Saturday, March 26, 2016
Someone pretty amazing in our lives did something wonderful. When thank you isn't enough, what do you do? Well, one of my favorite things are words. When someone takes the time to write me a sentiment in the form of a note, a card, a letter or even a text theses days, it means the world to me. So this is what I've decided to do for Tom. Simply, write..
Mr. Tom Chea is my Sophia, Andrew and Emilia's Taekwondo coach. We all met last summer. It was quite unplanned as we weren't looking to take TKD classes,but somehow that's where all three ended up. Andrew and Sophia took to it nicely and made it all look easy. Em on the other hand was going through a tough time. A new school for Kindergarten, followed by yet another new school for first grade left her confused and basically pretty pissed off. Her behavior showed this by her lashing out at children. She hit and grabbed and even tackled others to the ground. Unprovoked and almost always without warning. Mr. Chea had her start class with children her size. She was awful! She was all over them. I was devastated for my Em and apologetic to the parents of the kids she mauled. I thanked Mr. Chea for the class, apologized for her behavior and promised never to take Em back. What he said to me that day, still makes me cry. I couldn't believe what I was hearing. His exact words were, " No, take her back next class, she has to learn."
She has to learn... And was he volunteering to teach her? Did he actually think she was going to listen to him? She was horrendous! Yet, he wasn't phased by it, and still wanted her back in class. I was worried about the other parents being mad, he wasn't. I was worried about her behavior, he wasn't. I was worried the other children would be upset, he wasn't. I was worried she wouldn't listen, he wasn't
I seriously could not believe the faith he had in my girl. I left that day, and just cried, and cried and freaking cried. I was overwhelmed that someone we had just recently met would take such a chance with my Em.
So, classes continued for Em. And Mr. Chea was right, she did learn. Her behavior improved. She still has moments when she hits but the kids are great. They've learned, because Mr. Chea has taught them, that they need to watch her, (and running away quickly helps). They understand, because Mr. Chea explained to them, that she really doesn't mean to hurt them when she hits. They are patient with her because Mr. Chea shows patience with her. It's beautiful to watch.
Mr. Chea and Em soon developed a very special relationship. It's amazing to watch them together. I will go as far to say he knows her as well as I do. She says his name about 1000 times a day, and so do I... as motivation to get Em to listen to me! The threat of not seeing Mr. Chea is too much for her to bear.
Yesterday, I was given the most beautiful surprise. Tom created the most unbelievable video of Em. I had no idea he was doing this and when I saw it, well, you all know I cried. It's one of the most beautiful gestures anyone has ever offered.
Tom, I can never, ever convey my feelings adequately to you for this video. You see, it's not just a video of Em's amazing progress in class. In a world that shuns special needs and where most babies diagnosed with down syndrome are aborted ,this video is a voice not just for Em, but for all people who are differently abled. This video shows everyone that it doesn't matter, nothing matters. No diagnosis or special need has to stop you from doing what you want. Tom, when I found out Em would be born with Down syndrome I was pissed. I couldn't understand why God would wait till child number 5 to do this. In my mind it would have been better if she was born first. I couldn't see how I could take care of her and still have enough time for the other 4. I decided that this little bundle would just have to keep up with us. We were not going to slow down for her. We always treated her like she was our 5th child, not like she was our 5th child with a disability. And you do that too. Thank you for expecting the same from her that you expect from all your other students. It makes her strong and independent and confident. Thank you for being an advocate and a voice in Em's life. Thank you for loving her. She is limitless.
Because you believed in her at her worst, we all can marvel in her at her best.
Saturday, October 31, 2015
I've never been a big fan of Halloween. Even as a child I never got into it. I went trick or treating and when I had my kids I dressed them up and took them out. We decorate and carve pumpkins but I seriously could do without it all. Now, thanks to Em October 31st has a whole new meaning....
When Em was born on Oct 22nd she was fine. Healthy and pink and good to go, but something happened a few hours after she was born. She was born at exactly 5 o'clock pm. Number 5 at 5 . Yeah, I was watching the clock while in labor! Anyway, at 11pm I sent her back to the nursery so I could sleep a bit. She was feed and swaddled and content. At 2 am a nurse came in to tell me as gently as she could that Em was taken to the PICU. She wasn't breathing properly.
As I sat in my room, watching each minute go by, I remember being extremely calm. I was waiting for the panic to overwhelm me but it never did. I just calmly waited thinking all the time that after everything we'd been through there's no way we could possibly lose her now. And if it was(God forbid ) a life threatening situation they would never leave me sitting here.
Finally, I was allowed to see her. Let me tell you, walking into the PICU was one of the hardest things I've ever done. It takes your breath away to see babies in such extreme medical conditions. The lowdown on my Em was that she basically needed to take a deep breath to open up her lungs. She wasn't taking in enough oxygen on her own thus most likely causing her to turn a pretty shade of blue in the nursery and alerting the nurses that she had an issue. Compared to the other sweet babes in the PICU she was fine!! It was just going to be a matter of time until she figured out this breathing thing on her own and once she did she would be free to go.
So, she rested comfortably with the help of O2 and then a feeding tube was put in because she decided to boycott eating. That didn't last very long, maybe a day or two and then she realized the bottle was a lot better than the tube.
The hardest part was leaving her there after I was discharged. Leaving the hospital empty handed was painful, even though I knew she was ok. Riding home with an empty car seat, and sleeping at night with an empty crib was very difficult.
Unfortunately, I didn't have the option of staying with her. I had 4 other little ones at home who needed me. Peter and I split shifts at the hospital sitting and holding and loving on Em while the others held down the fort at home. I got used to the bells and whistles that were constantly going off on monitors, but I will never get the image of a baby coding out of my mind. The rush of doctors and nurses, the orders being shouted, the absolute synchronized way the entire team flows together around the tiniest of humans all working together to bring him back. There were days when I walked in and saw the empty bed, that just the night before held a baby no bigger than my two hands. My heart breaking for the parents left without their baby .I actually felt guilty for having such a healthy baby. That sounds stupid but if you sit there and see what people are going through, hear the conversations between doctors and parents, and hear their cries, you'll understand. I remember, one day searching the PICU for a certain baby. I wanted so desperately to see that they just moved him to a different bay. But he was gone. I sat there holding Em trying so hard not to cry. Meanwhile ,friends cooked and helped out at home with the kids. I could never have done it without them. We are so blessed with friends that have become our family.
Nine days later she was breathing and eating like a trooper. It was Halloween.
They wrapped her up , and I was finally able to dress her in her going home outfit, the nurses gave Em an orange and black hat and off we went.
She's never looked back. Em was extremely lucky to be born with very mild health issues that cleared up on their own. She had a small hole in her heart which has since closed. And a right bundle blockage which basically has dumbfounded the doctors. It's an irregular heartbeat that can't be treated but has no repercussions. People usually get them when there has been some trauma to the heart like a heart attack or surgery. Em being born with it is odd, but hey, Down syndrome is known for throwing curve balls. Her doctor had a great way of explaining it me. He compared it to an electrical problem in your home. All the light bulbs in your house work when you flip the switch except the one in your closet. That one takes a second to come on. You probably won't even notice the delay. So her little heart is good and so is the rest of her.
Have a wonderful night tonight! I hope you get tons of candy, enjoy your parties and win best costume contests!
I will be with my littlest love, remembering how lucky we were 7 years ago tonight to be able to bring her home, healthy and happy.
Saturday, October 24, 2015
Seven years ago my world was rocked by a 6lb 14 oz bundle of pinkness.
But before that, my world was rocked by a diagnosis of Down syndrome. I don't want this post to be about that as I've written about it many times. But I do need to state that, I let that diagnosis almost destroy me. That was stupid. I was scared, I shouldn't have been. If you are dealing with a Ds diagnosis seek other mothers and families who have a child with Ds for support. If I had done that the last five months of my pregnancy would have been a joy instead of a nightmare. That said , on to what I really want to write about....
On October 22nd my baby turned 7!
I blinked, that's all it took for seven years to go by. I started this blog when she was 6 months old. I was so amazed by her that I needed to share her with whoever wanted to read about our day to day lives, and loving to write, a blog made perfect sense. We'd get up early, me with my coffee, her with a bottle and I'd write. One day when I'm gone the kids will have this. It's good to write things down. What the mind forgets, words will bring back to life.
So, my Sweet Em, here are a few things I want to say to you. One day you will be able to read them all by yourself.
First, my Sweet, thank you!!! Thank you for taking my fear and making me fearless! You have given me so much more than I can ever give you. Every day you are a constant reminder that I can do more. I don't settle any more, I insist on pushing myself out of my comfort zone. You are faced with challenges every single day. Most people don't realize how hard you have to work at so many things. I remember when you were learning to climb stairs. Your PT and you battled it out. You wanted to do it your way, and she insisted you alternate your legs, the correct way. Oh my God you were so stubborn! Finally one day she took the gate off (that blocked the stairs), looked at me and said get rid of this. My first instinct was to ask her if she was insane, but I listened. She put you at the top of the stairs, stood in front of you and down you went, all alone. I believe we celebrated with cake!
Thank you for teaching me that the "perfect" family isn't about anything I thought it was. Perfection is a messy home, a loud house, running children, insane schedules, constant noise. It's laughter and crying and even fighting.
It's falling into bed and being asleep before your head touches the pillow, and getting up before the sun. It's taking a head count every few hours and hoping you come up with the same number; and if not, trying to remember who's missing and where the hell they are. It's chaos at all times and it's "perfect".
|a very rare photo of all 6 kids together.|
The first time you said Mama, was the greatest moment of all. I waited years longer than most moms to hear that word. It still brings me to tears to think about it. That sweet little voice of yours finally called out for me. My heart melted. That was a good day!
There was the day you learned to climb the rock wall at the playground. One day, that's how long that took. You were so happy with your accomplishment!
And now you are learning TKD. I know right? So cool. Your axe kick is freaking amazing! It's your happiest place to be.
You literally start shaking when you see the building. You're treated like a princess there and sometimes I have to walk away because I feel like I may cry. It makes me so happy to see how much joy a simple class (when taught by the right person/persons which we are blessed to have) can bring you. You are doing such a a good job at learning to be gentle with the other kids... We're all so proud of you.
You continue to teach us, guide us and make us stronger. Oh , there are days that you push us to our limits! You have mastered how to be the annoying little sister, and you definitely know what drives your mother insane. My stress level is higher, my alcohol consumption is up, and my social life is nearly dead but I wouldn't change a thing. You are magnificent Emila Faith and its and honor to be your mother.
You are loved Em, You are loved Fiercely
Tuesday, July 28, 2015
I'm so behind in posting !!! Summer always has a way of grabbing me and leading me in other directions.
I'm easily lured to the outdoors. The warmth of the sun is to enticing!
One moment I cannot let go by this summer without writing about is my Sophia's birthday.
On July 6th she turned 16!
How and when all that growing up happened ; I cannot tell you. All I know is, she is suddenly a beautiful young woman.
The world is yours for the taking Sophia! There are so many different directions you can go.
Life can be difficult and stressful but there is so much beauty in every day. Don't miss the good things! Sometimes you have to look for them and sometimes they are right in front of you. Be careful to not overlook them.
You are beautiful and I am so proud of everything you have done and are doing!
You have no idea how loved and treasured you are. You won't realize it until you have your own children, but you fill my heart with joy! (and other things , but that's all part of growing up, lol)
You are amazing! Tell yourself that everyday! You can do whatever you put your mind to... add that daily. And never forget that all of heaven is rooting for you! That , you can tell yourself 100 times a day!!!
Love you more,
Tuesday, April 28, 2015
"The bond that links your true family is not one of blood, but of respect and joy in each other's life". Richard Bach
Hellos are so much fun, goodbyes are impossible.
Last September our family grew by one . One remarkable young man. Olivia met Jorge at Festival Ballet Providence during their Summer Intensive Program in July and he was offered a contract as a Trainee in the Company. He was 18 and adorable and needed a place to stay as he is originally from Philadelphia. He and Liv were already inseparable and , well she can usually persuade me into just about anything, so Jorge became our Plus1 (as we affectionately referred to him).
I remember meeting him for the first time after the Summer performance and praying that when he met Emmie he wouldn't back away, or feel uncomfortable. I know that sounds silly for most but if you have a child with Down syndrome or any disability, you know what I mean.
Anyway, he melted my heart when he immediately reached out to her, addressing her as "boo".. Dear God he called her boo! I loved him from that moment on. And so did she!
He blended perfectly and effortlessly into our home and our lives.
Jorge brought so much into our lives. I mean, I thought we were the ones helping him out but in all reality we benefited so much more from having him with us.
Some of the perks of having an amazingly talented dancer/choreographer/all around super person living with you.
1. Your daughter will have an amazing piece choreographed for her for Grand Prix.
2. Your little one will be taught how to properly twerk. That was a questionable perk at first but after watching the two of them during a "lesson" I was sold. Twerk away!
3. We are all better trained in how to defend ourselves. One quick, clean shot to the throat should give you enough time to run away should you be attacked. Thank you Jorge, Emmie is the best at this but better not take it to school!
4. We were turned on to new "quality " TV shows like Love &and Hip Hop. One day when everyone was out I sneaked a peek. Morbid curiosity got the best of me.
5. When the girls stress me to the point of not being able to breath, Jorge is the one to walk me through the chest pains. "Breathe Mama, breathe" ...he would say.
6. I knew he would watch out for the girls. I always wished they had a big brother.
7.Andrew finally had another boy in the house! Being the only brother with 4 sisters at home is beyond difficult.
8. Bella my "punk" finally had a soul mate. They were the same person, I swear! And he even made Sophie laugh.. no easy feat.
9.His laughter was contagious! Anyone who has heard the boy laugh knows exactly what I mean. What a freaking laugh!
10. You got Happy Birthday sung to you in Spanish. Jorge, Sophia's birthday is next!! You better call her and sing to her!!!
11. He made us happy.
The best times were just hanging out at night on those rare occasions when everyone was under one roof at the same time. No idea why, but it always led to dancing..
Sweet boy, you will always have a family and a home in Rhode Island. I know your talents will take you far. So much awaits you. There is no doubt in my mind you will find success in what you love to do. I can't wait to see where life takes you.
See you soon,
Love , Mama
To read more about Jorge the dancer you can go this blog,Setting the Barre, Kirsten is also a dancer at Festival and wrote a beautiful post about Jorge from the dancer perspective. Kirsten also has a link to the piece he choreographed for Olivia.
Friday, April 17, 2015
Cinderella didn't dance as much at the ball as Emilia Faith did at her very first Father /Daughter dance.
The night was MAGICAL!!
I found the puffiest dress in the word. A pale blue. She took my breath away.
Her shoes, unlike Cinderella's, fit her perfectly and were so comfortable that she was able to dance the night away in them and still make it home with both of them.
She was a little reluctant to sit for a photo shoot before the dance,and it showed...
But when her Prince Charming entered the scene her attitude quickly changed
And just like that , they were off.
And it's a good thing there were no spells involved with this fairy tale because Princess Emilia was out waaaay past her curfew. She arrived home sleepy, and still smiling.
As I put her to bed,the dreams were already forming in that beautiful little head of hers, of The One Enchanted Evening she had with her Daddy.
Monday, April 13, 2015
19 years ago I married a guy who really had no idea what he was getting into. Thank you Peter for not running away when you realized your Princess was really the Evil Queen. (but with a good heart)
It's been a hell of a ride. We have been through things I never imagined could even happen. Highest of highs and extreme lows.
We've had dreams come true and we've watch dreams shatter.
We've picked up the pieces and moved forward so many times...
Marriage is HARD. It's frustrating and leaves you frazzled!
But, it's worth it. Because I would never want to go through this life flying solo. When good things happen it's you I want to celebrate with,and when the shit hits the fan it's you I run to. You're my friend, my lover ,my confidant, my punching bag and all around much needed guy in my life.
You tolerate my weirdness with saint like patience.
19 years and counting.. there's no one else I'd rather tuck and roll through life with!
Happy Anniversary Peter!