Tuesday, February 26, 2013

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?

Thursday, February 21, 2013

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.

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?

Tuesday, February 19, 2013

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).


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.