Sunday, October 31, 2010

A day Late

I'm a day late and often a dollar short! But, here it is...my exciting new project:



I'm a Christmas Warrior for ZARA



I'm a Christmas warrior for Zara!! I've committed to raising at least $1,000 for her adoption grant fund. You'll notice that I don't have a photo of the little sweetie. That's because she is so young and she was away at the hospital for her heart surgery. Isn't that great that she is getting her heart repaired? We hear of so many older orphans with unrepaired heart defects. This is really good news!!

I'm not sure what special things we will do to raise this money for Zara, but I will have a chip-in for her at the top of the page through December. For each gift of $35 or more you will receive a beautiful Reece's Rainbow Christmas tree ornament.

Zhen and Theo's adoption grants made such a big difference in our ability to adopt them. I pray that Zara's family may be emboldened by her grant fund as well.

Trying one more time...Ralph has discovered...

Ralph has discovered Skype! And he has discovered his voice it seems. Check him out talking to his big brother who is away at college:




I'm pretty impressed with his emerging language skills. Or maybe I'm just excited to hear him trying to speak at all!

Theo sleeping

the perfect creepy video to share with you tonight. have you ever seen a child sleep like this?

Saturday, October 30, 2010

My apologies

My apologies to those of you who couldn't see the video I posted yesterday. I have had no luck uploading videos to blogger and I thought I had found a solution. Apparently I need to think of something else.

Wednesday, October 27, 2010

When you say ret@rd...

I've had the misfortune to hear the word "ret@rd" misused twice already this week.

The first time was at the grocery store checkout. Ralph and Zhen were sitting in the back of the cart. Theo was on top in his infant car seat. The groceries go under the cart in this scenario! :)

I bought ten of the same item. The checker tried to just scan it once and type in ten, but it didn't work. He said something like, "well, that didn't work. I'll just have to scan ten times like a ret@rd."

I was stunned. I'm always stunned.

And once again I disappointed myself by not knowing what to say. A simple "excuse me?" would have been fine, but my mush brain was locked up. I feel like I just let my boys down. How much longer before they are old enough to understand?

How much longer before they are old enough to understand that the term is the current catch-all phrase to indicate something stupid, annoying, incorrect, weird, or otherwise worthy of ridicule? If people with mental retardation were universally appreciated the r-word would not be used in this way. So don't tell me that when you say it that you are not talking about my children.

When you say it you score a direct hit on them. And they would just as soon give you a hug. *sigh*

Tuesday, October 26, 2010

I forget

Ralphie made me forget.

He made me forget who I was before. Before I had a child with Down Syndrome. Before I had a medically fragile child. I'm not who I was and I forget sometimes.

Think of a venn diagram. I don't always appreciate that most people are living in the circle that I inhabited before Ralphie came along. It's not a bad place, it's just that most people exist there. When he came along I found myself tossed into region of many intersecting circles.

It's been kind of cool finding community with new sets of people. There are the medical people, the Down Syndrome people, the adoption people, and now the growth hormone people and more. Learning all these news things has made life exciting!

I just forget that not everyone knows about Down Syndrome. Not everyone knows about adoption. I just forget.

So if there is something that I have glossed over that you don't get OR if you just simply have any questions at all, please leave it in the comments. OK, lurkers...you HAVE to ask me a little something. Alright?

Saturday, October 23, 2010

Meet Jill

Today some friends threw a shower for our new sons, Zhen and Theo. Isn't that sweet? There was a come-and-go brunch at my friend Nancy's lovely home.

Nancy is a talented photographer and very thoughtfully decorated with photos that she had taken of the boys. She also made photo prints with scripture verses printed on them and asked people to write a note on the back to encourage our family. They were simply beautiful.

When we arrived, my friend Jill was providing the entertainment. I met Jill 11 years ago. I became friends with her mother when I joined a quilting group at church. Jill has Down Syndrome and is 46 years old. We have the same birthday!

She loved holding Theo. When he got cranky she loved sitting next to him and looking at him while he sat in his car seat. We chatted about her upcoming trip to Branson, MO and Silver Dollar City. We talked about the Mannheim Steamroller concert, her favorite music group.

Thank you Lord that Jill's mother did not take the advice of the many doctors who recommended institutionalization for her. Look at just one of the many things that Jill has accomplished! I'm so proud to call her my friend.

video

Friday, October 22, 2010

Talking TV

If you are a mom that doesn't set her child in front of the TV from time to time, or even every single day, you may not want to read this! haha! Ralphie goes through phases in his entertainment preferences. For the longest time he wanted to watch Caillou on PBS. I looked forward to 11am each day because I knew that he would be happy and stay in one spot for half an hour!

That's priceless for a mom and really there are some great shows these days. FAR better than anything I had to watch while I was growing up. Anyone remember H.R. Pufnstuf? I rest my case.

A while ago my oldest son helped us to set up an instant movie service on a game system. Suddenly Ralphie found that he could watch his show whenever he liked. Mommy and daddy got sick of Caillou over time and tried to interest him in some other shows.

Since then he's gone through some clearly defined phases. Next came Blue's Clues. That didn't last too long. Next was Pingu. Very cute! A couple of months ago he started liking Shaun the Sheep. Ralph learned to point to the show that he wanted to watch. He learned to say the word "sheep" in his Ralphish sort of way.

It's so fun to watch him growing and learning new things. Just a week ago Ralph discovered the W*ggles. How our family made it this long without watching the Wiggles I'll never know. Anyhow, not only did Ralph go bananas for them, so did all the other kids, and me too!

Music is so good for children. And it's great for Ralph. For the first time ever I have found him playing along with a TV show. He knows all the actions for the songs at Sunday school and now he knows all the dances from the W*ggles show!

And get this...today I caught him singing!! This is HUGE! I have encouraged him to sing and to talk forever it seems. I guess I'm not as inspirational as the W*iggles. It is just exciting to be able to continue to hope that he will ever talk.

Wednesday, October 20, 2010

Clinic day!

Today was the dreaded Down Syndrome clinic day for my three boys, Ralph, Zhen and Theo. Dreaded because of the long lonely drive and the hours stuck in an exam room.

Everything turned out OK, just like I knew it would. I didn't fall asleep at the wheel! No poop disasters. No surprise fevers. I made it home in time to get the kids to church. Great!

The clinic is one-stop-shopping for our kids. But, they have never done three children at one appointment before. I talked them into doing this for me thinking that we could kill three birds with one stone. I didn't quite work out that way, though.

First thing, the clinic medical director came in to see us. She was gaga over Theodore and how much better he looked today than he did in August. Don't get me wrong, he's still an emaciated 16 pound four year old boy. So I asked her if I had shown up in August with him looking like this would she have admitted him to the hospital and she said no. Yay! He really does look great! And I guess you would know if I would take the time to load some photos, huh?

We spent lots of time on Theodore and Zhen and not so much on Ralph because I just don't have as many concerns for him right now. The folks at the clinic are BIG on services. They were pretty insistent that I start the boys on speech therapy, physical therapy and much, much more right away!!!

I disagreed. In my mind, learning to live and love in a family is the therapy that they need the most right now. If you've seen them a few times then you've most likely seen some big changes in them already. I'm not eager to send them back to an institutional setting at this time. So, we'll see. We'll talk about it later.

Thanks to the Down Syndrome Guild of Kansas City I found a friend to help me out with the boys for awhile this morning so that I could focus. It was a fellow adoptive mom who I have always wanted to meet! What a blessing!

Ralph and Zhen got some blood work done. All three boys were slated for neck x-rays today but the waiting room was a zoo and it was getting late and we missed lunch. We will go back for x-rays in December.

Yep, we are going back in December. It was just impossible to get everything done that we needed to do with three boys today. Theo needs some serious hearing tests and Ralph needs a hearing aid check. I think we will do separate appointments in the future if we are just going to have to come back anyway.

I came home with a stack of papers with therapy ideas for feeding and strengthening for Theo. I also got prescriptions for ankle braces for all three boys. I'm meeting with the Scottish Rite people about those next week. I'll let you know how it turns out.

Tuesday, October 19, 2010

Touched by DS

Judging by the fact that 90% (my approximation, could be higher) of the babies born with Down Syndrome in Eastern Europe are abandoned by their families at birth

and

judging by the fact that 90% (or more, actual statistics) of the babies diagnosed prenatally with Down Syndrome in the USA are aborted

you would think

that raising a child with Down Syndrome is so difficult and challenging that it would ruin your life, make you a social outcast, and suck all the joy out of life.

People who know...know better. How do you explain the waiting list to adopt babies born in the USA with Down Syndrome? How do you explain the hundreds of families who give up their life savings and humiliate themselves raising money to adopt children with Down Syndrome internationally?

The truth is that all children are challenging. When you decide to become a parent you have no idea what may be in store for you, but you take what you get. I have a couple of children so I know this: they will all break your heart in some way or another, special needs or not.

Here is another thing I'd like to share: I've met the most incredible people simply because we are connected by that extra chromosome that our children with Down Syndrome share. What a gift these people are to me and my family. We are far wealthier, in the good way, than we ever were before Down Syndrome touched our family.

Monday, October 18, 2010

Escape

Just sitting here flipping through my favorite blogs. I'd rather read them than write tonight.

Just for tonight I don't want to think about Down Syndrome. I don't want to think about pulmonary hypertension, seizure disorders, or hormone deficiencies. I can't let this stuff take over my life and drag me down like kudzu.

So, since I have to stay up until midnight to give PH meds anyway (can't totally escape, can I?), here are some random thoughts:

I often wonder what I should study when I go back to college. ha!

My former neighbor died two weeks ago. Great, friendly man. His name was Les Fast and he was a truck driver. I always got a kick out of that - Les Fast? ha!

Why do my children whine and cry so much at home? Why can't they be the same children that other people see when we are out in public?

I'm so proud of my son Chipper, who had a great freshman football season. I'm not a football fan and I've always said that my children could play any sport except football. It makes him happy. He's good at it. I hope that I'm through trying to shove my children into a mold of my own crafting.

I'm a really good driver. I don't think I get enough credit for that.

Yawwwwn. G'nite!

Sunday, October 17, 2010

Looking at the week ahead.

Here's my token photo of Ruby and Zhen at the piano this morning. Yes, he is glaring at me! ha!

No school tomorrow. Hmm. Wonder what we should do? Maybe take my boys to the barber college for haircuts! Too bad the zoo pass has expired. I think the weather is going to be nice!

I sure would love to go to Oklahoma to see my grandma. But, I'm not sure I can afford a trip like that this week. I'm not sure I can handle another day of driving with children!

I'm taking Ralph, Zhen and Theo to Kansas City on Wednesday for Down Syndrome clinic. This clinic is a brilliant offering by the children's hospital where a child, or children in my case, with Down Syndrome can be seen and discussed by a range of health professionals on one morning. Getting your docs and therapists on the same page is priceless. It's what I call one stop shopping. We get things done at the DS clinic! Speech and hearing, nutrition, routine blood tests, behavior, physical therapy and more.

Ralph is overdue for some thyroid screening and neck x-rays. He's also outgrown his ankle braces. Actually all three boys need braces. I can't wait to see Zhen walking, and I'll bet he'll start soon if he can have his ankles fully supported. In order for us to be on time for clinic on Wednesday I will have to leave the house at 4am.

Of course, daddy is traveling this week so the whole day will be complex and difficult. I need to find an adult to come with me, or meet me, to help me care for the boys. I'll need to focus on each specialist as they take turns examining them. I also need to find a sitter for Leroy to get him on the school bus at lunchtime. I don't want him to miss school again like he did last week.

I'd like to find a sitter for Ruby for the entire day so that I don't have to bring her with me. She's easy and fun to travel with, but I can do without another chubby babe to haul around the hospital, ya know?

Last week this was looking like a piece of cake, but all of a sudden I'm scared. I'm going to be in big trouble if I don't make concrete plans tomorrow. This is not the kind of trouble I like. :)

Thursday is the 21st. It marks exactly two months since I stepped off the plane with Theo and Zhen. Zhen will get to visit our friendly pediatric cardiologist and his awesome nurse practitioner. he supposedly has an open oval window. I think that is Eastern European medical lingo for a PFO. Well, he will have an echo and we will find out!

Saturday is looking like a crazy fun day. My amazing friend, Nancy, is throwing a "get acquainted with Zhen and Theo" brunch and shower that day. Nancy gave me courage to keep going last summer when our adoption fundraising was in the doldrums and I was having a difficult time recovering from surgery. She's a blessing to many people.

Saturday evening we are tentatively set to attend a barn party. There will be hot dog roasting and s'mores, too! Maybe a hay rack ride? I only hope that Zhen and Theo are not too overstimulated from partying in the morning to party in the evening.

Wow, the week hasn't even started and feels like it's half over. It's going to be a bumpy ride!

Friday, October 15, 2010

My boys are growing up.

Oh my! Ralph is really growing up! Can I just share that he woke up dry this morning? And that we ran to the potty? And that he went in the potty? Wahoo!!!

He is relishing the role of big brother. See how he adores his little/big brother Theo?

Ruby enjoys the role of big sister just as much. Here she is burying Theo in the animal bucket. Doesn't he look good?? shhhh! I'm almost afraid to say it, but I think he's growing, too!


Jordan wasn't a but suspicious about the helmet and bike pump he got for his birthday.

He was so surprised when we rolled this shiny green BIKE out of the laundry room!!

My sweet, green eyed boy is now nine! And that rhymes with "mine," which he still is!! Love this boy.

Thursday, October 14, 2010

So I really messed up my 31 for 21 challenge. Maybe I could double up for a few days and try to catch up? Nah. I'm over it.


We had such a busy and fun weekend with the Buddy Walk, the Maize Fall-fest and some out of town guests. Then I came down with a cold. I've had a headache for four days!


My amazing husband let me go to bed early all week AND my young children have discovered they can skype their new friends from Nebraska in the afternoon so my computer time has been extremely limited!!!


So much has been happening around here it's hard to keep up. Jordan had a birthday this week. Since on of my college boys was home, we celebrated early. I made a cake. It was...lame. But, it tasted good! That's what counts, right? I used to make fabulous cakes, but I ain't as good as I once was.


Ruby has been walking around saying "happy day." Oh my, is it cute! Every single thing she does is saturated in cuteness. I love the way she says "yuck" when I'm changing diapers. I'm gonna get it on video.

Here are some more Buddy Walk photos!! Thanks to my friends with clean camera lenses!

We were the very last walkers. In fact, people were behind us picking up signs!! haha!


We went ahead and picked up our boys' signs as we walked. We were the last ones after all. I love that Theo, but he really makes me look fat!

Playing in the backyard in the afternoon.

Zhen has a girlfriend!!! These two did a lot of snuggling that day!

Theo was a little overwhelmed. He settled down a little bit when I covered the stroller with a blanket.
Guess who is up to 16 pounds? Little Theo!! I've been hoping to see some meat on his bones, but I actually think he is getting taller. More photos are definitely in order.

Sunday, October 10, 2010

A tiny taste

Here is a tiny taste of our fun day at the Buddy Walk yesterday. It's Ralph doing some line dancing. Umm, right before he decided to split!! Yep, James and I did the whole, "OH dear! Where's Ralph?!?!"


Big and Little Toby are there, too. See?

I finally figured out that my camera lense is dirty and that's why all my pictures look like crap. When I get some friends to email me some decent photos, I'll post them here.

If you have any Buddy Walk photos of Ralph, Zhen or Theo let me know. OK?

Pretty please?

Friday, October 8, 2010

Too much fun...

Sorry, having too much fun with friends to blog tonight! Buddy walk is tomorrow and we have fellow Down Syndrome adoption friends staying with us. So very much to talk about and so many laughs!!

Thursday, October 7, 2010

Gettin' ready...

Getting ready for the Buddy Walk here at our house! It's going to be such a fun weekend I promise not to freak out about laundry or dishes not being done.

We are having out of town guests at our house and I'm so excited. Saturday night we'll have a group of 22 for dinner, including 5 little boys with Down Syndrome. The cuteness factor will be off the charts!! I can't wait to share photos of our crazy, fun event.

Tonight I'm baking cookies for the Buddy Walk and getting my Reece's Rainbow table display all ready to go. Set up is tomorrow so I won't have to worry about anything on Saturday morning.

If you are in the area, it is not too late to show up and walk with Ralphie, Zhen and Theodore. It's a great day of celebrating our children with Down Syndrome and the light they bring into our lives and our world.

Wednesday, October 6, 2010

Up Syndrome

I watched the documentary called Up Syndrome tonight.

Oh.My.Gosh!

It's funny. It's heartwarming.

Using donated digital tapes and a camera purchased with money earned from an eBay sale, indie filmmaker Duane Graves chronicles a year in the life of his charismatic childhood chum, Rene Moreno, who was born with Down Syndrome.

It's such an honest and beautiful look at a grown man with DS that it took my breath away. For instance Rene, the subject of the movie, says his friends are "handicapped" but he is not. And then he proceeds to do impressions of his "handicapped" friends.

The film also proves to me that our children can have meaningful, life long friendships with typical peers. I love the friendship between Rene and the filmmaker. It's so refreshing to see them cutting up, wrestling, playing pretend and making bad home movies together. Isn't that beautiful?

This movie reminds me that the struggles that I have now as parents of young children with Down Syndrome, will not be the same ones I will have when they are older. I don't often think about that. My boys' challenges will change, too. Sometimes it's hard to see past the challenges of the present day.

Thanks to Netflix, I'll be watching this one over again.

Tuesday, October 5, 2010

Angel??

Ralph loves my Ipod. He likes to swipe it. He will sneak around if he thinks I'm not paying attention and steal it!! He'll slip away and sit in front of his little mirror in the hallway and watch himself flip through animal flashcards. I know I should not be pleased, but I secretly am!

What a typical child he is!! What's this about children with Down Syndrome being perpetually innocent angels??

HUH?

Oh, he has his angelic moments. He still possesses a certain childlike innocence in most areas. But he is a sneaky little devil when he wants something!!! And I appreciate this. There is some comfort for this mom in the fact that he's more like other typical kids than he is different.

Here is Ralph signing "gorilla", his favorite animal, hands down.

Monday, October 4, 2010

Day 4

The light is all wrong in these photos, I know. I just like the way Ralphie is standing. He just looks like a tough little boy to me! He acts tough lately. A little naughty, too! I've caught him swiping toys and shoving his little sister. I wonder if this comes naturally or if he's learning more at school than I bargained for?


I'm so pleasantly surprised how much Ruby loves her new brothers. Zhen has not quite warmed up to her yet! He merely tolerates her and her tickles and kisses!

Ralph and Zhen have the same squishy feel to their bodies when you pick them up. This is one feature of Down Syndrome. Picking these boys up is difficult in the same way that it is difficult to pick up a bag of dog food when the stuff inside shifts and you find there is nothing left to hold. Their bodies turn into jello and they just slide through your hands.
Zhen would love to be tossed in the air like mommies and daddies do. It's just impossible. When I pick him up with my hands under his arms he slips down until I find that I'm holding his elbows!
Theo is a bit different. Maybe it has something to do with the fact that he has no fat, but this boy is easy to pick up. He is stiff enough to easily toss up in the air and he LOVES that! He also will stiffen his legs and stand up on your lap or the floor like a typical baby would do. Ralph and Zhen would never do this. Ralph always had rubber chicken legs.
All three boys have Down Syndrome, but I love the way they are so very unique.

Sunday, October 3, 2010

My school boys.

Here are my newest school boys. The go in the afternoons, so I get to enjoy their company all morning each day. Lucky me!


Getting ready to get on the bus. Don't they look like great friends as well as brothers?


According to Ralph's teacher, he is no longer considered a "runner." I took issue with that sort of label to begin with so I'm glad that he has outgrown it.
He is "with the program" at school now. No need to try to run out the front door when you know that you are going to music class and music class is great fun!!

Saturday, October 2, 2010

Ralph cracking me up!

Finally I have new photos to share with you! These aren't the greatest but I just had to share what I found Ralph doing yesterday.

He had grabbed a couple of diapers and a baby doll. hmmm.

Be still, baby. Bottoms up!


Good job Ralph!

Oops. It came off!

Now that Zhen and Theodore are a part of our family, Ralph isn't one of the babies anymore. Or so he thinks!


Friday, October 1, 2010

Day 1

Wow! It's October again!

This is totally my favorite month of the year. We get the best weather, get to break out the snuggly clothes, get to start some serious baking, and best of all...it's Down Syndrome Awarness month!!!

I love kids with Down Syndrome. LOVE. I would never have know that if not for Ralph. Since not all families are lucky enough to have a child with Down Syndrome, maybe a lot of people love them too and just don't know it yet. Get that?

Now that our adoption of Zhen and Theodore is complete, we have a total of three boys with Down Syndrome in the family. It's not always fun, but this is the life that I love. We are so blessed to witness them grow and become the men that God created them to be. I'll have lots to share. My goal is for you to fall in love with people with Down Syndrome too, even if you don't know any yet!