Do you know what today is???
Today someone cute turns 6!
The annual picture with Mr. Bear.
This morning, the birthday boy had his hair styled in spikes.
Do you know what today is?
Today is the ONE international day of the year that is dedicated to building awareness to Down Syndrome.
What questions do you have?
I am open about our experiences and am happy to share what I know about parenting a child with Down Syndrome.
The International Down Syndrome Coalition for Life (IDSC for Life) recently asked the question “if you could go back before you had a baby with down syndrome, what would you say?” on their Facebook page.
It made me think.
What would I say to myself? Or to any mother that just learned their baby has Down Syndrome?
I would say…
You will forget your worries when your baby takes that first breath – after months of worrying that he wouldn’t be able to.
You will learn that love has no boundaries and just how unconditional love can be. That just like an innocent toddler, you won’t see a disability. You will see your child for who he/she is – YOUR baby – and that Down Syndrome will not define who they are.
You will become their biggest cheerleader and they will be yours as well.
(No, the color is not off in the picture. Yes, my kid is orange. His favorite food was carrots and he started to look like one. :) )
You will learn that they will do just about everything kids their age can do….just at their own pace.
You will learn to appreciate ALL their triumphs, especially the small ones instead of try to make them grow up too fast.
And take tremendous pride when they take all the small steps and attain the big goal that others thought they couldn’t achieve.
You will find out that this smile can make you forget just about everything bad that happened in your day.
You will enjoy that he admires you and wants to be like you.
(He is pretending to take my picture while I was taking his )
You will want to make his life as “normal” as you can to give him the chance to be a “typical” child. He doesn’t need to be treated differently, he doesn’t need to be babied (though you will want to keep him your baby forever), and give him room to be himself.
A diagnosis of Down Syndrome does NOT define who Cody is or what he will be when he grows up. I’m pretty sure he is going to be something GREAT when he grows up.
He can walk in a room, flash his smile and light up the room.
He doesn’t see kids with disabilities and think any different of them.
He can grow a Cody Fan Club everywhere he goes because his smile and personality just draw people in.
I want to be like him when I grow up.
I can’t believe I’m going to say it…
I have not been looking forward to this age.
I have been in denial that it was coming.
There is just something about it that makes it “official” big boy age.
He’s not a big boy….
He’s my baby!
Without my approval or permission, it’s going to happen.
So I might as well greet him….
Happy 5th Birthday,
My little sunshine turned 5 today. SIGH….
5 years ago today, we waited with anticipation and breaths held as we waited for a cry, a scream, a “he’s okay” from the doctor.
5 years ago today, we didn’t know what our lives would be like as we began the journey as parents of a child with Down Syndrome.
We didn’t know the depths of love this child would bring to all of us.
That extra little something (Trisomy 21 to be exact), gave him an extra does of love (or stubbornness depending on the day ).
He starts the “K” word this summer. And we know he’s ready (though I still am not!). He enjoys books and is apparently already trying to plan what he is going to be when he grows up (as evident by the book in his hand).
He is a smart boy….
that loves to count…
…that will tell me how old he is (with attitude, of course).
…that will find his tongue more amusing than me while I try to photograph him.
….that is a little goofball who loves to make people smile and laugh…at random moments…
….that doesn’t hide his emotions and always lets me know when I have bored him. ;)
Happy birthday, my handsome baby boy, my little Codnado, my big ball of love, my little home slice, my sunshine.
Daddy, Mommy and DJ love you!
Last week, someone started their conversation with “can I ask you something personal about your son?”.
Most of the time, I know what this is leading to.
She had just met Cody the previous week. She knew nothing about his history, diagnosis or anything so I had an idea where this was going.
She then said “I don’t mean this the wrong way, but is there something wrong with your son?
“He has Down Syndrome, if that is what you’re asking.”
She comes from a different culture and had no idea what Down Syndrome was so I explained it to her.
“Can I ask you another question?”
“What do you think when you look at him"?”
I have NEVER been asked that question before. Knowing she meant no harm or disrespect with her question, I told her that I saw nothing but love, innocence and my son.
“Does everything that come with Down Syndrome ever get to you? How do you deal?”
Knowing that she has medical issues that she was dealing with, I know that she asked this as a means of finding out ways to cope with her own issues.
I told her that I know she doesn’t see a light at the end of her tunnel and that is what is stopping her from enjoying life now. Stopping her from enjoying the present, the every day moments.
She asked me how I manage to always have a smile on my face.
I don’t know. I think I am just programmed that way. :)
Honestly, though, after going through the heart surgery, the hospitalization for bronchiolitis and everything in between and after, I think if I hadn’t been able to smile through it all, I would be broken.
No one teaches you the internal mechanism for coping with stress or depression. They can counsel you until they are blue in the face, but for me, the only way to cope with situations is to accept it and move forward with a positive outlook.
She asked if there were times where I feel drained. Bet your bottom dollar, I do. I’m a mom not superwoman. ;) The anxiety of not being able to control situations that are currently non-existent is draining. It is almost a daily battle in my head to remind myself that I need to stop worrying about conflicts that I am not even facing (for example, worrying about Cody’s kindergarten experience – if it will be stressful for him – when I know it will be more stressful for me than him and he will just be happy to be at school active with his friends).
In the end, I purposely surround myself with people with the same positive outlook that I have for my family and life. Smiling and laughing are the best medicines for my soul and I hope that soon, my friend will realize the same for herself.
With Cody going into Kindergarten next year, I have been having a battle within myself trying to figure out what the best course of action is for him. Do I continue with him in Special Education where I know he will be well watched after and his specific needs will be met? Do I fully mainstream him into a “typical developing” class?
My gut tells me to try to do full inclusion because I think he will be fine. At the same time, my heart tells me that a typical kindergarten classroom is 1 teacher to 30 students and Cody will get lost somewhere in the shuffle or have a hard time adjusting to such a large class full of children still learning to adapt to curriculum, expectations and possibly for some, dealing with the anxiety of being in an educational environment for the first time.
I am probably over thinking this, right?
Recently, HBO premiered a documentary titled Monica and David, in which they follow the couple on their first year of marriage. Though I have not watched it yet, I have been reading and hearing about it from friends.
Monica and David happen to both share the same designer gene Cody sports.
One of the most powerful statements that I read was one from Monica’s mother:
“as parents, we want people to look upon our children with special needs like anyone else…And yet because we want to protect them so much, we are typically the first ones who treat them poorly by subconsciously denying them their rights to have a normal life.”
Honestly, when I read that, I cried. <okay, so I cry quite a bit, but this was for good reason. :) > It made me look at myself and wonder if I do things because it is in Cody’s best interest or because I am trying to protect him. How do I figure out when my decisions are based on which reasoning? How do I turn off the protective mother instinct that wants to make sure that Cody is not hurt, offended, discouraged, challenged beyond his capabilities or worse, not accepted. I know I can’t fight every battle for him, but how do I convince myself of that?
When I read the quote from Monica’s mom, it brought me back to my mental battle over selecting which educational road would be in Cody’s best interest.
When I voiced my concern to someone recently, she told me something that made me feel slightly better. She said that Kindergarten is a stepping stone into his education. Whether or not he is in a special education class or a typical developing class for Kindergarten will not affect his success in education. Migrating him to become fully included in a typical developing class can be a goal instead of a requirement.
She made me feel better and not so pressured (though the pressure was coming from myself) to rush him into full inclusion.
When DJ was in Kinder 2 years ago, the class sizes were 20 students to 1 teacher. If that were still the case, I would be more inclined to lean towards full inclusion. But to tell the truth, I would be scared to put my “typical developing” child into a class of 30 kindergartners. It just seems like a sink or swim situation.
I would love to hear what other parents have done to lay the groundwork for fully mainstreaming their children. I know we have many IEPs ahead of us and I would love any advice on how to make the most out of the IEPs and most especially, to know what I should be fighting or not fighting for when it comes to Cody’s education.
First and foremost, a HUGE THANK YOU to those that donated to Cody’s Gabba Gabba Gang team! We appreciate your support and are touched by the donations from strangers. From the bottom of our hearts, THANK YOU!
A SPECIAL THANK YOU to those that walked with us! It is heart-warming to have your support. It is further proof of just how much you all love Cody! :)
Our Team Captain was nothing but smiles that day. He must have known that we were there to show our love for him!
I’m not saying this just because I’m his mom (okay maybe), but doesn’t he have the most addictive smile??? I know you are smiling right now as you look at his picture. :)
The Co-Captain was ready to go, too! We had to explain to him that Co-Captain was not an abbreviation for “Cody’s Captain”. ;)
Papa and Mama came out, too!
One of Cody’s favorite playmates was there – my younger brother, Mitch. (By playmate I mean that Cody likes to try his new wrestling or UFC moves on his Uncle.)
And we were excited to have my cousins, Kenneth and Liezl, join us as well! THANK YOU for coming out early on a Saturday morning to walk with us! Next time, I will remember to bring donuts. ;)
If there is music, Cody will find it. And when he finds it he will DANCE his little tushy off!
This is the look you get when the music stops.
And he was off!!!! Look at the joy on his face. He walked about half way then lost interest in the walk. :)
Again, THANK YOU to all those that showed their support through joining our team, sending donations and messaging us with well wishes for the walk!
If you live in the San Francisco Bay Area, you may have heard of Dandelion Magazine. It is a magazine dedicated to parents of special needs children. It is a great resource full of information for therapies, activities, events, doctors and so much more.
I was honored, beyond flattered (and in tears from excitement) when I received an email from them a couple of months ago asking if they could run my post about Cody’s First ER Visit in the upcoming edition of the magazine.
Though my first instinct was to say yes, I second guessed myself because this was going to be a fairly widely spread magazine in the Bay Area and my personal experience with my full heart on my sleeve was going to be exposed.
Then I remembered why I posted it on the blog in the first place – to let other parents know that others have gone through their situation and that feeling vulnerable and hopeless during the situation is normal. Even though you feel alone in that moment and that no one could ever understand what you were feeling, there is someone that does understand and can relate.
That alone was more than enough reason for me to say “yes” to sharing my story.
The digital copy of the magazine was made available this week and I was excited to see my handsome baby not only in the article, but on the “What’s Inside” page!
The digital copy of the magazine can be found at: http://www.bluetoad.com/publication/?m=11210&l=1
It was a pleasant surprise to also see Baby Sofia and her touching adoption story in the magazine as well!!! (Cody has a soft spot for Sofia and calls her his “baby”. He loves to carry her and cradle her even though she is more than half his size!)
The article features a picture of Cody with is “James Dean” stare. ;)
It still makes me choke up when I see this picture of my boys. It reminds me of how blind and unconditional love can be. We worried that DJ, 3 years old at the time, would be scared of all the wires and tubes coming out of his brother, but he walked into the ICU room, walked straight to his brother’s bedside and grabbed Cody’s hand and just held on to it. He didn’t ask about the ventilator; he didn’t ask about the tubes or wires. He just stood there holding his brother’s hand.