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!"

Thursday, March 31, 2011

Secret Keepers?

I've never heard of "My Secret Keeper Girl" before, but my friend Renee is talking about it on her blog. It looks really interesting, and something to look into for Angela. Renee also has a My Secret Keeper Girl give away going on, check it out!

$100 Giveaway!!

I have a $100 give away going on at my other blog site. What other blog site? I know, right?  LOL Well, you can find it here! When you get there, check out the links geared to a special group of moms!

*Edited to add*:  I thought it was strange nobody was commenting!!!! Apparently there was a problem with the comment section on that blog. It's all fixed now. :-)

Wednesday, March 30, 2011

The Mystery

In the almost 4 months Axel  has been home, we have not had one single toileting issue during the day. We did have to teach him how to go standing up, and deal with some stubbornness, but never had an accidents.

I was gone for part of the evening, so Dean did dinner with the kids, etc. When I got home Axel was already in his pajamas. He usually likes to hang out with us and watch TV in the evening, but tonight Dean said he sat for only a few minutes after dinner then headed to his bedroom to play.

VERY unusual for him to do this at night.

Imagine our surprise tonight when Dean went to tuck Axel into bed and found his bed soaking wet. Freshly soaking wet. Just the comforter, nothing else. As soon Axel realized we knew this, the guilty face and tears showed up. I pulled his clothes he'd taken off out of the hamper, and they were dry.

Axel went to bed without a blanket.

(although he never sleeps with one on, later after he's asleep I'll put one over him.)

I think putting him into school just upped the ante around here in all kinds of ways. This is going to be our next battle of the wills, I think.

Blissfully ignorant

That is how I spent the majority of my day today. Blissfully ignorant of what was happening outside of my own little bubble. I put a smart ass comment on Facebook that said,  " Just in case you wanted to know...I am in the grocery store...ALONE!!!" I came home and put dinner in the crock pot, made a bunch of necessary phone calls regarding Axel's school placement, and just generally putzed around.

Then I remembered I needed to get new work-out shoes because I'm start working out again tomorrow. I was browsing through a store, and was *just* opening my twitter app because I wanted to post, "Shopping for NOTHING in Target...BECAUSE I CAN!" when my phone rang.

It was Axel's teacher. I had a hard time hearing her because of this screaming in the backround that sounded a lot like a child being murdered. "Leah...We need help!" she said. "Is that HIM I hear????" I asked. "Yes, that's him. All the other kids have been removed from the room to keep them safe."

O....M.....G

"I'll be there in 5 minutes." I called the school office and told them they're going to see my fly in the door but I was NOT stopping to sign in. I got there, raced down the hall, passing Axel's class who was now sitting in another hallway trying to have a snack.

I quietly opened the classroom door, and there sat Axel at the table, having a snack, arm cocked to throw his cracker. He jumped when he heard, "WHAT are you DOING?" and immediately put his hands in his lap and got the guiltiest look ever on his face.

"What do you think you're doing? You do NOT behave like this in school. Now you will SIT!" I pulled his chair away from the table and turned him to face the wall. "You will NOT behave like this in school. This is NO!"

And he cried for the first time all day.

Apparently this behavior started before lunch, and it was now 2:45. He attacked kids, pulled hair, lunged at anyone who came into his space. Go read this post, and it will give you and idea of what they were dealing with. And I'm laughing at the fact the district didn't give him a 1:1 aid. The child cleared the classroom!!! And, staff couldn't do a CPI hold on him (like I did in the post I linked to) because of his neck.

So back to my arrival upon the scene....

I told his teacher it was now safe to bring the other kids back in. There would be no more problems as long as I was there. (Where's my super hero cape?) The staff sat the other kids down at the table with puzzles, and we made a HUGE deal out of these fun puzzles. Axel loves puzzles. I went over to him, "No puzzles for you. You are sitting."

And he got huge crocodile tears and his chin quivered.

Impact.

After a few minutes I asked him, "Are you ready to try again?" and he signed, "Again". He came to the table, sat down, and nicely did puzzles for about 15 minutes. It was time to go home, and we decided he should ride the bus home so he doesn't think Mom will come pick him up when he behaves like this (though for him, the preferred thing is to ride the bus. Still, don't want to create habits.)  His teacher asked him, "Are you going to have a better day tomorrow?" and he got that huge guilty look on his face again.

I told his teacher I was going to have them take him to the bus as usual, and I would hang back. He must have thought I left because he started acting up just as he was stepping on the bus. I hollered, "Axel! Get on the bus!" and he got up those steps faster than I thought he was capable of.

Tomorrow there is a new plan in place. I will be going to school, but arriving after Axel gets there so he doesn't know I'm there. I'll be hanging out in the hallway so I can make a sudden appearance should the need arise. He's going to learn very quick that just because he's at school doesn't mean Mama and Papa don't  know what's going on.



Re: 300

I posted this last week, but didn't have a shipping address. Now I do so I'm reposting. :-)

In some economically challenged parts of the world, oral hygiene is not routinely taught to children. Axel is a prime example of this!

The makers of the Firefly toothbrush have designed a brush with a built-in, very fun timer. The Firefly toothbrush has a little light in the handle that stays lit up for one full minute, encouraging the child to brush as long as it is lit up. (or to start the lit timer again and brush longer!) This is crucial for parts of the world where children might never have seen a toothbrush before, and oral hygiene isn't routinely taught.

A couple of months ago I did a post about the number 300. Guess what? I haven't forgotten that number. In fact, it has become even more significant!

I need to COLLECT 300 toothbrushes!

I have found a site where boxes of 48 Firefly toothbrushes can be ordered for a very reasonable price. They also have bulk orders of travel size toothpaste available. If you are interested in donating toothbrushes or toothpaste, you will get a receipt for your donation from  Cherish Our Children International, which is a 501c3 organization. 

Donations would need to be in by April 25th.  (That is not a lot of time, is it?) If you would like to include SMALL toys or trinkets (like you might put in a child's birthday party goodie bag) you're welcome to do so. Donations can be shipped to:

Leah Spring
P.O Box 211174
St Paul, MN 55121

So what am I doing with all of this? Well...lets just say it goes back to these posts, and there will be more details coming soon! Mark your calendars for April 30th when I can post some GREAT news!!

All By Himself

Today is a BIG day for Axel! Today he spreads his wings and goes to school all by himself. I'm so excited for him!

Mom has to get that "First day by yourself" video, of course.




He couldn't believe I wasn't getting on the bus with him! Oh, the grin on his face was priceless! It said, "Oh, no Mom? I am going to have FUN! (insert evil laugh here)" As soon as he realized I wasn't coming along, he started bossing the bus driver around. Little stinker.



I wish I could say I was comfortable with his classroom placement. I'm not. I'm still trying to decide if I'm making a huge mistake by sending him. He's come SO FAR behaviorally, and after my observations in the classroom over the past two days, he will be at significant risk of loosing the ground he's gained. Yes, he'll learn how a school functions....in a grossly understaffed classroom with teachers who can't communicate with him. This is NOT the fault of the district. Axel poses some very unique challenges to the district right now, that they've never dealt with before. Axel doesn't "fit" into any of the programs (and there is a wide range of programs in our district!) The number one problem is the fact Axel's primary communication is ASL, and he's growing vocabulary every day. Except that he doesn't have a hearing loss. That one tiny piece makes the whole communication issue with school muddy. I have another post coming about this, I'm just not sure what's ok to say here, since there are some people from the district who read my blog.

Don't think I'm leaving this alone! Those of you who've been reading here for any length of time know me better than that. Axel's needs will (eventually) be met.

Tuesday, March 29, 2011

Day 6

This post is part of a 30 day blog series.

Day 6: Picture of something you love. 


Well, I could post the obvious: pictures of my family. Those are the most important things in my life, of course. But what about something that is unique to me? I didn't have to think about this very long.


That's Nooner, loaded for a 2,000 mile epic journey with a group of women who I love. I'd never met them before that day, but I loved them just the same. They are my sisters in spirit. They "get" me. We are members of the F.R.O.G.S. There is only one way to get into the F.R.O.G.S., and the initiation requirements are secret, but when you've met the requirement, you can be sure you'll be welcomed with open arms. 

I'm going to repost something I wrote a few years ago that was published in Biker Alley magazine (which is no longer in print.)
......................................................................................................................

May 2007

Almost a year ago I reached one of my "Before I turn 40" goals. I took a motorcycle safety class and earned my "M" on my driver's license. I think I unconsciously set this goal way back when I was a teenager and I rode behind my mom, but later as an adult and mother of 5 young kids myself it seemed an impossible goal. Then, at age 35, I found myself divorced and with every-other weekend to myself. I started dating again, and one of the "prerequisites" of anyone I dated was that, not only did he need to have a bike himself, but he needed to ride regularly as well. It never occurred to me to get my own!

One of the men I dated had a sport bike (aka crotch rocket) and I found I loved the speed and rush of adrenaline that came with the ride. I even contemplated owning one myself, but our relationship was short-lived and suddenly that particular type of bike didn't seem to fit me anymore. As any adrenaline junkie will tell you though, it's highly addictive. The goal was now firmly etched into my soul.

Then I met Dean. Not only did he ride a Harley, but his entire extended family did as well! Dean and I fit together like a hand and glove. We rode together on his bike like we'd been doing it all our lives. What Dean didn't know was that riding behind him was a woman who was starting to have issues. Control issues, that is.

Like most people, when I'm riding behind, I loose myself to my thoughts. (Ok, I have a tendency to sing because Dean can't hear me!) I can look at the scenery and just enjoy it. Once in awhile we can have a conversation, but usually in broken sentences, or bits and pieces at a stoplight. Mostly though, I'm just by myself on the back of the bike. If I really want to feel "connected" to him, I can put my arms around him, or give him a squeeze with my thighs. Sometimes he might reach back and put his hand on my lower leg (the only part of me he can reach.). Those actions, however simple they may seem, are very meaningful forms of communication when on a bike.

Unfortunately there came a time when I developed awareness for other things around us. I've always had a watchful eye for hazards when on the back of the bike, but it's not been 100% up to me, so I could slack off now and then. But one day, out of the blue, I became very nervous. It was like somewhere deep within me a switch was flipped, causing me to be hyper aware of everything. Does he see that car? That pothole? That gravel on the inside of the corner? How good is he at quick stops? My ears became aware of his shifting, both up and down, which meant I also noticed differences if there was a problem.

I thought it was just me being paranoid. That is until I started talking to women riders who told me, "That's how I knew it was time to get my own bike!" So I took their advice, and got my license just before my 40th birthday.

The first few times out, (once I got over the fear of our daunting driveway!) I went alone, sticking to side streets where 50 mph felt very
fast! It didn't take me long to venture further, and on roads that had a 55 mph speed limit. My time is limited to ½ hr here and there squeezed in after household chores and while my daughter is still in school, but even so within a couple of weeks I was able to put a couple hundred miles on my bike.

One day, shortly after my daughter left for a weekend with her dad, Dean came home early so we could go for a ride. It was to be our "maiden voyage"; our first trip together on separate bikes. He decided we would ride to the home of his parents just 15 minutes away. "But we're taking the long way Honey. We're going on the freeway."

"The freeway? I've haven't done that yet and it's getting to be rush hour!"

His replied, every so calmly, "That's exactly why we're doing it. I don't want you alone the first time. It's only a mile or so of freeway. You'll be fine. So let's go!"

Suddenly I didn't want to go on this particular ride, but I wasn't about to let him see my fear either. After all, I do have control issues, and I'm highly competitive!

I quickly realized I needed a new goal, and it was to be to keep up with Dean. I knew he wouldn't go too fast for me, and I knew his ultimate goal was my safety. But I also knew if I did anything stupid, or showed fear, word would travel through the entire family before my feet even touched the pavement again. So keep up I did. For the entire mile and a half I stuck to him like glue at 70 mph, and even changed lanes once to get around a slower moving vehicle! I felt like I'd "arrived" and was now a legitimate rider.

The next day we ventured out more. This time it was on a three lane interstate with all kinds of cars (and semis!) merging and exiting. We
switched lanes more than I've ever dreamed we needed to, and I'm pretty sure he did this on purpose. I really didn't pay attention to WHERE we were going, because I was too busy keeping up to Dean, and staying away from the tires of big trucks. But I did it! All 60 plus miles of it. And along the way, I discovered something I never knew about the gift of riding my own bike.

You see, my daughter has a disability, and my life with her is often very complicated by doctor appointments, school meetings, and worry about whatever her current medical crisis is. I rarely get a break from her care other than a couple of hours each week. Even when I was riding behind on Dean's bike, getting "lost in my thoughts" often meant getting lost in my thoughts about the latest school report, or doctor's diagnosis, or how to help her achieve the next much-needed independent living skill.

What I discovered on my own bike is there isn't one single opportunity to think about my worries of the day or week. Every fiber of my being is involved in the ride. My nose smells everything there is to smell; from the diesel fuel of the truck next to me, to the lilac bushes in full bloom on the side of a country road.

My ears hear the subtle changes in my engine, they hear when I need to shift gears up or down. They revel at the powerful sound that comes from a fast acceleration.

My hands grip the handlebars, doing a subtle dance between brake and clutch. With just a very slight change I can accelerate quickly, or let the engine speed slow me down. My feet join in the dance, braking and shifting as the need arises.

My body feels the changes in the engine, the rumble of the exhaust. It feels the changes in the wind, instinctively adjusting to keep the bike upright, becoming one with the bike through curves in just the right way so as to make it one smooth and beautiful move.

My heart and mind are in the ride, taking a break from all the world has offered to me on any given particular day. Leaving it all behind, trading it in for the feeling of freedom, power, independence and pride that come from riding alone.

At the end of the ride, when the kickstand goes down and I take the key out of the ignition, I'm ready to take on the world again, and all that it has to offer. I'm ready to be a mom again, refreshed and energized to live each day to the fullest.

1st Day of School!

Yesterday was a big day for Axel! His VERY FIRST day of school. Ever. In his entire life. At 10 years old Axel got to experience what every child in the U.S. has a right to. An education.

We're easing him in though. Yesterday I rode the bus to school with him, and we only stayed at school for a couple of hours. Today we're going in later (actually leaving in a few minutes) and will have lunch at school and stay for the afternoon, then I'll ride the bus home with him.

Tomorrow he is on his own.

This will only last a few weeks, until his surgery on May 16th. We wanted him to get a taste of school, understand the routine, etc. so in the fall when school starts up again, and he HAS to go by himself (because it'll be my first day back too)  it's not a 100% brand new experience.

I have SO much to say about Axel's school placement, both good and bad, but I just don't know where to start. Right now, for me, the bad is outweighing the good. It's not the district's fault, and it's not the fault of his new teacher. It is the fact that Axel poses some very unique challenges to the classroom. Being non-verbal, AND learning to understand English, PLUS learning to sign, and NEVER having attended school before. Well. That is just a lot of stuff going on.

I'll post more about this later, but for now I'll leave you with some pictures.

Waiting for the bus.

As we were waiting for the bus, I don't think he really understood what was happening. Why were we standing at the end of the driveway? In the COLD? Finally I heard the bus and said, "Axel...what's that? Do you hear that??? Oh, it's the BUS!! For YOU!! Oh how his eyes lit up, and he hopped up and down the way he does when he's demanding something happen NOW! "Hey bus, stop HERE!!!!" As the bus pulled up his driver was waving to him, giving him thumbs up, etc. 

The driver and aid were very nice, and patient with him as we put his harness on. (he'll be in a 5 point on the bus, for everyones safety. ;-) During the ride I lost count how many times the driver asked him, "How ya doing Axel buddy?" And gave him a thumbs up in the mirror. 

Riding the bus. He loved it. He'll love it more when I'm not with him and he can be a turkey!

Miss Tough

Last night was the awards banquet for Angela's floor hockey team. She plays on Junior Varsity. The varsity team took second place in state last week! Every day Angela tells me, "Next year, I play varsity goalie!" Umm...yeah. Those kids are tough! Well, maybe someday Angela will get the chance, since she was awarded, "Miss Tough" award for her team.

Day 5

This post is part of a 30 day blog series.

Day 5: My siblings

This is where you get to learn how complicated...and wonderful...my family is. My family story is long, there is just no way around it. I have to go back about 55 years to tell it.

When my mom was 18, she was dating a man and got pregnant. As was often the case in the 50's, when an unwed mother was pregnant she was moved to another community to have the baby so nobody would know. My mom moved down to the cities, and when the baby...a girl...was born she was placed for adoption. She never told anyone.

It wasn't long before she and my dad met. My brother Lynn was born just before their 1 year anniversary, followed 19 months later by my sister Sandie, then 7 1/2 years later by me, and we all lived happily ever after!

But wait, you read this post, and now you're confused, right? SO WERE WE!!!!

When I was around 15 or so, while digging around in boxes I had no business being in, I stumbled upon some confusing information about my mom. She referred to having 4 children, but...there were only 3 of us. In my young mind I decided she'd had another baby who'd died. Then when I was 17 and getting into my own trouble, my mom, in an attempt to use shocking news to set me straight, told me that she'd had a baby she placed for adoption. HA! The answer to the secret was revealed. But I was a cool cucumber, and not about to let on to mom that I knew anything. I gave no response, which left HER very confused. LOL She expected questions, instead I gave her the cold shoulder. She thought I hated her.

Just two months later, in my senior year of high school, I came home from school one day and my mom met me at the door. "I got a letter today." She said. You see, my mom had always kept her adoption records open. All those years, any time she moved, she contacted Lutheran Social Services and gave them the new address just in case her daughter ever wanted to contact her. This day a letter had arrived saying her daughter wanted to meet her. We met my sister Ila, and her baby Adam 2 months later. Ila has been a part of our family ever since.

So now I had a new sister Ila, my brother Lynn and my sister Sandie. We're still short one sibling, aren't we?

I was 20 years old, married, and had just had my first baby when Lynn, Sandie and I were called to dinner at my parent's home. There was another secret to tell....

When Dad met my mom, he'd been engaged to another woman and the wedding was right around the corner.  Dad broke off the engagement, and many family discussions with his parents ensued! A few weeks later the other woman told him she was pregnant. Dad didn't believe her and refused to go ahead with the wedding, and instead married my mom a couple months later. About a year down the road my grandmother called my dad. She'd just seen that baby and, having had 11 children who shared familial traits, there was no doubt in her mind that baby was my dad's. No contact was ever made, and the issue was dropped (but not forgotten!)

So here we were, many years later, having been summoned to dinner. My dad  had a son. Jeff. Dad had already met him, and we were going to meet him the following week. Meeting Jeff was a little freaky. It was like meeting my dad when he was 28 years old. Jeff is JUST like my dad and my brother Lynn. He is very close to our family, and sometimes we forget that we weren't raised together.

Now you know how all my siblings came to be, let me tell you a little about each one.

Ila, my oldest sister, is....50-something. (I won't tell her secrets. LOL) She is married to Bob, and they have 3 children and 2 grandchildren. She lives out of state. Ila has done a fantastic job of raising her children who are all now adults and on their own. Her kids and her family were her priority, and it shows.  I haven't gotten to see her for a couple of years. We used to talk all the time and I miss our long talks!

Jeff is next in line at 52 (I think.)  He is a programming engineer for a local T.V. broadcasting station. He is married to J'Lynne. Oh wait, I forget that's not her name. It's really "Lynne", but we already had a Lynn and got tired of referring to her as "Jeff's Lynne" all the time, so within a very short time she was renamed "J'Lynne". The have been married for (12?) years. Jeff and J'Lynne tried unsuccessfully for many years to have children. Then J'Lynne was diagnosed with MS. They have a beautiful home and an adorable toy poodle Miko.

Then there is Lynn. Also  52. (this is where my mom says people are not allowed to do the math!) He has had an interesting life, much of which I'm not at liberty to share. LOL He has never been married, and as far as we know he doesn't have any children. LOL Lynn now lives on my parents' property and does a lot of the grounds keeping. (there is a lot to do!) He recently had a health scare that caused him to make some dramatic changes in his life. My parents LOVE having him living on the property. (not in the main house.)  He gets SO much done there, and is really a blessing to them. There are some perks that come with living with Mom and Dad though, and my sister and I are trying to figure out if there is room for us to live up there too.

Next up is my sister Sandie. She started her own blog based on her age, so I'm allowed to say she turned 50 last year. Sandie has nine children. Yes nine. There is a his/mine thing, plus the four she and her ex husband adopted. Sandie is married to Bob, and she has 7 grand children. (Gasp! How did my sister become a grandmother to 7????) and I'm sure there are many more to come.

Then there is me, and you know all about me already! LOL We've learned over the years that being called to dinner could possibly mean there is another secret coming out of the closet, but you know what? We sure love our family! Considering all the different influences, our family could very well be a dysfunctional one, but it's not. We can communicate with each other, and we don't argue. We don't always agree, those things certainly don't stop us from supporting one another. It's because of my family that, when I started dating after my divorce, I wouldn't bother with anyone who didn't have a good relationship with his own family. Dean loves his family as much as I love mine!

Sunday, March 27, 2011

Day 4

This post is day 4 of a 30 day series.

My parents

My parents are Ed and Dawn. This year they will celebrate their 52nd wedding anniversary. I think that speaks volumes.

My dad was raised on a dairy farm in rural Wisconsin, and was one of 11 children. His dad's name is Axel. :-) My dad is full of stories of growing up on the farm, and the antics he and his brothers got into on a regular basis. We have our favorite stories of course, like "Face meat and boughten bread".

My mom was raised in Northern Minnesota on a resort her parents owned. Her dad passed away when she was just 18.

When my mom was 19 she was working in the big city of Minneapolis as a paralegal. She and her friend Joyce had to get a signature from a client. They were sitting at a red light, waiting to left. They heard someone whistle and turned to see two young, handsome men in lane next to them. They all flirted the duration of the red light, and when it turned green my mom turned left, and boys pulled out of their lane and followed them!

When they got the clients house, the girls were a little miffed about these guys following them. As it turned out, they needed someone to witness the signature so she told the guys to come up to the man's apartment with them. Once the business was done and they were back by their cars talking and flirting. Finally the girls said they needed to leave, but the boys said, "Well...umm....we have NO idea where we are!" These farm boys had driven to the big city for an adventure, and boy did they get one! LOL

My parents were married just 3 months later. My dad's friend who was with him in the car was George. He married my mom's friend Joyce, and they just celebrated their 51st anniversary too!

I have 2 brothers and 2 sisters and I was the complete surprise baby. My mom was determined she was DONE after my sister was born, so she was a little miffed when I arrived 7 1/2 years later. She wasn't happy about it. She told God, "If I have to be pregnant again, can you make it a girl, and make her look like me?" It just so happens I do look just like my mom, with some of my dad's features thrown in. I totally have my dad's nose. LOL

I was very close to my dad when I was little. Being the baby of the family, he called me "baby"...well...only after all the others had moved out of the house and I was the last one at home. Because of age differences, I ended up being raised very much like an only child from the time I was about 11 or 12. My siblings, having already graduated or in their final years of high school, certainly didn't have time for the little sister. I was on my own. A lot. My mom had her career, and I often felt like I didn't really fit into her life. I became a very independent child. Sometimes a bit too independent, I think. Even now as an adult I sometimes have to remember I have a partner who I need to communicate with.

My dad owned a very successful luxury homebuilding company with 2 of his brothers. My mom was a multi-million dollar real estate broker for many years. Thanks to the hard work of my parents I was raised in a home with money but I never knew it. We were not raised having things handed to us. We were taught we had to work for what we got so that we'd have pride in ownership. Life was good.

My dad retired about 15 years ago, and my mom retired from real estate about 25 years ago and decided to go to bible college.  They now live in Norther Minnesota. It's only 4 hours away from us, but we somehow have trouble getting up there more than a couple times per year. My mom is very busy, as she's now pastor of a church in their town, and she also travels all over the world preaching the Gospel  of Jesus Christ. My dad always has some project or another going on, and spends a fair amount of time on the golf course. Dean is determined to beat him at the game, but I told him if he wants to remain the favorite son-in-law he better not!

It's interesting to me that so much of my life has been a parallel to my parents. When my parents were 40 they bought motorcycles, and I grew up on the back of them from the time I was 12. Because of that, bikes are in my blood! I got my own bike when I was 39.  Another similarity is our children. Like me, Angela is 7 years younger than her next brother, (though she was very much planned and took two years of trying to conceive to get her!) and has been raised very much as an only child since she was about 8 when her brothers moved to their dads.

I adore my  parents. My dad was the best dad ever. He was calm and quiet. If we got into trouble, Mom would do the lecturing, but eventually dad would speak up, and we knew that when Dad spoke it was like God himself laying down the law. While I may not have been close to my mom was child, as and adult I know I can call my mom any time and ask her for advice. One of my ex's, thinking he was insulting me, would often say things like, "You're just like your mother!" I took it as a compliment. I have a lot of respect for my parents. There are parts of their story that are not for telling here; things that could have easily destroyed their relationship, but they didn't let that happen. They are strong people, who have raised strong headed kids.

Saturday, March 26, 2011

Say Yes

Hangnails

The other day Axel had a hangnail that he was obsessively picking at. I finally put a bandaid  on it. Just like Angela, a bandaid on his finger means his whole hand no longer works!

He held his hand like this for several hours. 

Please can we take this thing off my finger?

He was NOT happy with me when I told him no, we're leaving it on. DONE with eye contact! LOL

But Papa can ALWAYS get a smile out of him.  (Mama does not have this power. LOL)

Friday, March 25, 2011

Day 3

This is post is part of a 30 day series.
Day 3: Your First Love


Well, now this is an interesting topic, isn't it? Is this the first boy I *thought* I loved, or the first boy who I truly loved? Hmmm I'll do both!

The first boy I thought I loved was Tim. I was in 8th grade, and my best friend Nell was in love with his best friend Bob. We went roller skating together on Thursday nights, and I sometimes called him...obsessively. Sometimes he and I would talk on the phone in the middle of the night without our parents knowing! HOW DARING OF ME! I got my first kiss at Valley Fair, and then we broke up 2 weeks later. LOL Tim is now a hotshot attorney in central Minnesota.

I really didn't have a clue what "love" meant in 8th grade. I remained free and single until my Junior year in high school when I met David. David and I dated 3 times, and I'm pretty sure my relationship with David caused my mother a few gray hairs! The first time we dated there was lots of lying involved, and not coming home, and getting found at parties in the middle of the night.  We broke up during my senior year, and he started dating a girl named Debbie. My heart was broken. Truly broken. Shortly after we broke up I graduated early and joined the army. When I got home from basic and training 6 months later and went into the reserves, he and I dated again for a time. But David's life was taking a very different direction than mine at that point. One that involved habits I refused to have anything to do with. Still, I missed him.

After my first divorce David and I dated again. I don't remember how we met up again. During those several weeks I even brought him to church with me once. My mom was out of the country and a friend of hers told her, "Leah brought a man to church with her while you were gone! He was very good looking. I think his name was David." My mom knew right away who it was, and immediately started praying that God would put and end to this.

David was really good with my kids, but I was suddenly able to see the things my mother saw years before. He was a super nice guy, he just wasn't getting anywhere in his life. I was raising 2 kids on my own, and going to school full time, and he could barely hold a job and take care of himself. One night he and I met at a local hang-out a girlfriend of mine and I frequented. He came in, obviously buzzed, and asked if he could borrow a couple hundred dollars from me, "to get my car off the tow truck. I just got a DUI."

Yep, done with that! I had no room in my life for someone who was going to bring me down. I wanted to go places in life. This time it was David who was heart-broken. I think he thought I was good for him. His brother called me several times, "What happened? Please talk to him, he misses you." No. I was done. Moving on!

Fast forward several years. I was doing adoption reunion searches, helping adult adoptees and birth parents who wanted contact with each other to reunite. A birth mother contacted me with a child's birthdate that was SO familiar. And the baby's birth name...I knew that name. I searched the Minnesota birth index, pulled up the date, and there was the birth certificate for David. I was going to have to contact him again.

I was able to reunite David with his birth mother, something that I knew he'd always wanted to do. He had questions. They spoke with each other quite a bit, and then one day he just disappeared. About 3 years later his birth mother contacted me asking if I knew what happened to him. I didn't. As a favor to her I did do some investigating and found nothing of him anywhere. I even called his dad, who said he hadn't talked to David in several years.

I have no doubt that God brings us through various experiences in life to prepare us for what's ahead. I needed to date David more than once, because God had some things to show me about myself. There were lots of paths I needed to walk to become who I am today. I needed to become who I am now in order to meet Dean. My TRUE love.

Day 2

This is day 2 of a 30 day series
Day 2: What is the meaning behind your blog name?

This is really easy! Our back yard USED to be very garden-like. I had giant dinner plate Daliahs, and lots of flowers everywhere, and a beautiful pond with a fountain. And, we live in the town of Eagan.

Now we have 4 dogs in the yard tearing it up, my flower beds have been fenced off which still doesn't keep little Roman out of them. It's not so "garden-like" anymore!

Name Signs

Oh, life is getting complicated around here. We have a BIG change coming to our lives starting on Monday the 28th. That change is going to involve me assigning name signs to several new people.

Normally, assigning name signs to hearing people is something that should only be done by deaf people. When I was an Educational ASL Interpreter, interpreting for deaf students in the classroom, this job was left to me.

There are lots of rules about assigning name signs, and it's really not something to be taken lightly. A name sign (usually) stays with you for life! I'm kind of hoping I can have an acquaintance of mine who is deaf do this task for me. If not, the task will be left for me again. Don't get me wrong, it's a fun thing to do, but it's exhausting and my brain is very much out of practice!

Having a name sign for everyone Axel has close, regular contact with is important. The most obvious is so that he can talk to me about his day. Lets say your child has just come home from school, and you find a sucker in her backpack. You don't know who put it there. You show your child, "Oh, you have a sucker in your backpack! Who gave it to you?" Hopefully, if everyone in school has name signs, your child can say, "Johnny" and "Birthday", so you can put those together to know that the little boy Johnny in your child's class had a birthday today! (of course, if your child's teacher is really on top of things, your child has a communication notebook and you'll find he or she has jotted down a quick note about the days events, including Johnny's birthday.)

The other reason, the one we prefer not to think about. Safety. Axel needs to be able to tell me both the good and the bad in his life, and this includes using people's names. In November 2007 Angela was assaulted in school. She was able to tell me the name of the person, but what if she couldn't? What if she was like Axel and unable to say anything intelligible? Name signs are CRUCIAL for a non-verbal learner.

Do you have a name sign? Does your child? Who gave it to you? If you have a child who has DS and goes to school, do the students and staff all have name signs so your child can tell you about his or her day?

Do You Want to Learn a Language?

I'm sure most of you are familiar with Rosetta Stone, the language learning software. They offer coursework in many different languages including

Arabic
Chinese
Danish
Dutch
English (American)
English (British)
Fillipino (tagalog)
French
German
Greek
Hebrew
Hindi
Indonesian
Irish
Italian
Japanese
Korean
Latin
Pashto
Persian (Farsi)
Polish
Portuguese (Brazil)
Russian
Spanish (Latin American)
Spanish (Spain)
Swahili
Swedish
Thai
Turkish
Vietnamese
Welsh

Do you see what is not on that list? Serbian is not on that list. After making several inquiries to Rosetta Stone about creating a Serbian program, I was told, "If we receive enough inquiries, we will create the program. At this time there is not enough demand for Serbian." Really? There was enough demand for Swahili or Polish? They did not specify what qualifies as "enough" demand, so I can only guess. But I do know this: The more people who request it, the better chances are of getting Serbian!

I know that I *really* need to learn Serbian. Thanks to Axel, my ties to Serbia are growing every day. My plans for the next year are being mapped out as I type. I know there are people lurking in the background of my blog who want to learn Serbian as well. Please go here, fill out the request, and add your voice to mine and the few others who have requested Serbian.

The Love of a Mother

After deliberating for 5 hours. (!!!) Kirill's parents were told they could not have him. That he was not adaptable to society. He has Down syndrome, you know. That makes him unadoptable.

But the judge didn't see this video.

Kirill's mother was being careful. She was doing the dance that all of us new adoptive moms do, trying not to frighten him. Especially Kirill who has NEVER known the love of a mother. She kept her distance. She did not intrude.

Look what Kirill chose:



He chose a mother's love.

Storming heaven, that's what we need to do about this. That is all we can do about this. God is in control of all of it, but he commands that we come together as one to pray for this child. Please visit the Davis' blog, and let them know you're praying. Give them encouragement. They are currently back in the US, and little Kirill is alone again in Russia. Alone, wondering where is that mama who held him close. Where is that love he got to taste, for just a few hours out of  his life.

There is another family coming before this same judge in just a few days. Please Lord, we are begging you, turn this judge's heart to butter and melt it into the puddle it should be for these children!

Thursday, March 24, 2011

Kirill's Story

A week ago I posted about Kirill. He was denied a family by a Russian judge. Why? Because he has Down syndrome. No other reason than that. The last week has been understandably emotional for Kirill's family. Tonight she tells the whole story on her blog. Please go read, and pray. The next few days are crucial for Kirill, and it's time for the church to storm Heaven!

Please help spread the word about Kirill.

Grab This Button

A Sister's Voice

My friend Solvieg (please pay a visit to her blog here ) posted this on the downsyn forum. It's beautiful. You should take the time to read it.
...............................................



I translated this from Norwegian to English, it's a piece written by Trude Trønnes-Christensen, a contribution to the Norwegian debate of whether to screen for Down syndrome or not.

A sister's voice.

Hardly any children are born with Down Syndrome in Denmark anymore. They are aborted. Norway may move in the same direction.

I have a story to tell.

How hard it is to write these words. So hard, and yet strangely easy, the words are heavy, but the heart is light.

The words are difficult, because they move into a room I want you to be touched by. There has to be power in these words, I understand that. The words are hard because they also belong to reason. And I don’t know if reasoning has a place in this.

The heart is light, because the heart just knows. That my heart belongs to my brother.

So how do I start?

What is this? Is this a battle speech? A party font? A sentimental story of a sister who stands up for her brother?
Maybe it’s all of this and maybe it’s not that either. Maybe it’s just me raising my hand, asking to be heard. Because I have something to tell.

I have something to tell you about a brother born in 1972, with stubby fingers and small neck, with sparkling eyes and a cute little mouth, and Momma saw immediately that he had Down Syndrome. He was named Stian.

Momma can tell the stories about the grief over what didn’t arrive, the joy of what did, the ladies who crossed the street when she walked down the sidewalk with the stroller, all the meetings, the decisions, the battles and they great mother’s love one feels for a child who needs more protection.

I can tell the sister story.

The sister story is beautiful. It’s also sore. Which is why it’s strong. Because through all the soreness, it’s beautiful. It’s like life itself.

The sister story carries bids of soft hands stroking through the sister hair, of strong arms that pushed away. Of a little big brother who took up so much space that sister some times thought there might not be room for her.
It’s a story of a brother who filled a house with so much love that some times I felt that now I’m overflowing with happiness.

A family can be each other’s mirrors, and I mirrored him. My brother who laughed with joy over the little things, like a new Donald Duck magazine on a Tuesday, like a trip to the swimming pool, like locking Daddy out on the porch on a cold winter’s day and Daddy was pretending to be angry and brother’s shrieks of joy reverberated through the house. Stian would spin with joy over winning a soccer game on a cool summer’s day in the back yard, and he would clap his hands over the hot dogs that were placed on the barbeque, he would stand over them and clap his hands, while the rest of us would just lie on the grass and wait. An ability like that also opens up the possibility for anger.

Stian was angry. So angry that he immediately identified with Sinnataggen (http://daisy.sodor.no/generated/2/2/9/22989_ny_sinnataggen_.jpg) in the Frogner Park the first time he saw it. Because if Stian got angry, he could be som angry that time stopped and the birds got quiet and the big spruces that were standing close to our house, pulled back a tad. And I, sister, walked out of the house and took a break.

The sister story also contains pictures of children who weren’t nice to Stian. Who pointed their fingers and laughed, whispered mean words in his ear, held him back and mocked him. Stian who winced and made himself small before he tore lose and ran.

But there were nice people meetings, too. Good friends, good neighbors, good moments. They outnumbered the bad.
Good people meetings, like the first time I met another sister, when we immediately understood each other, when the untold could remain untold, we had something not spoken laying over us, just like a veil of silver threads, and we knew that we had something nobody else had. And here I am able, as an adult, to go in, translate and name it empathy and responsibility and human knowledge, but I thought the experience of a silver veil says so much more, because a lot may work out the empathy and responsibility, but only something unique can produce silver veils.

Stian, my Stian, the only one, and how, my dear brother, will I manage to communicate your infinite value and great importance to this world?
When the world doesn’t want you?

Do I show them my heart? The heart that is yours?

That through my sisterhood to you has grown strong and warm and open.
Strong, because it has been close to a being that needs strength. Warm, because it has received endless love. Open, because it has witnessed a life that sees the world from a different viewpoint.

How do I convince the world that we need you?

Convince the world that we can’t just cut this piece of life away, as life has always been like this, through thousands of years of fully lived human lives?
Stian, you are life, the way it should be. The way life is.

Today, Stian is a grown man. He is the uncle of my children and my husband’s brother-in-law. An uncle who doesn’t say much, he’s a man of few words. He is grown and calm, and it’s been a long time since the birds were scared.
Uncle Stian, my children say, and give him a hug when they walk past him. Do you want to do a puzzle, uncle Stina, they say, and he nods and lays down on the floor, the grown man, and puzzles like he’s never done anything else. Uncle Stian, would you like a cookie, they say, and laugh as he’ll rather have two. He laughs back, and there, if I could have lifted this out in front of you now, you would see a tab of the silver veil, of magic, of communication so finely tuned and beautiful as a piece of music composed by tones you think you’ve never heard before.

But we have heard these tones before.

They have been part of human kind, of our lives as long as we know of, and I know that they do something to us.
They touch us and challenge us to be something that we could otherwise not have been.
They give us something that we could have otherwise not have been given.
To cut this away, cut this piece of life away, by denoting children with Down Syndrome an abortion possibility, is scarier than I think we can understand. Someone wants a medically oriented debate, or a debate on the right to make your own choice. I am tired of it.

I am tired of reason talking of burdens, costs, challenges and strains too hard to handle. That one has to be allowed to escape.

No, we shall not escape.

Maybe reason has no place here. Some things can only be comprehended by the heart. Love can only be comprehended with the heart. As can life. Stian is life, Stian is love. Stian can only be comprehended with the heart.

I have something to tell you.

I have to tell you that now is the time to use the heart.

Full article with pics here: http://www.aftenposten.no/meninger/kronikker/article4058683.ece

Day 1

Today is my introduction day. This is for all of those who are new here, who haven't read all the way back to 2005 when I started this blog. LOL Seriously, I have been blogging since 2005. Wow.

Day 1: Introduction, Picture, 15 interesting facts


I'm Leah, and that's my guy Dean up there who I'm clinging to. We love each other to pieces! Seriously, life just gets better and better. Dean and I met on August 22, 2003, and committed our lives to each other in July 2005. We have trouble remembering the date for some reason. It's either the 23rd, or the 27th. Or maybe it's the 24th. (if we were smarter, we would have just done it on the 22nd so we didn't have to remember another date! Shees!) Seriously, every year we have this discussion, and I have to call my sister who's granddaughter was born that same day which is why she wasn't present for the event...cuz she was busy catching a baby. Except she's usually waiting to call me to ask when our anniversary is so she can wish her granddaughter a happy birthday. Clearly it's a family thing. We like August 22nd better anyway. And just so you know, there is a reason we can't remember the date, and it has to do with the fact both Dean and I have a couple anniversary dates running through our heads, mixed in with birthdays of kids. But really, August 22nd is that date that is important to us, because that's the day our lives changed forever.
July something, 2005

15 Interesting facts.  (this is gonna be tough, because I am not that interesting!) So, in no particular order:

1) I was in the U.S. Army for 8 years. I was active duty reserve for 3 of those years, and then I went IRR after my second baby was born. I LOVED the Army and wish I had stayed in longer. But I was young and dumb. And impulsive.

2) I have been married a lot. It goes back to that impulsivity thing. I first married when I was just barely 19. I'd known him 3 months when we got engaged, and we got married on our 7 month anniversary. I'm pretty sure I caused my mother some psychological damage. But, I had two beautiful boys with him, Noah (23) and Tyler (22). We were separated within 4 years and divorced shortly after. I was young. And impulsive.

3) When I was 26 I remarried. This was not on an impulse, and we'd known each other more than a year by that point. He had two boys who I consider my own, since I raised them for 10 years. Rob will soon be 25, and Bryon 22. Together we had Angela. We were married 9 years. I learned some things.

4) When I was ready to let someone into my life again, I made a list of qualities that must be met by anyone I dated. He must have a bike, (read the link, there are more details there) can't smoke, have good relationships with his parents and siblings, own his own home. Dean met 4 of the requirements, lucky duck!

5) One year ago Dean was 100% against adopting. It was great for other people, not for us.

6) Axel  has been with us for almost 4 months now.

7) Every day I catch find Dean scrolling through photo listings of children available for adoption.

8) Dean and I love dogs. We had four but recently had to say goodbye to our Rubee. We miss her a lot. Over the last few years we've had a lot of puppies here too. I love puppies, but they are WORK! I don't miss the work. Or the poop.

9) I hate snow. I hate cold. Minnesota is the wrong state for us to live in. Then I realized that neither of our parents are here for much of the year because they are snowbirds. But the services here for Angela and Axel are too good to move south, so we stay. Someday we will have a winter home.

10) I had a "Before I turn 40" list. One of those things was to get my own bike.
"Nooner" 2004 Vstar 1100 In this picture he's loaded for a road trip, making him look small! He's not!
What I didn't know is that before long I'd have to add "Spank" to the team. 


11) One summer I put 10,000 miles on my bike. Last year I only put on about 3,000. It was a sad summer for  Nooner, and for me.  You see, Nooner needed brakes, and all our money was getting put into the adoption. This year it will be better, I just know it! 

12) In the past year, God has brought me to the most amazing places. They are not places one would choose to go for, say...a vacation. But I went, and our lives were forever changed because of it. Pretty soon Dean will get to experience it too, because there are plans in the works.

13) I hate cooking. No, really. I suck at it even more than I hate it. 

14) Dean has a blog that he has abandoned. If you want to see him write more, you can go comment on it.  I happen to love getting his perspective on things. 

15) I am a full-time student. I just took this year off so we could complete adoptions and stuff. I go back to school in September, and have about 18 months left. Dean says he's retiring when I'm done and find a job. He cooks much better than me, so that will be a good thing.

And I've added one more:

16) I love my life. Every single part of it. It's the life God chose for me and He knows what's ahead. Everything from today is preparation for tomorrow. Whatever He's preparing me for, I can't wait to see!

30 days

Today I'm starting a 30 day blog series. Nope, the idea isn't mine. I totally stole it from my friend Shea. (Thanks Shea!) 


Day 1-Introduce, recent picture, 15 interesting facts

Day 2-Meaning behind your blog name
Day 3-Your first love
Day 4-Your parents
Day 5-Your siblings
Day 6-A picture of something that makes you happy
Day 7-Favorite movies
Day 8-A place you’ve traveled to
Day 9-A picture of your friends
Day 10-Something you’re afraid of
Day 11-Favorite TV shows
Day 12-What you believe
Day 13-Goals
Day 14-A picture you love
Day 15-Bible verse
Day 16-Dream house
Day 17-Something you’re looking forward to
Day 18-Something you regret
Day 19-Something you miss
Day 20-Nicknames
Day 21-Picture of yourself
Day 22-Favorite city
Day 23-Favorite vacation
Day 24-Something you’ve learned
Day 25-Favorite memory
Day 26-Picture of your family
Day 27-Pets
Day 28-Something that stresses you out
Day 29-3 Wishes
Day 30-a picture

Tuesday, March 22, 2011

Learning to Play

When we were preparing to adopt, we cleaned out the office and turned it into Axel's room. Most of what was in the office got packed into boxes and put into the storage room. 

Fast forward to last week when I was digging all over the house looking for the wireless mouse I KNEW I have for my laptop. I wanted it for Axel. And I knew it was somewhere. In. This. House! That's when I remembered a box...and in it contained a bag...and in that bag some of the accessories for my laptop. I could picture the box, and the bag. WAY in the back of the storage room! UGH! I hate when that happens.

So I began to empty the storage room, one box at a time. I could SEE the box I wanted, but couldn't get to it. I pressed on. And as I pressed on, I stumbled upon something I'd forgotten we had! One of these!  I knew that Axel would love it. 

Apparently Dean loved it too!




Of course, as soon as I put the camera away, Angela joined them. She and Axel played for a good 45 minutes before they started crashing into each other. LOL

Migraines

I am so stink'in tired of migraines! Mine are cyclical, and like clockwork, every 2 weeks I have a three-day migraine. All I want to do is lay in a dark room, but that's not really possible for most moms, is it?

About 6 months ago I started taking a daily migraine drug. It worked GREAT as far as my migraines were concerned. Unfortunately it also messed up my GI system. I didn't know what the problem was until about a week before I left to get Axel when I finally put 2 + 2 together. The GI problems stopped by the time I traveled, and I went quite awhile without a migraine.

They are now back with a vengeance! I'm on my second multi-day migraine in two weeks. I had made it to day 3 and it was going away, but tonight (ok, really it was 3:00 a..m) I was woken up up by a very different headache than I usually have. UGH!

Time to get back into my neurologist and figure out what's going on. When they're well controlled life is good. I want the good back.

Monday, March 21, 2011

3/21


Happy World Down Syndrome Day!

Sunday, March 20, 2011

Buttons?

I've noticed that Axel's button (located on my right sidebar) is showing up on people's blogs. THANK YOU!

If you've added Axel's button to your blog or website, would you mind taking a moment to comment below? I'd like to follow your family's story as well, and I'm sure some of my other readers would too.

Overwhelmed

The needs are so great. I know God can do anything, and I know that he WILL do it all, but not without the help of all of us. 

Please go read my bloggy friend Adeye's post from today. I'm racking my brain. What can we do? What can we do? What can we all do?

Friday, March 18, 2011

300

In some economically challenged parts of the world, oral hygiene is not routinely taught to children. Axel is a prime example of this!

The makers of the Firefly toothbrush has designed a brush with a built-in, very fun timer. The Firefly toothbrush has a little light in the handle that stays lit up for one full minute, encouraging the child to brush as long as it is lit up. (or to start the lit timer again and brush longer!) This is crucial for parts of the world where children might never have seen a toothbrush before, and oral hygiene isn't routinely taught.

A couple of months ago I did a post about the number 300. Guess what? I haven't forgotten that number. In fact, it has become even more significant!

I need to COLLECT 300 toothbrushes!

I have found a site where boxes of 48 Firefly toothbrushes can be ordered for a very reasonable price. They also have bulk orders of travel size toothpaste available. If you are interested in donating toothbrushes or toothpaste, you will get a receipt for your donation to Cherish Our Children International, which is a 501c3 organization. 

Donations would need to be in by April 20th. (I'll be adding a shipping address in just a little bit.) That is not a lot of time, is it?

If you would like to include SMALL toys or trinkets (like you might put in a child's birthday party goodie bag) you're welcome to do so.

So what am I doing with all of this? Well...lets just say it goes back to these posts, and there will be more details coming soon! Mark your calendars for April 30th!

Thursday, March 17, 2011

More reading

I think it's important to remember that three months ago Axel had NO method of communication other than some grunts, pointing, and taking people by the hand. He had a couple of Serbian word approximations, but they were just that; words that his foster family recognized but weren't really recognizable to others.

When watching Axel cue this story, he is cuing the correct SOUNDS in the word. Even when I correct that he's saying with his mouth, it's because I'm working on him saying sounds I know he's able to say. Even so, he's still cuing the correct sounds, which shows that he recognizes them, it's just hard for him to get that recognition through to his mouth.

Sometimes the answer is "No!"

Today, on the other side of the world, a judge said, "No."

Go read my friend Julia's blog post.

This is the world we live in. This is what we're up against when trying to get these children out. Home. To families where they can be loved and live productive lives.

Sometimes the answer is, "No."

Developmental Milestones

Angela is 14 and will be 15 in June.

Her DCD teacher just called me from school to let me know that during homebase, Angela asked not one, but two boys out on a date with her. And to her house.

Very brave young lady, she is.

Time to have some talks. Really, I wasn't expecting this. Yet.

Wednesday, March 16, 2011

so stink'in smart!

Axel is learning SO fast! He's picking up cuing a little at a time, AND learning to read. Wow....amazing. In this video, you see him cue the chunk "an", then he has to find it in the words (or non-sense words) on the worksheet and circle them. Part of the reason I'm using Cued Speech with Axel is it makes him understandable. He cannot say the sound "n" at this point, and cuing gives him a way to show he recognizes it even without being able to actually say it. He can cue the SOUNDS (not the letter, the SOUND) "a" or "n" independently, and he can put them together to make "an". LOVE CUED SPEECH!

Monday, March 14, 2011

Are you my mama?

Check out these adorable little boys!


Are they not adorable? They are 3 years old. One has CP and the other has Down syndrome. And? These two little guys are available for adoption here in the U.S.

If you would like more information on them, please visit my friend Linnea's blog and she can hook you up!

What we didn't know.

When Axel's teeth were rotting out of his head, we just assumed he was in pain. He gave us no indication that he was, but how could he NOT be?

When he ate, he very carefully, and with great intention, used his tongue to move bites of food around in his mouth to what we assumed were less sensitive spots.

It's been a week since his dental work was done. Saturday he ate THREE bowls of cereal for breakfast. He hasn't done that again since, but man! Guess he was hungry!

Last night I was having problems sleeping and was sitting on the couch at 2:00 a.m. when I kept hearing his strange, rythmic noises. I had no clue what it was, but figured it had something to do with the wind we've been having here.  Finally after about 15 minutes I went to investigate. The noise was coming from Axel's room. He was laying on his stomach, banging his face on his pillow. I've only seen him do this a couple of times, but never has it lasted so long. Apparently his face doesn't hurt anymore so he can do it for prolonged periods.

And finally, the latest discovering was made this morning. When I went in to wake him up for the day he was sucking his thumb. I've never seen him suck his thumb, nor does he do ANY finger chewing like so many kids with Down syndrome do. Angela's hands are full of callouses from her doing it in her sleep. (she used to do it when awake too, but we haven't seen it in well over a year.....knocking on wood.) Axel has no such callouses so this habit is either brand new, or reborn since his teeth no longer hurt.

Sunday, March 13, 2011

Two Months from Today

Two months from today, on May 14th, the four of us will board a plane for Philadelphia. Once there we'll have the rest of that evening to play around a little bit. Not much, but a few hours to do something fun as a family.

On May 15th Axel will be admitted to Shriner's Children's hospital. He'll have an IV put in so that he can be well hydrated for his surgery the next day.

May 16th is the big day. Bright and early in the morning he will be taken away from us. I imagine he'll already be sedated so he won't remember that part. I'm glad! Then he will be put to sleep and the halo put on before the first incision is made.

The process of fusing Axel's cervical spine is expected to take anywhere from 4-8 hours. The biggest variable is the density of Axel's vertebrae, which his surgeon won't know until he can actually see them.

When Axel comes out of surgery, his world will be very different. Our lives will be different as we learn to live with the halo and other post-operative issues related to spinal fusion.

Two months from now, that's what we'll be doing. No wonder i can't sleep tonight.

Saturday, March 12, 2011

MN Special Olympics 2011 Area 12 Swim Meet

Last weekend was the MN Special Olympics 2011 Area 12 Swim Meet but I haven't had a a chance to post pictures until now. I have a lot of pictures. Ready for the overload?

Let me first say a couple of things about photographing a swim meet. 1) It is THE worst lighting possible. High and flourescent, with an odd blue or green glow from the water. I pray for blue. 2) They are fast-action shots which means you need to have a high shutter speed, which does not work well with poor lighting. 3) You're VERY far away from the fast action so a good zoom lens is a must. 4) I have no clue what I'm doing.

Really, the person best qualified to do this would be a National Geographic photographer who shoots lions  bringing down a zebra in the middle of the night.

That said, my shots are only mediocre at best. The start of the races is about 45-50 feet away, and the finish line is about 90 feet away from me. In bad lighting. Moving fast. Just say'in!

Just got staged for her first race. She's pumped!


And found mom in the stands.

Just in case you didn't know it Mom, I ROCK!

Here's the group she's swimming with. Seeing her in groups like this reminds me of how small she is. Angela is very small! Now, she might not be competing against all these people, but all the lanes are used to get as many divisions done as possible. The other girl in the black suit is Angela's friend who is one year younger than Angela, but she is a MUCH faster swimmer and in a different division. Still, they swim at the same time. 

Getting into the water. Never mind mom told her to use the ladder because she ALWAYS gets scraped up getting in this way. This time was no different and she was black and blue by the end of the day.

OOh cold!

Goggles On? CHECK!

Where'd my mom go?

Swimmers take your mark!

GO! This is Angela's butterfly. It's the first year she's swam this event, and she needs A LOT of work before I'll let her swim it again next year. 

Angela is always her own best cheerleader! Everyone cheers with her because you can't not. LOL

Hi mom! Gonna swim my backstroke now!


She looks like she's chalking up her hands. That's gymnastics Angela.

Freestyle!

WHOOOOOOOOOO!!!  I am DONE!!!! WHooooooooooo!