are 562 chromosomes in my living room. (10 kids x 47 + 2 moms x 46) Oh, and two dads in the basement doing some much needed work. So thankful!

...when I finally head to bed at 1:45 a.m. and realize that I am so behind on laundry that not one child has clean clothes for school in the morning but that everyone is fed, bathed (some twice) and happy.

...when I write a note to Angela's gym teacher, "Due to no fault of her own, Angela will not be changing clothes for gym today. Don't ask."

...when at 2:00 am I remember the drywall guy will arrive in 8 hours but the winter dog crap is not yet picked up in the newly-melted back yard that he has to walk through to get the sheetrock into the basement.

...when I say things like, "Don't dangle your sister's underwear." and "Take that out of your nose."

…when I look at the bottle of pills I am supposed to start taking tomorrow - and every day for the next 5 years - that my oncologist says will make me feel like I am 90 years old. On a good day. (Its possible I moved them to the back of the medicine cabinet and am pretending I didn't see them. Maybe Tuesday would be better.)

…when I look at the huge smile on Angela's face as she receives her last award from a 6 year floor hockey career, wiping a tear from my eye as she leaves the awards area, stops to give a thumbs up and shouts to me at the back of the room. "I love you mom!"

…when I watch Axel receive his first ever floor hockey award and I marvel at how far  he's come in 4 short years.

…when I feel oddly energized by an insane weekend.

… when I look around the dinner table at all the faces and feel God's blessing in our lives.

Tuesday, March 10, 2015

Remember when I said...

Remember when I asked "What should I do?"

Between the comments here and on Facebook, there were some great suggestions, even if some did include water (Hello, I don't DO water!). So here's where what I decided:

I want to learn these things this year:

  • Some kind of dancing - Ballroom or Hip Hop are on my radar
  • acrylic painting
  • how to play the guitar, or at least some basic chords. I want to be one of those moms who can play the guitar and sing with her kids. Like in the movies.

I want to do:

  • I was going to do skydiving. But..ugh…I dunno. Angela REALLY wants to skydive and she is over 18 now so..maybe? I would love to try the indoor skydiving thing. I'm trying to find a local place.
  • I want to climb something. Not like a mountain, because, well we live in MN and there is a lot of flat! 
  • I want to take a really long walk. Like the 3 day for breast cancer, only I don't want to support that particular organization. I think I just want to do it because I can. Maybe as a fundraiser then donate the money back to an organization, like the Down Syndrome Association of MN, or a Breast Cancer related organization who I know spends the money well. First I have to start the training regimen to be able to do this. I might start tomorrow.

I want to meet one person this year:

Actress Kathy Bates. We share a birthday and a journey through Breast cancer. She is an actress and I used to do a lot of community theater. If I could be a real actress I would be a lot like Kathy.   I don't know how to make meeting Kathy happen but now that I've put it out there, maybe God will help me find a way.

Now, I am off to take a walk then find someone to teach this broad how to play guitar. Oh…I should buy a guitar. Hey! Maybe Kathy would want to do the 3 day walk with me? Kathy, if you're reading I promise not to talk too much. And besides, if you're reading here you've already decided I'm a crazy stalker lady.

Saturday, March 07, 2015

The year I disappeared

One year ago four words changed the course of my life as I knew it.

"You have breast cancer." 

The battle was on. Every ounce of my being became about the fight for my life. The future ahead of me and the information I received from my doctors on a daily basis felt like a battle ship parked on my chest. Crushing me. That first week was all about breathing. Several times each day reminding myself, "Breath in, breath out. Do it again." 

I went through the motions of each day numb. "Please God. Please NO!" I lived a charade of acceptance and positive outlook. That's what everyone else needed to hear, and its what I had to tell myself. I didn't FEEL positive. I lied. While I told myself and my loved ones, "I'll get through this, I'll be fine. I'm good." it wasn't what I was thinking inside. Inside I felt death stalking me. At night I was plagued with dreams of rotting flesh, breasts falling off in the freezer isle of the grocery store, and hospital morgues filled with not bodies, but boobs. Hundreds and hundreds of boobs. 

And then I started chemo.

Chemo is the epitome of the battle between good and evil; pumping poison into our bodies to keep us alive.

Chemo caused the loss of myself, and I watched as I disappeared into a chemical haze. Swimming through the murky cloud was all I could do, like sea life covered in oil after a tanker spill. Only by the grace of God, because he loves me so, was I able to keep moving each day. Swimming in thick, greasy, muck, my limbs exhausted with the effort.

I was still a mother. 

I bathed the children. 

I read to the children. 

I fed the children. 

I did the laundry.

I scrubbed toilets. 

I did all the things the mothers do. In the haze. In the oil and muck. In the filth that is chemo. 

I did all the things the mothers do, only it wasn't me because I was gone.  I was lost inside myself and I didn't have anything left for anyone else, but I did it anyway. 

The days I was in agonizing pain, I eased myself into a steaming hot tub of water, tears streaming down my face as each wave of agonizing pain washed over me, threatening to crush my knees and hips into bits of nothing. I cried out to God, "Please God. Please…please…please make it stop. MAKE IT STOP!" And He would answer my prayer every time as I drifted off to sleep in the scalding hot water. As it cooled to room temperature I would wake, groggy and ready for my bed. The pain nearly completely gone. And I would sleep. I would rest knowing He was still here, even if I wasn't. 

It took months to come out of that fog. As I did, I realized my body held so many remnants of the attack. My finger and toenails had turned gray with black streaks, four deep ridges running across each nail, evenly spaced, one for each round of chemo. My body was void of any hair. Over the next few months I watched my nails slowly change, the discoloration growing out to the ends. Each time I clipped my nails I was clipping away the evidence of my toxic bath. The color of my skin slowly improved. My eyebrows, lashes, armpit and pubic hair returned.

Then came the darkness.

Triggered by a combination of chemo and the stress of several surgeries I was thrown into menopause. Thrown as in, "The woman was loaded into a cannon, the fuse was lit and she was shot directly into a brick wall which has been reinforced with steel rods. SPLAT!" 

Women who go through menopause naturally experience the changes over a period of years. Mine happened in a week. I was irritable, and I was depressed. I was all about doom and gloom. I said "fuck" a lot. I had finally made it through chemo's oil slick into clean waters, but I was still drowning! I was swimming as hard as I could, kicking and paddling but still sitting on the fucking bottom of the fucking sea!!!! I've never been a good swimmer really, so its no surprise I couldn't save myself. But God! He reached his hand deep down into the waters and ever so gently brought me to the surface. Not too fast that the pressure change would kill me. Just fast enough that I could look around a bit. Get my bearings. Regain my balance.

When I finally broke the surface I gasped at the freshness of the air. I marveled at the sunshine, even in the midst of our Minnesota winter. So much time had passed! I inhaled deeply, filling my lungs, expanding them, for they had been crushed by the depths for so very long.

Only recently have I found my way to the shoreline and basked in the warm breeze, letting the sun warm my body. Alive. Rested. Energized. I was finally ready to leave the shoreline to explore life once again.

I began to find the joy in my days. The joy in the mundane. Each morning to be greeted by the amazing people in my house. Those sleepy hugs from Asher that he saves for only me. Angela a young woman ready to graduate high school in a couple of months. Axel, tall an strong, responsible and helpful. Abel with his nervous chuckle, wanting to please me. Audrey, joyful, determined to be heard by all. 

And my love. 

How I love this man God blessed me with. My true partner, walking through each day with me, both of us perfectly in step with one another. Finishing each other's sentences. A team matched by the God who knew what was ahead. I was so lost for so long, but when I returned he was right here, waiting to pick up where we left off, only better. We are BETTER than ever, so in love that sometimes I wonder how it could be that my heart ACHES with it?

A year. 

The journey of a lifetime. 

I am back! 

Saturday, February 21, 2015

Ankles, Knees and Guided Growth Systems

Audrey is one very flexible girl. People like to use the term "double jointed" but there really is no such thing as being double jointed. A person can have loose ligaments and tendons, or ligaments that subluxate (slip out of place), but no double joints.

Audrey…oh this child…she can bend and twist in all kinds of interesting ways. One of the symptoms of Down syndrome is low muscle tone, which allows a child to be hyper-flexible. But Audrey is different. She bends many parts of her body backwards, and we can often hear her dislocating various joints. Like her ankles. And her knees. And her hips. And her shoulders. And her wrists.

Yes, dear friends, Audrey is able to completely dislocate all of those joints. I mean, pop her shoulders right out of socket, bend her ankles in ways they should not go, bend her knees backward toward her body.

The first time I saw this was on the plane coming home from Serbia. The flight attendant came walking down the isle, passing us with a horrified look on her face. I turned to see Audrey, knees bent backward toward her head, ankles dislocated, the bottoms of her feet against her face. I have never been able to catch a picture of this, but I can assure you it makes me queasy to look at! She has never expressed pain from any of this, and I suspect when she sat in a crib for years with nothing to do playing with her joints was a form of entertainment and sensory input. Now that Audrey has started running the instability of her knees has become more apparent and needed to be checked out.

Abel, too has one knee that is quite loose and appears to be what prevents him from walking down stairs with any kind of efficiency as well as preventing him from running.

We first met with a doctor who specializes in hips. He did a series of X-rays and thankfully both kids' hips are ok. But their knees? Yeah, he confirmed there is a big problem there. By the end of the visit we knew both kids need surgery on their knees. He sent us on to another doctor who does only knees and ankles.

Oh my, this is far more complicated than we ever expected! Yeah, we can fix the loose ligaments and tendons in their knees but there is no point in doing so until we first fix their ankles AND a different problem in the knee.

In both kids, their knees and ankles are misaligned. This is most likely due to lack of age appropriate motor activity during their institutional years. As the doctor showed me the X-rays and explained where the problems were (which were quite evident!) Axel's ankles came to mind. I think he will be paying a visit to this doctor as well!

April 7th Abel and Audrey will be having the 8 plate Guided Growth System placed in their legs. A series of plates and screws will be placed in their growth plates at both the knees and ankles. These plates will stop the growth of one side of the joint while the other catches up, putting their joints back in line to prevent long-term damage to all the joints in their legs including feet, ankles, knees and hips. While the surgery itself is a bit complicated, the recovery is quite easy. They will be up and running around within a couple of days without any restrictions!

After the surgery, every 4-8 weeks the kids will have X-rays done to watch the progress. When growth has reached the designated point, the plates will be removed. At that point they will have another surgery on their knees to tighten the ligaments and repair the soft tissue damage that has been done over their years of chronic subluxation. That particular surgery - which will likely happen sometime around September - will require 4-6 weeks of being casted from ankle to hip in both legs…for both kids. The good thing is Abel will probably grow much faster than Audrey so we won't have to do their casting at the same time.

As for Audrey's ankles, dislocating ankles are quite difficult to fix and don't have a very good success rate. Instead she will get a more substantial AFO to give her more stability.

So, that is four surgeries for kids (not even counting if Axel needs this done before his growth plates fuse!) and 3-4 surgeries for me all within the next 6 months or so. Oh yes, 2015 is going to be one very interesting year. 

Friday, February 20, 2015

What should I do?

I'm making changes in my life. Some are evident to those around me while other changes are more personal, to be kept to myself as I strive to be a better person, mother and wife.

But I also want to try new things. LOTS of new things! I think I'd like to try something new each month and post about it here. What are some things that you have always wanted to try but would rather watch me do instead? Disclaimer: jumping out of airplanes and going underwater is not allowed. ;-)

Monday, February 16, 2015

Before and after

A friend of mine is getting ready to start the process to bring another child home. She asked me for before/after pics of my kids. It is amazing the changes that happen to these kids in just a short time home. I wish the emotional healing happened as quickly. Sadly, it takes years to heal the deep wounds caused by trauma and lack of care in the institutions. One must also consider the trauma of being ripped from all they know, moved to the other side of the world and forced to learn a new language and culture outside institutional walls.

Tuesday, February 10, 2015

We thought we were done!

We thought we were done adding to our family, but there was one more member we didn't know about.

Meet Kat the Cat.
She is a rescue, approximately 3-4 months old. Just a sweetheart!

This is her most favorite resting place; right on my chest where she purrs and keeps me warm. It does make typing on the computer a bit interesting, especially when she's in a mood to chase the curser around the screen. 

Kat and the dogs get along very well. She likes to get a drink whenever one of the dogs does.

The kids love her, especially Abel who is oh-so-gentle with her!
When she purrs he likes to lay his head on her to feel the vibration.

Wednesday, February 04, 2015

Its been awhile

Hi everyone.

I'm still here. We're still here. Life is good, just very, very busy. I like it that way! I have some projects underway I want to blog about but I'm having a lot of trouble putting my fingers to the keyboard these days.

Tomorrow I will have my 6th surgery in 10 months.

Oophorectomy. Ovary removal. Take those suckers out to decrease the level of estrogen in my body. Decrease the estrogen that fuels my cancer. Its just an outpatient procedure, but thats how they do a lot of these surgeries now. Three of my major surgeries have been outpatient and I was home in my recliner - heavily drugged - by 5:00 pm.

It is kind of weird that Dean and I have a routine worked out for when I have surgeries: who does what to get the house ready for me to be out of commission, what to do with the kids on surgery day, knowing how long it usually takes for me to wake up from anesthesia, get through recovery, etc. Who in the world makes surgery part of their normal? Today I was getting kids of buses, telling drivers who will be here with the kids tomorrow. One of the drivers said, "Well, you always recover so well and jump right back into life."

"Always" because this is normal for us. That's just weird.

And yet there is always that tiny fear. In the last week people have made comments like, "This will be a piece of cake compared to your other surgeries." and "You'll be back to yourself in no-time." Those statements feel like a foreshadowing to me. Kind of ominous. Like this one surgery that is supposed to be so simple may not go so well. But I will do what I always do, making sure Dean knows where all important documents are, just in case.

You'll be happy to know my left foob (fake boob) is looking fantastic as my plastic surgeon continues to expand it. It almost looks like a nipple-less breast now. Oh, oops! I almost forgot that the expander slipped under my arm so it looks like a nipple-less breast under my arm. Aren't you glad I don't post pictures?

My right side, the one with the horrible infection over Christmas, has healed nicely. In the world of breast cancer reconstruction that means I don't have open wounds anymore. What I do have though, is a huge dent and some creases that don't belong on a woman's chest.  All my tops look a bit odd with only one boob. Occasionally I wear a prosthetic but I get so HOT with it. Most of the time I just wear bulky sweatshirts. This is the first time in my journey that I have felt uncomfortable with my appearance. As you can imagine I'm looking forward to April when I can start rebuilding that side again, and next fall (next FALL!) when I can have my final surgery.

So tell me, what have you been up to the last month? What is consuming the majority of your time? I'm making some changes in our life that I can't wait to tell you about. Where do you feel you need to make changes in your life?

Tuesday, January 13, 2015

Hello 2015: Pt 2

Back in mid November I met with my oncologist. I hadn't been back since about three weeks after I was done with my last chemo and I was WAY over-due for a check up.

I thought I was done. I had a lumpectomy, then chemo, then mastectomy. I can't take Tamoxifen though, and my risk of recurrence without that drug is about 25% so I need to get my ovaries out to reduce my estrogen related risks.  Still, I had done everything I needed to do. All that was left was finish the reconstruction process and move on with my life.

I was stunned, literally brought to tears, when my doctor insisted I go on a drug called Arimidex. It is not just this drug, but that I will have to take it in combination with another drug called Zometa. This is given as an IV infusion every 6 months as long as I'm on the Arimidex. The two drugs have a combined list of side effects that is daunting. But what are my alternatives? At this point my risk of recurrence is very high.

I was getting tired. This is a long battle and I am weary. As much as I remind myself that I am alive, that I don't have cancer anymore that we know if, that there are others far worse off than me, I could still feel myself sinking. I was no longer able to see the positive in much of anything, and my sense of humor was disappearing. Surely with all the things I have done so far I didn't *really* have to go on these drugs? I sought a second opinion.

My new oncologist explained things to me so much better. There is no doubt in my mind now that I must go on these drugs. But, he wouldn't let me leave without having a bunch of things done and getting other visits scheduled. Another to-do list for me:

1) get a ton of bloodwork done, 17 vials drawn. One of the tests will be to look for a genetic marker for strokes which will help in decision making related to cancer treating drugs in the future.

2) Scheduled an appointment with the Onco-gynolcologist. She will be doing my ovary removal, hoping for surgery the first week of February.

3) did a DXA scan to check my bone density. This is crucial before starting the other drugs since they can deplete minerals from the bones.

4) I must drop 60 lbs as soon as possible. Even though my ovaries will be gone, the adrenals still produce estrogen as does body fat. I need to have as close to ZERO estrogen in my system as possible. I am scheduled to see a metabolic specialist from Mayo.

5) I have been crying for two months. Tears that come out of nowhere that overwhelm me. The past eight months combined with the prospect of five years on the new drugs I have to take, throw some surgeries in there and a major setback to my reconstruction, and my emotions were getting the best of me. I had no control over them anymore. My new oncologist very gently suggested I talk with my primary care physician about getting on an antidepressant. "This is a very normal response to cancer and its long-term effect on your life. But I need you thinking positive about the next five years, not dreading everything and talking yourself into every side effect before you even start taking the drugs."

Ok, yeah, he had a point.

Up next: Hello 2015 pt 3…Pulling up my bootstraps, with a little help.

Sunday, January 11, 2015

Hello 2015, pt 1

2015, you're going to be a better year, I just know it!

However, if 2015 is going to be a better year, I need to take some steps to make it happen. 

In my Christmas Eve post I mentioned I had been in the hospital. Those who follow me on the FB know some, not all of the details. Here is a quick recap (which will be followed by changes for 2015):

Remember: September 12 - double mastectomy, October 27th - surgery to replace both tissue expanders and clean up infection and scar tissue.

Week of November 17 I went in for a tissue expander fill, but first asked my doctor to take a look at my incision from my last surgery. She decided to hold off on the fill that week and wanted to see what the incision was going to do. 

November 26th, day before Thanksgiving: I have an area of really thin skin (which really means no sub-cutaneous fat) that wasn't happy being stretched and was splitting open. The surgeon did a scar revision in the office. Come back in two weeks.

Thanksgiving Day I get hit with Influenza.

December 10th: incision still isn't looking good. Plastic surgeon removes a lot of fluid from the tissue expander to allow enough skin for another scar revision in the office. Come back in two weeks.

December 17th: Incision is looking better, but no fills allowed. Lets leave it alone until after the holidays and just give the skin time to heal.

Friday, December 19th: My sister and I spent a fun Friday night playing with my polymer clay buses. Aren't they cute?

Saturday December 20th: Dean and I do some Christmas shopping, arrive home about 5:00. At 6:30 my pec muscle on my problem side is suddenly very sore and stiff, as if I've been lifting weights. I have very little sensation in my chest so I'm concerned that I can feel this. About an hour later I spike a 103* temperature. I think I have the flu again and call the hospital to see if I can come in and get Tamiflu since I'm in the "high risk" group. I decide to wait until morning because I have a suspicion this isn't the flu. I go to bed hoping the fever breaks, but I am miserable.

Around 2:00 a.m. I woke up with an odd sensation in my chest. I went to the bathroom mirror and lifted my shirt. I was a bit horrified to find the "odd sensation" in my chest was a significant amount of swelling. Crappity crap crap!!! I decided a few hours isn't going to make much difference so I went back to bed.

8:00 am: Called my surgeons office. The Dr. on call told me to head to the ER where an ultrasound is done and there is a huge amount of fluid that they drained and sent out for cultures. (so very weird watching on the screen as this extremely long needle is inserted into my boob and the fluid is all sucked out! While they were waiting to admit me they went ahead and started me on two different oral antibiotics (vancomycin and Gentymicin) Only I reacted to the Vanco so they added benadryl which knocked me out for several hours.

I stayed on IV antibiotics for two days while also getting more benadryl with each dose so I mostly slept. I still had a 101 - 103* fever so sleeping was fine with me! My chest continued to swell. I was not even an A cup before the infection but now I was swollen so huge it took both my hands to cover the area. The swelling went all the way around to my back. Thankfully it didn't really bother me much due to lack of sensation. Still I was on pain meds because my BACK was killing me from the hospital bed. LOL I made Dean come into the bathroom in my hospital room to take some pictures of my chest. Nothing like some really bad porn shots for the family scrapbook! LOL

I was so upset by this whole turn of events. I knew I would be having surgery and I would be flat on that side. No breast at all, not even a fake one. I wanted to be done. Just leave me alone and I will be flat. I don't care! I didn't care about bald and I don't care about flat. But I DO care about having one boob (called a "uni-boob" in the breast cancer world) and I did NOT want to do that. DID NOT! I was sick, I was miserable, I was crabby, and I had a massive caffeine withdrawal headache that I could barely see past. All I could do was cry or snap at someone. I was one hot mess!

 Tues December 23rd I had surgery remove the tissue expander and clean up the infection. Afterword my surgeon told me it was a mess in there. I am now flat on that side and maybe almost a B cup on the other side. I am not wearing a prosthetic because, like wigs, they pretty much drive me crazy. Not only is it very obvious even in clothes, but the fabric of all but the thickest materials falls right into the very deep DENT I have in my chest. 

Christmas Eve: Discharged from the hospital, yet another drain in tow.

Coming up: Meeting with my new oncologist and decisions that must be made

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.