Believing in Miracles

MORGAN

2010-12-27T23:16:00.000-06:00

Labor was very fast.

Morgan Jean Hust arrived 15 days before her due date on October 15, 2010 at 3:59 a.m. weighing 6 pounds, 11 ounces and 21 inches long.

Things were going well for the first month and a half.

But now we have been in the hospital for 16 days, had one surgery and awaiting 2 more.

Click here to see Ms. Morgan's newborn pics.

Click here for her CaringBridge site. Prayers are greatly appreciated!

Win a $10,000 Room Makeover

2010-10-01T20:37:00.000-05:00

Follow this link and enter to win a $10,000 Room Makeover and play EVERYDAY for your chance to win a $50 Gift Certificate from PartyLite!

Enter consultant code X94367

Good Luck!

Progress

2010-09-24T15:33:00.000-05:00

I am now 34 weeks along in my pregnancy. I was having contractions all day all day yesterday, none today though. I had my routine doctor appointment today and asked her to check. I am already dilated 2 cm and 50-75% effaced. I am also measuring big at 37 weeks so if she were to wait until the full 40 weeks she would be born big like Mitchell (8 lbs. 7oz.). From the last ultrasound she looked chunky and you could see that she has a lot of hair! I am very excited and can't wait to meet her!

Baby Bump

2010-09-08T21:32:00.000-05:00

I am currently reading a friend's blog about their journey through IVF and infertility. I am sitting here with tears in my eyes as it reminds me of the emotional roller coaster that we went through during this process.

Therefore, I feel it necessary to again thank God again for my precious babies including the little one who is constantly moving in my belly. I do not take being pregnant for granted. I know all too well how much of an amazing gift it is.

4K Update

2010-09-08T19:45:00.000-05:00

When Cameron got off the bus today and I asked him how school was, he said "no throw toys".

So when his teacher called a few minutes later I wasn't surprised.

Apparently, during his session with the speech therapist today he continuously threw his toys and thought it was very funny. This has always been Cameron's way of testing the water (it is a new speech therapist). A time out was given, however that doesn't really phase him - she said he was just kind of hanging out. We talked about some possible solutions and will keep in contact about it.

She also had good news - he went potty at school! Also, this evening he went up to Dave and said he had to go potty and went #2 on the potty! Cameron has been doing very well with potty training. When there is a little more consistency, especially with him telling us he has to go, I will put him in underwear. I do have high hopes that he will be completely trained before the baby comes.

He also did very well with helping during the hello song and other scheduled activities.

I am very proud of him and, despite throwing his toys today, know he is going to do very well in his 4K classroom this year!

First Day of 4K

2010-09-01T12:47:00.000-05:00

Opinions Please

2010-08-31T14:22:00.000-05:00

Cameron starts 4K tomorrow at the same elementary school where he was in EC. He is going to be fully included in a "typical" classroom and pulled out for therapies.

I just got a message from Cameron's EC teacher who will be helping out in his classroom this year asking me if I wanted her to talk to the classroom about what makes Cameron "special". She indicated that last year they had a little girl who was visually impaired and a little boy who was significally autistic. Telling the classroom about their differences helped everyone understand and help out if necessary. However, other than being very tiny and his speech a little delayed Cameron is pretty typical.

Although I want the other students to understand I also don't want him to be thought of as different (not yet anyway). The teacher said this in her message that she didn't think it was necessary but wanted to get my opinion.

I would love to get everyone's opinions on this.

Play Doh Fun!

2010-08-31T14:19:00.002-05:00

Adjustment Period

2010-08-31T08:56:00.000-05:00

I am slowly adjusting to having another child with an extra chromosome. I am actually glad that I did the amnio and have a prenatal diagnosis so that I can adjust to this now and enjoy my princess when she arrives.

I am also becoming excited about having another baby. This will be our last baby and I will be taking the advice I was given with my first one - to enjoy every minute because they grow up so fast. However, our little ones with the extra chromosomes do everything on their time table and usually a little slower than our "typical" children. I really do have the best of both worlds! I see how fast Mitchell is growing up and although he is passing Cameron up with regard to certain things, it reminds me to slow down and not be in such a hurry.

Can someone please remind me how to post pics (do I upload them to Photobucket?)

Concern

2010-07-27T14:28:00.000-05:00

Cameron was my first child and I had always planned on nursing. However, with him having Down syndrome and a heart defect that didn't work out so well so I pumped. I HATED every minute of it but knew that I was providing my baby with the best milk possible.

Mitchell was my second child and was born healthy and "typical". I nursed him, only pumping while away at work. I still HATED pumping.

Having the third baby and no longer working I was SOOO looking forward to exclusively nursing her. BUT she, like Cameron, has Down syndrome and a heart defect.

Has anyone successfully nursed a newborn with Down syndrome AND a severe heart defect. I say severe because she WILL require surgery, it's not something that is going to fix itself.

I just remember with Cameron, it was a HUGE challenge to get him to even wake up to take a bottle. Then keeping him awake long enough to finish was challenging also. We had to set our alarm clock every two hours throughout the night to wake him up (taking off all his clothes and sometimes even having to put a little cool water on him to wake him up enough to eat). Repeating the process when he fell asleep before finishing.

Any success stories and/or tips would be GREATLY appreciated.

$50 Gift Certificate Drawing

2010-07-24T09:41:00.000-05:00

I will be doing a drawing for a $50 PartyLite gift certificate for every person who places an order on my website by July 31 at 11:00 p.m. CST

www.partylite.biz/terrihust

Another Update

2010-07-19T11:40:00.000-05:00

I had the amnio and she has T21. I know that some parents would embrace this howevever I am devastated. I will grieve and move on and she will be loved and wonderful but right now I'm broken. I keep wondering why can so many people have so many healthy "typical" children and not even appreciate it and here I have two children with Down syndrome. (BTW, we are not carriers).

Brief Update

2010-07-15T21:06:00.000-05:00

It has been confirmed that the baby does have an AV Canal (AVSD) which is the same heart defect that Cameron had; and she will need surgery likely at 3 months (same as Cameron).

I don't know whether she has T21 or any other genetic abnormalities as I haven't done an amnio (and don't know that I will).

I'm trying to enjoy my pregnancy and not think about the "what ifs".

On a brighter note, she moves around alot and the nursery is painted! Well, sort of. The bottom is brown and the top is pink BUT I hate the pink (reminds me of Pepto Bismol) so hubby will likely be redoing the pink part to make it a little lighter.

The boys are enjoying talking to and kissing my belly. Mitchell has a cabbage patch doll (that was Dave's) that he takes with him everywhere and says is his baby sister. It's too cute.

Delivering the bad news

2010-06-19T08:23:00.000-05:00

When I made the appointment a few months ahead of time I requested that it be my doctor I see after the ultrasound. I hadn't seen him yet during this pregnancy and wanted him to be the one to "deliver the bad news".

I say "deliver the bad news" because I think being a parent of a child with special needs, you are always waiting for the other shoe to drop. Also, things have never been routine or easy for us. Let's just say the Lord has given us many, many challenges that most people don't have to face. We, of course, overcome them. That doesn't make these challenges any easier when we are faced with them. It also doesn't make them any easier to understand.

After Cameron's birth I looked at him and assumed my precious baby boy was healthy (other than the heart defect they mentioned to me at an 8 month ultrasound). Afterall, no one had said anything differently and this was my first baby so I didn't have any expectations.

Although I love surprises, which is why we didn't find out the sex of the baby prenatally, the surprise that came two hours after Cameron's birth wasn't one I enjoyed as much as hearing the words "it's a boy".

We learned two hours after Cameron's birth that he lkely had Down syndrome. We were shocked and saddened.

On to my second pregnancy. After the 20 week ultrasound we were told my doctor had been called out for a delivery, but we could wait. I told Dave to go back to work instead of waiting. I eventually gave up waiting and said I would see whatever doctor was available.

In the room a doctor that I had never met before came in smelling like smoke. He told me in a very routine fashion that they had seen a "cystic hygroma" during the ultrasound, he wanted me to go to a perinatologist, and sent me on my way. My mind was spinning as I had no idea what this meant. I went back to work and googled it. This is where the shock and sadness came.

After weekly ultrasounds at the perinatologists office, a lot of agony, and countless tears, I eventually gave it all up to God and had faith. Typing this is easy, doing it was not. I made the right choice, my precious baby (another boy) was miraculously born completely healthy.

Here we are again. The 20 week ultrasound. This time we would find out the sex of the baby, we were hoping for a girl, but more importantly praying that the baby was healthy.

The good news - IT'S A GIRL!

After the ultrasound the sonographer went to see if my doctor was ready to see me. He was called out for a delivery, but we could wait (dejavu). I noticed that there was a lot of concentration on the baby's heart and wanted to wait to see my doctor to "deliver the bad news".

We waited an hour and a half. I finally gave in and said I would see another doctor.

We were told the doctor would be right in. We waited another 20 minutes. I told Dave that nobody wants to come in and "deliver the bad news".

The bad news - the baby has bilateral chorid plexus cysts, a VSD (ventricular septal defect), and EFLV (elevated flow left ventrical).

These things alone would likely mean nothing but together it is likely a genetic defect, more likely Trisomy 18 or 21.

More shock and saddness.

Discipline Help

2010-06-07T12:04:00.000-05:00

I totally failed on my weak attempt to start writing in my blog again, sorry. I just don't know how you moms of little ones have the time. My boys don't let me leave their sight to do anything (not even go to the bathroom). Oh well.

I am writing today because I need some advice and know that you all will be able to help.

Cameron (well both boys actually) have recently been upgraded from their cribs to toddler beds. The transition went amazingly well. The "problem" is Cameron is waking up earlier than he used to. He still gets 10 hours of sleep at night and takes a 2 hour nap daily.

However, he has had bad reports coming home from school lately. The only thing that I can think of is that he is tired and therefore, acting out. He thinks doing things that are naughty are quite funny.

I must admit that I have been slacking a little bit in my consistent discipline with him as well and am hoping to be a little more routine with it.

My question is this, how do those of you who have 3 or 4 year olds with Down syndrome discipline? Does it work? I most often feel that Cameron doesn't get it and sometimes think, why bother trying.

Sneak Peak

2010-03-12T16:59:00.000-06:00

If there is anyone out there who is still interested in reading my blog, I am sorry it's been so long.

Below are a list of things that have happened since the last time I blogged and I may (or may not) blog about them in the near future.

Cameron started early childhood
We sold our house, moved and bought a new house
My mother-in-law was diagnosed with pancreatic cancer
I became a stay-at-home mom
We took two family trips to the Dells
Mitchell is talking up a storm
My father passed away very suddenly
Cameron is working hard on potty training

That's all that I can think of right now (as if that's not enough).

I really plan on blogging more often and am hoping to get caught up with everyone else too.

Miracle Marathon

2009-05-14T10:48:00.001-05:00

Please go listen to WKLH

For the past 11 years, 96.5 WKLH morning show hosts Dave and Carole have teamed up with Children's Hospital of Wisconsin to bring listeners miraculous and heartwarming stories from the lives of patients and their families treated at Children's Hospital through a 60-hour radiothon. To date, the Dave & Carole Miracle Marathon has raised more than $11 million to support various programs at Children's Hospital.

Happy Mother's Day

2009-05-10T13:25:00.000-05:00

25 things our Mothers taught us

1. Our mothers taught us TO APPRECIATE A JOB WELL DONE .
"If you're going to kill each other, do it outside. I just finished cleaning."

2. Our mothers taught us RELIGION.
"You better pray that will come out of the carpet."

3. Our mothers taught us about TIME TRAVEL .
"If you don't straighten up, I'm going to knock you into the middle
of next week!"

4. Our mothers taught us LOGIC.
"Because I said so, that's why."

5. Our mothers taught us MORE LOGIC.
"If you fall out of that swing and break your neck, you're not going
to the store with me.."

6. Our mothers taught us FORESIGHT.
"Make sure you wear clean underwear, in case you're in an accident."

7. Our mothers taught us IRONY
"Keep crying, and I'll give you something to cry about."

8. Our mothers taught us about the science of OSMOSIS.
"Shut your mouth and eat your supper."

9. Our mothers taught us about CONTORTIONISM.
"Will you look at that dirt on the back of your neck!"

10. Our mothers taught us about STAMINA..
"You'll sit there until all that spinach is gone."

11. Our mothers taught us about WEATHER.
"This room of yours looks as if a tornado went through it."

12. Our mothers taught us about HYPOCRISY.
"If I told you once, I've told you a million times. Don't exaggerate!"

13. Our mothers taught us the CIRCLE OF LIFE.
"I brought you into this world, and I can take you out."

14. Our mothers taught us about BEHAVIOR MODIFICATION.
"Stop acting like your father!"

15. Our mothers taught us about ENVY.
"There are millions of less fortunate children in this
world who don't have wonderful parents like you do."

16. Our mothers taught us about ANTICIPATION.
"Just wait until we get home."

17. Our mothers taught us about RECEIVING .
"You are going to get it when you get home!"

18. Our mothers taught us MEDICAL SCIENCE..
"If you don't stop making a face, it's going to freeze that way."

19. Our mothers taught us ESP.
"Put your sweater on -- don't you think I know when you are cold?"

20. Our mothers taught us HUMOR.
"When that lawn mower cuts off your toes, don't come running to me."

21. Our mothers taught us HOW TO BECOME AN ADULT .
"If you don't eat your vegetables, you'll never grow up."

22. Our mothers taught us GENETICS.
"You're just like your father."

23. Our mothers taught us about our ROOTS.
"Shut that door behind you. Do you think you were born in a barn?

24. Our mothers taught us WISDOM.
"When you get to be my age, you'll understand."

25. Our mothers taught us about JUSTICE
"One day you'll have kids, and I hope they turn out just like you."

Mitchell is 18 mos

2009-05-08T13:27:00.000-05:00

Wordless Wednesday

2009-05-06T09:21:00.000-05:00

Wordless Wednesday

2009-04-29T15:39:00.000-05:00

Kids Fest

2009-04-24T08:50:00.000-05:00

The big moose (the boys loved all the mascots walking around)...

The choo-choo train (Mitchell cried when I took him off)...

Cameron is helping read the story and Mitchell is listening intently...

Cameron dancing with the bird.....

Mitchell and the bunnies...

Cameron and the goat....

Here you go, are you hungry?

Reassurance

2009-04-21T08:30:00.000-05:00

I was contacted yesterday by my local Down Syndrome Support Group and asked if I would be willing to talk to a new mom whose son was just born on Thursday (April 16) with an extra chromosome. The mom is quite upset and would really like to talk with someone who has been there, and can offer her some reassurance.

With tears in my eyes, my reply was YES, OF COURSE, I WOULD LOVE TO TALK TO HER!

Why the tears? Because this was me. One one hand it feels like yesterday, and on the other it seems like decades ago. I can so relate to how this new mom feels. Becoming a mother for the first time is an absolutely indescribable experience.

You are meeting this little one who has been blossoming and growing inside you for 9 months, you gaze into their eyes in wonder, what did I do so right to deserve this unbelievable gift?

You hold their tiny hand, thanking God for giving you this miracle.

The emotions and feelings you have are so overwhelming, nothing else on Earth matters except this child in your arms.

When you hear the words Down syndrome when referring to this miraculous little one you don't know how to react, what to feel, what to think, what that means. You feel so alone, helpless, clueless, lost, sad, angry and guilty all at the same time (at least I did).

I have a very strong desire to do everything I can to help new moms with their feelings, whatever they may be. I truly don't want anyone to feel as alone as I did in those first few months after Cameron was born.

Today, I am extremely blessed because I know what it means that your child has an extra chromosome. It means endless hugs, kisses, love, laughter, fun and joy. It means that I will learn, see, and feel things I would never had experienced in this lifetime without that extra chromosome. It means that I now have an extended family who is on this amazing journey in Holland right there with me, both locally and worldwide.

I can't wait to meet her and her beautiful baby boy. Please pray that I am able to give her a glimpse of hope as to how absolutely wonderful her future will be beause of this little miracle and his extra chromosome.

12 newborn babies with DS up for adoption

2009-04-20T15:41:00.000-05:00

The Adoption Awareness Program in Down Syndrome Association of Cincinnati has contacted a friend of mine.

They have TWELVE birth families currently trying to make an adoption plan for their pre-born babies. They are hoping to have several potential adoptive families to present as possibilities.

Are you or anyone you know interested in adopting a baby boy or girl with Down syndrome????

I do have the contact information, please let me know if you would be interested.

Happy Easter!

2009-04-12T11:11:00.000-05:00

Award

2009-04-09T12:13:00.000-05:00

I received this from Cheryl, Ruby's Mom. Thank you so much Cheryl.

"These blogs are exceedingly charming. These kind bloggers aim to find friends and be friends. They are not interested in self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships will be propagated. Please give more attention to these writers. Deliver this award to eight bloggers who must choose eight more and include this cleverly- written text into the body of their award.

I am sending this award on to:

Amy at The Fledge Farm
Kristen at Faulkner Family
Kim at Charlie & Calvin's Up To
Brigitte at Van Nice Family Journey
Julie at The Adventures of Cap'n Jack 'n Crew
Emma (CJ) at Little Miss E
Angela (Leah) at Its My Life Mom!
Braska (RK) at Braska Bear

I love reading your blogs, thanks for writing.

What's Barbie Been Up To?

2009-04-09T12:02:00.000-05:00

Down Right Beautiful

2009-04-02T06:08:00.000-05:00

It's Magic!

2009-04-01T19:50:00.000-05:00

Wordless Wednesday

2009-04-01T19:22:00.000-05:00

Today is the day!

2009-03-31T11:17:00.000-05:00

Help Spread the Word to End the Word. I invite you to be a fan of respect and join me in a campaign to stop the use of the “R-word.” Today thousands of people across the country will pledge to end the use of the word “retard/ed.”

Visit www.r-word.org and take the pledge and pass this site along to all your friends. Help us get 100,000 pledges and spread the word.

Life Is Grand

2009-03-27T10:00:00.001-05:00

I won my first bloggy award! Thank you to my friend Karyn at Quinn's Crusaders.

Karyn and I met when her daughter, Quinn, was still blossoming in the womb. Karyn received a prenatal diagnosis of Down syndrome and was brave enough to come to a Mom's Night Out dinner to meet other moms of children with a little somethin' extra. I offered for Karyn and her family to meet Cameron (I wanted them to see how much more typical he was than not). ~~I'm pretty sure he charmed the pants off of them!~~

Thank you Karyn, this award means a lot to me.

For The Life is Grand Award I must give five reasons why I think life is grand and then tag five more people.

My Life Is Grand because of:

1. My children. I suffered for years before having my boys, trying one procedure, surgery, medication after another - all unsuccessful. The Lord finally answered our prayers and gave us not one miracle, but two. They mean the World to me and I know that I would be lost and miserable without them.

2. My husband. I am completely blessed to have such a wonderful man in my life. I know that I don't tell him or show him often enough how much he means to me. I would be lost and miserable without him as well.

3. The Lord. I have always believed in and prayed to the Lord. It's been within the last few years that I have really seen what is possible when you put all your faith in Him.

4. My health. I have seen too many people suffer and die too early from cancer. I thank the Lord every day that my family and I are healthy. I will NEVER take this for granted.

5. My family & friends. They love, understand and support me regardless of my faults.

I am now awarding the following:

1. Sunflower Stories
2. Larkin's Place
3. Pocket Lint
4. The Baeten Family
5. Class of 2008

I really enjoy reading your blogs and because of you as well, my life is grand!

My Apologies

2009-03-27T09:32:00.000-05:00

I’ve been sick for a week now. I have a sinus infection and bronchitis.

I truly believe I jinxed myself. I mentioned to a co-worker that I haven’t been sick in years. What the heck was I thinking saying something so stupid???

I am going to try to catch up now that my head doesn't feel like it's going to completely explode.

Wordless Wednesday

2009-03-18T19:16:00.000-05:00

Happy Birthday Tim!

2009-03-17T02:01:00.000-05:00

Today is my big brother's birthday. I have always looked up to and admired Tim. He left to go into the army when I was only 8 years old. Tim has always been the ~~only~~ rational, mature one in the family

He has taken the role of single dad and is raising his three daughters (two of which are ~~hormonal, boy crazy~~ teenagers) and he is doing a wonderful job ~~keeping them in line~~ raising them correctly.

Happy Birthday Big Brother - I love you.

Oh, and in celebration of ~~St. Patrick's Day~~ your birthday, I will be spending the entire day drinking green beer. ~~No need to thank me, it's the least I can do.~~

Continue to Spread The Word

2009-03-12T06:12:00.000-05:00

Wordless Wednesday

2009-03-11T19:40:00.000-05:00

Always check your child's homework

2009-03-11T13:08:00.000-05:00

(Here's the reply the teacher received the following day)

Dear Mrs. Jones,
I wish to clarify that I am not now, nor have I ever been, an exotic dancer.
I work at Home Depot and I told my daughter how hectic it was last week before the blizzard hit. I told her we sold out every single shovel we had, and then I found one more in the back room, and that several people were fighting over who would get it. Her picture doesn't show me dancing around a pole. It's supposed to depict me selling the last snow shovel we had at Home Depot.
From now on I will remember to check her homework more thoroughly before she turns it in.
Sincerely,
Mrs. Smith

Spread The Word

2009-03-06T12:37:00.000-06:00

Wordless Wednesday

2009-02-25T18:24:00.001-06:00

Win an iPod Touch

2009-02-20T13:19:00.000-06:00

The retail value is $300.00. However, you can win it for FREE and help Bring Jacob Home all at the same time.

My friend, Brigitte, and her family are adopting an adorable little guy from Reeces Rainbow. Adoption is extremely expensive, but with our help we can help them raise enough money to bring Jacob home to his forever family.

So, for every $10 that is donated towards Jacob's adoption, your name is put in for the final drawing for the iPod Touch.

For everyone that donates AND posts about this on their blog, linking back to their fundraiser (please leave Brigitte a comment with the link that you have done so), will get an additional entry.

Or, if you donate AND send an email to 10 of your friends (Brigitte being the 11th) you can get an additional entry.

Brigitte's beautiful daughter, Josie, will be drawing a name on Friday, March 20th at 7:00 p.m. CST so get your donations in before that!!

Wordless Wednesday

2009-02-18T18:29:00.000-06:00

WHY GOD MADE MOMS

2009-02-18T07:18:00.001-06:00

Answers given by 2nd grade school children to the following questions:

Why did God make mothers?
1. She's the only one who knows where the scotch tape is.
2. Mostly to clean the house
3. To help us out when we were getting born.

How did God make mothers?
1. He used dirt, just like for the rest of us.
2. Magic plus super powers and a lot of stirring.
3. God made my Mom just the same like he made me. He just used bigger parts.

What ingredients are mothers made of?
1. God makes mothers out of clouds and angel hair and everything nice in the world and one dab of mean.
2. They had to get their start from men's bones. Then they mostly use string, I think.

Why did God give you your mother and not some other mom?
1. We're related.
2. God knew she likes me a lot more than other people's moms like me.

What kind of little girl was your mom?
1. My Mom has always been my mom and none of that other stuff.
2. I don't know because I wasn't there, but my guess would be pretty bossy.
3. They say she used to be nice.

What did mom need to know about dad before she married him?
1. His last name.
2. She had to know his background. Like is he a crook? Does he get drunk on beer?
3. Does he make at least $800 a year? Did he say NO to drugs and YES to chores?

Why did your mom marry your dad?
1. My dad makes the best spaghetti in the world. And my Mom eats a lot.
2. She got too old to do anything else with him.
3. My grandma says that Mom didn't have her thinking cap on.

Who's the boss at your house?
1. Mom doesn't want to be boss, but she has to be cause dad's such a goof ball.
2. Mom . You can tell by room inspection. She sees the stuff under the bed
3. I guess Mom is, but only because she has a lot more to do than dad.

What's the difference between moms & dads?
1. Moms work at work and work at home and dads just go to work at work.
2. Moms know how to talk to teachers without scaring them.
3. Dads are taller & stronger, but moms have all the real power 'cause that's who you go to if you want to sleep over at your friend's.
4. Mom s have magic, they make you feel better without medicine.

What does your mom do in her spare time?
1. Mothers don't do spare time.
2. To hear her tell it, she pays bills all day long.

What would it take to make your mom perfect?
1. On the inside she's already perfect. Outside, I think some kind of plastic surgery.
2. Diet. You know, her hair. I'd diet, maybe blue.

If you could change one thing about your mom, what would it be?
1. She has this weird thing about me keeping my room clean. I'd get rid of that.
2. I'd make my mom smarter. Then she would know it was my sister who did it and not me.
3 I would like for her to get rid of those invisible eyes on the back of her head.

GI Appt. Today

2009-02-16T16:13:00.001-06:00

Cameron has been refusing to eat more and more foods including things that used to be his favorites (yogurt & PB&J sandwiches). So I took him to his GI dr. today. He was 24 lbs. on their scale (He is 2 years and 7 months old).

Although his refusing to eat certain foods ~~is likely~~ could be behavioral, I need to rule out anything medical and get some advice on how to get him to eat more of a variety of foods without the ~~constant~~ occasional struggle.

So the plan is to do a food diary writing down the date, the time he started ~~refusing foods~~ eating, the time time finished ~~being sassy~~ eating, the food/drink offered, how much consumed, etc.

We will do all the necessary blood work (CBC, celiac) the next time he gets his thyroid checked. [Note to self- schedule that appt.]

~~I was told~~ We will be getting a call from the feeding clinic to make an appointment there as well. I do believe while there he will work with a feeding specialist to rule out the ~~likelihood~~ possibility of it being behavioral.

From there it will be determined if we need to do a swallow study and endoscopy.

I am feeling positive about the plan in place ~~until dinner time~~.

Down syndrome is Contagious

2009-02-15T09:17:00.000-06:00

Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual.

Recently, science has discovered that this cellular abnormality is highly contagious.

As a result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level.

These changes manifest themselves in a number of ways. Something extra in the visual cortex results in parents who view the world differently.

In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important.

Spontaneous appearance of tears of joy have also been confirmed. The section of the brain used in logical thought undergoes dramatic changes.

Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD,VSD and PDA. Familiarity with G-tubes, Pic lines and the NICU is another side effect.

Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classrooms of medical students and educate the population at large about issues they are passionate about. These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.

The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon.

One mother reported that her heart skipped a beat when her son smiled at her for the first time.

The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load.

Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain.

Apparently, the presence of a little "something extra" enhances the lives of individuals fortunate enough to be infected.

Originally written by Wendy Holden

T21 Traveling Afghan

2009-02-13T08:29:00.001-06:00

Chandos (mom of Little Miss E) is making a T21 afghan to travel the world! The afghan travels from one family to another, along with a journal.

Each family, upon receiving the afghan, takes a picture of their family member (with Down syndrome) with the afghan and the picture will be posted on a "T21 Travelling Afghan" page. After having the afghan for bit, the family writes a note in the journal and sends it off to the next family.

Click the button below to find out all the specifics.

Please post about this on your blogs, FaceBook, MySpace, Twitter, etc. with a link back to this page. That way we can spread the the word out as far and wide as possible.

Please stay tuned if you would like to follow the journeys of the Traveling Afghan. I will follow-up with the links to the page so you can see all the adorable pics and read the journal entries - how fun!

Wordless Wednesday

2009-02-12T09:33:00.001-06:00

First Born

2009-02-11T08:01:00.000-06:00

1. WAS YOUR FIRST PREGNANCY PLANNED?

Hoped & Prayed for, but not expected.

2. WERE YOU MARRIED AT THE TIME?

Yes.

3. WHAT WAS YOUR REACTION?

Complete shock, ecstatic, disbelief, grateful.

4. WAS ABORTION AN OPTION FOR YOU?

Never

5. HOW OLD WERE YOU?

32

6. HOW DID YOU FIND OUT YOU WERE PREGNANT?

Home test & then OB's office

7. WHO DID YOU TELL FIRST?

Hubby

8. DID YOU WANT TO FIND OUT THE SEX?

No way.

9. DUE DATE?

7/29/06

10. DID YOU HAVE MORNING SICKNESS?

Nope

11. WHAT DID YOU CRAVE?

Burgers & Ice Cream

12. WHO/WHAT IRRITATED YOU THE MOST?

The smell of cigarette smoke

13. WHAT WAS YOUR FIRST CHILD'S SEX?

Boy

14. DID YOU WISH YOU HAD THE OPPOSITE SEX OF WHAT YOU WERE GETTING?

Nope

15. HOW MANY POUNDS DID YOU GAIN THROUGHOUT THE PREGNANCY?

Like 35!

16. DID YOU HAVE A BABY SHOWER?

Yes

17. WAS IT A SURPRISE OR DID YOU KNOW?

I knew.

18. DID YOU HAVE ANY COMPLICATIONS DURING YOUR PREGNANCY?

Nope.

19. WHERE DID YOU GIVE BIRTH?

Aurora Women's Pavilion, West Allis, WI

20. HOW MANY HOURS WERE YOU IN LABOR?

12

21. WHO DROVE YOU TO THE HOSPITAL?

Hubby

22. WHO WATCHED YOU GIVE BIRTH?

Hubby, doctors and nurses

23. WAS IT NATURAL OR C-SECTION?

Natural

24. DID YOU TAKE MEDICINE TO EASE THE PAIN?

Epidural

27. HOW MUCH DID YOUR CHILD WEIGH?

7 lbs.

28. WHEN WAS YOUR CHILD ACTUALLY BORN?

7/9/06

30. WHAT DID YOU NAME HIM/HER?

Cameron Allan

31. HOW OLD IS YOUR FIRST BORN TODAY?

2 years & 7 months

Wordless Wednesday

2009-02-04T19:15:00.000-06:00

Bloggy Makeover

2009-02-03T23:00:00.000-06:00

My blog finally has a new look.

I entered to win a bloggy makeover from RK, a/k/a Braska's mom and I WON!! Thank you RK, I really do appreciate it.

This is the second time I won something just by posting a comment on a friend's blog.

The first time I won a copy of Roadmap To Holland which is an absolutely awesome book written by my online, DownSyn, bloggy friend, Jennifer. This wonderful prize was given to me by Deborah - thanks again Deborah, I loved the book and quickly read it and borrowed it on to another mom and promised it to another mom after that.

My 10 Names

2009-02-03T15:47:00.001-06:00

I just got this in an e-mail and thought it was too funny not to share. Let me know your 10 names (okay, it's actually 11, but I am just following the e-mail).

1. YOUR REAL NAME: Terri Hust

2. YOUR GANGSTA NAME: Terizzle
(first 3 letters of real na me plus -izzle)

3. YOUR SPY NAME: blue cat
(favorite color and favorite animal)

4. YOUR SOAP OPERA NAME: Ann Arthur
(your middle name and street you live on)

5. YOUR STAR WARS NAME: Huste
(the first 3 letters of your last name, first 2 letters of your first name)

6. YOUR SUPERHERO/CRIMINAL NAME: Pink Miller Lite
(Your 2nd favorite color, and favorite drink)

7. YOUR IRAQI NAME: Eshelty
(2nd letter of your first name, 3rd letter of your last name, 1st letter of your last name, 2nd letter of your moms maiden name, 3rd letter of your dads name, 1st letter of a siblings first name, and last letter of your moms first name)

8. YOUR WITNESS PROTECTION NAME: Jean Allan
(parents' middle names)

9. YOUR GOTH NAME: Black Tampa or Black Junior
(black, and the name of one of your pets):

10. Your ghetto girl name: Teriqua
(first 3 letters of your first name and add -iqua)

11.Porn Star name: Tabby Peck
(Name of your first pet and your mother's maiden name):

25 Random Things

2009-01-30T10:31:00.000-06:00

1. I had lasik eye surgery. Prior to that I was pretty close to being considered legally blind (I wore contacts)

2. I am a obsessed with coupons!

3. I currently read about 80 blogs, most of which are moms I "met" on DownSyn (which unfortunately, because I spend so much time reading blogs, I don't have time to go on anymore)

4. I was a cheerleader in Middle School

5. My celebrity crush is Wentworth Miller

6. In my younger, bar-hopping days I won runner up in the hot legs contest and bikini top contest.

7. I would like to have another baby (maybe a girl?)

8. I used to be a PartyLite consultant and earned a free trip to Hawaii

9. I occasionally shop at Goodwill.

10. I drink at LEAST a gallon of water a day (I also pee a lot).

11. I grew up very poor in the heart of the ghetto, thought I wanted to be a gang member, and have dated a few.

12. I have two older brothers, we are all five years apart.

13. I can’t resist baked goods (especially homemade).

14. I enjoy cooking and entertaining.

15. I take care of my elderly father.

16. In a fight or flight situation, I tend to fly.

17. I am a thrill seeker, I love roller coasters, have bungee jumped and want to skydive.

18. I eloped to Mexico and got married on the beach at sunset.

19. I haven't printed pictures from my camera in at least a year (the pics of the boys on my desk at work are VERY old).

20. I am easily overwhelmed.

21. I have had the windows on my car broken 7 times that I can remember.

22. I was previously engaged. Had the wedding planned, dress bought, hall/church booked, etc., we broke up less than 6 months before the wedding (it took me years to get completely over him - what a waste of time!)

23. I work full-time as a legal secretary (which is what I went to college to do) and have done it for 16 years. I do enjoy working. I would love to be able to spend more time at home with my boys, but I am NOT meant to be a stay at home mom (working part-time would be ideal for me).

24. Our house is currently for sale

and we have an offer in on this one

because we are hoping to move to an area with a better school district (not to mention we outgrew it awhile ago - it was supposed to be a starter home but we've lived their for 9 years).

25. I am easily influenced by others and tend to be a follower rather than a leader.

Wordless Wednesday

2009-01-28T20:11:00.000-06:00

Happy Birthday Merissa!

2009-01-25T08:17:00.000-06:00

My niece, Merissa Christine is 10 years old today. Merissa is the youngest of three, she has two teenage sisters who ~~are occassionally annoyed by her~~ look out for her.

Merissa is caring, sensitive and a little shy. As most girls, she is a little dramatic at times, and is definitely daddy's little girl. She is Cameron & Mitchell's favorite cousin, and is always more than willing to play with them. I am sure she will make a wonderful mother someday.

[This picture is from 7 years ago, but it's still my favorite]

Happy 10th Birthday Merissa. I love you.

Happy Birthday Tristen!

2009-01-23T02:04:00.000-06:00

My niece, Tristen Renee is 14 today!

Tristen is the middle child and loves golf and drawing. She is competitive, outgoing, has a great sense of humor, her own sense of style, and is very much a typical teenager (way too into boys, make-up, clothes & gossip!).

She asked for clothes & make-up as birthday gifts.

Me: "Didn't I just buy you make-up for Christmas?"
Her: "Yes, but a girl can never have enough make-up!"
Me: "I think the saying is a girl can never have enough shoes."
Her: "I know, but I have a lot of shoes already."

(I bought her shoes/boots for Christmas too!) What can I say, I have two boys, I love spoiling my nieces.)

[Here's a picture of Tristen from about 7 years ago, but it's still my favorite.]

Happy 14th Birthday Tristen. I love you.

I have a dream...

2009-01-21T09:46:00.000-06:00

My DownSyn, online, bloggy friend, Renee's daughter had to write an "I have a dream" speech for school in honor of Martin Luther King Day. Below is Kassidy's speech and it really touched me(her little sister, Kennedy, just happens to have an extra chromosome like Cameron).

"I have a dream that one day kids with Down syndrome will be treated equally. They wouldn't be teased. Also they would be able to go to college and get jobs. I have a dream that these special kids could do everything they can and be our friends and we'd never turn them down just because they're different. We should all try to be their friends too. That is my dream."

What a wonderful dream! Kassidy is a great big sister and advocate for Kennedy.

I have a dream that Mitchell will one day look after his big brother the same way.

15 months 3 days

2009-01-15T06:00:00.000-06:00

Today Mitchell is 15 months & 3 days old which is the exact age Cameron was on the day Mitchell was born.

Wordless Wednesday

2009-01-14T19:33:00.000-06:00

2009-01-13T09:40:00.000-06:00

Seemingly simple, yet quite profound.

We complain about the cross we bear but don't realize it is preparing us for the dip in the road that God can see and we cannot.

Whatever your cross,
Whatever your pain,
There will always be sunshine, after the rain....
Perhaps you may stumble, perhaps even fall;
But God's always ready, to answer your call....
He knows every heartache, sees every tear,
A word from His lips, can calm every fear...
Your sorrows may linger, throughout the night,
But suddenly vanish, by dawn's early light...
The Savior is waiting, somewhere above,
To give you His grace, and send you His love.
May God fill your day with blessings!!

PRICELESS

2009-01-09T15:17:00.001-06:00

Jack wakes up with a huge hangover after attending his company's party.

He didn't even remember how he got home from the party.

As bad as he was feeling, he wondered if he did something wrong.

Jack had to force himself to open his eyes, and the first thing he sees is a
couple of aspirins next to a glass of water on the side table. And, next to
them, a single red rose!!

Jack sits up and sees his clothing in front of him, all clean and pressed.

He looks around the room and sees that it is in perfect order, spotlessly
clean. So is the rest of the house.

He takes the aspirins, cringes when he sees a huge black eye staring back at
him in the bathroom mirror.

Then he notices a note hanging on the corner of the mirror written in red
with little hearts on it and a kiss mark from his wife in lipstick: "Honey,
breakfast is on the stove, I left early to get groceries to make you your
favorite dinner tonight. I love you, darling! Love, Jillian"

He stumbles to the kitchen and sure enough, there is hot breakfast, steaming
hot coffee and the morning newspaper.

His 16 year old son is also at the table, eating. Jack asks, "Son, what
happened last night?"

"Well, you came home after 3 A.M., drunk and out of your mind you fell over
the coffee table and broke it, and then you puked in the hallway, and got
that black eye when you ran into the door."

Confused, he asked his son, "So, why is everything in such perfect order and
so clean? And I have a rose, and breakfast is on the table waiting for me,"

His son replies, "Oh THAT... Mom dragged you to the bedroom, and when she
tried to take your pants off, you screamed, 'Leave me alone I'm married!!' "

Broken Coffee Table $239.99 Hot Breakfast $4.20 Two Aspirins $.38 Saying the right thing, at the right time: PRICELESS

Friday Funny

2009-01-09T11:56:00.001-06:00

Wisconsin

2009-01-08T09:42:00.000-06:00

Jeff Foxworthy on Wisconsin

If you consider it a sport to gather your food by drilling through 38 inches of ice and sitting there all day hoping that the food will swim by, you might live in Wisconsin.

If you're proud that your region makes the national news 96 nights each year because Park Falls is the coldest spot in the nation, you might live in Wisconsin.
If you have ever refused to buy something because it's 'too pricey,' you might live in Wisconsin.

If your local Dairy Queen is closed from November through March, you might live in Wisconsin.

If you instinctively walk like a penguin for five months out of the year, you might live in Wisconsin...

If someone in a store offers you assistance, and they don't work there, you might live in Wisconsin.

If your dad's suntan stops at a line curving around the middle of his forehead, you might live in Wisconsin.

If you may not have actually eaten it, but you have heard of Head Cheese, you might live in Wisconsin.

If you have worn shorts and a parka at the same time, you might live in Wisconsin.

If you have either a pet or a child named 'Brett,' you might live in Wisconsin.

If your town has an equal number of bars and churches, you might live in Wisconsin.

If you have had a lengthy telephone conversation with someone who dialed a wrong number, you might live in Wisconsin.

If you know how to say Oconomowoc, Lac Courte Oreilles, Waukesha, Menomonie, Manitowoc, Shawano, Gillett, Lac Vieux Desert, and DePere you might live in Wisconsin.

If every time you see moonlight on a lake, you think of a dancing bear, and you sing gently, '…from the land of sky-blue waters,'....you might live in Wisconsin.

YOU KNOW YOU ARE A TRUE WISCONSINITE WHEN:

1. 'Vacation' means going up north past Hwy 8 for the weekend.

2. You measure distance in hours.

3. You know several people who have hit deer more than once.

4. You often switch from 'heat' to 'A/C' in the same day and back again.

5. Your whole family wears Packer Green to church on Sunday.

6. You can drive 65 mph through 2 feet of snow during a raging blizzard, without flinching.

7. You see people wearing camouflage at social events (including weddings and funerals).

8. You install security lights on your house and garage and leave both unlocked.
9. You think of the major food groups as beer, fish, and venison.

10. You carry jumper cables in your car and your wife or girlfriend knows how to use them.

11. There are 7 empty cars running in the parking lot at Mill's Fleet Farm at any given time.

12. You design your kid's Halloween costume to fit over a snowsuit.

13. Driving is better in the winter because the potholes are filled with snow.

14. You refer to the Packers as 'we.'

15. You know all 4 seasons: almost winter, winter, still winter and road construction.

16. You can identify a southern or eastern accent.

17. You have no problem pronouncing Lac Du Flambeau.

18. You consider Minneapolis exotic.

19. You know how to polka.

20. Your idea of creative landscaping is a statue of a deer next to your blue spruce.

21. You were unaware that there is a legal drinking age.

22. Down South to you means Illinois.

23. A brat is something you eat.

24. Your neighbor throws a party to celebrate his new pole shed.

25. Your answer to every neighbors’ crisis is a casserole.

26. You go out to fish fry every Friday.

27. Your 4th of July picnic was moved indoors due to frost.

28. You have more miles on your snow blower than your car.

29. You find minus twenty degrees 'a little chilly.'

30. You actually understand these jokes, and you forward them to all your Wisconsin friends.

Ice Cream Anyone?

2009-01-08T09:23:00.000-06:00

So I have been a bad mommy when it comes to teaching Cameron to self-feed. He will do finger foods but I haven't worked much with spoon feedings.

When he was little we were always going somewhere and I didn't want him to get messy (yeah, I know better now - who really cares, right?). He quickly learned that he doesn't have to feed himself because someone else will do it.

So I had an idea, on a night the boys were to get a bath I would put them at their table in their diapers and give them something they would REALLY want to eat - ice cream!

Although it looks good in the picture, Cameron wasn't having it. He didn't care what was in that bowl, he just wanted to take a bath.

Mitchell however was happy to explore, get messy and eat some ice cream (even if it was with his hands).

Maybe next time!

Look what I did

2009-01-07T21:16:00.000-06:00

I put this race track together (all by myself). Such a big girl I am!

Too bad we don't have batteries for the cars. Oh well, luckily the boys are too young to care and will still love it now and even more when the batteries are in!

Wordless Wednesday

2009-01-07T20:45:00.000-06:00

Happy Birthday

2009-01-03T21:09:00.000-06:00

Happy Birthday to my niece Hailey! We celebrated at the roller rink. I forgot how much fun roller skating was. I did biff (only once though)!

Happy New Year!

2009-01-01T21:19:00.000-06:00

We rang in the new year at our friend's house. Here's a pic of the boys and Cameron's future wife, Taylor. Do you like Cameron's cheesey smile? Me too!

Merry Christmas

2008-12-25T07:40:00.000-06:00

From Our Family To Yours. God Bless!

Brag!

2008-12-11T09:57:00.000-06:00

Mitchell signed milk!!!!!!! I can't tell you how excited I was when I saw him asking for his milk at dinner with the sign for milk instead of just pointing and grunting. Then Dave says, "Oh yeah, I forgot to tell you he did that this morning!"

Wordless Wednesday (Bambi & Thumper)

2008-12-10T15:12:00.001-06:00

Bath Time Fun

2008-12-08T19:51:00.001-06:00

Museum

2008-12-06T22:01:00.000-06:00

Last weekend we went to Betty Brinn Children's Museum. I LOVE this place, I am sure we will be going there frequently this winter. Here are some pics.....

The boys planting flowers..
The boys gettin' jiggy wit' it
Wrong way...
HELP ME!

Random Things

2008-12-05T09:58:00.000-06:00

This week's Wordless Wednesday pic - Cameron has become a little ham. Whenever I take a pic of him, he makes this big cheesey smile. I love it! (Where do kids get these things from?)

Black Friday - I did NOT get the DVD players from Target. I am easily persuaded and I mentioned to my brother that I was getting them and he made a comment like, do you really want the boys to sit in front of the TV in the car? After a little thought, the answer was a definite "No." I say this because the boys are so good in the car, they enjoy looking out the windows, babbling to eachother, and sleeping. Cameron is already so obsessed with TV, I didn't think it was a good idea for him to watch more.

Hobbies - My hobbies pretty much consist of reading and shopping. I don't have time or money to shop anymore except for necessities. I used to read books, but for the last two years have become obsessed with reading DownSyn and from there have become very involved in the blogs of the mom's who post on there, and then there's Facebook. I cannot keep up. So for the two people who read my blog, I want to let you know that I am reading yours as well and really do enjoy your writings, sorry I don't have time to comment often.

Wordless Wednesday

2008-12-03T07:33:00.000-06:00

Black Friday

2008-11-28T08:46:00.000-06:00

I love shopping and I love a great deal. I also happen to be sort of a morning person. Therefore,

After eating too much food, I veg out on the couch and dive into the sale ads. I get a paper and pen and I make out a "game plan" of which stores we need to be at and when for the best deals. This year I discovered that you can look at the sale ads online ahead of time (yeah, I know, I'm a little behind in the times). I am extremely excited about this deal specifically.

We have been discussing getting these for awhile now. I will be getting to Target bright and early!

I'm so excited.

Happy Thanksgiving

2008-11-27T08:23:00.000-06:00

It Depends On How You Look At It

2008-11-26T07:58:00.000-06:00

One day, the father of a very wealthy family took his son on a trip to the country with the express purpose of showing him how poor people live.

They spent a couple of days and nights on the farm of what would be considered a very poor family.

On their return from their trip, the father asked his son, 'How was the trip?'

'It was great, Dad.'

'Did you see how poor people live?' the father asked.

'Oh yeah,' said the son.

'So, tell me, what did you learn from the trip?' asked the father.

The son answered:

'I saw that we have one dog and they had four.

We have a pool that reaches to the middle of our garden and they have a creek that has no end.

We have imported lanterns in our garden and they have the stars at night.

Our patio reaches to the front yard and they have the whole horizon.

We have a small piece of land to live on and they have fields that go beyond our sight.

We have servants who serve us, but they serve others.

We buy our food, but they grow theirs.

We have walls around our property to protect us, they have friends to protect them.'

The boy's father was speechless.

Then his son added, 'Thanks Dad for showing me how poor we are.'

Isn't perspective a wonderful thing? Makes you wonder what would happen if we all gave thanks for everything we have, instead of worrying about what we don't have.

Appreciate every single thing you have, especially your friends!

Wordless Wednesday

2008-11-26T06:10:00.000-06:00

Hust Look-alike Meter

2008-11-19T13:32:00.000-06:00

MyHeritage: Family trees - Genealogy - Celebrities - Collage - Morph

Hust Look-A-Like Meter

2008-11-19T13:28:00.000-06:00

MyHeritage: Look-alike Meter - Pedigree - Family tree search

Wordless Wednesday

2008-11-19T07:50:00.000-06:00

Thoughts of a Mom

2008-11-19T07:39:00.000-06:00

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters”.

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician’s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases, and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother”. We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat”. We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

By Maureen K. Higgins

We're going to "The Ball"

2008-11-13T08:00:00.000-06:00

What is Kelly's Upside Down Ball? It is a fun night out and 100% of the proceeds go to families who have a child with leukemia and Down syndrome. You know you want to come. Here are all the details.

Can't make it? I hope you find it in your heart to donate to this wonderful cause. Click here to help out so many families who need it.

I will be volunteering at the ball tomorrow night. This year's theme is Country! I am SO not a country girl, but I think I have found cowboy hats for me and Dave to borrow. The boys will be going to the kid's party. It starts at 7pm (Mitchell's bedtime) so we'll see how they do. I've heard it is a great time, I can't wait. (I couldn't make it last year cuz Mitchell was just born).

Fun With Food Photo Contest

2008-11-12T13:08:00.000-06:00

5 Minutes For Mom is having a photo contest. Click here to check it out.

Here's Cameron from his 1st birthday after eating his cupcake - still one of my favorite photos.

I hope we win (the prize is $500 in groceries). Boy, could we use that our fridge is EMPTY!

Wordless Wednesday

2008-11-12T07:46:00.000-06:00

Wedded Bliss

2008-11-08T13:21:00.000-06:00

Our friends, Andy & Erin are getting married today (FINALLY!). They are both such amazing people and we love them dearly. Erin is bubbly, fun, outgoing, and a great listener. Andy is compassionate, funny, outgoing, fun and also a great listener. They both love children so much and I pray that the Lord blesses them with many children when the time is right. I know they are going to make wonderful parents.

I also know that Erin is going to make a beautiful bride and that Andy is going to cry (probably during the entire ceremony). I can't wait to celebrate your new lives together.

2008-11-07T10:13:00.000-06:00

I'm totally going to play this at my next party.

Wordless Wednesday

2008-11-05T07:33:00.001-06:00

Sweet 16

2008-11-02T08:00:00.000-06:00

My oldest niece, Brittany Marie, is 16 today.

I was so excited about becoming an aunt for the first time. I waited at the hospital for hours the night before you were born, not realizing that labor and delivery can take awhile.

The next day when I saw you in the nursery, I remember thinking, that can't be MY niece, she's all wrinkly and icky looking. You were beautiful, but I was an egostical 18 year old with very limited exposure to babies.

You are a genuinely wonderful person and I am SO proud to call you my niece and Cameron's Godmother.

Happy 16th Birthday Brittany! I love you.

Random Questions

2008-10-31T13:31:00.000-05:00

My DownSyn friend, RK posted on her blog some random questions. Here are my replies:

1. When it comes to Halloween, which are you? 1) All about it. 2) Don't really care. 3) Avoid it.

Anyone who knows me knows I am All About it!

2. What's your favorite element of the Halloween season? Candy, pumpkins, costumes, or kids knocking on your door?

I love dressing up, seeing all the costumes and especially haunted houses.

3. Which candy is the one you always hoped you'd get lots of when you did your trick-or-treating?

Candy Corn, Blow Pops & Chocolate

4. What's your favorite costume that you had, either long ago or recently?

I don't know if it was my favorite, but in 7th grade I was a Christmas tree. (I will try to post a pic later). I remember getting a lot of attention from that costume and everyone singing "Oh Christmas Tree" as I walked down the halls

5. If you've got kids who are dressing up, what are they gonna be this year?

Cameron was Batman & Mitchell wore Cameron's Superman costume from last year. (Again, I'll try to post pics later).

The Random Questions process
~Choose one or all of the questions to answer.
~Either respond with a comment to this post with your answer or put up a post on your own blog for a full response.
~Don't forget to include any funny or interesting story to illustrate your answer in action.
~Be sure to leave a comment on this post to let us know where to find your post so we can come check it out!

Happy Halloween

2008-10-31T08:41:00.000-05:00

Here are some pics from last year (maybe later I can upload some from this year).

And here are some from a few years ago.

21 Things About Cameron

2008-10-30T10:43:00.000-05:00

In honor of Down syndrome awareness month I am going to post 21 things about Cameron.

1. Cameron has a great sense of humor and thrives on making people laugh.

2. Cameron uses sign language and his first sign was baby a couple days after his baby brother was born.

3. Cameron can raise one eyebrow at a time.

4. Cameron is a bully, enjoys rough play, pushing, wrestling.

5. Cameron's eyes are hazel like his daddy's.

6. Cameron LOVES books.

7. Cameron refuses to feed himself most of the time (he's a little spoiled).

8. Cameron used to hate baths and would take showers with daddy.

9. Cameron is Mr. October in the 2009 WI Upside Down Calendar. He's also featured in December.

10. Cameron is extremely flexible.

11. Cameron is obsessed with TV and would watch it all day if we let him.

12. Cameron loves to learn and often asks to do his flashcards (I hope this continues).

13. Cameron's cheeks get extremely red during the fall/winter months.

14. Cameron began walking at 15 months.

15. Cameron loves music.

16. Cameron is NOT always happy.

17. Cameron is extremely compassionate and often cries when another child/baby does.

18. Cameron is not too fond of dogs, especially big, barking dogs.

19. Cameron was born 3 weeks early with no complications and went home with us after the typical 2 day hospital stay.

20. Cameron has an oral sensory issue and typically mouths objects, and especially likes rough textures (hairbrushes).

21. Cameron will come give me (or daddy or grandma) kisses when his brother gets told no. (because HE's the good boy - at least for that moment in time)

Political Quiz

2008-10-29T11:58:00.000-05:00

Here is a fun political quiz. It will match you with the candidate you agree with most.

For me, it just confirmed that I am confused. I was 8 for one candidate and 5 for the other. Let me know how you do!

Wordless Wednesday

2008-10-29T07:21:00.000-05:00

We will miss you

2008-10-28T07:44:00.000-05:00

Good-bye Grandma. You will be greatly missed. Thank you for raising such a wonderful woman who I am proud to call mom and has in turn raised an amazing son who I am so grateful to have as my best friend and husband.

Character Lines

2008-10-24T09:01:00.000-05:00

My DownSyn friend, Amy, wrote on her blog about lines that give us character. I thought this was a great idea and wanted to share some of mine.

I have lung cancer and it has spread to my brain.

Your mother has passed away, she's gone.

What would you say if I told you I love you?

Will you marry me?

We're in Mexico......and we're married.

Friend #1 - I'm pregnant.

You will need some tests, treatments, medications & surgeries to assist you in getting pregnant.

Friend #2 - I'm pregnant.

IVF will cost approximately $25,000 and is not covered by your insurance.

Friend #3 - I'm pregnant.

The IVF was unsuccessful, the embryo didn't make it.

Friend #4 - We're pregnant.

You will need another surgery before we do IVF again.

Friend #5 - I'm pregnant.

The IVF was unsuccessful. The embryo transfer has failed.

Friend #1 - we're going to have another baby.

Unsuccessful IVF procedure. The embryo didn't make it.

Friend #2 - I'm pregnant again.

You cannot have children.

You are pregnant.

The baby has a heart defect.

It's a boy.

I think your baby has Down syndrome.

We need to get him to the hospital right away, he's in heart failure.

We can't do the surgery he has a fever.

His temp is up to 107.

He's off bypass and doing well.

You are pregnant.

The baby has a cystic hygroma.

The baby could be severely disabled and have no quality of life.

You may want to consider termination.

It's a healthy baby boy.

I would love to hear the lines that have given you character. Please post a comment and let me know!

Feel Good Friday

2008-10-24T08:39:00.000-05:00

Just going to church doesn't make you a Christian any more than standing in your garage makes you a car.

NKOTB

2008-10-23T07:44:00.000-05:00

Then....

Now....

The concert was so much fun. I STILL love Donnie!

Wordless Wednesday

2008-10-22T06:09:00.000-05:00

Feel Good Friday

2008-10-17T08:15:00.000-05:00

Being happy doesn't mean everything's perfect. It means you've decided to see beyond the imperfections. God didn't promise days without pain, laughter without sorrow, sun without rain, but HE did promise strength for the day, comfort for the tears & light for the way.