Thursday, March 21, 2013

Happy World Down Syndrome Day Everyone....

Alright, I admit, this time last year, I had no idea March 21st was World Down Syndrome Day.  Little did I know what was going on in my belly!

Well this year is different, this year I am proud to say I am a mom of a son who happens to have Down syndrome.  In honor of this day and my son, I've enlisted the help of some of my Down syndrome mommy friends.

I know some of you may be thinking, here she goes again. Enough about the awareness, but here's the deal.... adults and kids with Down syndrome aren't treated with the same respect as the rest of us. It's the truth.  In the seconds that my son was born, I knew a bunch of negative stereotypes we smacked on him. That's not fair, that's not right. As his mother, it breaks my heart.

Every day we will continue to fight for our children, but today especially, is a special day for our kids. So let us have our soapbox moment. You would be doing the same thing if you were in our shoes.

Down syndrome is when a person is born with an extra copy of their 21st chromosome, so they have three. That's why we celebrate today, 3/21. If you would like to learn more, there are more facts on Down syndrome in a previous post.

Now without further ado….
We would like to introduce you to our adorable, perfect babies and share our thoughts on what we hope for our child's future.

Carl - Pennsylvania

Carl is an amazing little boy who truly touches the heart of everyone who meets him. As his mommy, I could not ask for a sweeter, more wonderful little man. We love him so, so much.  He continues to amaze us every day!

As his mother, I pray that as he gets older people see my son as just Carl, not his Down syndrome.  It's what he has, not who he is.  I hope people will not sell him short. I have no doubt he will be able to do whatever he wants to do if he works hard. He may have to work harder than others, but he can do it.

Noah - Wisconsin

My son is a beautiful child and I am so excited to watch him grow. He has made me a more aware, compassionate, and caring person already.

I wish I could eliminate the us vs. them mentality. We are all people who want to love and be loved in return; we are more alike than different.

Kayla - Ohio

My daughter literally lights up the room and makes every single person she comes in contact with stop and smile! You very rarely see her without a smile on her face.

I wish that other people could walk in our shoes for just one day and see just how amazing it is to have a child with Down syndrome, that way they would know first hand that there is absolutely nothing to pity or feel sorry for. After that one day, they may even ask to trade places, because they will realize how lucky we truly are :).

Mason - Pennsylvania

Mason, My 5 1/2 month old baby boy who is the love of my life, with a little bit of extra! Mason brings smiles and joy to everyone he meets. He is surrounded by such love, hope and a huge support group of friends and family that cannot get enough of him. Mason makes me, his dad, his grandparents, his aunts and uncles, better in EVERY way... He makes our days better in EVERY way.

There has been many times so far, throughout my 5 month journey as a Mom, of a child with Down syndrome that  I have been told by friends, family, "professionals" in the medical field and even strangers that “Kids with Down Syndrome are so affectionate and loving and they will be your "Baby" for the rest of your life" ... OR ..  Having a child with Down syndrome is like having a "Kid" around for the rest of your life." .. .....".Your "Baby" will never grow up" .....and the comments could continue on and on. Children and grownups with Down syndrome basically only have 1 thing in common and that is an extra chromosome. They may have similar features, but as to their lifestyle, future and personalities, they are as different as typical children without special needs. As someone who is a proud mom of a healthy baby boy, who just so happens to have Down syndrome, I would like the world to see and recognize that our children are so much more like us "typical" people, and no one should  be allowed to assume that their diagnosis would put limits and boundaries on the way they grow up and live their lives.

                                                                   Zoey - Iowa

So many things have changed since my little Zoey entered the world.  I smile more. I don't take things for granted. I appreciate life on an entirely new level.  My faith has grown exponentially. My heart has grown so full of love and appreciation for my family.  And all this in 6 short months... imagine the gifts she has yet to bring.

People with Down syndrome are really more alike than different.  They are bright, capable, funny, beautiful, charming and willing individuals. I want people to recognize Zoey for who she is and not her Down syndrome.  I want people to know we are not sad - Zoey is exactly who she is meant to be - God does not make mistakes. People with Down syndrome can and do achieve all that their peers do.  If given the chance, the sky is the limit!

                                                                Owen - Iowa

Owen rocks because he is allowing us to help others understand how precious life is.  His baby cuddles and squishy cheeks and intoxicating!

The thing I wish everyone would understand about people with DS is that that they are PEOPLE!  Each of my four children has had issues that have come up. 

My oldest was born 8 weeks early and spent 30 days in the NICU.  She has 46 chromosomes. 

My second child was diagnosed with failure to thrive just after his first birthday because of eosinophilic esophagitis due to food allergies. We spent 4 years working with specialists across the country and undergoing many endoscopies to get him well.  He has 46 chromosomes.

Our third child has milk, egg and peanut allergies and requires an EPI pen and special diet. He also happened to break his leg at 17 months and required a cast.  He has 46 chromosomes.

Then there is Owen.  He was induced due to pericardial effusion. Upon arrival, he was cleared of heart issues but did develop pulmonary hypertension.  He spent only 6 days in the NICU and came home on oxygen (which he was on for 2 weeks). At 2 1/2 months, he sleeps, poops and eats. He is a baby taking in the world around him.  He has 47 chromosomes.

All children come with challenges and I am sure we will have more to come with each of our kids.  Our plan:  keep our eyes towards the future and grow kids who will be successful, happy adults. In the meantime, we will take each moment as they come and enjoy our family.

Wednesday, March 13, 2013

A Great Weekend with a Sour Ending...

Welcome March! And welcome 60 degree temperatures! We took full advantage of last weekend's weather.  On Saturday I took the kids to the park with my mother-in-law and sister-in-law. The park was of course packed.  It was cute, my mother-in-law made a dash for an open swing and resevered it for Sophia. Carl hung out attached to me in his carrier with his adorable little hat on.  Then the ice cream truck showed up. (I know already, right?) I tried to "hide" it from Sophia, but half the playground kids lost their minds and started screaming ice cream! Well, that was the end of that. Guess who got ice cream? Alright, I did too.

Sunday my husband was off, so we took the kids to the zoo and met up with my husband's best friend and his kids. The weather could not be more beautiful and the zoo could not be more of well, a zoo. We have a membership so we go all the time, and I mean all the time. I could give tours with my eyes closed.  The day was great and we decided to continue to enjoy the weather by going home and having a bar-b-que. So I headed to the grocery store to get food.

Well, that's when things went sour. While I was in the store, I put my purse in the kid seat.... dumb.  While in the bread aisle I wanted to grab some hamburger rolls, but there were only a few left and all the way on the top self against the wall. Another woman was beside me and I mentioned I wanted that bread and she said she did too. So I said I would try to grab it for us. Well, while I was grabbing the bread, she helped herself to my wallet. Ugh!

I didn't notice until was about to check out and that's when the panic set in. I went to customer service where they looked at me dumbfounded. I had to insist they call security and police.  I knew it happened in that damn bread aisle and sure enough, that's where security pulled up the surveillance video. It was all, there.

To speed things up, the first responding officer recognized the woman on the surveillance as someone she went to school with.  Thanks to a clear shot of the woman's face and knowing her first name, police were able to pull up mug shots and I was able to ID her. In the meantime, I canceled all my cards, and there was only about $10 in my purse. Detectives have enough for an arrest warrant. So this saga is far from over. What is wrong with people?

Not to end on a sour note.... let's end this with a new family picture.

Wednesday, March 6, 2013

That Damn "R" Word

OK, I admit it. I used to say the "R" word every now and then.  Back then it didn't seem like a big deal, it has become a part of pop culture's vocabulary. But, that's the problem.... the big, big, problem.  That is why we need today.  March 6th is Spread the Word to End the Word.  The word being retard, and all of its different variations.

Today people like me, a mom with a perfect baby boy with Down syndrome are speaking out.  Our message is simple.  Please stop using that word.  It is a word that makes us cringe, even sick to our stomach.

In the first few hours as I sat there holding my baby boy, trying to process his diagnosis, one of things that popped into my mind is..... I dread the day my little boy comes home in tears because someone calls him the "R" word.  With everyone saying it these days with such ease, it seems inevitable that it will happen.  But, it will hurt my little guy and me as his mother, a lot.

I don't think for a second my son is, even medically speaking, that awful word.  He is so smart, and with advancements in medicine and education, I know my son's generation is going to have higher IQ's and accomplish more then ever before.  But, for now unfortunately, the medical community still chooses to use that word and even more unfortunately, many of you do too. That breaks my heart, for my son, for everyone under the special needs spectrum.

So stop. Please stop.  If you catch yourself saying it, think of my little man.  Look at his face, would you want to hurt his feelings?

Sunday, March 3, 2013

Baby I'm Amazed By You!....

In the first few days after Carl's birth, we listened to doctors and professionals tell us all the obstacles they seemed sure we were going to face.  I remember feeling overwhelmed, defeated, scared, angry and sad.  I held my little boy in my arms and thought, he already has so much stacked against him. Low muscle tone, delayed learning, well according to those darling doctors, delayed everything.

While at CHOP, some of the doctors got worried Carl wasn't eating enough.  They assumed, because of his diagnosis that Carl was having trouble swallowing and taking in food.  Babies with Down syndrome are known to be poor eaters. Thank God one of our awesome nurses gave me a heads up, because next thing I knew, the nurse practitioner came up to us and said that she wanted to give my baby a feeding tube.  Mind you, this was a day after we discovered there was nothing wrong with his heart and I was really ready to get out of there and go home.  "No, no, no," I told her. I honestly didn't know how much he was supposed to be taking in at that point.  He was sleeping a lot, plus I was trying to get him to nurse. I did know my boy could eat and there was no way he needed a feeding tube.

The nurse practitioner asked, "what scares you, the procedure to put it in?" Um, yes! I thought in my head, how would she like it if I shoved a plastic tube down her throat? To make a long story short.... mommy won.... no tube.... and Carl ate... a lot.  I made sure my little man took in more then they  wanted him to. By the time they made the rounds the next morning, the doctors couldn't believe how much he had eaten.  Take that!

It was a good lesson learned.  People are going to under estimate my son just because he has an extra chromosome. Even I did in the very beginning, but he continues to prove us all wrong.  At his 4 month check-up his pediatrician said his head and neck control was better than most infants his age.  Not too shabby for kiddo who's supposed to have low muscle tone.  He also continues to eat, like crazy.  He'll be 5 months in a couple weeks and he's starting to wear his 9 month clothing.  He babbles and smiles, but what amazes me the most are his fine motor skills.  He can already pass a toy from one hand to another.

I know, I'm really lucky.  A lot of moms with kids with Ds, despite their best efforts are not having the success that my son is.  But, I learned, I need to hold him to higher standards.

Here's some pictures of Carl playing with one of his toys.