Saturday, December 22, 2012

Happy Birthday, Clay!!!

...more pictures of the birthday party(s) to come but I wanted to share this with all of my non-Facebook friends and family!  Sorry for the delay, we went 48 hours without power following Clay's birthday party...that is a whole different story!

One year ago, I was SO scared that I would not get this moment.  That the NICU team would rush my precious baby away and hook him up to machines to help his little broken heart.  Thank you so much for being such fighter and proving me wrong!  You have continued to make my worries about having a child with Down syndrome seem so silly!  My life is forever better because you are a part of it.  Happy Birthday, Clay!  We love you SOOOO much!

Santa AND a Fire Station!

The awesome GRANDS group (Grandparents Responsible About Nurturing Down Syndrome) organized a Santa visit and the Waterloo Fire Station.  Santa arrived on a fire truck, read stories to the kids, and then gave the kids a ride ON the fire truck - siren and all!  Needless to say, a good time was had by all!

Tuesday, December 4, 2012

My Little Scholars!

Hazel's Kid's Day Out Picture!

 Wyatt's Preschool Picture!

Oh, what a difference a year makes!  Wyatt's 2011 picture 

Tuesday, November 27, 2012

New & Improved Ears!

Clay had tubes put in his ears at Boys Town this morning and did great!  We have been lucky and he has only had one ear infection but he has had ongoing fluid in his ears that could cause damage/issues down the road.  The tubes should fix that right up!

Dr. Allen, our wonderful ENT, also did a scope of Clay's throat to find the source of his "barky" cry.  We were thrilled to learn that she did not see any damage to his vocal cords or epiglottis, like we had previously been told may have occurred while being intubated for heart surgery!

Doesn't get any cuter than this!
Heading home!

Happy Thanksgiving!!!!

We have SOOO much to be thankful for this year!  ...and we got to celebrate that thankfulness with turkey and pumpkin pie FOUR times!  Yes, that is right, FOUR TIMES!  I am now also thankful for warm weather in November so I could squeeze in a few runs!

Things were so crazy last year at this time.  Baby Janke's arrival was getting closer and while we very excited to meet Baby J, we were also so scared of the unknown.  Little did we know that he would be a superhero and amaze us everyday with new milestones, good health, and lots of snuggle time.  He made heart surgery look easy for crying out loud!

We also learned of my dad's prostate cancer in November last year.  This news was so devastating and surreal.  I remember thinking it all had to be a bad dream.  You know the saying "When it rains, it pours" felt like it was hailing.  But a year later, we celebrate my dad being cancer FREE and an amazing dad and grandpa.

So although last year was a time that has forever marked my soul, this year will be remembered as the year that we knew every little thing is gonna be alright.

The thankful tree that the kids and I made.  We added a new leaf everyday.  This will definitely be a new tradition!
Papa love ;)

This marble run has been around since before I was born!
Wyatt & cousin Sarah.  Apparently, Wyatt is already too cool for pictures.
There may or may not have been a cousin fight over Clay right before this picture!?
Aunt Esther and Clay

Thursday, November 1, 2012

Just Like You - Down syndrome

What a great video to wrap up Down syndrome awareness month!  The tears were flowing but they are happy tears.  I can't wait to see the amazing boy, teenager, and man my little Clay will become - and someday that could be Wyatt & Hazel making a PSA for Down syndrome!

Wednesday, October 31, 2012

Tricks and Treats!

Wyatt's Preschool Class


Taking a treat break after Trunk n Treating at church!

Saturday, October 27, 2012

October is Down Syndrome Awareness Month - Let him be...

I borrowed this from the Down Syndrome Program at Boston Children's Hospital.  It is so well written and I must admit I was guilty of wondering "how bad" Clay's Down syndrome would be in those months of the unknown.  After spending 10 wonderful months with him, I know his Down syndrome is...just his.  It will be a part of him forever and that will make for good and bad days but it makes him his wonderful, unique self and you can't "rate" that...just like Hazel's hot temper or Wyatt's struggle to do things independently.  I don't rate their struggles and accomplishments.

Post #25 for National Down Syndrome Awareness Month! 

"He must be mild? Will he be high functioning? First let me say, certain things bother me, certain things just rub me the wrong way but I try to be tolerant and patient. I try to smile and nod. I try to let things slide off my back BUT please, oh please, don’t ask me to “rate” my child or “compare” him to other kids “like him”. Why on earth do we do this? Why do we do it amongst ourselves and our own community? I get told “Isaiah seems to be high functioning”. I won’t even discuss this….my reply is always “Isaiah has things he is good at and things that are tough for him like ALL kids” I don’t see him as high functioning, I don’t see him as medium functioning or low functioning (whatever that even is). I see him doing what he does as he is able to do it. Enough with labels, enough comparing and rating! Mild DS? He has DS, so be it. What that means for him is different than what it may mean for another kid but they are DIFFERENT kids. I am a 43 year old female with black hair (some greys if behind on coloring)…compared to other 43 yr old females I am functioning at a moderate level. WHO SAYS THAT? Is that even human? What does that mean? My sister went to Harvard…does that mean she is higher functioning than I am since I didn’t? I think folks grasp at straws and think the more “mild” the more “higher functioning” equals more capabilities but why does it seem wrong to me. Why does it pain me to feel that a mom is being told out there somewhere that her child is lower functioning. Her child has their successes, her child has their abilities, her child has their strengths…no matter how we rate them or feel they aren’t the most capable…they are hers. Isn’t it enough to know what is good and what is hard. What is gained by more labels? What is gained by the pressure of hoping your child is mild? What is the benefit of saying someone is low or high functioning? Is this child benefitting somehow? Is the family getting better care, services, love, celebrations, pats on the back, awards? Maybe it’s just me and my quirks but I just don’t get it. I celebrate my son and see him as he is NOT where he rates in the eyes of someone lumping him into a category amongst his peers with DS. Is anyone else tired of these words? Isaiah is Isaiah, Jack is Jack, Sofia is Sofia…let them “function” as they will, let them be…."

One of the great moms from my Down syndrome group said this to me in an email shortly after Clay was born and I thought it was brillant - not just for our children, but for so many moments in life!

"Comparison is the thief of Joy." - Theodore Roosevelt

Monday, October 22, 2012

Snake! Squiggles & Giggles!

Our First Buddy Walk was a HUGE success!

Luke and I could not feel more blessed with our wonderful friends and family.  Our little superhero raised over $3,000 for the Down Syndrome Alliance at his FIRST Buddy Walk!!!  We were amazed at the generosity you all showed and are forever grateful.  Clay's team dominated the walk with over 70 people!!!  The weather turned out to be BEAU-TI-FUL (even a little hot!) and the sea of blue "Clay's Superheroes" shirts put a huge grin across my face ALL day!  Wyatt & Hazel enjoyed the attractions - bubbles, clowns, face painting, cheerleaders, a marching band, and last but definitely not least - a table full of snacks.  Clay was his usual, play it cool, self and fell fast asleep on daddy's shoulder before the walk even began :)

Not many people get to be a part of our special little club and I was so thrilled to show our friends and family a little sneak peek at this amazing club we were chosen to be a part of.

...AND a big thank you to my mother-in-law, Nancy, for helping me sew 30 capes on the kiddos shirts!!!

Friday, October 12, 2012

Thursday, October 11, 2012

October is Down Syndrome Awareness Month! - END the "R" word!

Oh where to even begin with this one!  I HATE the word.  Plain and simple.  It is mean and offensive.  Am I being extra sensitive because my son has Down syndrome?  No, I have NEVER liked the word.  I am now, more than ever, grateful for my parents who never allowed me to use this word.  No one in my house would have ever been disrespectful enough to use the "N" word, and the "R" word was taught to us as being just as hateful.

I cringe even more when I hear it now, knowing all the pain it will bring to my family.  I WILL one day have to explain to Wyatt, Hazel, AND CLAY!!! what this word means, why it is NOT to be tolerated, and why someone is saying it to demean my child.  This makes me cry just thinking about it.  No one wants our kids to be made fun of.  Do you want your child to be called four eyes or teased because they have zits?  This is nothing they can help.

Please remember that YOUR child does not know this word until YOU teach it to them!  Mental retardation is a MEDICAL term used to describe someone who is slow or limited in intellectual development.  Even in the medical world, this term is now outdated and being replaced with the term "intellectual disability".  So when you say, "my hair looks retarded", you are using the word to replace "stupid", therefore calling an entire group of people who were BORN with a DISABILITY stupid.  That is just NOT nice.

So please!  Make an effort to erase this word from your vocabulary and end the cycle of name calling.

Learn more and take the pledge to end the r-word here -

Monday, October 8, 2012

2012 National Down Syndrome Society Times Square Video

"Every year, NDSS reminds the world in a big way about the gifts that people with Down syndrome bring to their communities through a special video presentation on a jumbo screen in the heart of the Times Square.

The Times Square Video presentation kicks off Down Syndrome Awareness Month on the morning of the New York City Flagship Buddy Walk. NDSS received over a thousand photo submissions for the 2012 Times Square Video contest and the featured photographs highlight children, teens and adults with Down syndrome working, playing and learning alongside friends and family. These collective images promote acceptance and inclusion, which is the foundation of NDSS and the National Buddy Walk Program.

Learn more about NDSS, the National Buddy Walk® Program and the Times Square Video at"

I hope Clay and I get to watch this video in person some year!  Amazing!

Thursday, October 4, 2012

October is Down Syndrome Awareness Month!

I wanted to use this opportunity to do a little educating on things that are not common knowledge about Down syndrome or special needs in general.  I am going to start with people first language.  This was totally new to me prior to Clay's diagnosis.  People first language means always saying the PERSON before their disability.  For example, Clay is a baby with Down syndrome NOT a Down syndrome baby.  Don't let his disability characterize who he is.  You wouldn't say "this cancer woman", you would say "this woman with cancer".  Here is a little more info. on people first language.  Spread the word!

Painting Pumpkins (and everything else in sight)!

Hot chocolate to warm up our cold fingers!