Miracle Marathon

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

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."

Reassurance

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.

Today is the day!

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.

WHY GOD MADE MOMS

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

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

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

First Born

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

15 months 3 days

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

Ice Cream Anyone?

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

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!

Brag!

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!"

Thoughts of a Mom

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

Character Lines

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!

Happy Heart Day

It was Tuesday, October 10, 2006. Our arrival back at the hospital that we had been staying at the last couple weeks was bitter sweet.

My stomach was in knots and my head was spinning as we rushed down the never ending skywalk to the elevators that would take us up to the PICU.

I tried to control my trembling hand as I pushed the buzzer to announce our son was in room five, hoping that he had a more restful night than I did.

The automatic doors opened as I prayed that the ventilater was able to keep his fevers at bay and his heartrate below 200.

Turning the corner to his room, my legs were weak and I was sure I would collapse at any moment.

"Be strong, he needs you." I thought to myself looking through the glass doors at my miraculous baby boy who had just turned three months old the day before. He was so tiny, yet so brave. He was so fragile, yet so strong.

I hesitantly looked up at the monitor to read the numbers that had fluctuated so dramatically over the last couple of days. Numbers that most people wouldn't know what to make of. However, I knew all too well what they meant.

I was in a daze as I put on the yellow gown, white mask, latex gloves, and blue hat. Anxiously I slid the glass doors open and bent down close to his crib so he could see me, "Mommy's here baby, it's going to be okay now, mommy's here".

I was going through the motions. The same motions I had been going through for the past couple weeks since finding out my baby was in severe heart failure and would need the AVSD repair done sooner than originally expected to save his life. A surgery that had been postponed twice already due to extremely high fevers that no one could explain.



Not a day goes by that I don't think about all the children, families, doctors and nurses at Children's Hospital of Wisconsin as I know all too well the miracles that are performed there daily. I can't express enough gratitude to Dr. Tweddle and the entire surgery team who saved my baby's life two years ago today. God Bless You All!

More Brags!

Mitchell is saying mama!

I was sooo excited to hear this word from his mouth. I'm sure he learned it from Cameron, just one of the many things he will teach him. It is now the most spoken word in our house - yay! It's so nice to feel wanted and needed (constantly).

Cameron is drinking from a straw!

This may not seem to be a big deal to most people but it is to me. We've been working on this for awhile (not diligently) BUT it is one more thing we can cross of his list of goals.

Brags!

Mitchell is standing without hanging on to anything!!!! He will pull to stand, catch his balance and then let go for a good few seconds. He is so cautious and knows how to fall carefully. He is able to catch himself with his hands or just plop on his butt (it's a good thing it's padded).

Cameron signed potty TWICE while pooping!!!! He walked away from us, started signing potty and grunting(I wasn't sure what he was doing at first). I was like, no way, but sure enough he pooped. This happened twice. Does he get it? I will be buying a potty chair soon.

Can you tell I'm one excited mommy?

Way to go boys, we're so proud of you.

9 Mo. Check-Up

Mitchell had his 9 mo. check-up. He is 29 inches long and 18 1/2 pounds. He did so good. He completely relaxed and let Dr. Patti look in his eyes, ears, mouth, etc. Never let out a peep or put up a fight. They drew blood to check if he's anemic (nope) and gave him one shot. He was so happy chewing on mommy's keys that he didn't even notice! Good job little man.

The sad news (for me) is I have to start weaning. Apparently, he's a little underweight (only the 15th percentile) so I am not producing enough milk. I stopped pumping a couple months ago and was still nursing in the morning and evening, but my milk supply must not be enough for him. I'm pretty sad about this, but he was actually starting to wean himself anyway. Just another sign that my baby is growing up.

Crawling

Mitchell is crawling!

It's not a typical crawl, but it is exactly the same way Cameron started out (before the bear crawl). He is on his hands and one knee and keeps one foot up to push off with and have readily available to sit quickly. He is definitely loving this new way of getting around. He moves slowly and with caution and takes sitting breaks quite frequently.

He crawled into the bathroom when I was getting ready for work this morning, and he was so excited that he found someone after being left alone in the living room!

Another milestone that is making me realize that my baby is growing up too fast.

The Journey of Motherhood

A friend asked me the other day, “Do you like being a mother?” Without hesitation, I said “I love it!”

For several years I suffered silently as I watched friends and family have babies and begin the wonderful journey of motherhood, a journey I so desperately wanted to travel. However, I had to face the reality that maybe being a mother wasn’t in the Lord’s plan for me. I continuously felt like something was missing, like I needed more, like I just wasn’t complete.

And then I began the journey of motherhood. It is, simultaneously, the most enjoyable and the most difficult thing I have ever done.

Before becoming a mother I had an idea of what it would be like, but this idea didn’t prepare me for the tremendous amount of unconditional love I would have for this new person that I brought into the world.

It has been said that “God gives special children to special people.” I didn’t want to be one of the “chosen ones”. I wanted to be an average person with a “typical” child.

However, God gives us what we need, not what we want.

I will never again take anything for granted, I will always have an open mind, I will cherish every moment spent with the people I love, I will always appreciate the little things in life, and I will not sweat the small stuff.