Monthly Archives: December 2016

2016 in review

As I sit here trying to recover from this Influenza that took over my body, and watch my sick little one, who has a different virus than mine, using his energy to keep jumping, I try to go back and put into words how this year was to me.

I can say without a doubt that 2016 was one of the hardest years of my life. I know I’ve been through some dificult times before this year, divorce, moving to another country, broken heart, fertility issues and treatment, miscarriage… and the list goes on and on, but nothing compares to that moment when you realize your child has a diagnose that could potentially interfere with his life forever and not only that, the struggle in getting the help he needs in order to have a more normal life. Perhaps even harder than the diagnose itself, was the burocracy and sometimes the lack of compassion from others. Nothing makes you feel more hopeless than looking for help and just getting obstacles, things that are completely out of your control, and there is nothing you can do besides wait and hope for things to work out in your favor.

Although there were a lot of hard times following Guto’s diagnose, there was a lot of learning as well and I think that’s what 2016 was all about: LEARNING

This year has taught me a lot. PATIENCE is for sure the number one lesson of 2016. Me, a person that hates waiting, really had to learn to do just that! However, the rewards were completely worth the wait. The first time Guto said mamae, or I love you, or gave me a hug willingly. I would have waited for all this forever if I had to, but I sure am glad I didn’t have to wait that long.

I learned a lot about myself, I learned that I can be stronger than I ever thought I could. Learning what a mother is capable of doing for her child. I learned so much about people… about frienship, loyalty, respect… some in a good way… some not. I learned about priorities and learned about AUTISM, though I know I still have a lot to learn.

I learned that crying is not a sign of weakness, but a sign of strenght. I learned that sad cry is as important as a joyful cry and sometimes it is the only thing you can do to keep you sane. I learned that getting overwhelmed or tired doesn’t make me a bad mom. And that it is ok to ask for help even though it is not always that you will find someone willing to help you out and sometimes you just have to suck it up and keep going.

I learned that expectation is what really makes you frustated, and sad. The smallest achievements are sometimes the greatest and all of them should be celebrated.

And I learned more about love. Love that cannot be measured. Love that has no words. Unconditional, pure love.

So looking back at 2016, althought it was a a year with some great challenges it also had a tremendous amount of joy and happiness. And that’s what I will be wishing for 2017, that even with all the hardships we might have to endure, we will never forget to count our blessings. I feel so blessed for being Guto’s mom. Our family is blessed for having such an awesome boy we can call ours. Just watching him jump and smile close to me makes me realize just how perfect he is.

May your holidays be full with blessings and may you heart be full with love and peace. From my family to yours.

It is gonna be OK

It is amazing how God works in our lives and puts people on our path without us noticing. A few years ago, I met Luciana, whose daughter is autistic, on Facebook when she sent a message to a group of Brazilians that live in Arkansas. She was trying to get her daughter an appointment at the Autism Clinic at the hospital I work. Some of the people I know replied to her in an effort to help, and of course I did as well. She told me a little bit about her daughter and how great the doctors were there and that she really wanted to bring her little girl here, but the waiting period for and appointment was extremely long and she was afraid she was not going to be able to get in. I tried to help her getting an appointment, sent e-mails, called the local phone numbers I had, and even talked to people I knew. Unfortunately, we were unable to make it happen. If I had only known God was crossing our paths to prepare me for what was yet to come.

A couple of years passed by and then, here I was, my turn to be desperate and looking for answers. One of the first persons that crossed my mind when I found out about Guto’s diagnosis was Luciana. I needed to contact her again. And that’s what I did. I sent her a message and told her what was happening and how glad I was that God had put her in my life a couple of years before. She was awesome. She completely understood exactly where I was coming from since she had been through the same thing. She made me feel so much better and gave me so much hope. She told me about the things she had done and doctors and exams she had been through. And she reminded me of how lucky I was to be in a place where they had so many resources. I felt a sort of relief and a sense that “everything will be ok”. I am so thankful for her.

Last week she sent me a message and I had to ask her if I could share it with you all. It made my heart so full and I am so glad she allowed me to. Here is what she wrote me:

“Today is a very special day. It is the first stage of Larissa’s literacy graduation. (There will be two events on consecutive days). Four years and eight months ago, even in my most optimistic dreams, I could not imagine that moment. Not the way it’s happening. At that time, Larissa was diagnosed with autism. It was the same month she turned 2 years old. I can say, without fear of making a mistake, that it was the worst month of my life. But the crying didn’t last long. I had no time to cry. I had to run. Run to look for therapies, doctors, drugs, exams. Run to study, study hard. While seeking for help, I called the mother of an autistic boy who was 9 years old. I called for information, tips and clarifications. I had seen a lot on the Internet and was between optimistic, confused and mostly scared. This lady, even though she was very kind, was a bucket of cold water. She was bitter, unaccepting, apathetic. She told me something I’ll never forget: “I was once like you, but there is no way, it’s genetic like Down Syndrome, it might even improve somewhat, but it will always be the same way.” At the time, I was in shock and I just wanted to cry. Then I thought to myself “Was that it? Could anything else be done?” I listened, and listened and came to the conclusion she felt hopeless (I had not finished the call yet). She was not a bad person and was not being cruel. In her opinion, she was doing me a favor by putting my feet on the ground. When I hung up the phone, I no longer felt like crying, no anger, no pity, nothing … I did not judge. I did not suffer what she suffered, nor did I go through her problems. Who am I to judge someone? Ah … but if she only knew, if she could imagine what would happen in the future … Larissa had therapies (speech, OT and PT) 3 x per week. I decided to always be her “psychologist “, this way she would have therapy all the time. She had orthomolecular treatment, a strict diet, lots of stimulation at home with me and Bira. She scored a 71 on first assessment scale of autistic symptoms (ATEC). She has had many other evaluations done by a multidisciplinary team, but I mention this one because it is an evaluation filled out by the parents. Although she already had a few months of therapy she still scored a 71, so I’d risk saying that if we had done it before, it would have given us a higher value. 71 is a value that indicates moderate to severe autism. By this scale, those who score above 10 are already in the Autistic Spectrum. Below 10 are considered recovered from the symptoms (not cured since there is no cure for autism as far as we know). Today it is with great joy that I can tell you Larissa scored a 6 in her last ATEC evaluation! Look, it was not easy at all, it never is. It still isn’t easy today and it may never be. It is not easy for the so-called “normal”, so imagine for those who have some limitations. But I say with the conviction of one who has studied the subject for almost 5 years: autism is treatable! And looking at everything that has happened in over four years (and a lot has happened), I am thankful and always thank God. Larissa is a Greek name that means: the one that brings joy. And how happy I am to be her mother! It’s for her today that I say: Daughter, this graduation is not your greatest achievement, because you had so many in this period… But it’s such a happy moment for you and for all who love you, that we will forever keep it in our hearts.Congratulations Larissa, you deserve this diploma.”

larissa_fotor

Larissa congratulations on your victory. This is one of many to come! You have so much potential and so much to show and teach the world. You are a star! I am so proud of you!!!!!

I have no words to say how happy I was to be remembered during such a special moment. And how hopeful I am about Guto’s future. I am so thankful that, different from Luciana, I found someone that gave me hope and showed me autism may have its challenges, but it also has so many beautiful and joyful moments. I hope one day I can be to someone what Luciana has been for me. The light at the end of the tunnel, the hope needed, the optimistic side of a dark moment. I remember she told me “You will cry a lot, I still do and it is ok to cy, you need to cry. Just don’t give up and everything will be OK.” You know what, I believe her!