Day 1 (2018)

National Down Syndrome Month....

What can I say that it hasn't been said before?? How else can I bring awareness to this diagnosis that lives in my heart?
I guess just by sharing with you my love and experiences with my Sunshine and maybe you'll get an idea, warm your heart a little and share the love, respect, and hopefully teach your own kids to be compassionate, teach them to be inclusive, teach them to respect what they don't know, and to help kids like mine when they come across in their lives.

So here we go.

I knew that Gabby had Down Syndrome since I was pregnant. I did all the testings available. I think for us it was the best decision ever. I was able to mourn the lost of a kid who would'be "normal", and with that the dream of having a kid doing the stuff the other kids would do... all the milestones from birth and beyond, the birthday parties invitations, the sports, the dreams of a wedding, the trips.... so many things I thought back then....
I did cry.... probably for a week.... and then I put my big girl pants, and I started researching what to do.
 I read may books, many articles online, and I learned about Early Intervention.
I needed to be ready, and get my confidence back, I needed to feel I was going to be able to provide my baby with anything SHE (yeah with the diagnosis the lady slipped the gender... I wanted a surprise...) was going to need and how Was I going to be able to provide it.

I was scared, I was nervous, I felt alone, I felt devastated... Did I mention how scared I was??
At one point during my pregnancy.... I went to my my backyard... and blew bubbles..... just that... silly, bubbles.....

No reason... but at that moment It clicked..... I was going to be a mom.... I was going to need help... it was ok not to know because no one comes with instructions, my mom, the angel she is, talked to me every day saying how much she loves ME, how good will it be once the baby gets here, how much my whole family was loving HER already....

the day that Gabby came to my life... OMG.... that was the day this scared girl became a fierce MOM...

The moment her hot body was put on top of my exhausted one.... I made a promise to her that I was going to have her back every single moment of her life.
I was so grateful she chosed me to be her mom.
I promised to love her forever....

we keep blowing bubbles every so often....

I still feel tired a bunch of times...

I'm still scared, but in a different way...

and I know in my heart that the tears I cried when I first got her diagnosis were necessary at that moment. I don't feel guilty for having to cry back then... because she is teaching me a new kind of love.
This love is pure, innocent, joyful, silly, crazy, unexpected, strong and more than anything unbreakable.

I'm lucky.  I'm incredible lucky to have Gabby in my life.

de regreso!

Han pasado muchos meses desde la ultima vez que me anime a escribir.

Estas vacaciones de verano me dieron la oportunidad de darme cuenta cuanto extrano escribir y compartir mis cosas... bueno algunas de ellas claro!

Gabby ahora tiene 13 anos!!! y sin duda esta actuando como una adolecente.
la mayoria del tiempo olvido su edad y que es normal que ella actue como lo hace,  es dificil porque llevamos tantos anos trabajando en su comportamiento por su diagnostico que estos cambios hormonales a mi se me olvidan.
pese a eso.. Gabby es mi angel y mi companera incondicional.

hemos pasado 2 meses muy contentas con la familia. Y por primera vez en mucho tiempo SIN terapias!!!
Ese fue el cambio mas grande. Gabby no ha tenido ni un solo tiempo de vacaciones nunca. Siempre hemos tenido cualquier terapia posible.
de lenguaje, motriz, arte, deportes, estimulacion temprana... siempre algo...
Y fue la primera vez que la vi tranquila y relajada.
y eso me dio a mi la oportunidad de estar igual... con uno que otro contratiempo pero la mayoria del tiempo muy contenta.

Gabby y mi mama me dieron la oportunidad de convivir con mis amigos practicamente todos los dias
y es que esta visita fue para llenarme de energia y estar rodeada de estas personas a quien extrano tanto
 Fue un verano muy divertido, muy intenso, y mas que nada lleno de alegria.

Gracias amorcito porque eres maravillosa

mama

pre teen???

There was a time where I thought that following all ABA therapy is all I needed to figure out Gabby... 

In theory that's absolutely right. Gabby's behaviors after many years using ABA were pretty predictable and many times I was able to use all the tools I've learned and apply them...

I was naive enough to think that's all there is to it... 

Except I forgot HORMONES.... Teenage behaviors.....

I know!! Come on!! I've work with them for years.... you'd think that's a natural thing to remember,

but maybe  I didn't pay attention, or maybe it's the fact that we deal with autism behaviors, made me think that we wouldn't deal with those kind of behaviors... maybe be excused of some of the usual burdens of life?

But sure our therapists just pointed out to me that after all, Gabby is just like any other kid out there, who will be having that part of life.

If you think about it.. yeah its annoying, but at the same time... Awesome.. another milestone of normalcy.

 She is becoming aware of her surroundings, she is starting to be ok to be around people even when her social skills are basic, and still needs support and constant direction, and care.

But the changes are there, she is moving forward. small HUGE steps that we celebrate and rejoice.

 you never know when the next silly thing is coming, when she will be sassy to mix and match her own clothes and shoes, or even demand a hair change....

I love her no other way around it. and I'm so glad I'm her mom

Gifts for the holidays...

December, LOVE this month. The decorations are out, the Christmas tree up and filled with loving decorations and ornaments we have bought through the years together, and many are made by Gabby. those are my of my most precious ones.

When I drive I have the radio on a Christmas station, love to hear those songs.

Happily enough, Gabby watches cartoons with Christmas themes too!!

But as always there is something I'm missing to feel like "everyone else"

You see, Most families stress about the holidays because their kids have a looooong list of presents to ask Santa. and you have to find the right outfit for the Christmas pictures so we can get the cards ready to send to all our friends and family...

In my case, there is no outfit, because she doesn't like any of the Stiff clothes for the season, and I don't blame her, neither do I. I used to dress up for the holidays, get my hair done, my make up and nails done. Not any more. I like to dress nice but comfortable because She will come kiss me and I love that she is comfortable doing it too.

We dont send the Christmas cards with a picture, because Gabby wont pose for a picture.. or at least we haven't been able to get a picture where she is not holding her ipad, or not using her headphones,

or just look up to the camera and smile.

but beyond those things... I think the one thing I miss the most is that Long list of presents. I have nothing in my list. Gabby never asks for anything. She is that simple and easy in theory.

As I walk around stores, I see those gorgeous dolls, with the pretty dresses and accessories,  I see the books, and the art supplies, and I see the many toys on displays.

Gabby hasnt ask for anything.

I know that I have to be really creative to find presents for her every year, but I wish I can give her something she really wants like other kids ask their parents.

I wish I can find the one thing she might like and hold for more than 5 minutes. and will bring a smile to her face.

People say careful what you wish for,... but I wish the best for her. everyday.

 

October and Down Syndrome

Yes I said it before. Gabby was born with Down Syndrome, I knew it way before she was born.
I did all the tests, the ultrasounds and even an amniocentesis test that confirmed that and the fact "it" is a girl.

I cried for the loss of a "normal" kid, I cried for the fear of what to do now. I cried for the fear that people would make fun of her. I was scared, I was feeling alone, away from my family.

My husband was my rock. He didn't know what to do either. But again... NO ONE knows what to do with a new baby anyways.
How many movies are out there making fun of the diaper situation? the bottle? the crying? the sleep walking in the middle of the night?
How many people struggle with their Regular kids from infants until adulthood?

We figure out well it has to be the same way. There are no manuals out there, Tons of books guiding you but non of them are specific to your own family or even one of you own kids. We are all different yet the same.

So when Gabby came to us, we were "ready" for the challenge, but excited for the adventure.

We started therapies as soon as possible, and I tried all different advises and recommendations from family and new friends.

Here we are 11 years later, 2 more diagnosis, and still learning to be her mom.
But one thing for sure... I wouldn't change anything about her.

Do I want her to be normal??  She is pretty normal to me!

Do I wish she didnt have Down Syndrome?  Maybe I did... I don't care about that anymore, she keeps me busy as it is now.

And I love her just as she is. She is my best friend.

Love you Gabby

Mom

First Communion with Special needs

 This was a very special weekend. A weekend I thought for a very long time it was never going to happen.
You see, to my knowledge most religions have a moment where they have some ceremony that re affirms their love and respect for God in front of their families, friends and their Chuch, temple or wherever they usually get together.

I remember as a girl, I was really excited for my first communion, I had special classes, learned new prayers, my mom  got me a beautiful white new dress, a hair piece and a veil, I had my bible, my rosary and my candle.
 I had my friends, my family and the church was full! then there was this party at my house where there was music, food and everyone was happy for me. Because I was able to do my first communion.

 The moment I know I was expecting a girl, I dreamed on her using frilly dresses, cute shoes, little handbags, I remember thinking I was able to do her hair and put bows and all kinds of girly things,
 Then I learned my girl had Down Syndrome.... things changed... but my dream was there, because  even with Down Syndrome, Gabby was still my little girl, and for a while I was able to dress her with the pretty dresses and shoes, with the bows and the girly baby stuff....

 And then... Autism arrived.... my dreams were there no more.... Gabby stopped liking those dresses and rather use a comfortable T-shirt and sweatpants, the shoes became Crocs and sneakers and the hair.... well.. I'm lucky if I can detangle it after washing it when she gets a bath.
   I tried to go to church she wouldn't stay....

"... The people behaves in a rare form when in Church. They sit and stand and kneel, they answer and sing. Sometimes the songs are happy and the music is really nice that makes me want to sing, there is also echo  and I love how my voice is louder and different with it... but people around me shush me... my mom  keeps telling me to be quiet... but its too long, I don't get what they are saying, is not fun.. they keep standing I think we are leaving but everyone sits down again... I'm so confused..."

 So I thought.... Could it be possible that my girl, the one under my believes was send to me by GOD, can be part of the Church with me? Could it be possible that she does her first communion?
and I asked... some people said yes sure why not, then others would say nah why bother with something else in her life, and then some others said... ask a priest they'll know better... and I did....

I asked a couple of priest in the US, and one that I thought because he was an acquaintance from back home and  said NO... because how can my kid would be able to understand the meaning of the Holy Communion Vs. a piece of bread. and does she understand what a SIN is? does she understand GOD, and evil and all those things that in a religion represent the good the bad..... Can she learn the prayers, Can she sit still during Mass?

 I google for other posts and websites about special needs and the church and I couldn't find anything positive. There are plenty of sites that have religion ideas to teach kids how to understand certain parts of religion...
But again. I'm just a mom, I'm not a therapist, I'm not trained to teach a lot of things my girl requires I need help.

And there it was, after feeling really upset, and almost give up that Gabby's girl scout leader, introduced us to Father Kindon saw Gabby for who she is and not for what she has.

I met with him and with open heart and mind he gave me the one answer I needed, with one word he restored my faith, and love to the religion I knew, for the reasons I believed.

In my mind, how can a kid with special needs be in someway a sinner? how can I kid like mine is denied to be with Jesus when I see my kid as the most pure of heart?.

And thats what he said too.

Gabby did her own training to get communion, With her therapists next to her, almost every day we went to church, She met with Father K. and practice Communion, practice learning about God and Jesus and the Virgin Mary. She even lights a candle.... or 10 .... and she hugs and kisses father K after she does her routine.... and we'll see you the next day.


Some days were adorable and cute, some days were intense, some others Gabby wouldn't go inside the church, some days she cried, some days she was so happy that she even hugs any other person who happens to be there! and more than I liked.... she would run out the door without looking back ready to go home...


And I still thought she cant be ready.... the doubt I had now was because I heard No many times... but Father K was always open to talk to me and ease my fears.

and we decided to go for it.

And here was the second hardest part of this.... who do we ask to come?
I have so many people I want to see this!!! I have so many people who WANTS to see this. Who love her and knows this is a big deal!
 and Husband said.... well if they know her and love her they have to understand that she doesnt do well with crowds...
But I still wanted to celebrate her.. this is a big deal!
But he was right, so In the company of her grandparents and therapists we went to church and Gabby was amazing!!!
She loved every minute of it.
I was, I AM very proud of her,

Even when she came home to hide in her room after all it was done....

Gabby may God Bless you every day, every night, every time.
May God gives me more time to love you and to help you in every step we have going forward in this crazy life.

I love you my angel.

Mom

Happy mother's day

We hear that every year, but really can we be happy?

 as a mom of an amazing girl with special needs I can say YES I am happy.  I love her so much, I care for her all the time, I worry about her present and her future. I get anxious thinking about the moment where  I wont be here to care for her.

 I make sure that her life goes as smooth as possible, that her needs are met, her wants are completed and that she has a smile on her face every single day.

 I have put myself on a second place more times than I can remember, but I don't care. I don't mind one bit about doing that for her.

 I have gone through so many meetings and doctors visits for her than for me in all my life.

 I have practically learned a new degree with ABA training to deal with Autism, that sometimes I regret not have done it during my college years...

I have skipped night outs and trade them for home dates with Husband.  Take in dinners instead of dining out and dress up.

I don't do my hair often, or manicures and pedicures.... but more than often I end getting a massage because she has pull my back again... 

I had been upset when she has dropped  on the parking lot and cars are coming in, or even walking to the grocery store and drop again because she refuses to walk in.

I have cried because she is not invited to birthday parties or considered to be part of a league with her classmates.... but then I remember how amazing is the feeling of her swimming laps at the YMCA with her instructor with no bubbles and that big smile that shows confidence.

I have enjoyed hearing her using her communication device to ask ( most of the time is a demand) for goldfish crackers or more cereal  and every time adding PLEASE at the end.

I have really feel proud of her when she was able to show off her counting skills, her spelling of new words and her reading of new words too.

I have loved to see her painting, biking, swimming, playing soccer, basketball and even tolerate me to do her hair with a new brush.

I love hearing her progress report and hearing how many goals she has mastered this month, and how many new goals are we going to add to her programs.

I love that despite her diagnosis she has people who loves her as she is and has friends who don't see the label and had ask for a playdate with her.

I love my husband who works so hard for me to stay home and be her mom.

and I love my family who pushes me to keep on going and NEVER give up

I love her teachers, I love her aides, I love her therapists and her doctors too....

It has taken a village to help me raise this kid... and honestly How can I not be happy?