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

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

Wednesday, 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!!!

Thursday, December 06, 2018

Making things work

Angela is an extremely social young lady. She is also quite adventurous! When she first started at her work program, which takes place in a city skyway system, she got lost on the very first day! And by "lost", I mean she was six blocks away from where she should be, and had no idea where she was. This happened because, although it was her first day, she thought she knew her way around so she just kept walking...and walking...in the wrong direction.

Once Angela realized she was not in the right place, and she didn't recognize any landmarks, she kept walking until she found a security officer. Then she called me,  "Mom, I'm lost. Here. Talk to the security guy." and handed over her phone. Her job coach reconnected with her very quickly, and all was well.

Angela learned a couple of lessons in the process:

1) ANSWER your phone when you hear it ringing. Both her job coach and I were calling here and she wasn't answering. We don't know if she was refusing, or if she couldn't hear her phone.

2) If you don't know where you're going, don't walk in the front of a group. Walk in the middle or the back so someone who DOES know where they're going can show you the way. If you walk in front, and they turn a corner without you realizing, you will get lost.

3) If you can't find a security person, you can FaceTime Mom or the job coach so they can see your surroundings, and they can find you.

4) Once in awhile remind Mom to verify "find my phone" is turned on. ;-)

I probably don't need to tell you how panicked I was during this event. Or that the job coach, who wasn't yet familiar with Angela and her over confidence, was just as worried as I was. After that event, we started having Angela wear an AngelSense GPS tracking device. It has a lot of features that were really great, and we used it for over a year. However we recently decided to try a different GPS device. We still use the Angelsense for a couple of our other kids when we attend crowded community events.

After doing some research, we switched Angela to a Gizmo Watch. The device itself works great for Angela. Unfortunately we encountered a couple problem that are unique to Angela. First, Angela can't get it on herself, because it has a buckle. That second problem is that after a couple months of use we have discovered Angela is allergic to the silicone watchband. Hmmm we really like the device so how could I modify it to make it work for her?

To google I go! I found a few tutorials on how to make watch bands, and tonight I made one that is made with fleece. Not only will it be better against her skin, but it is stretch so she can get it on herself.

I used to do a lot of sewing, but haven't been able to in years. I barely remember how to thread my machine! I think this turned out ok. We'll see how it works for her then I'll make more. Hopefully this stays together and we don't lose the watch! LOL

Although I was planning on Christmas themed fabric
Angela chose this Star Wars fleece. 



I'd like to learn how to make velcro watch bands, however I would need to be very careful that the scratchy velcro can't touch Angela's skin at all! Her skin is incredibly sensitive and it would cause a breakdown within a day. I think these stretchy type bands are going to be the best option for her.

For those with loved ones who wear a GPS like this, do you have any other suggestions? 

7 years! Asher

Happy Adoption Day (yesterday), Asher!!!! This post is copied from our adoption blog. Asher's birth parents are reading this post. We have been in contact with them for several years, and they are good people. They made a very difficult decision based on the social climate for people with disabilities where they live. Please be respectful.
........

December 5th, 2011

Ivanna (pronounced Eevanah) the orphanage social worker. Asher is blurry because he wasn't really interested in posing. 


Ok, he'll hold still for this one. Ivanna was trying hard not to cry at this point. Just off camera are caregivers in tears. After this, Ivanna handed me a bag. There is one caregiver who has cared for Asher since the day he was born, and often takes him to the grocery store and other places with her. She said the bag was something for Asher from his caregiver, who did NOT come to work today because she could not stand to see Asher leave. Later when I opened the bag, I found a size 8 brand new outfit. Size 8...something he will wear next year. And brand new outfit; something I know was not easy for her to do.

Seven years ago, his guardian walked through these doors with a tiny baby. One of the least of these. I know a lot about his birth parents, and I know they were doing the only thing they could. The story is for Asher, and not one I'll share here, but I can tell you Asher WAS loved, and in fact his birth family was just here to visit him knowing that he would be leaving. I cannot imagine how difficult that was for them.

Driving to Kragujevac. Americans get a little freaked out about the lack of carseats here. Even when a family does have a carseat, it isn't used anywhere near the way it's supposed to be. LOL Here's Asher, sitting on my lap facing me to watch out the window.

Signing the adoption decree!!!

The actual ceremony. I'm going to tell you what was said, not to pat ourselves on the back, but so you can see how these adoptions touch everyone. (and I look horrible in the pictures because I'm crying!)

This was toward the end of the ceremony, when we all stood up for the formal part. Susanna the psychologist was talking, saying just three months ago they received Axel's update and were so thrilled to see how wonderful he's doing and the opportunities he has. To see that he has the medical care nobody even knew he needed (I included pictures of Axel in the halo and explained what had happened.) Then when they received our request for Asher they were so excited to know the family he would be going to, and to be able to tell the birth family just what kind of life Asher would have. They thanked me for coming back to Kragujevac to give a family to one of their children.
 Then she said something funny: In our paperwork for Axel and again for Asher I explained how many times adoption has touched my immediate family, and that my sister had 9 children, four of them adopted. They wondered how much more space WE have in OUR house, and if they will get to see us again next year. LOL

The head minister did not participate in our ceremony with Axel because he was out of town, but he lead this ceremony and was very glad to be part of it.

This is Susanna, talking about how our family has taught them all a lot about love and acceptance, and that by seeing the updates on Axel they have a new understanding of the importance of family for these children, and the progress that can be made when a child is raised in a loving environment. They hope all their children can be so lucky to find their way to a family like ours.


Certificate of Serbian citizenship, and his new birth certificate listing him as Lazar SPRING, with me as his mother!

"Uncle Zoran". Zoran is a COCI staff member who is nothing less than a Godsend to adoptive parents! He is translator, driver, and playmate for the children when you need your hands free. You will get more Serbian history from Zoran than you will anywhere else.
 After a VERY long day we drove home in Zoran's car...in a CAR SEAT! (with a lap belt. LOL) But Asher was comfortable and fell asleep holding my iPhone to his ear.

Monday, December 03, 2018

Today you are 30


The second day of December, 1988.

 I had a 14 month old toddler, Noah, and was massively pregnant with my second baby. I knew he was a boy, and this day was his due date. There was SO much to do! Christmas would soon be here, I just knew if we didn't get the Christmas tree up, it likely wouldn't happen once this new baby came. After dinner my (then) husband and I took little Noah to the local tree lot, where we found a cute little tree for our tiny living room, that we could also afford. Times were lean for this young family!

We brought the tree home and stood it in the living room to "rest", and let the branches drop.   I put Noah to bed, then stood looking at the tree. My husband was supposed to get the Christmas boxes out of the attic, but his day had started at 4:00 am and he now sat on the couch, sound asleep. I took a deep breath and hauled my giant belly up the stairs and opened the door to the attic crawl space, got on my hands and knees, peering inside. It was going to be tough for me to get all these dang boxes out, but I was (and still am) a very determined woman. One by one I pulled out a box, carried it downstairs to the living room, then hauled myself back up the stairs for another. I got the tree into the stand, crawling underneath to secure all the screws into the trunk, trying to work around my belly. I found a couple strands of lights that still worked and wrapped them around the tree. We didn't have a lot of ornaments yet, and it was only Noah's second Christmas so I made sure his two ornaments, and a new one for the baby, were prominently hung on the front of the tree. I couldn't wait to see Noah's face in the morning when he saw the tree!

I quickly put up the other household decorations. When I was done I looked at the now empty boxes, knowing they needed to get back up the stairs. Afraid to sit down for fear I wouldn't be able to get back off the couch, I picked up a box and started to climb the stairs once again.

Finally, after what seemed like many hours, I sat down on the couch next to my sleeping husband to admire the tree. I realized my back was hurting just a little bit, and figured it was due to all the boxes I had just carried. I woke my husband and prodded him to bed so he would get a decent night sleep. I looked at the clock...midnight...No wonder I was exhausted!!

At 5:30 a.m. I was woken by a massive contraction. I reached over to my husband's side of the bed and realized he was already gone for work. I got up to use the bathroom and had another contraction, stronger than the first. I peeked at Noah. I found he was still sleeping, so I laid down on the couch to rest but instead had another strong contraction. They were already two minutes apart! With my first baby, my water had broken with a gush sitting at the table of an extended family member. I went  to the phone and called my husband's work. "Please tell K. to come home. NOW! We need to go NOW!" Thankfully his place of work was very close to our house, so he arrived in minutes. By the time he got there I had Noah up, diapered, and stuffed in his snowsuit to go to grandma's house. While K. was loading Noah I called my mom to tell her the baby was on the way, all the while making frequent stops for contractions I couldn't talk through. While talking to my mom I looked out the window to see if K. was having any trouble getting Noah into the car (you know how men and infant car seats can be!) and the car was GONE! "Ummm mom? He left without me."

Yes, he had left to bring Noah to his parent's house while I sat and waited for him. They were also closely thankfully! When he returned he was moving at lightning speed through the house while I was moving in slow motion, just trying to get my shoes on.

When we finally arrived at the hospital my contractions were very close together, and as soon as I was in a bed my water broke.

On December 3rd, 1988 at 7:42 a.m. Tyler was placed into my arms for the very first time.

Tyler, today you are

!!!!30!!!!

You came into this world like a little tornado, and it's pretty much how you've lived your life. An adrenaline junkie through and through! You made me a mom for the second time. You made Noah a brother. You added to the long line of grandkids and great grandkids! I pray that 2019 is kind to you. That you are blessed beyond measure and life treats you kind!

Grade 3
I love you!
Mom
Preschool, age 3


Grade 5
Bryon 7, Noah 9, Robbie 10, Tyler 8, Angela 6 mo
Grade 4


Grade 6





Sunday, December 02, 2018

She told me it was urgent!


What malnourishment looks like: Recovery

I was looking through old videos today, and found this one of Asher. I had forgotten what terrible condition he was in when he came home! Just a couple weeks short of one year home. His belly is still giant and bloated. Because his hands and feet continued to grow but his body had slowed, they look too big for his body. When he came home he was seven years old and 36 lbs. By the time this video was taken, 11 months later, he had gained 8 lbs and 2 1/2 inches in height. It takes a long time for a small boy to recover from malnutrition. It would be another 6+ months before Asher was no longer looking like a toddler.

But OH! This boy was SO HAPPY to be here!!! Look at the PURE JOY on his face as he discovers something as simple as making noise, and just being A BOY!

Saturday, December 01, 2018

How did we get here: Asher's adoption process

Here is a link to my old adoption blog, and all the posts related to Asher's adoption process. I can't believe we are coming up on seven years home! This marks the day Asher has officially been our son longer than he was an orphan. He is the first of our kids to reach this milestone! If you'd like to read about Asher's adoption process, CLICK HERE, and scroll back to November 2nd, 2011. 

Friday, November 30, 2018

How did they get here? Axel's adoption

If you are new here, and you would like some reading material, here is a link to all the old blog posts related to Axel's adoption process. His was our first adoption, and quite a learning experience! I can't believe he's coming up on eight years home. The time has flown by! At the time I had four adult kids: Rob, Noah, Tyler and Bryon, and Dean had one adult son, Aaron. Angela was the only one left at home and she was 15. She did NOT like being an only child and she was SO excited to have a new brother join her! They have been best buds ever since! We're very lucky, because it doesn't always work out that way.

Anyway, if you would like to read about Axel's adoption process CLICK HERE to his posts, and go back to November 23, 2010



Let's go back in time

December is anniversary month for two of our kids: Axel came home December 2010, and Asher came home December 2011. Next came Abel in April 2013, and Audrey in 2014. Then we took a break for a few months to deal with the ugly monster called Cancer. Amos joined us March 2015, and Roman in January 2017. It has been a very busy eight years!!!!!

Tomorrow (December 1st) is when I met Axel for the SECOND time. I had met him months before, but under different circumstances, and at the time I had no intention of adopting. Once the adoption process was started, Axel is who we chose and the preparations began in August 2010. Here is a blog post I wrote as I prepared to travel to Kragujevac, Serbia to bring him home.
...............................

November 23rd, 2010

The last few weeks have been busy. All the paperwork and running around that is done to bring a child home is exhausting and frustrating. Sometimes it seems as if there is no way you will ever make it to the end. In reality you know there are thousands of families who have gone before you, and they have made it to the end, so you just keep plugging along, getting it done as fast as you can. The faster it's done, the faster your child comes home.

But towards the end of the process, just when you think you are spent, you start to get a little taste of the fun. As the fact that you're adopting becomes more real, and you can almost see the light at the end of the tunnel, you allow yourself small pleasures. Those small pleasures are all about gathering the actual items that you know in just a few weeks your child's hands will be touching.

Painting your child's room is one of those things that will keep you going.

Everyone in the family gets excited and wants to help. They gather where they can keep an eye on the action.

Picking out the paint color and bedding is another step. As you put each sheet on the bed, and lay out the blanket, you picture your new child there, sleeping securely in the room closest to yours. You wonder if he will want you to lay with him those first few nights as he learns the noises of his new home.

Some things you decide to leave until your child is home, knowing it will be one of the first times he'll be allowed to express his opinion, and that his opinion has value. 

And of course, buying the clothes he will wear is one very important step; clothes that are like wrapping him with a hug. You touch each item and find yourself praying over each them, that they'll find him healthy and happy each time he puts it on. You pray over his shoes that will walk the streets of his birth country for the very last time. You pray over the winter coat that will protect him from the bitter cold, and hope that you can protect him from some of life's bitterness.
Finally, the day arrives when it is time to pack up the items you've gathered, and try to pack your fears away as well, shifting your focus to the days ahead. In a matter of days, you will travel to the other side of the world for him, to touch him, to hold him again, to see his smile and hear his laughter.
You try to sleep those last few nights. Knowing when you leave your bed on the day of your departure, your life will be forever changed. You stop in his room one last time and say a prayer for the days ahead.


Thursday, November 29, 2018

Welcome New Readers!

Wow!!! If you are new here today, you probably found us via the video done by Chris Ulmer from Special Books By Special Kids. Thank you so much for coming to read about us! I guess it's time for me to get this blog moving again. You'll see that I've said that many times over the last couple of years. Needless to say, we are a very busy family and it is difficult for me to find time to write. But, I will try my best! For those long-time readers who are looking for an update on the kids, here you go!!!!! Also, don't forget there will be a documentary set to release in June 2019!

Tuesday, October 16, 2018

Down Syndrome Awareness Month: Update on the adult child

It is a sad fact that I can't follow through with anything. It is amazing to me (and to Dean!) that we
have completed any adoptions because they each require a ton of paperwork and a process that must be followed in a timely manner. I guess, for a time, God had me focused more than I'm able to right now. I still intend to do the breast cancer photos, and have actually spoken with a photographer about doing a specific photo shoot. Now to carve out some time!

In the meantime, it is also Down syndrome awareness month. We have had SO much going on here lately, I thought I'd give you a little update on Angela and all that she's been up to.

A year ago Angela entered a career exploration program with a local agency called Lifeworks. They had a pilot program going called "Small Group" at different locations throughout the metro area. Angela was in a group that was based out of the St. Paul skyway system. The very first day was difficult, though probably more for me and her staff than for her. It started with Metro Mobility dropping her off way too early, so there was no staff to meet her. But when she entered at a building she saw a huge escalator that she remembered from the one visit we made months before. She went up the escalator and found the coffee shop where we had met during that visit. She remembered I told her the job coach's number was in her phone, so Angela called her. All was good, and the job coach met her right away. The next day Angela got very lost, as in 6 blocks away (but still within the skyway system.) She found herself in the Federal Courthouse, found a security guard and told him she was lost. She was quickly reunited with her group. Of course, it was the first time they had lost anyone. Leave it to my kid. UGH!  Within a couple months of starting the program Angela was navigating her way around the whole skyway system independently, and was now acting as the leader when new coworkers started the program. This is something that is difficult for most adults! She was even able to exit the skyway, then take a city bus to a specific location, and sometimes took a couple co-workers with her. She did this successfully, and without knowing she was being shadowed by an employee who was not known to her. ;-)

In July it was time for Angela to find a job but we needed to get her through a major surgery first so opted to wait until the end of September to start interviewing.  She went on a couple of interviews but I didn't really think they were jobs that would actually pan out for her. Then her job coach took her to an interview at McDonalds. I was a little disappointed because I didn't want Angela working in the fast food industry. She is a bit food obsessed and I could just imagine her packing on the pounds! The interview went very well, and the store manager really liked Angela and her enthusiasm! She offered Angela 25 hours a week to start. I was very surprised. A lot of adults in our Down syndrome community are only given a couple of hours every day, some only a couple of hours per week. For many that is all they're able to work and stay on task. I wondered if this was really a good match for Angela, and maybe the bar was set a bit too high? I convinced everyone that 20 hrs a week to start would be better. She is paid minimum wage of $10.25/hr, and after 6 weeks will get a raise, then again at 6 months. This is pretty good for her first job, and on par with what others are getting paid for their first job.

Angela started her job with a job coach going along for the entire shift. The job coach showed Angela each task on her list. After the first day it was evident Angela could handle additional responsibilities, so they added to her list. They only needed to show her a new task once, sometimes twice, and Angela was able to complete them without assistance or reminders. Everyone has been saying how fantastic she's doing and all I can think is, "This is the same person who won't put her laundry away without lots of nagging from me!" At the end of every shift Angela is given $7 in McDonalds credit to buy a meal. The first day she came home with a lot of food. She and I came to an agreement that on Monday I will text her what she can order for the week, so now she's getting lower calorie items. She seems happy with this agreement, and it fits well with her desire to know everything ahead of time, at all times. HA!

Friday last week was the first day she was on her own, without a job coach. Dean and I couldn't resist, so we had lunch at McDonalds.  Angela was working in back when we arrived, but while we were eating she came out front.  That stinker completely ignored! She acted like she didn't see us! When she went in back we heard her announce, "My mom and dad are here!" When she came back out front, she continued to ignore us. LOL The good thing is she stayed on task, doing her job. She collects the trays, washes them, and gets them ready to be used again by putting the paper placemat thingy on, then stacking them behind the counter. She cleans all the tables and the condiment area, makes sure the beverage area is stocked with cups, lids and straws, and that all flat surfaces are cleaned off, straightens all the chairs and tables, empties the trash bins and places new bags, carrying the full bags out to the dumpster. Whenever someone comes in the door Angela greets them like royalty, with a sweep of her arm and, "Welcome to McDonalds Sir/Madam!" She says hello to the little kids, stooping to their level,  and elderly customers as well. Yesterday when I picked her up I asked the manager how things are going. She replied, "Oh my gosh! She makes our customers so happy! She even got a tip today! Everyone adores her." (Who gets a tip at McDonalds???)  The manager told Angela, "When you're done there you can go ahead and clock out." but Angela kept working another 30 minutes because she was enjoying her job.

I cannot begin to tell you how proud I am of Angela. The past year she has matured SO much, it is hard to believe she is the same person. Now she can work on that apartment she's been wanting. She's been on a waiting list for a roommate, and we hope it happens soon so she can fledge from the nest, just like all her older siblings did!





Monday, October 01, 2018

Breast Cancer Awareness 2018

It's been four and a half years since I was diagnosed with breast cancer. It seems like forever ago, and yet it seems like yesterday, all at the same time. Life is good!!! I am approaching the 5 year mark - a very important milestone in the life of a breast cancer patient! At 5 years, I can get life insurance!!! Well, that and statistically one's risk of recurrence decreases significantly.

So far I am still NED = No Evidence of Disease. You see, with breast cancer, there is no such thing as "cancer free", because it takes only ONCE undetectable cell to cross the lymph system, to spread through your body. Instead we are labeled "NED", because there is no detectable cancer found. Last spring I was all freaked out and convinced I had developed lymphoma as a result of chemo. My Oncologist ordered a PET scan, and all was well. That scan made me feel SO much better, knowing there was nothing hiding anywhere. At least nothing any scan could pick up.

So here I am.

I want to go back a bit, and share some things about cancer that I never did before. I don't know if the average person understands how devastating breast cancer can be. This year, after much thought and prayer, I have finally decided to share pictures. Not just pictures of my smiling self, but pictures of the effects of surgery. Yes, I'm going to show you pictures of my breasts, both my old and my new. I don't even remember my old breasts anymore. I don't remember how they felt in my hands or on my body. My new ones don't feel like real breasts. I can feel the implants inside them, and they cause me a few (minor) problems here and there, which I like to make jokes about.

If you are here for the first time, THIS LINK will take you to the post I wrote about the day I was diagnosed. So far in my 51 years, that was the darkest day of my life.

Thursday, June 21, 2018

Moving On

Sometimes I don't have time to write.

Who am I kidding? I am really busy, and rarely have time to write anymore. Sometimes it's just easier, and faster, to talk. We've been getting ready for some big changes here in the Garden of Eagan.   Today I'm talking about some of them.

Monday, May 28, 2018

Prom 2018

I can’t believe that little boy we brought home just a few years ago is now old enough to attend his high school Prom! He went with is good friend Corinne. They had a great time, even in the sweltering heat!