Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, January 25, 2020

Abelism in schools

"AbleismdiscriminationAbleism, type of discrimination in which able-bodied individuals are viewed as normal and superior to those with a disability, resulting in prejudice toward the latter."
source: Britanica.com
...............................................
marginalized
/ˈmärjənəˌlīzd/
adjective
  1. (of a person, group, or concept) treated as insignificant or peripheral.
    "members of marginalized cultural groups"


Let me preface this by saying I LOVE our school district. Our district has provided amazing services to the students in our household, during incredibly difficult circumstances. Our children each came with unique needs that most school districts have never encountered As a team we have worked together, building IEPs , and professional relationships, that assured the needs of our children would be met. We have formed personal relationships with staff, who clearly love our children as much as we do.

Even in the best district, there is room for improvement.

Today I learned just how easily our children with disabilities can be marginalized by people who don't even realize they are doing it. Let me back up to last year.

One day last spring Axel came home school quite sad. Because he has limited communication, it took a bit for me to understand why. Axel was part of a dance class at school. Over the weekend there had been a performance he'd missed. I felt terrible! I must have missed the communication about the program, and because of that he had missed the performance. Poor Axel! Mom dropped the ball.

This year  daughter Audrey participates in the same dance class. Earlier in the week I was asked if she would be "coming to watch" the dance program on Sunday. I was confused. What dance program? Today I learned the dance class was having a performance and Audrey, along with the other special ed students in the class, were "invited to come watch."

Wait. What?

Now I understand what happened with the performance Axel missed last year!

Yes, they were invited to come watch the program. They were not invited to participate in the program because the teacher felt they "didn't know the steps well enough." This is supposed to be a fully inclusive class. A "fully inclusive" class means that a student's disability does not matter. The fact a participant with severe autism cannot learn all the steps doesn't matter. If the student is a participant in the class, the student participates in the performance!

My children, and the other special education students in this class were marginalized, and made to feel they are not good enough because their disabilities prevent them from learning all the steps in the class. They were completely excluded. They have listened to talk about the program, and were no doubt getting excited about it, only to find out they're not actually allowed to participate!

What about the other, non-disabled students in the class? What were they thought? They were taught it is ok to marginalize those who have disabilities. They were taught that if you are not "good enough", you will be left behind, and the adults around them support that attitude. But don't worry, you will be invited to sit in the audience and watch your classmates perform. You must aspire to be "normal" in order to be good enough to perform.

An inclusive dance class should not be about what is being done to help the person with a disability participate in the class. It should be about how ALL the students participate in the class together, as a group of dancers.

To quote Inclusion Strategist Verna Myers, "Diversity is being invited to the party. Inclusion is being asked to dance."


Sunday, January 05, 2020

Welcome to 2020!

2020 started off with a BANG for me! I expect this year is going to bring lots of information and new people into my - our - life.

I am considering moving my blog. It seems bloggers are using different platforms now, most of which are new to me. I could do a Vlog but I don't know that people want to see my face rambling on about nonsense and my personal opinions on life.

I want to hear from YOU! What is your favorite type of blog? Do you prefer Vlogs? What platform do you most  often access? 

Monday, December 23, 2019

Christmas Time is Here

The day before Christmas Eve. 

As I decorate Christmas cookies, I listen to “Christmas Time is Here”. I listen and watch, as my children who are former orphans attempt to sing along, each in his or her own way. Once dances, one rocks, one chants. It has taken years to reach this point. 

And my heart aches.

It aches because I am reminded of all the children who are NOT celebrating Christmas because they have no family. 

Kids right here, in my world. 
In your world. 
In my country. 
In your country. 
In my state. 
In your state. 
In my town. 
In your town. 
In my neighborhood. 
In your neighborhood. 
They are everywhere. 
They are in institutions. 
They are in hospitals. 
They are in foster care. 
They are on the streets. 

Some are now legal adults who never found acceptance into a family. They will belong to no-one until they create their own.

Chances are as you walk through Target, rushing to complete your last-minute shopping, you are passing a foster child who is "faking it" again this year, because they have no family. If they were really lucky last year, they received a gift, which has likely disappeared in yet another transfer to yet another foster home. They refuse to get their hopes up about what this Christmas will or won't bring.

No, we cannot fix all the broken pieces of a child’s heart and spirit. What is visible to us is only the tip of the iceberg of a child’s brokenness. So much hides underneath!  We can put bandaids on the wounds we find, help them heal as much as possible, but the scars will always remain. It is never easy. It is always hard. Life altering events are like that. 

All you have to do is open a door. 

We have room here. 


Do you?

Wednesday, December 18, 2019

We Have Room Here

Our documentary is being released for it's first showing!

Some of you are blinking, thinking "Did I read that right?" Yes, yes you did! Nearly two years ago we were approached by a local photo journalist, Patrick Sheppard from Bright Circle Productions, who knows our family, and asked about doing a documentary. "Everyone wants to know how your family works!" he said. After some discussion we started filming in April 2018.

Then in October 2018, Chris Ulner from Special Books By Special Kids interviewed our family. He is so much fun to work with! Chris in person is exactly like Chris in video (if it's possible, his eyes are even more blue!) and he has an fantastic way of interacting with the kids. You can check out his video here. By the way, it is reaching 1 million views. Feel free to share to push us over the edge!

In the meantime, we were still filming with Bright Circle Productions, finally wrapping up in June with Axel's graduation. It took some time to pull the last pieces together, but FINALLY we have a release date of January 11th. That is a local theater release, and there will be another small group hosted by the Highland Friendship Club on January 14th. I'm not sure what the producer's plans are after that. He'll either do another theater showing, or post it as a download.


Asher joined the circus!

For several years I have knowns about a circus school in our area. Who knew there was such a thing? Circus Juventas is a pretty amazing place. The first time I visited, I was fascinated by all the apparatus, and could picture Asher on each one of them. If you've been around here for a long time, you know Asher LOVES to hang,  climb, be up high, and inside of things. Circus school seemed a perfect fit, so I got him on a waitlist.

Finally in September he was able to start. Oh this boy! He is SO HAPPY at Circus school!

His very first day, the instructors quickly learned that Asher has NO FEAR, is willing to try virtually anything they suggest, and he is VERY strong! His favorite is the trampoline, where he is learning to jump very high, so that he can - get this - land either standing or sitting in the window of a mock building next to the trampoline.

Here is an example of what the youngest entertainers do at the circus performance.

Since Asher has just started, he has to be in circus school several months before being allowed to perform. This year is spent learning skills on the different apparatus. I can't wait until his next class (after Christmas) to show you what he can do on trapeze! For now, here are some fun pics and a video.








Wednesday, December 11, 2019

Christmas Sweaters

I love Christmas. A lot. 

I have always loved Christmas, but there were a few years that I really struggled to feel "it". Some years it was just too much work! One year when Angela was just starting to walk, I didn't put the tree up until the day before Christmas and I took it down the day after. Apparently my other kids weren't feeling it either since they didn't seem to care. 

When Dean and I first met and decided to share house, our home sat far back off the street, up a very steep hill. We put a few lights on the roof, and having my son Tyler come over to climb up there became a tradition. When we found our current house I was excited at the outdoor decorating possibilities. The entry area seemed perfect for Halloween fun, and the rest of the yard would lend itself to fun Christmas decorating. 

We love our new neighborhood, and spent that first summer getting to know our neighbors, with Dean warning them about my tendency to sometimes go overboard with lights. There are a lot of empty nesters on our quiet street, who are past the age of spending hours trying to reach as high as possible with a string of lights. Our first Christmas season here was unusually warm, bringing 70* temperatures in November. It felt odd to be hanging Christmas lights in the trees wearing a t-shirt. I imagined this is how it feels in other parts of our country that don't get buried under feet of snow and frigid temperatures. 

We're celebrating our fourth Christmas in this home. I start setting up the outdoor lights in early November, then on Thanksgiving evening, when the dinner is done, we have a little lighting ceremony in the card. And by ceremony, I mean the family stands in the street and I run around flipping switches and plugging in extension cords. No "big switch" for us like on T.V. The weekend after Thanksgiving is for getting the indoor decorating done, and the tree up. I've been surprised to find Amos is the most excited of the kids. He turns the tree lights on the moment he arrives home from school and spends many hours admiring the tree and talking about Christmas in general. 

Over the last few years I have developed a love of Christmas sweaters, which evolved into a goal: eventually have enough sweaters for every day of December. Ambitious, I know. Frivolous, and totally unnecessary, absolutely. Christmassy all the way! 

One thing I did not take into consideration is my age. I am 52. The middle aged women reading this post know where I'g going with this. They are likely already sweating! 

I thought I was done with this whole change thing. I mean, who goes through it THREE times, much less four??? The first time was chemo induced in 2014. The second time was 2015 with the hormone blocker Tamoxifen, which I was supposed to take for the next eight years but I only lasted about three months before the side effects had me begging my doctor to stop. Then in 2016, as part of my post-cancer treatment I had my ovaries removed, throwing me into menopause like a brick wall! UGH! Then it all went away, and I went on with my Merry life. Or so I thought!!! I have found I am having my own personal summers many times a day now. AGAIN! I call not fair! And also, this is odd since I should have very little, if any estrogen left in my body. (if you haven't seen recent pictures, on the request of my doctors I also lost 85 lbs, because fat both stores and produces a small amount of estrogen) But, mostly, I'm just annoyed that I can't wear what I want. I can put a sweater on and be fine, then 30 seconds later be running back to my closet while stripping as fast as possible! I have finally given up.

I'm hanging onto my sweaters though. Maybe next year I'll be able to wear them! 

Sunday, December 08, 2019

Apartment Trials!

When Angela was 11 years old she told me one day, "Mom! I have bad news. I'm moving far away and you're not coming." After all, that is what her big brothers did, and she always looked up to them as little sisters do. Unfortunately for Angela, her health was never very stable, and this was not going to be a realistic expectation for her. Then, a few years ago when she was so sick, and we were told she would not likely survive, we stopped looking into the future more than a few weeks at a time. Thanks to a life-saving, life-altering surgery, Angela's life changed. Our goals for her changed, including being able to live at least semi-independently.

This past week she did a one-week apartment trial assessment with a local agency called Kota Connections. The purpose was to see what areas of independent living skills she has mastered, where she needs a little more work, and where we know she will need supports.

I'm happy to report our impression of Angela's living skills are pretty accurate! In the trial we confirmed she needs help with cooking, and we knew and due to medical problems she can't be alone when she eats due to her unstable swallow. We discovered when faced with new-to-her machines she just needs a few prompts for laundry but will soon be independent with this. Cleaning is an area she needs help. The rest of her day: taking medication, getting out the door on time, etc she does completely independently thanks to her Goally device. (When staff arrived to check on her in the morning she was up, and ready to go, waiting at the door for her ride.) Even when there was a change in schedule and she needed to be ready to leave earlier, I was remotely able to make adjustments to her Goally.

Our next step is to 1) wait for her new county case manager to be assigned because she's currently without one 2) contact the agencies that do supported living (I think her previous case manager did this and 3) find a roommate!

If you are considering the possibility of your adult with a disability moving out, but are unsure if they would be able to manage it, I HIGHLY recommend doing an apartment trial! It allows you to learn where your loved one's independent living skills are before you are stuck in a one year lease. I know a few people who have done similar trials and learned their loved one was READY, and others who had a list of skills their loved one needed to gain or improve before moving forward.

Wednesday, November 27, 2019

New Header

Did you see our new header picture? Another year, and Angela has moved to the middle of the group. I'm pretty sure that Amos has bypassed her since we took this picture in September.

Not many people are blogging anymore, but we have some really exciting things happening in our family, and are excited to share them with you. You can also find me on Instagram at SpringFamilyLife. I am trying to get in the habit of posting there. Still working on it!

Tuesday, November 26, 2019

The Dream

There was a night, several years ago, when I had the most vivid, realistic dream, I have ever had.

In my dream, I held one of my toddler children in my arms. He wore an outfit that was my favorite at the time: red pants with a red and white striped shirt with red suspenders. I could feel the corduroy in my fingers. Sleepy,  he nuzzled into my neck. I could smell his hair and breath. He whispered “My mommy” in the same voice I have recordings of. I rocked him. I sang to him, his favorite songs of the time. “Hush little baby, don’t say a word...” While I sang the phone rang. I didn’t answer because I was enjoying this moment with my son. But I blinked, and he was gone. All that was left in my lap were the pictures I have of him. I sobbed.

I woke, wiping tears from my eyes. My heart ached. I felt he was gone. I sat on the couch, fully awake, with tears streaming down my face that kept coming and coming. Why? What was wrong? Finally after several minutes I got on my computer. We hadn’t heard from him in several months Over the years I had learned where to look. I usually searched news stories and jail rosters, hoping to find him. On this night I did not.

The next morning, still feeling the anguish from the night before, I looked again, this time in a county that was just outside my normal search radius. If it wasn’t for the name listed I would not have recognized him. He was not the little boy in the pictures. He wasn’t even a shell of that child. The boy was truly gone, and in his place was a man I didn’t know. Several months later I would write about The Stranger in My Car. That was 3 1/2 years ago.

For three years he worked very hard, and did everything required of him. I went to family days at the treatment facility two hours away, and I was there for his graduation from the program.  He lead several of his friends to treatment facilities. I was, and am, so proud of him for all his hard work. He called often to check in with me and remained close to his brothers.

But mother’s know things they can’t always explain, and I could feel the threads being pulled, ever so slowly, until one night there was another dream, and I knew. He knows that we love him. He knows we worry about him. I believe he doesn’t contact us for many reasons, including that feels he failed. He let us down. He wasn’t strong enough. He knows I will help anyone who wants true, genuine help without enabling them to continue in a destructive path. Most important, he knows I love him and there is another chance. He knows what he needs to do, he only needs to reach out before it is too late. I won’t ask questions because there are none to be answered. I will just stand by his side. 

Monday, November 18, 2019

Organizing So Others Can Help

Recently my good friend Ellen Stumbo interviewed me about caring for a large family while also caring for myself during cancer. What are ways we can make it easier for someone else to step in and help us?

Let me tell you, giving up control was very difficult for me. I'm the type of person who cleans before the hired cleaning help comes. I know a lot of us moms (and some dads) are this way, so you'll understand when I say having someone else do the laundry was a major event for me. I mean, having someone come in and touch my laundry meant I would have to tell them what to do, or I would have to go back and re-sort everything, or re-fold things that weren't folded "my" way. That is a lot of control to just give up. But my friend who had been through cancer before me explained that the fatigue I would feel from chemo is not something anyone can describe, and that there would be no way I'd be able to keep up ALL the things I normally do. I NEEDED to give up control. Once I allowed myself to do that, I could move forward with setting up a laundry system that actually made having someone help be quite easy. I'm here to help you too!

1) I needed to think about the way I stored our clothes. I have changed this over the years, based on what sizes the kids are wearing, their genders, etc. For a time, my kids clothes were stored by size. Two of the boys wore size 7/8, two others wore 10/12, and the girls each wore totally different sizes. My current storage system is more traditional, and has everyone's clothes stored separately.

2) Laundry hampers: You need to find a way to store dirty laundry. These are the hampers we've been using the last two years. They have stood up to being crammed FULL, and dragged through the house by kids taking them to the laundry room. They are deep, and hold about a weeks worth of laundry. If you store laundry by size, everyone wearing that size uses the same dirty hamper. If you store laundry by person, only THAT person's laundry goes into THAT hamper. NOTHING else! I have the kids' names of who's laundry is in that hamper written in Sharpie nice and big so it's easy to see. This makes it nice and easy for anyone helping you. "Oh look, Asher has a very full laundry hamper. I will wash his laundry."



Make sure to get another hamper for dirty towels. 

3) Decide where you want your dirty laundry stored. For my kids, it works best to have their hampers right in their rooms. When clothes come off and they go IN the hamper. At night when I say goodnight to everyone, I reinforce this rule for those who need it. ;-)


4) Bins: Each hamper needs a corresponding bin. The clean laundry will go into these bins. Put the names of each person, or group, on the bin. (its difficult to see in this picture, but there are names on all those bins.)


5) Assign laundry days: For example, the laundry in my house is done like this:
Monday: Angela
Tuesday: Axel/ Abel
Thursday: Roman
Friday: Asher/Amos
Saturday: Audrey
Sunday: Mom/Dad

Got all that? Ready? Here we go!

1) Bring one full dirty laundry hamper to your laundry area. I have my kids carry their own down. Wash ONLY the clothes in that hamper. DO NOT mix anyone else's clothes in. If you have very small loads, add towels to fill them up.

2) When the clothes come out of the dryer, fold and put into the corresponding "Clean" bins. Here is my laundry area. (someday I will have a "beautiful" laundry room. Right now I have a "functional" laundry room. LOL )


3) If your kids are independent enough, when they come home from school have them get their clean bin and put their laundry away. If you have someone stepping in to help your family, they can easily see there is a full bin of clean laundry, and who it belongs to. They can either a) put it away where it belongs or b) easily find little Johnny a clean pair of pants because all his clean laundry has been put into the clean laundry bin and nobody else's stuff is mixed in!

You may find it helpful to have written instructions for your machines stuck right to them. Mine are printed, laminated, and velcroed with sticky-back velcro to the front of my machines where my kids who are able to do laundry can easily see them.

Thats it! That's the big secret system! Just simple, and easy for someone helping your family to step in and see what needs to be done.

Every family is a little different. Do you have a laundry system that works well for your family? Tell us about it!



Thursday, November 14, 2019

OOps! Training Tuli

Apparently there were privacy settings on my previous post, so I am re-posting!
Tulip, aka "Tuli" is a 16 week old Yorkie puppy. All our dogs are bell trained to go outside, but we decided to give Tuli a voice. It is difficult to hear, but the blue switch on the floor, when activated, says "Tuli wants to go outside". This is training session #3. Today is the day we taught her that stepping on the switch causes the door to open! By the end of the day she will be obsessively activating the switch. It is important that door opens EVERY time so she learns we really will open the door EVERY time she wants to go out. (and of course, all our dogs helped in the making of this video)

Monday, November 11, 2019

Training Tuli

In September we added a new family member. Tulip, aka "Tuli" is a Yorkshire Terrier. She is now four months old. 

We have bell trained all our dogs. In our busy household this works well for us. We can hear the bells in any part of the house. Now it’s time to teach 4 month old Tuli, but we have decided to give her a voice. Once she consistently activates the switch, then we’ll move it into position, THEN teach her that switch causes us to open the door. They whole process will take 3-4 sessions over 2-3 days. This was session two. Please excuse whining Paris in the background! She was waiting for her turn. LOL

Friday, November 08, 2019

Using Goally to Gain Independence

Hello everyone!

It is time to resurrect this blog. Lots of things are happening here in the Spring household, and I know  many of you have been wondering what's happening with us. I have several update posts coming in the next few days. Today's post is one I'm really excited about!

First of all, can you believe Angela is 23 now? I know, right? When I started this blog in June 2005, Angela was just 9 years old! Here she is, all grown up.


One thing at the top of Angela's "to do" list is move out. SHE really wants to live in her own apartment, with some supports. WE aren't so sure she's ready for it. One problem we have seen individuals run into is signing a one year lease on an apartment only to find they weren't *quite* ready, and needed to gain some skills before giving it another try. There is an agency in our area that does one week apartment trials. This is an assessment tool to help determine what skills the individual already has, skills he or she needs to work on, and other areas where they absolutely will need supervision. For example, we know that Angela will need supervision for cooking.

Last spring we were considering having Angela do a one-week trial, but we were very nervous about it. One problem she was continually having was getting ready for her day program on time. It was happening too often that she would "stall out" on one or two steps of her morning routine, causing her to miss her Metro Mobility ride. And when you miss your Metro ride too many times, you get suspended! Angela was needing constant prompts from me to "hurry up!" and "Angela your ride is COMING in TEN MINUTES and you still aren't dressed!!!!" The same problems were happening at night when she should have been getting ready for bed, but she just couldn't get herself to turn that dang TV off.  I often found myself saying, "You're an adult. How are you going to live in your own apartment if you can't even shut the TV off at a decent hour?" The same things I said to my other kids years ago. She would get mad. "I'm an adult! Stop telling me what to do!"

That is when Goally came into our lives!

We were at a family retreat when a friend mentioned this new device she had heard about. Goally was designed as an assistive device for Autism and ADHD.  It is a task-managing device. The caregiver enters routines, adding a time to each task within the routine. The user then carries the device with them, using the visual timer and auditory prompts to move through the routine. Angela's Goally has become her morning alarm clock, getting her up and moving through her morning routine with ZERO prompts from me! In the evenings she uses Goally after dinner, then has some down time until Goally tells her it's time to get ready for bed. Interestingly, when a device is telling her what to do, there are no issues. LOL Goally has allowed her to gain much more independence, and she is now ready to do that apartment trial in just a few weeks!

Here is a quick video about Goally, and how it works for Angela. This has allowed her to move from a place of needing constant reminders, to being 100% independent through her day (with the exception of cooking and laundry!)

Be sure to visit the Goally website to learn more! I'll be posting more videos about how we use Goally for other parts of our day.


Monday, March 25, 2019

FIVE YEARS NED!!!!

I wrote the post below five years ago!!! With breast cancer, I will never hear the words, "You are cancer free." That is because breast cancer only needs one teeny, tiny cell to find its way into another part of the body. Instead, we are told we are "NED", which means "No Evidence of Disease". Two weeks ago I had my five year check up and I am still NED!!! Five years is a big milestone in the world of breast cancer, and it is a milestone we celebrated. Here are the words I wrote all those years ago, when I told the world for the first time that I had cancer. It is a day that will be very close to me forever. It is the day my life changed forever. I will never move away from cancer. I will always have fear. But today...today I embrace five years!

...............................

March 24, 2014


Thursday

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.

"Leah?"

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 see...here 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? No...no...they 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.

CLICK

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."

CLICK

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

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

CLICK

"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."

CLICK

"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 run..run 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.

Saturday, December 15, 2018

Eight years: First meeting

Eight years ago today Axel met Dean for the very first time. He was 10 years old here, wearing size 4T clothes (to compare, Angela who looks very tall in the video, is only 4ft 8!) Our boy is a man now. 18 years old. I can't believe that tiny little voice is his.


Monday, December 10, 2018

Eight Years

Eight years ago yesterday, I sat in a small office in Kragujevac, Serbia, signing the papers that would make me mother to this amazing little boy! Axel was 10 years old, but looked like a 5 year old, and I was bringing him home. I couldn't even believe it! Now he is 18, and graduating from high school!!
Here is what I wrote that day:
-------------------------------------------

Djordje Spring

Adopted from Kragejevak, Serbia on December 9th, 2010

(the sign says something about the city of Kragujevak)

So, I suppose you want to know how to pronounce that name? Let me try to un-butcher it for you. The "j" makes a zh sound, like the s in "measure". The second "d" is silent...I think. His name sounds like 

D'zh-or-zhi

Except that he goes by a nickname "D'jolli"

That's "D'zholli (short "i" sound, not long!) 

In Serbia, the birth certificate is produced with the child's birth name on it, and his or her new last name. But don't worry, as soon as we get back to the U.S. we'll be ordering a new with his American name.

Axel is my grandfather's name, and Maurice is my father's middle name, but already answers to Axel. If I ask him his name, he does not yet know what I mean, and responds with a long-winded stream of gibberish.

Do you want to know how to pronounce the name of the town? It only took me a week to get it right, so let me try to help you out. Remember to roll your r's. ;-)

Krag uh ya vech.

Now say it REALLY fast, roll the "r" and you might be close!

Ok, enough of the language lesson already, on to pictures!

Weds night Axel and I packed up all our belongings. At first he was quite confused, looking at me like, "What? We're not living in this 10x10 room forever?"

Thursday morning we got up nice and early,( Axel is a pokey eater so we had to allow enough time for him to eat breakfast) and got all squeaky clean and dressed! Here he is in his adoption day clothes. He looked so handsome and grow up!
Then we drove just a few blocks to the social center. First they had to verify that everything on the adoption decree was correct, and had me sign it. 

"I certify that from this day forward I am the mother of this child." No turning back now! LOL (Shelley, do you see the paper NEXT to the one I'm signing? That's Grifyns adoption decree! They were comparing the two documents to make sure they were using the same wording. I glanced over and realized I was seeing "Bedford" all over it! LOL

I thought, "Umm...THIS is the "ceremony"? The woman in charge must have seen the look on my face, because she said, "Don't worry. This is just the legal part, we'll have the ceremony in a little bit."

The documents done we all filed into this huge room. Interestingly, there were A LOT more people at this ceremony than I'd seen this far. There were 12-15 people in the room. Maybe more, I lost count as they kept filing in. This is only their second international adoption from this city, and everyone was very excited to be part of it. 

In Serbia, everyone wears many hats. The woman who did the legal documents is also the head psychologist for the social center, and apparently also wears a couple other hats. She switches from one to the other quite easily. Now it was her job to conduct the ceremony.

We were all sitting a conference room at this huge U shaped table. Axel sat on my lap, happily coloring away, oblivious as to how his life was about to change, and that his new mama was going to be a in puddle of tears any minute!

The boss lady said (paraphrasing of course) "We want you to know how happy we are for Djordje. To know that he is going to have a new life, with freedoms and opportunities that he could never have here."

.......picture sobbing mom here, along with tears from everyone in the room......

"As you know, you are the first single parent we have allowed to adopt, and that we gave your family much consideration. We have seen the wonderful things you have done with your daughter, and the opportunities available to her. We have seen how well the contacts with Djordje, you and the foster family have gone. We have seen how much he has blossomed while in your care just these few short days."

......more crying here....

"We are satisfied that that you are more than capable of caring for all his needs, and that he will have a wonderful life with you. We look forward to hearing all the things he is now able to experience in his new life. We now formally pronounce you as his mother, just as if you were his natural mother by birth."

Yep, I was pretty much overwhelmed with emotions at this point, and so were all the people in the room. At some point she said, "I'm glad you're crying! I get worried if the parents don't cry." LOL
There was much chatter before and after the ceremony. At one point one of the women on the other side of the room pointed to me, and indicated my glasses. Everyone nodded in agreement with whatever it was she said. Finally it was translated:

"The two of you have the same eyes. Everyone agrees, and it is amazing!"

The ceremony done, we had to walk a few blocks to the police station and get his new birth certificate, and order his passport. (There is another story here for this that I will save for another day.) 

This is Axel walking with one of the social workers who was most involved with the foster family. He is a very nice name, and is adopted himself. He was SO happy to see Axel finding a forever family.

Here is Axel's certificate of citizen ship listing his new name. What, you can't read it? Bummer for you!

Axel just chill'in while they redo the birth certificate for about the 4th time.

We had to wait awhile to make sure there were no additional problems with these documents and the butchering of my name in Cyrillic (that's the untold story from above). While we were waiting back at the office, the head psychologist sat next to me with Axel's entire file in her lap. Suddenly she says, "Axel looks just like his birth father, would you like to see a picture of his birth parents?"

Who would say no to that?

She flipped through the file and pulled out a photocopied page that had both of his parents' Serbian identity cards on it. (like a driver's license) There they were, his parents! I asked if I could take a picture of it so I could show Dean later. She said, "Oh, I'll give you a copy of it."

She proceeded to hand me a copy of his parents' identity cards, with their full names and DOB and everything. I was told during our meeting with the ministry officials last week that they, particularly the birth father, are interested in having contact. They would like to know what kind of life Axel has in the states, and would love to watch him grow up. Needless to say, I was THRILLED to have this information. In Serbia, there is no such thing as 'open adoption', and it is frowned upon. They don't realize that in the US, open adoption is normal, and that adoptive families often have some level of contact with the birth family. 

When this was all done, we went to lunch at a local restaurant called "The Hunter". I had eaten there earlier in the week, and the food is very good. But, while we were eating outside in the BEAUTIFUL weather, as predicted earlier in the day it suddenly turned. The winds came, dropping the temperature about 15 degrees while we sat there. We quickly loaded into the car for the 2 hr drive back to Belgrade.

Tonight while going through pictures, Axel did a "first". When he saw a picture of himself, he pointed to his chest, then signed, "Axel"!! What a perfect day for him to truly understand his name for the first time! 

We are now happily settled into my friend Mary's lovely flat! Today I'll go to the US Embassy to pick up some forms, and get some groceries. The weekend will be pretty much open. Then Monday will be a flurry of activity as we get Axel's medical visit done (a requirement for the visa) have his visa appointment, and wait for his visa to be done.

We will be flying home Tuesday afternoon!!!!



USA, here comes AXEL!!!