Birthday Fun

 Ben's Birthday was especially fun this year since he now really understands what is going on so much better.  The day before his big day I told him "Tomorrow is your Birthday".  His reply was "Yeah, Birthday Cake."  He was super excited to enjoy his favorite supper, sketti and BALLS!

 

 

This was the first year that he knew he was supposed to blow out the candle and kept trying to do so while we were singing.

  He needed no direction when it came to opening presents either.  He just preferred to take the paper off, small piece by small piece, which drove his big brothers insane! 

Not sure what his favorite gift has been so far, as he seems to be enjoying his tools, play dough, play food, balloon and basketball hoop equally.  So many new toys.  so little time!

Happy Birthday Ben!

5 years ago today, I was awakened about 4:30 in the morning by something that felt like a balloon pooping.

It was my water breaking.

I was very thankful that it happened at home, and not at work, since I was not planning to see my new little guy for a few weeks.  Even though I had already given birth to two babies already, I was not sure what to do.  Ben was scheduled to be born on April 6 via c-section, just like both of his big brothers (thanks to John for being breech).  I had never been "in labor" before or even felt a real contraction, so it was all new to me.

I called the Doctor on call since I knew they would have to move up the c-section and he told me to go to the hospital to get checked out.  They had to verify that my water really broke.  Apparently some women have false alarms on that, but I don't know how.  When your water breaks, it is pretty apparent.

They verified that Ben was ready to be born so they started to move the schedule around to get the surgical team assembled.  Since we had a prenatal diagnosis of Down syndrome,with a VSD they wanted to be ready to check out his heart once he arrived.

A student and teacher showed up to put in my epidural.  I was not very happy about that, but I realize that students eventually need to practice on real people to learn.  They put in the first shot to numb the area, and she told me I was going to feel a little bee sting.  That was no bee sting, it was more like a snake bite, and I let her know that.  After at least one unsuccessful attempt to  insert the epidural, I heard someone say "snake bite", as they went to try again,  but by now my back was numb.  Quite frankly, I am glad I can still walk after that episode since it took 3 tries to get it in.  Hopefully the student learned what not to do next time.

Finally the Doctors showed up and it was time to meet Ben.  I tend to have a very hard time during c-sections with nausea and even after the anti nausea medicine I was starting to feel poorly.  the Anesthesiologist tipped the table so I was laying slightly on my left side and it was like magic.  The nausea went away.

They brought Ben to me and I saw his sweet little round face and did see his Down syndrome right away, but it did not stop me from instantly loving him. It took him a while to cry, but they told me he was fine.  They wrapped him up, and took us all directly to a room where a tech checked out his heart.  That was the hardest part, watching my sweet new baby screaming while they dug on his chest with the wand.  I just wanted to snuggle him and let him know everything was OK.

As it turned out everything was OK. and Grandma showed up with John and Noah, and just as he wanted, John was the first one to hold little Ben.  Noah was second. 

 The boys got to take him down for a bath.  They were excited to get to help. 

 

The pictures show that Ben was not as excited about his bath as the boys were. 

 

At that point we did not know what life with Ben would hold, and we were scared.  Any diagnosis is scary, but when you look into that sweet face you know you will love this little bundle no matter what they can or can not do.  For me, I think I took the bar for Ben, and laid it on the ground.  I did not have any expectations, which is why every thing Ben did seemed like such a miracle. But soon the miracles were happening so fast, I realized we need to get the bar off the ground and start working with Ben to help him meet and shatter his goals. His progress has been amazing. 

 Here are some of the things I love about 5 year old Ben:
I love how you use your imagination to play with your toys.  (Duck, Duck, Goose)
I love how much you like to read and how you read things wherever we go.
I love how I have to kiss your owies in just the right spot, or you make be do it over until I get it right.
I love how much you love Signing Time and signing when we just can't figure out what you want.
I love how much you love sports.
I love how much you enjoy school.
I love how you "referee" basketball games. 
I love how well you listen to your teachers.
I love how much you love music and how you ask for "Ice, Ice Baby" every time we get in the van.
I love how you sing at church as loud as you can when you know the song. 
I lover you sense of humor.
I love your laugh.
I love how you like to snuggle
I love how you like tickles.
I love how you love babies.
I love listening to you sing.
I love watching your do the Months of the Year Macarena.
I love your mad Temple Run skills.
I love how well you use your iPad for learning (and fun)
I love how you love "sketti and BALLS".
I love how you say please and thank you.
I love how you want to do things yourself and you keep trying to you get things figured out.
I love you for being just who you are.

 We love you big guy!

  Happy 5th Birthday Ben!

Happy Birthday Ben!

Four years ago this morning I was awakened by a feeling of pressure being released.  I knew before my feet hit the floor that my water had broken.  But how could that be?  I had 3 weeks to go before my scheduled c-section.  Both John and Noah had been scheduled c-sections due to John being breech, so I was totally unprepared.  I had not even discussed with my Dr. what to do, since I had never even so much as felt a real contraction with the other two.

I called the on call Dr. who said to get to the hospital to get checked ( I felt bad for waking him up, especially when I saw him at the hospital later, to assist in my surgery).   I took a shower, threw some things in a bag, we woke up the boys and we started driving to Lincoln.  It was about 6:00 am then.  I waited until we were just about to the hospital to call my Mother-in-law to come get the boys (she likes to sleep in).  I waddled in to the hospital lobby, sat in the first wheel chair I saw, and the boys escorted me upstairs to the maternity ward, while Randy parked.

It did not hit me until right before going into surgery, (when Randy found the first game on TV)  that Ben was going to be born on the first day of  the NCAA tournament.  Looking back now I know why he picked that day to be born.  The boy loves basketball.  Or maybe it is our fault for exposing him to so much basketball at such an early age. We may never know.

The c-section went quick and soon I was brought  my little sweetie for a quick glimpse.  (that was all I had gotten of the other two also)  We knew from the prenatal diagnosis that he would have Down Syndrome so that part was not a shock. I could hear him cry from the warming table while they patched me up, and knew he would be OK.  Next came an hour long echo that I got to watch from the bed just a few feet away.  Ben cried an cried while they check him over to verify that tiny hole in his heart the prenatal scan showed was still there.  This time I was bothered by all his crying.  I just wanted to scoop him up and snuggle him to let him know I was there and he would be OK.

I don't even remember now when I finally got to hold him.  I know John really wanted to be the first one in our family to hold him (other than me) and I am pretty sure he was.

Noah was so proud too.  Black eye and all.

Both boys got to take him and help give him his first bath. 

 

This sweet little bunny was what they brought me on Easter morning.  

They wanted us to stay one more day, but we were ready to go home.  I had big boys who needed to celebrate Easter with their family.  So we broke out.  

  

 Ben has been doing great.  He has hit most of his milestones with just a slight delay.  We go to speech twice a month and OT once a month.  Ben graduated from PT at age 2 because he gets plenty just being a boy who lives on a farm, with lots of room to run.  Plus, did I mention that Ben loves basketball!

Today Ben is a happy energetic 4 year old.  His heart is good and he is always on the go.  He likes to copy his big brothers, play with his football guys, shoot hoops, practice reading his sight words, going outside (to shoot hoops), sing "This Little Light of Mine", read the phone book, fold laundry, tear up the house, watch Signing Time videos and eat.  He likes to make friends where ever we go.  We are so blessed to have this little sweetie in our family.  Happy Birthday Bennie Boy!

March is a Time to Celebrate!

March is a month to celebrate at our house. One of the most important dates we celebrate is Ben's Birthday. It is hard to believe that Ben is going to be 4 years old on March 20th. We really appreciate all the love and support that our local communities have given to our family.

When we first got Ben’s diagnosis of Down syndrome, we were worried about him being accepted and having friends. Those fears were soon put to rest as we attended community events. He is welcomed with smiles, high fives or waves wherever we go and Ben is usually more than happy to return the gesture. While we have been blessed with such great community support, not everyone is so lucky.

We would like to invite everyone to help us celebrate Ben’s Birthday by standing up for all individuals with intellectual disabilities. Wednesday March 7, 2012 is an important day that has been designated by the Special Olympics organization as Spread the Word to End the Word Day.

Spread the Word to End the Word is an on-going effort to raise the consciousness of society about the dehumanizing and hurtful effects of the word "retard(ed)" and encourage people to pledge to stop using the R-word. The campaign, created by youth, is intended to engage schools organizations and communities to rally and pledge their support at  http://r-word.org/ and to promote the inclusion and acceptance of people with intellectual and developmental disabilities.

We’re asking every person - young and old - to help eliminate the demeaning use of the R-word–a common taunt used to make fun of others. Often unwittingly, the word is used to denote behavior that is clumsy, hapless, and even hopeless. But whether intentional or not, the word conjures up a painful stereotype of people with intellectual and developmental disabilities. It hurts. Even if you don’t mean it that way.  If you pledge to Spread the Word to End the word in honor of Ben, please leave a comment at the end of this post.

 World Down Syndrome Day
Another important event this month is World Down Syndrome Day.   The date was selected by Down Syndrome International (DSI) to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. 

21 March 2012 marks the 7th anniversary of World Down Syndrome Day and for the first time in 2012 this day will be officially observed by the United Nations.  The voice of those with Down syndrome, and those who love them is getting louder.  Can you hear us? 



 Thank you for your continued support, and for helping us to celebrate during this exciting month of March!

Happy Birthday!