Monthly Archives: August 2016

Say a little prayer…

A photo by Aaron Burden. unsplash.com/photos/df47UDrfi8I

There are moments in our lives that help us realize the importance of things we usually take for granted. Life itself, for instance, have you stop to think how fragile and special it is?

I have to admit I have been mad at God for quite some time, or maybe not mad, but I have been questioning him for a while. Like this past weekend when one of our little patients passed away or when I first got Guto’s diagnose.

Some of you already know that I am a RN at a Children’s Hospital CVICU (CardioVascular Intensive Care Unit). I have the opportunity to work with some of the most amazing people I have known and some of the most incredible families and patients. We do everything we can to always have the best outcome possible, but some things are out of our hands and sometimes we have to deal with situations that are so difficult that is hard to cope. This last weekend was such a hard one for me and my co-workers.

Some things are hard to understand and accept, like diseases in children. I still have a hard time believing that my loving God would want a innocent child or a good family going through such a hard time. Not that I think anyone deserves bad things, but with good people it is even harder to accept some of the hardships they go through. Believe me when I say it is a hard time not only for the child but for the families too. During the time I have been working I had the opportunity to see some really happy and some not so happy moments. Like when a patient finally received a call saying the heart they had been waiting for 8-9 months is finally available, and when you see a child opening their eyes and smiling for the first time after an open heart surgery. Or when you finally say “see you around” to a patient going home after in the unit for many months. Those are the moments that make my job worth it. But then there are those few moments that make me question my decision to be a nurse. Every time we see a family say goodbye to their loved ones after a long journey of surgeries, procedures and ups and downs and so many prayers. When you see the despair in a parent’s eyes after knowing their little one will need a complicated procedure or surgery. Those moments are so hard to comprehend that it is beyond explanation.

Every time I go to work I pray that I can make a difference in the life of the patient and family I will be caring for. I pray that God gives me the strength and knowledge to make their lives a little easier and happier.

The families and patients have taught me so much. I am so thankful for all of them. Some of them have impacted my life more than they will ever know.

As I came home from work last weekend all I could think of is how blessed I am. I can’t understand why bad things happen to good people, then I read something in one of my patients webpage that made me think. “We may not know WHY now, but we have faith in God’s plan that there is a reason for all seasons of life.” If they can see a loving God without questioning in such a hard time, so should I. And for some reason those words put my heart to rest, and all the anger I had, somehow went away.

It made me think that even with all the struggles we will have to endure in our journey called life I still have a child that can breath on his own, a child I can hold and kiss, a child that smiles, a child that can walk, run and jump, a child that I can put to bed, I child that I can take to school, a child that can snuggle with me when we sleep, a child that I can feed, a child that I can hear laugh and cry, a child that in his own way can show me his needs. And more than anything, I have a child that I can love unconditionally.

For all of this and so much more I am blessed.

Today I ask all of you to say a special prayer to the parents, the little heroes and the little angels I work with. And if it is not too much to ask, say a little prayer for me too.

“Be joyful in hope, patient in affliction, faithful in prayer.” ~ Romans 12:12

We got a logo!!!

The Autism Speaks Walk is just around the corner and we finally got our logo figured out thanks to my wonderful friends Rodrigo e Luciana Barranco from Magic Press Corporation. I sent them some ideas of what I had in mind and they were able to deliver exactly what I wanted. Hope you all like it as much as we did.

We decided to go with the butterfly because we feel the symbology behind it is just perfect. It represents something that is unique and without a doubt every person with autism is unique. It is like they say if you know one person with autism, you know one person with autism. There is no one like the other. Guto is unique in so many ways, and he is beautiful just the way he is. The butterfly is about the transformation. Transformation that not only Guto is going through, but all of us around him as well. The butterfly antennae have hearts to represent our unconditional love for that amazing boy. We will always be there for him no matter what. He is our most precious gift from God. He is The Sweetest Gift of all!

We also used the puzzles because in my opinion the puzzles represent the pieces we need to figure out what autism is all about. It does not mean that my son, or another autistic person, is a puzzle in any way. My son is not missing any pieces, he is complete. Like I say before the puzzle represents the disorder and not the person.

So here is the logo we will be using in our blog and the T-shirts for the Autism Speaks Walk. Let us know what you think!

logo_tsg_img_high-2    sticker2_tsg_img_high sticker1_tsg_img_high

Autism Symbols

Getting prepared for the Autism Speaks Walk is something that is helping to keep my sanity. Our team is called “Veiga Racing for Autism” and the name was picked mostly by my husband. Racing is his passion and he promised me to help raise awareness about autism through his racing, which we thought was a good fit.

After deciding on the name we had to start thinking about a logo, and that’s when I started to research about autism symbols. We have an idea about what we want to use, but we need to have something that will make it easy for people to know what we are supporting. I also need to figure out a logo for this blog, so the research seemed appropriated.

What I found was quite interesting and also made me think about the meaning of the symbols used to promote the cause. The most known symbol for autism is the puzzle piece and here is what I found out about it.

The origin of the puzzle piece, the primary symbol for autism, goes back to 1963. It was created by Gerald Gasson, a parent and board member for the National Autistic Society in London. The board believed autistic people suffered from a ‘puzzling’ condition. They adopted the logo because it didn’t look like any other image used for charitable or commercial use. Included with the puzzle piece was an image of a weeping child. The weeping child was used as a reminder that Autistic people suffer from their condition.

NASlogo

It has been a long time since The National Autistic Society had a different vision on autism and changed their logo to a more positive one. The new one is a heavily stylized symbol of two figures reaching out to each other.

national-autism-society3

The puzzle ribbon was adopted in 1999 as the universal sign of autism awareness. Although this image is a trademark of the Autism Society, the organization has granted use to other non-profit organizations in order to demonstrate unity and advance a universal mission as opposed to any individually held interests or promotion of a single organization.

ribbon-large

The Autism Awareness Ribbon — The puzzle pattern reflects the complexity of the autism spectrum. The different colors and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope — hope that through increased awareness of autism, and through early intervention and access to appropriate services/supports, people with autism will lead full lives able to interact with the world on their own terms.

I found out a lot of people dislike the puzzle piece symbol or the Autism Speaks slogan “Until all the pieces fit”. They believe the meaning behind it is negative. Like a symbol of isolation, or that the person is too mysterious to be understood, or even that they are not a whole person, that they are broken.

To me the puzzle piece symbolizes autism, the disorder, not my son. It symbolizes the mystery of his condition and not him. We are all still trying to figure out so much about ASD and that is the puzzle I am trying to complete. “Until all the pieces fit” means that I will fight and look for answers until I stop breathing or until the ASD puzzle is complete! It doesn’t mean I want to fix him, after all he is not broken like some people think!

I really liked what one parent said the puzzle piece meant for him. He said that his son was the piece missing in his life in order for him to be complete. My son for sure came to complete my life!!!

Whether the puzzle piece is seen as a symbol of diversity and hope or a motif representing isolation, the design has a major place in the world of ASD. It is by far the most recognized symbol for autism awareness. I did find a couple of other signs and the meaning for each are really interesting.

The rainbow-colored infinity symbol represents the diversity of the autism spectrum as well as the greater neurodiversity movement.

NewAutismsymbol

The butterfly symbol represents something that is already unique and then it transforms into something even more beautiful. This has parallels with people living with autism, where we cannot judge what someone would be like in the future as transformations happen throughout their lives as they mature. As they blossom from their cocoon, their true colors of what they are surface and show their true beauty.

442230_orig                   AUTISM-Butterfly_S_original

There is a whole bunch of other figures that combined with the puzzle pieces somehow symbolize ASD and bring awareness to the cause.

Now I would like to know which symbols do you know and what do they mean to you?

 

Sources:

Autism Society: http://www.autism-society.org/about-the-autism-society/history/autism-awareness-ribbon/

The Art of Autism: http://the-art-of-autism.com/the-autism-puzzle-piece-a-symbol-of-what/

The many faces of autism: http://manyfacesofautism.weebly.com/autism-awareness-symbols.html

Autism Society Manitoba: http://www.autismmanitoba.com/news.php

KGB Answers: http://www.kgbanswers.co.uk/what-is-the-meaning-for-the-butterfly-symbol-in-autism-awareness/22806011

 

Spreading the news…

Autism Speaks is promoting a walk in Little Rock on October 1st and our family is planning to participate in it. I sent a request for a package to help promote the event and one of the suggestions to help build our team was to send an e-mail to family, friends and even a message on FaceBook informing everybody about it.

As I finished writing  the email to send to everyone I didn’t realize how hard it would be to hit the send button. Not because I am ashamed, but because I am terrified. I am terrified of the future, of how people will react, of how people might treat him after knowing his diagnosis. I am terrified people will walk away from us and I will feel even more alone than I already do. I am terrified of people judging him and even judging our parenting… I am completely terrified.

As I share the news with my peeps I know I am letting my guard down, and that I might get hurt, but at the same time it is the only way I can get help. How am I supposed to get support from friends and family if they don’t know what I am going through? As hard as it was, I forced myself to do it. I started by sending a message to some of my family members by telling them in a few words what was going on, and them invited them to know more by following the blog.  I decided that I should go slow… And little by little I was able to send messages and e-mails to a few groups of friends.

I was surprised with some of the responses and lack thereof. Some people didn’t even acknowledge my message. I wasn’t expecting to get a response from everyone, but there are some people that really disappointed me! Sometimes silence can do more harm than good. I understand some people don’t know what to say, but a “I am here if you need me” or “I am praying for you” would do. Some friends on FB only sent me an emoticon, and that was enough, no words needed. Maybe they didn’t know what to say either, and yet they said something by their action. Then there were those friends that took the time to write a line of support or even a long e-mail, which were really comforting to read. I almost forgot the ones that not only showed support, but also asked questions about it. It was nice to know that some people really care and want to learn more about the subject so they can offer more help.

As I sent the messages I realized how difficult and bumpy this road will be and I am terrified I won’t have the strength and knowledge to help him go through it…

“I thought I would have to teach my child about the world. It turns out, I have to teach the world about my child.” (Unknown)

Just breath…

Unsplash - Breath_Fotor

I know I haven’t posted anything lately, but I have a good excuse. We were out of the country for a month and the return to reality hasn’t been as smooth as I thought it would be. So let me try to update everyone.

We were gone to Brazil from the middle of June through the middle of July to visit family and friends. Guto did a lot better on the flight than we expected. Everything was going smoothly and he fell asleep after a couple of hours. But then he suddenly woke up somewhat in a panic and cried nonstop for almost 1 hour. We were not sure if it was because he woke up and got scared, since he didn’t recognize where he was, or if his ears were bothering him. Fortunately he finally calmed down and slept pretty much the rest of the way. On the way back he was a champ and slept on Joe’s lap almost all the whole way.

We had a busy month with him while we were there! We threw him a Mickey Mouse themed birthday party, had him baptized and got to spend lots of quality time with family and friends. He especially got to spend a lot of time with his six year old cousin Giovanna from Hawaii. If you don’t believe in love at first sight you should have been there to witness it. They clicked the moment they saw each other and Guto even went to her to giver her a hug. He had NEVER done that before! The two of them were together almost 24/7 and needless to say this momma had teary eyes almost everyday watching them play together.

The time we spent there went by so fast, but it was amazing, specially for him. We feel like the trip made a huge difference in his personality. I don’t know if it was the fact that he was constantly stimulated being around people most of the time, all the new places he got to see, or perhaps a combination of both. He even went on a helicopter ride around my hometown! It really was a memorable vacation for all of us, but as they say all good things must come to an end and so did our trip.

We got back in the middle of July and I had to get back to work a couple of days later. Joe was not as lucky as he had to get back to work the very next day to get things back in order. It was great being on vacation for a whole month, but there was a price to be paid being gone so long. There were a lot of fires that needed to be put out at Joe’s business, but he is managing to get things under control again. The house is still not quite back to normal as we still have stuff from the trip around the house that need to be put away.

We got home on a Thursday and Guto went back to daycare (Mother’s Day Out) the following Monday. In the past he would start whimpering as we got to the school parking lot and then he would start crying whenever we tried to drop him off. Well, he only cried for a little bit when we dropped him off on Monday and when Joe went to pick him up the teacher was bragging about how well he had behaved and pointed out that he didn’t cry the whole time he had been there! Joe dropped him off again on Wednesday and he had a wonderful day without any issues. He had speech therapy on Tuesday with a new therapist because his regular therapist was out on maternity leave and he didn’t cry at all that day either. This is solid proof that the trip did him some good and he is definitely making progress!

One week after we got back he had two more evaluations done, which included the Early Intervention Program to help pay for his medical bills and a meeting at the Dennis Developmental Center to get a definite diagnosis on his condition. I guess I was hoping against all odds that somehow I could have been wrong all along and that we were just dealing with some sort of delay that would right itself off over time. But on July 22, 2016 we got the formal diagnosis that we had been dreading all along. I know it was something that we were expecting, but it still wasn’t easy having Guto labeled as an autistic child. We were given a packet filled with information about ASD and programs that we should apply for in order to get financial aid because this can get expensive very quickly as we already found out.

Today we had a meeting with the Early Intervention Coordinator and a couple of team members from the clinic he currently goes to and based on his most recent evaluations his speech therapy sessions were increased from 60 minutes to 90 minutes per week and he will start 90 minute sessions weekly for occupational therapy as part of his curriculum. They gave us another huge packet with more papers to fill out. We never imagined there would be so much paperwork involved, but it’s just one of those necessary evils that we must deal with in order to give Guto the best possible tools to deal with his condition. I don’t think overwhelmed can begin to describe the feeling I have right now.

All I can think about is to tell myself “Belle don’t forget to breath, just breath.”

Image Source: Unsplash