5 year ago....

We were preparing for Sawyer's birth. We knew he likely had Down Syndrome. We researched and reached out to folks and tried to learn what we could. (In fact, while in the hospital all the social workers/doctors/nurses would come up and try to tell us about something related to Down Syndrome. We'd say, "yes we've heard of that". They soon learned we were their worst nightmare. We were internet savvy and would ask questions to which they had no answer. But I digress) We also knew he had some sort of heart defect. About fifty percent of babies born with Down Syndrome have a heart defect. What we didn't know was he would be the 1 in a million baby to have Pulmonary Arterial Hypertension. What we didn't know was there was no cure for PAH. What we didn't know was how few doctors wanted to deal with us after such a diagnosis.

What THEY did not know was our Sawyer was a fighter! He was too stubborn to believe their prognosis. He comes by that honestly because we, too, are stubborn and refused to follow the status quo. If the doctors didn't have a known cure, we'd follow our instincts and fight right along beside Sawyer. Sawyer slowly began to convert the doctors. They slowly began to believe he would get better because indeed, he was getting better. In the end, we had 3 very good cardiologist and 1 wonderful surgeon(along with hundreds of folks sending up prayers on his behalf) who stood beside us when the rest of their doctors were still doubtful. They operated to correct his heart defect about 10 months after his birth. Immediately, his PAH went to normal. Still there were doubters. Our 'team' refused to listen to the naysayers. Today, this is the result of their dedication. He's still stubborn. He is also very funny and smart and annoying (according to Turner) and loving and engaging. He's all any mommy and daddy could ever want. We are blessed beyond measure because he is ours. We gave him drums for his birthday. We decided to give them to him early so he'd have all weekend to play them.

(Dad, this is a video. You may not can play it)

Big Words

My kids use big words. I guess we must use big words a lot around here, not sure.

Example 1:

I'm in the kitchen and I hear the typical (aka normal, all day every day) yelling. Not paying much attention until Turner comes to the door, whining. (I can NOT stand whining. ) So I tell him in my ever so understanding and loving motherly way, "Go back and watch tv, Mommy is getting supper ready". He's holding the top of his head and yells, " 'awyer 'it me" (translation, SAWYER HIT ME) I say, "It'll be okay" To which he responds, " 'awyer is ANNOYING me" Yep, he can't say Sawyer, nor can he say Hit. He can, however, say Annoying.

More Examples:

I take Judson to the doctor yesterday for his checkup. (on a side note, should he continue on his current growth track, he will be between 5'10" and 6' by the time he's 21. He will weigh about 140 pounds!) While waiting for the doctor, he continues to worry that shots are coming. So the nurse is asking him questions. He is getting pretty annoyed at her for the types of questions. (Do you play sports? Music lessons? etc) She asks about his sleeping patterns: What time do you go to bed? J: Well, my bedtime is 9pm. Actually, it's about 9:10 when I get to bed. Nurse: What time do you wake up? J: Actually, it's pretty RANDOM. Somewhere between 7:15 and 8:10.

The doctor comes in and says immediately, "There will be no shots today" Ahhhhh, life can continue as normal. So he and Doc T are talking. Doc T: So are you and your sister still fighting? J: Actually (a word he uses often), we try to be ALLIES more. Doc T turns around and looks at me. I just shrug my shoulders and tell him, J is learning to play Axis and Allies with his dad. J continues: We're probably allies more like 65% of the time, maybe 66%.

Change of Plans

This Peacock ate peanuts out of Judson's hand. The bird was just wandering around the parking lot being your basic mooch. A rabbit was also munching crackers right out of our hands.

So THE PLAN was to go HERE so the kids(and Moms) could visit with old friends and get to know some new friends. The REALITY was soon after I pulled into the parking lot, at least FOURTEEN school buses pulled in behind me. So while we were blocked in by the buses, we fed a peacock and a rabbit and came up with ANOTHER PLAN. In the end, while we didn't get to be outside with the animals, we did get to meet our new friends and visit with our old friends. We just had to do it a McDonalds. Since I don't post pics of other folks kids very often, I'll just post a pic of my kids at Plan B Place. Click on the picture to make it bigger.

In the end, we like our new friends and hope to go to feed the animals another time. We WILL call ahead of time to make sure there won't be fourteen buses!

O.T.

Don't close your eyes....

Borrowed this from downsyn.com

The Creed of Babies with Down Syndrome

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Buddy Walk 2009

The line behind us

The line ahead of us.

Buddy Walk was a huge success. There were over 2,000 people! I do not know the grand total of monies raised as donations can continue through the end of October.

Nana and Pop came with us. Pop was a good sport. He wasn't expecting so many people and was not exactly comfortable with the sheer numbers. He hung in there though. I don't think he realized how many people are touched by Down Syndrome.

I think the thing that struck me was EVERYONE had a smile on their face. We (as in families touched by Down Syndrome) don't think of it as a sad thing. These kids are amazing and make so many people happy. So the next time you see someone with Down Syndrome, do not feel sad. Do not pity. Be happy, we are.

It was a joyous occasion!Nana and Pop and the Oooties!

The Fam!
Nothing like a lot of wind and bright sunshine to get that good squint!

The Twins!
So, you might say to yourself, why in the middle of Georgia would you dress these kids in ORANGE. I think that is obvious. What is not so obvious is that child safety 'specialist' will tell you if you are going to be in a big crowd where the possibility exists that your child could wander away(and not be able to tell someone their name, etc), dress them in something that will set them apart. They were the only 2 in Tennessee orange today.

Preparing for Buddy Walk

Should have requested bigger t-shirts to go over all the layers of clothing. It's our first CHILLY Buddy Walk. In years past, we've worn shorts and sweated to the oldies the DJ played. This year, I suspect we will not be sweating. I also bet a lot more adults will be dancing to get warm. Hopefully, by 1pm when it starts it will be in the low 50's which would be nice...accept... It's supposed to be windy. That should really freak out the sinuses! The sun is supposed to shine. That's a good thing this year.

We're excited because this year, Nana and Pop are joining us. So stay tuned for pictures!

A Feel Good Story

Sometimes we think things are obvious. Sometimes it takes someone who's been there, done that to open our eyes. This teenager has opened the eyes of many.

Buddy Walk

Hooray, Buddy Walk is this weekend. Cannot wait. Supposed to be sunny and cool. Nana and Pop are going to join us. It's going to be a great weekend. Stay tuned for pictures and reports. Thanks to everyone who has donated to Team Stricklin. We made over $800. The local chapter has raised over $130K. There is still time to donate if you'd like. Just click HERE.

Best Part

The best part of decorating for Halloween (and any holiday) is the reaction of each of the children. They love it.

Look What I Can Do....Almost

Notice, shirt on backwards and both legs in one hole.

With a little help from Mom.

He's come a LONG way from the 'learned helplessness' stage he was in just months ago!

DS Awareness and Adoption

We are sponsoring a little guy on Reece's Rainbow this Christmas. Meaning, that we are trying to raise $1000 for his adoption fund. Why? Because....Just because.

1. Because we are passionate about adoption.
2. Because no child should live out their life without a mom or dad
3. Because this little guy has Down Syndrome and needs someone to be his voice
4. Because we want to do everything we can to raise awareness for Down Syndrome and Adoption
5. Because that is what you do when you are passionate
6. Because there is someone out there looking for a little 2 year old boy to adopt IF they only had the money.

So, stay tuned for more. Our little guy will be on Reece's Rainbow Christmas Angel page starting in November. His name is Art. Maybe you can donate to Art's adoption fund or maybe there will be another angel that catches your eye. Your donations may help some family step forward and commit to adopting one of these children. There is a waiting list in the US for families who want to adopt a child with Down Syndrome. There are many families who would adopt internationally if they had the money to pay the adoption costs. Typical costs for international adoptions can run from $20K to $40k. That's a lot of money to come up with in a lump sum.

IEP (Individualized Education Plan)

We got Sawyer's IEP done yesterday. Pretty painless 2 hour process. I'm happy with the things we have on his IEP for this year. Not looking forward to the Spring when we have to come up with a new one to transition him to kindergarten.

Pride in Ownership

twenty-six school days to create
some good days
some not so good days
all well worth it
look at that smile
we will do it again

Break from DS Awareness

We just call him "Corporal CLINGER"

That is a sparring glove he has on.
(It does coordinate with the rosette on the waist band of the dress)I fully intend to use these for blackmail purposes later on. His sister dresses him up just about every day. The other two have pretty much told her NO but alas, Little T still plays along. You'll hear him playing with his race cars, making all the little car sounds. You'll go look and he's wearing a dress with a car in each hand. It's all good!

DS Awareness-Common Misconception

MYTH: Having a child with Down syndrome takes away from other children.

FACT: We try very to schedule time for each child to have 'their time'. Right now, Judson is probably the one who gets the most 'me' time, simply due to his age and what is available. This month alone Judson has 4 Tiger Cub outings plus his regular 'stuffs'.

This week we have school for Sawyer, Tiger Cubs for Judson, Doctor's appts, Karate for everyone, IEP meeting at Sawyer's School. (Lucky us, everyone gets to go) Sawyer will have OT on Tuesday.

We're hoping to squeeze in a family trip to the Botanical Garden in between rains. Plus the incidental trips to the grocery store, etc. And hopefully try to get some outside play time.

We really aren't different than any other family with four kids who are beginning to grow up and want to do things. It's busy and hectic and stressful sometimes and full of laughter and noise and fun. Tonight we all watched the Handy Manny special on Disney. It was the quietest the kids had been all day.

I hope that my children will learn patience (with themselves and others) and compassion and humility and love. I think Sawyer will help teach them because he is the best model I know for compassion and humility and love. Patience????? Well, we're still working on that.

This is one of my favorite pics of the boys. Sawyer LOVES Judson. Tonight he was wrestling with Judson and for the most part, Judson did well wrestling back. The one thing that Sawyer wants most is to be considered a 'big boy' just like Judson.

DS Awareness-School Report

Sawyer's Friday report (they send home a little report everyday):

"Sawyer enjoyed field day activities today. Everyone enjoyed Sawyer's smile."

Imagination (Down Syndrome Awareness)

Sawyer has a wonderful imagination. He loves to dress up and play imaginary games. In this video, he's a super hero whose cape is not working. (If you watch Imagination Movers you'll remember this) He loves the show. So, don't pay attention to the disaster in the room as I'm trying to get winter clothes and summer clothes swapped. (amongst other things in the room that has become an 'everything' room) Just pay attention to Sawyer and his wonderful imagination.

Down Syndrome Awareness Month

October is DS Awareness month. What do you know about DS? Did you know there are 3 types? Trisomy 21 is the most common. It is where all cells have an extra set of the 21 chromosome. This is the type that Sawyer has. There is also Mosaic where some cells have an extra set of the 21st chromosome but not all. There is also Translocation. This is where the extra set of the 21st chromosome attaches to a different chromosome.

Did you know that people with Down Syndrome are more like you and me than they are different? They laugh and cry. They get angry. They get happy. They have things they are good at. They have things they are not so good at. Sawyer, for instance, is by far the most social child I have. He easily meets people. He'll ask them their name and introduce himself and others around him. Everyone at his school knows him. I know this because I'm constantly out in public and someone will say, "Hey Sawyer". They call him the "Mayor of Mountain Park" (his school). He is the most musically inclined of all my kids. Loves music and playing the drums. He is not the most athletic. This is not because he doesn't like sports because he really does. He probably understands more about sports than my other children. The problem is his body does not always work as well as his sister Ansley, who is probably the most athletic of my 4 children. Sawyer is extremely good at memorizing. (shows, songs, ABC's, numbers) He is very stubborn about displaying his talent for memorizing. He and Ansley are rivals as to who is the most stubborn.

So there is your primer for Down Syndrome. As the month goes by, I'll try to post stories about Sawyer. Maybe I'll post pictures if he cooperates. Here is one of him with his siblings. He loves them (in that brotherly annoying way) and they love him. (as only siblings can)