Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

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

Friday, November 30, 2012

Harland: Day 3

Apparently Harland is a wee bit warm here in Minnesota and having trouble adjusting to our unseasonably nice weather. This morning he was found hanging out in the freezer drawer with the freeze pops.


And here's the part the kids don't know about: Late last night Dean and I were hearing a lot of rustling around. I thought it was the dogs but every time I looked they were sleeping somewhere, innocent as can be. My friend Nell has some weird stuff going on in her house right that we've been discussing, and we also have a resident ghost, so I decided to set up my night vision baby monitor. 

Look who I caught coming out of the bathroom with the Victoria's Secret catalog!


Thursday, November 29, 2012

Harland: Day 2

Disclaimer: Please read through this post before allowing children to see it. They may ask you questions you don't want to answer. Our elf is far more naughty than nice!
*****************

I was woken up in the wee hours of the morning by a Facebook message notification on my phone. I could have let it go. I should have let it go. UGH! I couldn't stand not knowing who's trying to get in touch with me and I knew I'd lay there awake for hours if I didn't check.

I went in search of my phone and found THIS!!!! Harland Facebooking Santa! Here we were told he flies back to the North Pole every night to report to Santa when in reality he jumps on the family computer.


 I confiscated my computer and phone and went back to bed. Apparently Harland was feeling a bit vindictive. This is where the kids found him this morning.


Here's a close up in case you can't read it. At least he was prepared to clean up his mess.

My morning was really busy and I didn't have a chance to check my email or anything else on my computer until now. That's when I discovered Harland had never logged out of Facebook, AND he left his conversation with Santa open! Looks like we might have a seriously delinquent elf on our hands. I was a lot slightly mortified by their conversation!

(you may have to click the picture to make it big enough to read.) 





Sometimes in winter

In the springtime, when the hummingbirds return to Minnesota, I spend hours watching them visit our feeders. Once I've identified them and the direction different pairs fly off to, I then start to hang out on the back side of the house, trying to discover their favorite landing places in hopes of finding their nests.

This year I didn't have as much time for bird watching so I wasn't successful in my quest for a nest. I knew one of the pairs was somewhere just above the house, but with the sun always glaring in my eyes I could never find them hidden among the leaves.

Until today. Sometimes in winter I can find them.  When all the leaves are gone and the hummingbirds have long since headed to the warmer temperatures of Central America, their nests jump right out at me, high above the house, like a golfball silhouetted against the late afternoon sky.


It makes me eager for spring, when the birds will return once again to provide me with entertainment as I watch them, and later their babies, buzz around the feeders, battling one another for the longest sip.

Hurry back hummingbirds!

Wednesday, November 28, 2012

Two years ago

Two years ago I boarded a plane for Serbia. (there were a lot of trips to Serbia over the last couple of years, and two of them happened in Nov/Dec. LOL) I was on my way to meet Djorjde for the 2nd time!

The first time we met, April 2010

Harland: Day 1

Our elf's name is Harland. He showed up in the wee hours this morning and wasted no time helping himself.

I told the kids that no, they could not have cookies for breakfast like Harland. At least  he used a napkin!


And THEN, the kids left for school and I headed to the shower. Yeah, I learned this elf CANNOT be left alone! I just knew it. I KNEW we would get a naughty elf! (pretty sure  he's licking the bottom of that Malibu cap. The lush!)



Tuesday, November 27, 2012

Look Who's Coming to Visit!

It should prove to be an interesting month!

I wonder what the kids will name our Elf on a Shelf?

I also wonder if we have a naughty or nice elf?

URGENT call to action!

Copied from David and Carolyn's blog:


URGENT

Parents of children with disabilities and those who care about parental rights please read and take action.
November 27, 2012
Senate Vote This Week - Please Call Immediately!
Yesterday afternoon, Senate Majority Leader Harry Reid (NV) announced that the Senate will vote to ratify the UN Convention on the Rights of Persons with Disabilities (CRPD) this week. We need you to call your two senators immediately, and urge them to oppose the CRPD.

U.S ratification of the CRPD would subject our domestic law to United Nations standards and oversight, threatening parental rights and American self-government.

Thirty-six Senators have signed a letter stating that they “respectfully request that no treaties be brought to the Senate floor for advice and consent during the lame-duck session of the 112th Congress.” These Senators have promised in the letter that they “will oppose efforts to consider a treaty during this time.” Senator Reid has purposefully ignored this letter by promising to file cloture (so thefilibustercannot be used) and will make every attempt to proceed to the CRPD for ratification this week.

We are behind in this battle. Thirty-six is not enough to stop a cloture vote – that takes forty – and these thirty-six have not pledged to vote “No” on the treaty. They have only pledged to oppose its coming to the floor. If CRPD comes to the floor anyway, we have no guarantee that we have the votes to stop it.

We need you to call both of your U.S. Senators right now and ask them to oppose the CRPD. You can click on your state on our States page to find your Senators’ contact information, or use the Capitol Switchboard at 202-224-3121. (I apologize for the incorrect area code in yesterday’s email. This is the corrected number.)

Please give them some or all of this message:

“I urge you to oppose the UN Convention on the Rights of Persons with Disabilities. This treaty surrenders U.S. sovereignty to unelected UN bureaucrats and will threaten parental care of children with disabilities. Our nation already has laws to protect disabled Americans. This treaty is unnecessary and will hurt families. If the Senate ratifies this treaty, it would be the first time ever that the U.S. has ratified a treaty that obligates us to recognize economic, social, and cultural entitlements as rights under domestic law. The Senate should be more focused on avoiding the fiscal cliff than on ramming through a dangerous treaty that has not yet received the full study and legal review that it requires.”
Then, please forward this email to your friends and family and urge them to call, as well. Please also post this information on social media (Facebook, Twitter, Pinterest, etc.) to help get the word out to every parent and freedom loving person in America.

For more information on the dangers of this treaty please visit our CRPD page.

Thank you for standing with us for freedom.

Sincerely,

Michael Ramey
Director of Communications & Research

P.S. – Our petition to oppose this ratification contained 10,195 names as of this morning. That’s more than 10,000 persons with disabilities or family members of persons with disabilities who oppose this treaty that is being rammed through in their name. We will deliver this information to the Senate this afternoon and hope they listen. Your immediate calls will help them hear us.
Parental Rights Amend. House Cosponsors
86
Includes HJRes110 lead sponsor, Rep. Trent Franks.
Latest added Oct. 25, 2012.
Parental Rights Amendment Senate Cosponsors
13
Includes SJRes42 lead sponsor, Sen. Jim DeMint.
Latest addition July 23, 2012.
Senators Opposing Treaty Ratification Vote
36
Senators who indicate they will oppose cloture.
Latest addition Sept. 21, 2012.

Monday, November 26, 2012

Remembering one little girl

Do you remember this darling little face?

photo credit: Google Images


Little Caylee Anthony disappeared in July 2008, her body found in December 2008 in a trash bag in a wooded area not far from her home. Her mother, Casey Anthony was later tried in her death. She was found not guilty.
Today Channel 13 news in Florida reports the Orange County Sheriff's Department confirmed there were google searches on one of the Anthony computers for "foolproof suffocation",  and that the jury was never made aware of this evidence. According to the article, the prosecution team didn't think the information as relevant at the time. 

Ok, I am not an attorney. I am not an investigative reporter. I am just a mom, at home. I guess I have interrogated enough teenagers in my time as a mom to know that if I found information like that I'd be digging further! You bet I'd be getting to the bottom of why in the world someone would want to search a term like that and a very short time later a child goes missing, and is later found dead.

 Four years down the road and there are still unanswered questions about the disappearance and death of little Caylee Anthony. I wonder how many other questions have been raised by the book that was released in July? "Presumed Guilty - Casey Anthony the Inside Story" is written by the Anthony attorney, giving details about the investigation and trial. What about you? Were you satisfied with how the trial was handled?


Sunday, November 25, 2012

Thanksgiving recap

This is one of the best Thanksgiving weekends I can remember in a really long time! Dean was home for four days, and I absolutely love when he's home so many days in a row with us! I know the kids enjoy it too!

Thursday we celebrated Thanksgiving with Dean's side of the family. Lots of amazing food cooked up by my BIL Kelly. And pie...lots of pie! Every one missed Angela since she was at her dad's.

Friday Dean decided to tackle the last of the painting that was still left from last spring's remodeling project. We had two walls that we just couldn't decide what to do with so Dean made an executive decision. Of course, it looks lovely!

Saturday I drove the hour up to the other side of the cities to pick up Tyler and when I came home Dean had all the painting stuff cleaned up and had made the hor dourves my sister had requested. We all snuck in a quick nap then headed out to my sister's house for my family thanksgiving. We had a lovely time!

Today Dean and Tyler got the last of the Christmas lights up. Oh, and for the last two years there is a mirror I've wanted for the front entry. Since that is one of the walls Dean painted this weekend, we went to ikea and got the mirror. Now we just need to get it up on the wall.

Sadly, all good things must come to an end. Tomorrow the kids will be back to school, Dean back to work, and I will be picking up the house since it looks like a bomb went off in here! This will I'll be trying to get the Christmas stuff out, a couple kid doctor appointments taken care of, therapy for the boys, and..hmmm...I bet I will think of a few other things to fill the little bit of time left!

I hope all of you had a beautiful Thanksgiving as well. Our nice weather held out until Thanksgiving Day and now winter has arrived! We have snowing and blowing and...well it's just darned cold! Thankfully there are only three months of this junk and then it will be Spring!

Saturday, November 24, 2012

School Bans

It seems we, as well as our kids, are slowly loosing freedoms. Schools across the country and around the world are placing bans on all sorts of normal kid activities. Here's a look at things that have been banned over the past several years.

In 2007, the principal of Oakdale School in Connecticut banned lots of things. No kickball, soccer, dodgeball, or other "body banging" activities. Instead kids are encouraged to jump rope or play with hula hoops. Eventually the principal gave in, a little, and started allowing fourth and fifth graders to play a modified game of kickball - twice a week - if a parent or grandparent is present. Oh, and nobody can keep score.

In 2010, a school in Ottawa banned playing with balls at recess for the duration of winter. Their reasoning that the balls get snow and sometimes small pebbles stuck to them. Students can (and sometimes do) get  hurt. Hmmm haven't kids in Canada been playing with balls during winter months for..like EVER?

2012 In Sydney, Australia, Drummoyne public school has banned cartwheels and Somersaults during lunch or recess unless a "trained gymnastics teacher and proper equipment" are present.

Portland Maine Public Schools has banned all unhealthy foods, such as soda and potato chips, on school grounds. Clearly parents attending games with their families cannot make decisions on their own so the district has widened their school policy to include high school football games. Instead of the concession stand selling pop, buttered popcorn, etc. it will now well things like baked tortilla chips and hummus. OH YIPEE!

Taucoma WA public schools banned sunscreen, even on field day , even for a kid who has albinism, resulting in severe burns and a hospital visit for two.

The Minnetonka High school here in MN has made a plea to parents and students about leggings and yoga pants. I have to say though, I'm fully in support of this one! I don't think there is any reason to see every crease or crack a girl's body has! Last weekend we were in shopping mall and we counted MANY teens dressed this way. To be honest, I found it pretty disgusting. They may as well have been naked since there was NOTHING you couldn't see. If I want to educate my 12 year old son about girl's bodies, I don't plan on doing so at the local mall.

Have you heard of any crazy school bans recently? Which ones do you agree or disagree with?







Friday, November 23, 2012

The Visits

This is a continuation of my story about meeting Asher.

********************

Twice a day, two hours each visit, every day until he is legally mine. That is how the visits will go.

This is the exhausting part of the in-country process. Many refer to it as the "Groundhog Day" effect. Every day is like the one before it and the next will be the same as well until they begin to run together and you start to forget what day it is.

The visits themselves are monotonous. Trying to think of activities that will encourage bonding yet pass the time quickly, all while trapped in a small room. Luckily the Zvescanska orphanage has a playground with lots of toys!

It is late November in Belgrade. I've been lucky enough to hit mild weather. Although it's pretty damp and drizzly much of the time I try to get us outside every day.

On this first day I bring yogurt. I can see that Lazar is hungry and thin, and food is a great way to encourage bonding. Unfortunately I was met with some resistance from staff.

Rather than my re-writing history, I invite you to read my adoption blog posts from November and December of last year. Please do take the time to read. "Finding" Asher was really difficult but so incredibly rewarding! Those first flashes of eye contact, the first smile he blessed me with, all of it so very much worth the wait!


Just Because

Sometimes Asher cracks himself up. On this day he was sitting on the ottoman when he started swinging his arms around. Apparently it was pretty funny because he kept giggling, and I just love his giggle so much I had to share it with you.

Thursday, November 22, 2012

Halloween

"Leah, dear, it's Thanksgiving day! Why are you just now posting Halloween pics?"

I don't know! I got distracted, and busy, and...and...and I'm having trouble feeling very motivated to blog lately. Do you hear the crickets? It seems my readers are dropping like flies.

Anyway, on to Halloween.

This was Asher's very first Halloween, so I was determined to do all the Halloween things, even if there wasn't time for it all. I decorated the front step, but don't worry! Axel didn't stay out there the entire month.

On the big day, even though there was very little time, I made sure we carved pumpkins.

Axel remembered this activity from last year and was anxious to show Asher how to do it!

Angela is not really a fan of pumpkin carving, but she also isn't about to be left out of whatever fun thing the boys get to do. LOL

Asher thought this was pretty cool! 

Axel did an excellent job of cleaning out his pumpkin.

Asher pulled the guts out one string at a time. 

Dean got to do the actual carving, while Zurri kept a close eye on the pumpkins.

Oh, you can stir this stuff? YAY!

Asher really wanted to move over and see what Dad was doing but he wan't sure how to get there. Notice Zurri is headed to lick off a kid's face.

Hurry honey! The sun is going down and we need to get the kids' costumes on yet! 


Doesn't he have the cutest belly now?

Pumpkins are done! YAY! 

I have to tell you about these costumes. Axel and I were at Goodwill dropping off donations one day when I decided to take him into the store to see if there were any interesting toys for the boys. They had just put their costumes out and Axel picked the skeleton costume. 

Later that day Angela saw the costume and declared "I be a sketton too!" I reminded her that she's too afraid to even walk down the Halloween isle at the party store. Was she SURE she wanted to be a skeleton? Oh absolutely! 

Asher did fantastic with T-or-Ting! Axel would ring the bell, then when the people would come to the door he'd say trick or treat. About the 4th or 5th house Asher figured out the routine and was VERY excited people were putting SOMETHING in his bag! At that house Axel rang the bell, and as soon as the person came to the door Asher let out a glass-shattering screech! It was all he could do to contain himself. Then he did it again at the next house, and the next. This was his way of saying, "Trick or treat!"

Angela volunteered to stay back at the house and hand out candy, but we didn't have one single trick-or-treater. :-( Until we came home and the boys were excited to knock on the door. 


Halloween was fun. I didn't realize how much I missed it from when the big boys were little kids. We've always done Halloween with Angela but some years we haven't bothered with pumpkins, or decorating, or anything else really. This year was fun!

A boy named Lazar

One year ago today, I sat down at a table in Belgrade, Serbia. Around the table were staff from the Serbian MLSP as well as the social center in Kragujevac, Serbia. Though it was only 3:00 a.m. at home in Minnesota, I knew that Dean wasn't sleeping. How could he when I was on the other side of the world getting ready to meet our new son!

We were here to discuss the social and medical history of a 7 year old little boy named Lazar. Like Angela and Axel he has Down syndrome. I listened to all of the information,  trying to remember all of the details to tell Dean later, all while wanting to just say, "Lets go already! Lets go meet him!"

Eventually the meeting ended and it was time. Time to go meet my son! When comparing an adoption to pregnancy, these were the very last pushes before I would meet the baby.

We got in a car and made the short drive to the orphanage.

We pulled up to the guard shack. "Dobar dan" I said as I presented my passport. The same woman working who had been here a year before. "Hvala" I said as she waved me away.


We walked through the doors, up the steps and all 5 of us stepped into the death trap elevator meant for two. 

The orphanage social worker met us on the 2nd floor. She quickly introduced herself as we were shuffled a few feet down the narrow hall. And there, before us, was a group of tiny little children eating lunch at a table in the hall. Oh, how I wish I had pictures of this, so you could see how tiny these children were. They were all between the ages of 7-11, but none were bigger than a typical 3 year old.  One little boy had his back to us, intent on his food and not noticing the crowd of people who had appeared behind him. The social worker touched his shoulder. "This is Lazar."

I knelt down beside him so he could see me. So very tiny. How could this boy be 7 years old? He was shoveling his food as fast as he could, his body language saying he was afraid I would take it from him. He made no eye contact with me, his eyes never leaving his plate.

I swallowed hard.

It was so hard not to cry. The emotion of the past weeks catching up to me in this final climactic moment.

I blinked away my tears. "Hallo Lazar." I tried to say.

He flashed his eyes at me, for just a fraction of a second, before looking back his food, pulling his plate a little closer.

I tried to take it all in at once.

I wiped a tear away quick. I didn't want to scare him.

I needn't have worried; he hardly noticed me.

Lazar finished his meal in a matter of seconds. The social worker took his hand and lead him, along with the rest of us, down the hall to the playroom. Lazar immediately sat down and started dangling the nearest object.

I walked in and picked him up for the first time. I quickly handed my camera to the nearest person to get a couple of pictures.





The social worker had been engaged in a conversation with someone in the hall. Suddenly she intervened and told me "No pictures until he is legally yours." She wanted me to delete these but I refused. Family at home deserves to be able to see these moments. I promised her I wouldn't do anything else with the pictures until he was mine.

He clung to me like a Rhesus monkey. At first I felt flattered. This would be GREAT for attachment!
(by the  next day I figured out he does this with whomever will let him, latching on to every.single.person who walked by. It is nothing but a survival skill for him; a way to get out of the group room.)

It was a short visit, 45 minutes at the most. Sometime during the visit the social worker asked me, "So what do you think? Is he what you expected? Are you accepting of his referral?"

I couldn't imagine saying no at this point. I know what all the papers say and his history, but I don't know anything about HIM. He is a little person who I am going to need time to know and understand. "I had no expectations." I said. "All I knew was he was a 7 year old boy with Down syndrome." What I wanted to say was, "A 7 year old boy with Down syndrome who has spent his entire life in an institution could mean anything. I knew better than to have expectations."

As we left the facility that day my mind was spinning. There was so much to take in! How I wished Dean was with me so we could process it all together. It would be a lie to say I wasn't worried. Lazar had a lot of orphanage behaviors, and was clearly lost in his own world. Did he have autism? Was he "just institutionalized" and some of those autistic-like qualities would eventually disappear? What about his eating? He was eating pure mush - applesauce consistency. Is he able to chew?  And that tongue! It was the largest tongue I'd ever seen! (the pictures above do NOT do it justice!) He spent every single moment sucking on it, and when he was eating he used it like his lower lip. I knew feeding therapy was in our future. When I held him it felt like he was just bones under a lot of clothing. How skinny was he really? The nurses said he was potty trained and yet I could feel he was in diapers. Could we be so lucky to get a child who is potty trained? He was a brand new walker, keeping his arms in high guard position. A toddler. We weren't prepared for a toddler. We were getting a SEVEN year old, but he is like a 6 month old who walks. Our house isn't childproof by any means.

I quickly went into my apartment and turned on Skype. It was now 6:00 a.m at home and Dean would be waiting for me. Waiting to see the first pictures of his new son.

"Well?" he said.

I uploaded the pictures and told Dean, "Umm...you need to childproof the house honey. I mean, like for a very young toddler. Put everything up."

I knew our lives were about to change in big ways. I was excited to see what God had in store for us.





Monday, November 19, 2012

November 19th, 2011

One year ago today I arrived in Belgrade, Serbia.

It's always a bit of a shock to one's system to sudden arrive in a country where the pilot doesn't always know how to park the plane AND you don't understand the language or read the signs.




It was a Saturday and I had three days to wait until I got to meet a tiny little boy for the very first time. But first...first there was some shopping to do!

Friday, November 16, 2012

November 2011

November of 2011 was full of rushing, gathering and planning. Rushing to buy things for a little boy we didn't know. Gathering of documents. Planning for me to be gone for 3 weeks.

One year ago yesterday, November 15th, I booked my flights to leave on the 19th. I was still scrambling to get a couple documents we'd found out had expired just days before.

Stressed: That's mostly where I was at on this day last year. Stressed to the max and I had two days left to pack and organize the house. I really can't talk during the last couple days before I travel. My mind is full of 5,000 things to do and I'm constantly afraid of forgetting something.

Anxious to meet our new son we really knew nothing about. Not what he looked like, we guessed at clothing sizes based on measurements taken by someone else.

Nervous: There are lots of unknowns when traveling internationally. Volcanos happen. Earthquakes happen. Snowstorms happen. Plane crashes happen.


Wednesday, November 14, 2012

What a Difference!

If you've been following us for awhile, you'll remember that when I was in Serbia to complete Asher's adoption I stayed with the Schlorf family who adopted baby Johnny. Johnny has Apert syndrome. I had met him one year prior and knew it was a race against time to get to him and get him out before he couldn't hold on any longer.

Little Johnny was so dehydrated, and so....just sickly....He was turning 2 years old and weighed only a couple pounds more than he did at birth. Oh how we all worried about him and prayed for him when his Mama and Daddy brought him back to the apartment. I wanted to hold him SO BAD. To love on him, this child I had spent well over a year praying for.

But LOOK! Here is Johnny today! He has had some craniofacial surgeries, along with some work done on his hands, but most of all, look at his body! His ribcage now well hidden under a layer of toddler fat, his cheeks full and round. His skin no longer pale and translucent.

I'm so happy to be able to post about Johnny today. Thank you God for allowing me to witness his transformation. 

Tuesday, November 13, 2012

A Must Watch!

Brought to you by the Down Syndrome Guild of Greater Kansas City. This video should be shown in every school district across the nation. I think one of the best I've seen in all my years as a parent of kids who are Just Like You.

Monday, November 12, 2012

But I'm NOT stressed!

I hear it all the time, particularly from medical or educational professionals, "You have a lot of stress in your life."

Ummm no. No I don't.

I have three kids here at home, and all of them have Down syndrome, but I wouldn't consider my life stressful. Yes, there are days when I'm running kids here, there and everywhere in between, but that doesn't mean "stress". To me, "busy" does not equate "stress".

Maybe I just handle stress differently than some people? Maybe things roll of my back easier? Maybe I learned to handle stress at a really young age?

There have been stressful times in my life. When one of my boys was a toddler, I still remember the stress caused by his extreme mood swings, hours of head banging on the wood floors and not being able to take him anywhere. When Angela was ages 9-13, that was also a very stressful time when we were struggling to manage her severe behavior. I remember days when I was in tears a lot of the time.

But right now, life is ok. It is quiet and peaceful. There are no major issues we're facing. Having three kids with Down syndrome doesn't mean my life has to be stressful. I guess where are kids are concerned we've just figured out what's important and what's not?

How about you? What causes you stress and how do you cope with it?

Sunday, November 11, 2012

Soccer


Angela has just finished up the soccer season. She plays on the high school adaptive JV team. This is her first year playing soccer and she really loves it!

Angela has always been her own best cheerleader! Gotta love her enthusiasm.


She spends the whole game running...and running...and running...mostly in circles headed the general direction of the ball. She's usually about 15 seconds behind it. If she touches the ball she cheers for herself as if she's just scored the winning goal. (she's #6)


At half time Asher likes to go run around on the basketball court, and visit his favorite friend, Zack.


In two more years Axel will be be able to play. He can hardly wait!

Do you share videos?


As you know, I'm a Blogher affiliate, and my blogs frequently appear on blogher.com. I also do product reviews for Blogher.com advertisers. 

Blogher.com is conducting a survey about watching videos online. Do you have a couple of minutes (less than 5) to participate? Your thoughts are so valuable to Blogher and your opinions will help Blogher.com make better decisions about the video content on the site. 


THANK YOU!

Thursday, November 08, 2012

Things I've Said

Lisa Quinones - Fontanez, parent of a child with Autism, has an article out about the things people say when your child receives a diagnosis. Reading it reminded me of a couple incidents I've had over the years. Umm...not necessarily related to the article.

Many years ago - because I'm THAT old - when my now adult sons were just preschoolers, there was a movie theater near us that played matinees of kid-friendly movies, and best of all it was only $1.50 per person. This was great when you didn't know if your toddler or preschooler could sit through an entire movie, and nobody cared if you're kid suddenly got to is feet, pointed at the screen and hollered "Mommy look at that big dinosaur!"

One afternoon I took 4 year old Noah and 3 year old Tyler to the theater. They did great except for the four potty trips.  It was a record cold Minnesota day in February, with wind chills in the -30* range, so when the movie was done we stopped in the lobby to dress the kids in their winter gear.

As we walked to the car, Tyler on my hip and Noah holding my hand, the frigid wind whipped at our faces. I heard a screaming child coming behind us. I turned around to see a woman dragging a boy around age 7 or 8 by the hand. He was wearing jeans, a tshirt and was barefoot.  In her other hand were his coat and shoes. The kid looked scared to death, and he had to be freezing!

I hollered, "What are you doing? Get a coat on that kid! Shame on you!"

Lets keep in mind I was a whole 23 years old. I felt like I knew a lot about parenting. After all, 3 year old Tyler was a really difficult kid!

The mother turned, her eyes shooting fire as she snarled, "Mind your own business! You have NO IDEA what you're talking about."

She had every right to be angry.

Fast forward 10, 12, 15 and 18 years and this scene has replayed in my mind over and over again as I've found myself in situations where people have judged what's happening between me and one of my kids. It's obvious to me now, after all these years and life experience of my own, that other mother in the parking lot was dealing with big things. Her son could have had autism or sensory processing disorder or who knows what! And there I was, a young mother, judging.

When Angela was born we lived in a small town in rural Minnesota. I was recovering from the c-section and the 75 mile trip to the hospital NICU was taking it's toll on me. I decided to take a day off from visiting and spend some time with my boys, which allowed me to see one of their baseball games. There was another mother there from a neighboring town who had a young child with Wolf Hirschhorn Syndrome.  I latched onto her. (poor lady!) I needed someone to help me get through this early phase of navigating special healthcare in our area and she seemed to know what she was talking about. Over the next couple of years we would chat periodically, but that ended one day when Angela was about 2 or 3. My new friend told me she was pregnant with another baby (their 5th or 6th if I remember correctly). Knowing that WHS was a genetic condition but assuming it was inherited I blurted out, "Is this a good thing?" I may have even said something as stupid as, "I hope this baby doesn't have it."

Clearly I had a long way to go. I could see parenting another child with Down syndrome, but in my naive  head I couldn't imagine parenting another child with a disability like WHS. I couldn't imagine a parent WANTING to do it again.

I'm pretty sure that's the last time my friend talked to me. I'm completely sure I deserved it.

These two stories stick in my mind because I know my words burned like a hot iron, and today I can feel the wound for them. If only I could go back and apologize. If only I could explain the young self I was at the time. If only I could take back the hurt I caused.

As I have parented one, two and now three kids with Down syndrome, I've heard lots of comments. I doubt I've heard them all though since I am continually being surprised. Today I choose to surround myself with people who "get it", because like the other mom from the baseball game, I don't really have time, nor do I want to deal with people who are clueless. I try to mentor new parents who seek out my support as long as I'm able, but sometimes they just need to experience things for themselves. Life has a way of teaching what we need to know. 

Wednesday, November 07, 2012

Maxim Impact

If you're not able to adopt a child yourself, here's one way you can help. My friend Stephanie Nance is doing a fundraiser to get Maxim home! They are so very close, and yet they are several  thousand dollars short.

Lots of people say, "If you can't afford to adopt how will you afford to raise the child once they're home?" Let me ask you this: How of often do YOU have to come up with a $20,000+ piece of change for your children? Not very often unless they're going off to college or something. It is one thing to be able to afford the day to day living expenses and medical care for a child, but covering the up front  costs of international adoption is very difficult.

There are many of us who've adopted kids with Down syndrome and other special needs who understand how crucial it is to get these kids into families; kids who would otherwise be rotting until their deaths. I've completed two international adoptions. I have friends who have completed that or several more. We all "get" that it doesn't just happen. We didn't just decide one day to adopt then run to our overflowing bank accounts and withdraw the necessary funds. I personally don't know many people who have $20-$30,000 laying around just waiting to be spent!

That is why there are fundraisers like this one, where you can help someone like the Nance family get a child home who has been sitting and waiting far too long! 

Monday, November 05, 2012

Dispelling Myths: Blog Troll????

I have heard recently that my name has been associated with a blog troll that is going around posting nasty comments on the blogs of adoptive families.

Ummm no.

Anyone who knows me in real life also knows that if I have something to say, if I'm not willing to put my name behind it I won't say it.

Here is some information for you. My blogger ID shows up as "Leah S." when I comment on a blog. If you have site meter or another system that allows you to track IP addresses, mine is 24.118.171.190 usually shows out of St. Paul, or Burnsville MN. (we're on the edge of both so I don't know why but it doesn't consistently show up from the same city.)

That said, I would never, ever leave nasty comments on the blog of an adoptive family. Ever. EVER! While I may not agree with the attachment to one organization, and I don't usually offer financial support to adoptions through that organization, (I do give financially through other adoption organizations though, like Project Hopeful)  the fact remains that kids are getting into families. That is the bottom line. Every day I sing praises to HIM for for the families, and I'm thankful families are stepping out and following in obedience to HIS call to get these kids out. I would never, ever, criticize families for taking that step.

So if you're one of the people who have spread this nasty rumor, I wish you would have spoken to me first. I'm a pretty open person. There is more than one "Leah" in the world, and I'm not the one you're witch hunting for!



Gum

So yesterday I posted on Facebook that Asher was chewing gum. Yeah, I'm pretty sure nobody believed me. HA! Well, I have video evidence. He kept this piece of gum in for a full 5 minutes before I was done supervising so I threw it away. He even managed to swallow several times without swallowing the gum! I chewed gum at the same time he did, and every time I made a big show of putting the gum in the garbage when I was finished with it.

Angela is not able to chew gum because she can't resist the urge to swallow it. Axel has had gum a couple of times and after about 30 seconds it, too, disappears.

This is 2+ minutes of gum chewing. I won't feel bad if you don't watch the whole thing. ;-) Interestingly, he didn't grind his teeth for about 15-20 minutes after we were done.


Sunday, November 04, 2012

Orphan Sunday: See them

When you don't see the faces, when you can't hear them ask "Mama? Papa?" ,  when you don't feel the hands grabbing you, begging to be held, when you don't see the blank stares of those who have given up and have stopped asking or seeking, when you see none of this it is easy to pretend it doesn't exist. It is easy to let it be someone else's problem. It is easy to say, "Their family will do it so we don't have to." It is easy to decide you're at a place in life where you're comfortable. Some days you might say, "I can see the light  at the end of the tunnel!"

Since when does God have us take the "easy" path?




Make an on-line slide show at www.OneTrueMedia.com

Most of the children in that video are now home with their families. Families who knew they couldn't turn away. Some of the children have not been so lucky. Some have given up living and are nothing but the shells of the children they should be, their spirits broken. Some have died waiting. For every child you saw there are hundreds more. They are here in the U.S. They are locked away in rooms or wandering streets around the world.

You cannot come here and say that you don't know. You cannot pretend these children don't exist. You cannot let the responsibility fall to your neighbor. Your neighbor may have already turned his back.

Is there room at your table? Do you have room for one more bed? What will YOU do? What is YOUR part?

Saturday, November 03, 2012

On Eating

When we chose Asher, we knew that he was not able to eat anything beyond pureed foods. Now, when you're told this by orphanage staff it's hard to know if the child isn't ABLE to chew, or if they're not given the opportunity to chew. For example, when I brought yogurt to feed him during our visits, the nurses put it on the radiators to warm up because he had a "sensitive throat" and couldn't have cold things. This was also the reason he had pureed only foods. In reality he had never had yogurt. In addition he had tonsils that were overlapping and there wasn't ROOM for food that wasn't pureed to applesauce consistency. He'd never had an opportunity to learn to chew, and other than using his tongue as a lower lip it was completely non-functional. It was nothing more than a hunk of flesh sitting flaccid in his mouth. Watching him eat I knew it was going to be a lot of work to get him chewing.

I had no idea it would take well over a year of daily work - and frustration - for both of us. I said "over a year" because we're coming up on one year home and we're not there yet. In fact, we have a long way to go.

Many years ago, Angela had a feeding tube. She was able to eat solids but she could not have any liquids by mouth. Even liquids thickened to pudding consistency could be a problem for her to swallow safely, so all liquids were given by g-tube. After several years of intensive occupational and feeding therapy we finally had a swallow study done at age 3 1/2 and she was able to swallow regular thin liquids without any problem. Ok, that's great!!! Now we needed to get her drinking enough to prevent becoming dehydrated. Because that wasn't something she was used to, it was very slow in coming.

Finally one day I had a moment of clarity. Angela was getting all her liquids tubed so she wasn't thirsty. What would be her motivation to drink if she's not thirsty? I decided the "sink or swim" approach was worth a try. I wouldn't give her any liquids by tube for several days, allowing her to develop a desire for liquids. (FYI our feeding therapist and doctor agreed with my doing this since 1) we knew she was able to swallow safely and 2) if she were to get dehydrated I could easily tube her. In other words, there was a safety net in place) This worked fantastically and we never went back to the tube again! 6 weeks later we hadn't used the tube even once and were able to remove it. We never looked back!

So here is Asher. In therapy sessions he is now able to chew many things. It doesn't quite look like the way you or I chew, but it is effective enough. He still needs very close supervision. When he first came home he had no awareness that things in his mouth were too big for swallowing. He also had NO gag reflex at all. You could give him a bite of cookie and cookie and he'd put it in his mouth and attempt to swallow it whole. As we learned this there was one ambulance call and several other very close choking episodes!

The dilemma I'm having with Asher now is similar to when Angela was transitioning to oral liquids. He is able to chew but he has no desire to eat anything that isn't pureed but instead requires work on his part. I think it's time for the "sink or swim" method for Asher. . Its my opinion that he needs to get hungry in order to WANT to put effort into eating. I don't know if I'm right, so I asked his feeding therapist if she thought he was ready for this.  She agreed that it was worth a try. This weekend the food he's been offered has required some chewing.

Ummmmm We have a standoff.

As soon as the food is put in front of him he goes "blank" and completely shuts down. I know that a post institutionalized child can hold out much longer than a typical kid. He needs to have control over his environment and this is one area he can. Its a touchy situation. He needs to know we won't let him go hungry but he also needs to know he has to eat.

Please say a prayer for both Asher and I. For Asher that he can progress to the next level, for me to have patience as we work our way through it. Also, for guidance for me to work through these stages with compassion as I guide him through this area of development.

Adoption: when you're overwhelmed

International adoption. I watched lots of friends go through it and knew it was bigger than me. It comes with a lots of paper work and details. Let's face facts folks, I am NOT a very organized person and I have the attention span of a gnat. I would never be able to pull it off.

And then God did one of those God-type acts. When I said "I could never...." he jumped at that opportunity to show me I was right. I probably couldn't do it alone, but through Him I could do anything. It helped that He hooked me up with a country who's process is not so daunting! LOL

And so we started that first adoption two years ago. When it came time for me to travel Dean said to me, "I can't believe you pulled this off. You got all that paperwork done and stuck with the whole process without loosing focus. I'm proud of you honey!"

What he didn't know was that every single day I would ask God, "Please help me get all the things done today I need to do. Help me prioritize my day."

Now when I'm just going about my day-to-day tasks, if I start to feel overwhelmed by what the day holds, God reminds me I completed two international adoptions, surely I can handle this small task before me.

If you've ever contemplated adoption but have been too intimidated by the process, throw that fear away. Fear gets you nowhere. Instead face it head on and remember:


Matthew 19:26
New International Version (NIV)
26 Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”



Thursday, November 01, 2012

November 1st, 2011

One year ago today, the first day of National Adoption Awareness month, I sent the following email to the Adoption Unit at the Serbian Ministry of Labor and Social Policy:

We are ready to commit to the 7 year old boy! If you would be so kind as to submit our dossier to his social center for their approval, hopefully I will be in Belgrade very soon! As soon as you hear back from the social center I should be able to travel the end of November.
Sincerely,
~Leah S.~
Both Dean and I were giddy with excitement. I was nesting like crazy and preparing the house for me to be gone for three weeks. What would our new little boy look like? Would he attach to us? Is he affectionate or distant?  What size clothes does he wear? Will he be able to talk? Will he like playing with trucks like his brother Axel? Will he talk incessantly like his sister Angela? What color hair does he have? What color eyes? What will we call him?