Friday, December 31, 2010

Happy New Year!

The family is playing Yatzee while I put these photos up. We are snacking on veggies and dip, crackers and sausage and such. Our New Year's Eve tradition. Tomorrow I get to meet my new daughter. More about that later...

2010 was an incredible year for our family. Really almost unbelievable. We are so very blessed beyond comprehension. More about that later...

Ralph, again, with his cars. He made a new parking lot in the kitchen yesterday.

Yesterday was one of those precious gifts from God...a 65 F day at the end of December. How wonderful to get outside and soak up a little sunshine and fresh air!!
We are in Kansas, after all, so the wind was blowing. Theo was none too pleased with the hat I made him wear!

Once he started swinging he forgot about being angry with me. Nothing but smiles!!

I had to sneak around the fort to get Ralph to look at the camera!

See? Not going to look at me!

When the tongue is out that far, he's having a great time!

Did I mention that Ralph is such a big boy now? Look at him go on the big boy swing!!

Got him!!

I needed a little help pushing Theo, so Ralph stepped up to the plate.

Look who I found playing together!

This is so rare! The boys like each other but normally play quite far apart. I'm sure before too long they will be best friends and partners in crime!

Wherever you are, I hope that you enjoy your own New Year's celebration. May 2011 be just as awesome!!!!!!

Thursday, December 30, 2010

Merry (late) Christmas!

What a week we have had! Hope your Christmas was healthier than ours!

Do you like our tree with no ornaments? Actually the ornaments were all up high, out of reach of little hands. Here are Thomas and Ralph gazing at the gifts from Santa while I finish up the morning diaper changes. Gotta get everyone squared away before they dig in!

Ruby was very cute with her new pony and her new tea set. She's a little lady.

Zhen opened his Tonka truck and disappeared into his bedroom to play!

Ralph loved his light up spinner that he found in his stocking.

Ralph has recently decided that he is through looking at the camera for me. Every time I ask him to say cheese he turns his back on me! Little turkey.

By the day after Christmas we were on the downhill slide. Lots of snotty, drippy noses. Lots of coughing. The next day sore throats, headaches and general misery. I've been to bed before 9pm all week long! Now that is sick!
A few doctor visits and a boatload of prescriptions later, we all seem to be on the upswing. Just in time for the new year. Today we enjoyed the gift of a 65 degree day. It's so fantastic at the end of December to be able to send the kids out to play and get some sunshine without heavy coats.
Yeah, I got some photos. I'll share them tomorrow!

Wednesday, December 22, 2010

Oh man! It's almost Christmas!!!

Ralph was so sweetly playing with his cars the other day. He was concentrating so hard that I was able to get some photos without him even noticing. Even with the flash!

Lining them up neatly.
Oooh! This one is special.

Let's park on the end.

Look what we got this week!! Ankle-foot braces for the three boys. Strangely enough, Ralph likes wearing his braces and even attempts to put them on by himself. Zhen was not so pleased with them. Not yet, anyway. He won't even stand or try to walk in them yet.
Theo...well...what do I say. I'm going to have to hunt for the right shoes for him to wear with these. I'm going to have to make myself put them on him each morning, I believe. Once he starts school next month it will make more sense. Aren't they soooooooo cute?!
I can't forget about Ruby. Here she's working on an ice cream cone with no assistance. I think I should have made "no assistance" her middle name. This girl is IN-dependent! She is also wearing one of Rose's shirts. How fun that they are already sharing clothes!
It wouldn't be Christmas without playing with some bead garland, would it?
Or, sporting eggnog mustaches!

My fantastic husband had to work very hard to get the lights working on our Christmas tree this year. God willing, we will finally get to decorate it tomorrow night!
Also, the kids want to go caroling. So we are making a little song sheet and practicing. I think we will take some cookies to the neighbors and treat them to a song. I'll let you know if that actually happens!! You know how the best laid plans sometimes go, right?

Tuesday, December 21, 2010

Don't Blink!

My life is so fun! There is always something happening and it can be exasperating when that something is mainly poop or snot or dishes or laundry. But, life around here is never dull. That is for sure!

Quick cute story for you today. This beautiful song was on the radio as I was driving to the store today. I took Ralph with me, because he's the main troublemaker among my 5 and unders. Poor Chipper was babysitting for me, so I thought I'd give him a break from dealing with Ralph. Besides, I like shopping with Ralph. He's a blast!

So, OK. Listen to the song. It's a great message, huh?

Well, I was listening to the song and driving when it really did happen in a blink! It happened in a flash! In the time it took to look back, Ralph was GONE!!

He had busted out of his carseat and was trying out all the different seats in the van. It's a big van. See what I mean? Never dull. :)

Friday, December 17, 2010

Hearts unfolding...

Ruby loves Theo. Almost as much as I do and that's saying a lot! She's like a little mommy to him even though he is almost 3 years older that she is.

Today I wrote HERE about the miracle of Theo learning to sit up. What a privilege for my whole family to witness Theo blossoming. As he is blooming our hearts are unfolding! It reminds me of this hymn:

Joyful, joyful, we adore thee,
God of glory, Lord of love;
hearts unfold like flowers before thee,
opening to the sun above.
Melt the clouds of sin and sadness;
drive the dark of doubt away.
Giver of immortal gladness,
fill us with the light of day!

Oh! The cuteness! I can hardly stand it!!

So Ralph's been at school lately and I haven't taken many photos of him. Now that all the kids are out for Winter (ha! It's Christmas, you can't fool me!) break I will make a point to snap some more memories.

This will be a wonderful Christmas!

Tuesday, December 14, 2010

Jill's Story

Merry Christmas to you dear readers! This is my little gift to you...a gift that I received when I became friends with Donna and her daughter Jill. Because of these friends, I was able to joyfully accept that my son Ralph was born with Down Syndrome. Enjoy!

Jill's story - written by her mother, Donna:

Jill was born in 1964 (back in the dark ages of mental retardation). She was not diagnosed with Down Syndrome until she was 3 months old. There were no tests back then to determine this condition, but we knew she had a developmental disability from birth. Parents just know these things sometimes, don't they?

On a visit to the the pediatrician at 3 months of age, the doctor picked up Jill under her arms. She slipped right through his hands. He said, "Yes, I believe she is retarded. Now, you will need to decide what to do with her. I must advise you that she will probably never be able to walk or talk. Most certainly not be able to read or write. I would advise you to put her in an institution."

I replied, "We have had her as part of our family for 3 months and have learned to love her and see potential in her. We will keep her in our home!"

Jill had a fairly normal life growing up. She just did things a little slower than most kids. She not only learned to walk and talk, but learned to read and write, ski, roller skate, dance, and play the piano. She rode the bus downtown to her job at a bank for several years.

She began taking piano lessons at age 16. We realized the talent she had when she sat at the piano and played melodies with her right hand. It was time for piano lessons! I asked a former student of my husband (who was a music teacher) if she knew of a college student who needed the money and would be willing to take Jill as a piano student. To my surprise she said, "I would!" Jill took lessons for several years, learned to read music and even learned to memorize everything she played.

To this day she practices a half hour every day except Sunday. She has had the opportunity to play all over the state, for many schools, at weddings and parties and at the state fair. We have always had the philosophy that Jill can do anything anyone else can do - it just might take her a little longer. I'm so glad we decided to keep her out of an institution!

***I'll be passing along any kind comments that you have to share with Donna and Jill.***

Saturday, December 11, 2010

It's early...*yawn*

I've forgotten how much I like getting up early in the morning. I'm normally up pretty late to give meds to Ralph so mornings have not been my friend for a very long time.

But I used to get up early. As a child I would slip out of bed a 5:30-ish and join my grandma and grandpa in the kitchen. They would be drinking coffee and reading the paper and it felt special just to be hanging out with them. Grandma would normally make me some bacon and toast and occasionally I'd get a cup of sweet milky coffee! What a treat!

As a teenager I worked at our family's restaurant. We served breakfast and lunch and then closed at 3pm, so I almost always had to be there before 6am. I remember the lonely drive across town. The traffic lights that turn red when you approach, even though no one else is on the road!

I just dropped a child off at school for a wrestling tournament and experienced that lonely early morning drive again. It took be back. I could have easily gone back to bed, but I thought I would get a jump start on my day. As a mother of many, it is a good thing to be up and ready before the children wake. It puts me more in control of the day. I'm ready for the little heathens!!

The Down Syndrome Society Christmas party is today. All the kids are very excited and hope to see some old friends. I was sure to charge the camera so it doesn't die on me like it did last Sunday at church when the little kids were singing. Speaking of cameras...look at some of the photos I captured last week:

Theo gave peas a chance.

He LOVED them!

Thomas had a little mishap with a pixie stix.

My goodness he is looking grown up-ish! Except for the blue sugar on his face and shirt!

And speaking of grown up...Ralph and his awesome cardio nurse! She ended up having to take his blood pressure the old fashioned way when he couldn't quite be still enough for the machine.

Guess who loves having a new brother!

They like each other a lot! This tickle-fest went on for quite awhile...

...until someone got bitten. Yes, Zhen has some teeth.

Here is Ruby. All alone in the van with mommy. Brother's are all at school and she's chillin'. This girl...what can I say. She deserves a blog post all her own. I'll get right on that!

Coming soon...neat Christmas surprises and projects.

Wednesday, December 8, 2010

Ralph is a rock star!!

Ralph is a rock star! Well, he rocks my world anyway.

He sang some Christmas songs in church last Sunday with the other children from 3 years - Kindergarten. As I walked up the stairs to the stage with him he grabbed a microphone with both hands like he knew exactly what he was doing. On the way to stand on the risers he spied a guitar and also a bass. It was all I could do to keep him in his spot on the back row and focused on the songs. He's really a natural performer.

Here Ralph is dancing along with the Wiggles.

Flying on mommy's feet.
Ralph is also winning the battle against pulmonary hypertension. He was such a big boy at his cardiology appointment this week. He let the nurse take his oxygen levels and he even let her get all the leads on for his EKG! Not too long ago it was a struggle to get him to be still enough to get good readings. He's really growing up!

He was also a good boy for his heart echo. His right heart size looks good. His implanted device looks good too. His pulmonary pressures were the lowest ever. Sooooooo....(drum roll please).....

We are officially weaning his pulmonary hypertension meds!!! I have waited for 3 1/2 years to say! It's very scary for me to think that in 10 weeks he will be completely off all of his medications. With everything that he has been through I'm just feeling so blessed that he's this healthy today.

Psalm 103:1-5

Praise the LORD, my soul;
all my inmost being, praise his holy name.
Praise the LORD, my soul,
and forget not all his benefits—
who forgives all your sins
and heals all your diseases,
who redeems your life from the pit
and crowns you with love and compassion,
who satisfies your desires with good things
so that your youth is renewed like the eagle’s.

Friday, December 3, 2010

Nothing else...

Nothing else that I have to share with you today is more important that this.

Thursday, December 2, 2010

An oldie, but a goodie. Enjoy!

Since termination is such a common option for children with Down syndrome, why aren't typical developing children diagnosed like this?

How to give parents a pre-natal diagnosis:

I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call ... Normal. Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.

If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.

Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.

I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.

After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.

But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.

They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often
unhappy and short and over half end in divorce.

Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrasment.

Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.

I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure.

Termination is an option.

Shall I book an appointment?

..... from a parent who received a diagnosis rather like this.

Bob Lincoln, author

Monday, November 29, 2010

Pie Warrior

Zara. Most certainly not her real name.

No photo. No face. No grant.

An orphan with no name and no face and no money.

I had some grand plans to raise big money for her adoption fund when I signed up to be her Reece's Rainbow Christmas Warrior. But, life with our two newly adopted boys has gotten in the way. It's the story of my life...over promise and under deliver.

Not much I can do about "life" right now. I mean, we still are trying to get doctor appointments for Theo and Zhen. But, there are a few things I can do.

When we were preparing to adopt I made enchiladas for donation until my hands turned orange. I was really happy to make something instead of just asking for gifts. I was happy to use good quality ingredients and provide something that people would enjoy.

Over the Thanksgiving weekend I had the opportunity to hone my pie making skills. I have not used shortening or margarine for nearly 10 years. Yes, we quit hydrogenated oils long before it was cool, so my pie crust was made with butter and unbleached flour. The pies were so delicious, the crust so crispy that I was compelled to make more pies on Saturday. I was fighting off the children just so the pies could cool off!

So...even though Thanksgiving is over and done for the year...'tis still the season! I'll be making high quality pumpkin and pecan pies for local people for the next month. If you are in the Wichita area and you'd like to give one a try leave me a little comment and I'll get right back to you! I'm covering the cost of the ingredients and donating my time so that I can donate 100% of my proceeds to Zara's Angel Tree fund.

Enjoy a creamy pumpkin or crispy sweet pecan pie for a donation of $15. I'll even deliver! Save yourself a few headaches and let me make the pies for your holiday events. And together maybe we can help Zara have a Merry Christmas next year!

Sunday, November 28, 2010

When will I ever learn...?

When will I ever take my camera
To mark the end of our holiday weekend we took the whole family out for, what else, pizza! We were missing our oldest, who was not able to make it home, but everyone else was there tonight. As I grabbed my purse off the kitchen island I saw the camera...thought for a split second...and then decided to leave it at home. *sigh*

Theo enjoyed watching everyone else eat real food and he got a bottle of vanilla formula. Blech. Zhen ate some pasta, jello salad, and some diced ham off of the salad bar. Rose ate too much dessert pizza. Jordan was the last one done eating as usual!

Leroy ate very sensibly, like always. When we first sat down he spied a Christmas tree next to the exit door. Next to the tree was a fancy chair. He asked me when Santa would be there! I looked around and saw a sign near the kitchen. Together we walked across the room to read the sign. 15 minutes.

Santa was coming at 6pm! Only 15 minutes!!

The pizza joint was empty when we arrived, but started to fill up soon after. By 6pm the place was packed. When Santa burst into the room with a hearty ho-ho-ho, the whole place went nuts. He made his way to his chair in front, shaking the hands of children as he went. Ralph was so excited he was about to burst. He was jabbering and waving. Jabbering some more!

I was so happy I nearly cried! Watching Ralphie have fun is different than watching my other children and more special than just about anything I can think of. It makes all of the around-the-clock night breathing treatments, oxygen tank changes, and midnight meds worth the while. All the heartache was not for nothing. It seems to have made life more exciting and colorful now.

Oh, and today I'm thankful for cell phone cameras. :)

Ruby waiting her turn.

No fear! Ralph couldn't wait to sit on Santa's lap. He kept waving and jabbering to Santa from across the room until we gave up on him finishing his dinner and took him over to see the big guy.

Ruby, also fearless, signing "more." More candy, that is!

Leroy couldn't think of anything to ask for!

Fearless is not a word used to describe Zhen. He wasn't going to have anything to do with Santa.

On our way out the door. One last snuggle with Santa!

I just had to get Theo out of his seat to meet the jolly elf. He wasn't all that impressed. I was just pretty relieved that he didn't throw up on Santa's white gloves!

Merry Christmas dear friends!!

Saturday, November 27, 2010

We had a fun holiday week!

Guess who?
Theo loves to rip the handle off the ice cream bucket (empty and washed, btw) and put his head inside. He had a ball rolling around on the floor like this!!

Ruby put Zhen in the rolling toy bucket and tried to pull him around. Yes, she PUT him in there. She thinks she is the mommy. She just loves that she has someone new to boss around!

Well, the little mommy didn't have the power to pull her tubby big brother so she tried to push!
That girl is so willful lately. After baths tonight we had a little bedtime snack...pie! She wouldn't let me feed her and I wasn't going to let her get pumpkin pie all over her clean jammies and in her clean hair. So she decided not to eat it. heh.

Thursday was a nice relaxing day. Dinner was a breeze to prepare thanks in part to the fully cooked smoked turkey we received from James company. The pies were done the day before so everything fell into place with little effort.
After I put the turkey in the oven to warm up I put a different turkey into the kitchen sink for a bath. It was a very cold day and far too chilly in my bathroom for me to put him in the tub. He just splashed like crazy. I mean crazy!

Here's our spread. The big pot is full of mashed potatoes. I have never made enough potatoes until this year. I still have a little left over in the fridge. Probably since Wes couldn't make it home this year. We missed him.

Ralph decided to do a little dancing later on that evening. His latest thing is the conga line. He will walk up behind you and grab your hips and start pushing. This could easily be mistaken for meanness, but no. He just wants to dance with you!!
I hope you had a happy Thanksgiving weekend! Lots to be thankful for this year, as always!!