Acceptance...

Acceptance, it's a word that's been tossed around a lot lately in my "Down syndrome mommy" groups.  I'll cut to the chase, we want acceptance for our extra chromosome cuties, but at the same time we're pissed off we even have to fight for it to begin with.

For example, this week one of my mom friends opened up about how while she was shopping around  for a pre-school for her "typical" daughter, she casually asked if they also accept kids with Down syndrome. She was told flat out, "no." To make matters worse, the explanation she was given was, "Their condition is too severe." Excuse me? You can bet that had all us mamas fired up. We all concluded a letter to the school explaining why their policy was quite frankly, appalling was the best course of action.

I'm not going to waste my time explaining why that explanation they gave is beyond ignorant. I hope the majority of people reading this get it. Also, there was a happy ending, one of the schools this mom looked at said, not only accept kids with Down syndrome, but love having kids with Down syndrome.

I've had people tell me, "Carl is doing so well, maybe he'll be in a regular classroom." Again, excuse me? I think, they think, they are paying us a complement? I think? Instead I'm hurt and insulted. I'm sure no one has ever questioned if their normal chromosome count kid will be fine in a "regular" classroom.  No one has questioned that with Sophia. Why are you singling out my son? I get it, I know he's going to have some delays, I know he's going to have to work a little harder at some things. I'm not naive, but at the same time I have no doubt, my son will be in the same classroom as your kids. He's already proven he's one hell of a fighter.

These are just a couple of the oh so lovely comments moms and I get about our little ones. So in conclusion, here's what I hope you got out this. People who are differently-able deserve the same love, acceptance, and RESPECT as you and me. Please, please don't assume they can't do something.  As a mother with a differently-abled child, I'm annoyed I have to write this to begin with.

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.

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.

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?

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.

Please Don't Say Sorry....

These days a lot of moms have blogs, and it seems A LOT of moms with kids with special needs have blogs.  For many of us it's therapeutic, cathartic even. We want people to understand us, our frustrations, our fears and most importantly, how awesome our kids are.  That being said, I stumbled on a link to a post written by a mom with a child with Down syndrome.  It was about the things parents don't want hear when they tell someone their baby has Ds.  Many of the comments she wrote about, I've heard many times since delivering Carl into the world and well, I'm going to add my own two cents.

In the hours after finding out about the diagnosis, as I tried to sort out my emotions, two things became clear.  One, I didn't want people to pity us.  Two, I didn't want people treat my son differently.  So the LAST thing I wanted to hear from people is, I'm sorry.  Sorry for what? There's nothing to be sorry about, we were given a beautiful, perfect baby boy. Now, I'm not naive, I know not everyone was going to see it that way, and unfortunately, we got our fair share of, I'm sorry. To this day I still brace myself for the worst when I tell someone.  I even had person tell me, "that's the attitude you need" after telling her a number of times, there is nothing to be sorry about, my kid's amazing.  I mean seriously? Am I supposed to cry myself to sleep every night over this? I actually do the complete opposite, I wake up every morning to the most beautiful baby, who's just so happy and smiling, he sets my day off to the best start.


Back to that post I read, the mom also goes on to say, she hates it when people say, "God only chooses amazing parents like you." She went on to say, she feels like people are saying her child's a burden and only "special parents" can handle this. She says she and her husband are regular parents just like everyone else. Well, I disagree.

That comment is the one I have heard the most in various versions.  I don't however, take it as an insult, but a complement. This journey is not for everyone. If it was, 90 percent of women who receive a Down syndrome prenatal diagnosis wouldn't terminate their pregnancy.  Yes, the rate is that high, it's so sad.  We are now on a completely different path and I know there will be more bumps in the road. Children with special needs should go to the best loving homes possible.  

I feel honored God chose us to be Carl's parents and by the way, he's not a burden, in anyway. He's honestly, the sweetest, easiest, most darling baby to care for.  

I leave you with recent pictures of Carl and I ask you, why on earth would anyone feel sorry for us?

The Apple Doesn't Fall Far....

So after dedicating my first blog article to my son, it's my daughter's turn. You need to be fair, right?

Sophia, oh Sophia, where do I begin? Let's start by saying she'll be four in April, but is going on 13 sometimes.  She's also a princess who adores anything Disney and keeps me on my toes constantly. We lovingly call her, Stinkerbelle.

I remember when I was pregnant and found out I was carrying a little girl, I worried she would end up a tomboy, the complete opposite of me a total girly, girl.  Well, be careful what you wish for.  It's worse; she's exactly like me. My mother thinks it's hysterical. Paybacks a bitch, right?

People warned me three would get tough, after bracing myself for the terrible two's we breezed through that year with very little trouble.  Recently, the sassy attitude has taken an all time high, but while she's practically making me tear my hair out, there's also a sense of pride.  I don't want raise a girl who doesn't stand up for herself. I want a little fire cracker who speaks her mind. I got her she's my little alpha, my little clone.

She's a trip last week after saying something fresh, I looked at her and told her I was going to lock her in her room (kidding, of course). Without the slightest bit of hesitation she looked me right in the eye and said, "You can't lock me in my room, I don't have a door." Damn it, she's right, she had a folding door that kept coming off the track so we took it off. I was annoyed, yet proud of her quick, obnoxious response.  I'm raising her well.

On another note, she's the sweetest big sister.  I'm so proud of the way she treats Carl.  She has no idea he has Down syndrome. We decided she doesn't need to know right now.  She just sees a perfect little brother, there's nothing different about him.  I wish the rest of the world will see Baby Carl like Sophia does, as just sweet, perfect Baby Carl.  Her love for him is amazing.  She's recently been saying she wants to marry him. We're trying to tell her that's kinda frowned upon, but to her, marriage is when two people love each other very, very much, like she does Baby Carl.
Did I mention I'm so proud of her?

Facts on Down Syndrome

Here is some background on Down syndrome:

There are about 400,000 people in the country with Down syndrome.
The most common form of Down syndrome is Trisomy 21.  People with T21 have 47 chromosomes instead of the usual 46. Prior to or at conception, a pair of the 21st chromosomes (in either the sperm or egg) fails to separate resulting in a third copy of the 21st chromosome.
The cause of the extra chromosome is still unknown, but doctors do know it is not caused by environmental factors or anything the parents do before or during the pregnancy.

All people with Down syndrome experience delays in their cognitive and physical development, but the delays are usually mild to moderate. 

Many individuals with Down syndrome not only graduate from high school, but go on to college!  Many get married, are employed and live independent lives.

The possibilities are endless! 

(This information was provided by the National Down Syndrome Society).

Welcome

Well, I guess now that have a blog, this makes me a full blown housewife.  I don't plan on blogging just about Down syndrome; I plan to write about funny things too.  However, I feel like I need to start here....

October 15, 2012.

That was the day my son was born.  It was that day that my life took a very unexpected turn.  My pregnancy was normal, everything was "great," my ultra sound looked fine, his heartbeat sounded great, nothing out of the ordinary.  My water broke at 2:30 in the morning and we left for the hospital three hours later.  The delivery was quick and soon I was holding my beautiful baby boy.  He was smaller than his sister was, weighing in at 7 lbs. 3 ozs. Before I knew it, I was being wheeled off to my postpartum room and my little boy we named Carl, was wheeled off to the nursery to be examined and stabilize his body temperature.

As my husband and waited for our little guy to return, we were beaming.  We brought another little healthy human being into the world and then....

Next thing we knew a strange doctor walked into my room and quickly introduced himself.  He started by saying, "your son is looking healthy, but...". "But what?" my husband and I said at once as my body went numb.  He went on to explain that our son was showing a number of signs that he has Down syndrome.  His muscle tone was low, his eyes looked slanted, there was a fat patch on the back of his neck and a large gap between his big toe, all hallmark signs.  I looked at my husband, he was kneeling on the side of my bed with his face buried in his hands.  Then it hit me, guilt, it was my job to carry this baby into the world healthy, happy, and perfect.  I must have done something wrong.  The tears started as I asked the doctor if I did this.  He assured me, no, Down syndrome is something that just happens and is out of anyone's control.  My husband then looked at him and told him to get our son.

My little guy was finally wheeled back to us after what seemed like forever as I sobbed hysterically in my husbands arms.  He looked perfect, we thought how could this be possible? Over the next few hours we tried to wrap our brain around all this. What would this mean for our son? For us? Our future? His future? Could I handle this? Could I really handle a child with special needs? Why us? Why him?

I slowly started telling family and close friends the news.  Our family, like us, were devastated.  We all clung to the hope that there was a small chance the doctors were wrong.  None of the pediatricians that examined our son could make a definite diagnosis, we would have to wait for the genetic test.

In the meantime, we were assigned a social worker to help us cope.  Not only were we dealing this news, but we were still grieving the loss of my father-in-law who passed away just three weeks before the birth from cancer.  It was all too much.  We were once again mourning, mourning the loss of the little boy we thought we going have.

Day two and we hit rock bottom.  The cardiologist was worried about a valve in his heart and wanted to transfer him to a children's hospital for monitoring.  If the valve was to start narrowing more, surgery would be needed.  Suddenly the Down syndrome didn't seem that big of a deal, we just wanted our little boy to be healthy.  Our son was transferred to the Children's Hospital of Philadelphia (CHOP) by ambulance.  I demanded to be discharged early, there was no way my son was leaving without me.  The transfer team loaded our baby into the transfer crib that looked like an incubator and we were wheeled out together.  My husband and I sobbed as we drove behind the ambulance, it was awful, just heart-wrenching awful.

Day three and my son needed an IV put into a vain in his head.  It killed me to see my little guy all hooked up to monitors and tubes.  However, that day we finally got good news, his heart was ok.  We would end up staying at the hospital for another four days.  My husband stayed with him every night while I went home to take care of our daughter.

Something happened at CHOP that was nothing short of divine intervention.  The second day we were there my sister-in-law and I got into the elevator and headed up to the room.  The elevator stopped and in walked a little girl, who looked to be about ten, and her mother.  The girl looked right at me and asked why I was here.  I thought that was so sweet, how many kids would think to ask that? I told her my baby boy was here and they were worried about his heart.  She said she hoped he would get better and walked off the elevator.  I wanted to hug her so badly. We went up to the next floor and got off, tears were streaming down my face. My sister-in-law looked at me and said, "you know she had Down syndrome," I knew that. It was then I realized it was going to be OK, I could do this.

A few days later, it was confirmed, our son did indeed have Down syndrome.  We were pulled into a tiny room with tissues on each end table.  In the days leading up to this, I had come to accept the fact that my son had Down syndrome.  A few of the nurses and doctors at CHOP made a few comments to us that our son did not "look" like a child with Ds.  Those comments gave my husband and I some false hope, but deep down, I knew.  Still, the emotions started all over again once it was confirmed.  We held each other and cried, then my husband said, "lets go see our son." We dried our eyes and walked out hand in hand.  I remember walking back to our son thinking, that's it, no more tears, we're just going to love our little man so much.


We're now four months into this journey and I wish I knew then what I know now.  I now know an extra chromosome isn't that big of a deal.  My son is AMAZING!  As of now he is NOT developmentaly delayed at all.  Someone said to us shortly after the birth that the fears are greater, but the highs are higher.  It is so true.