May Sarton (via journal-of-hope)
Perfect with today’s previous entry
The best advice I have ever got, was always from my mother. Even though I was too young and too immature, perhaps, to listen to her. As I grow older I have those “Oooooohhhhhh” moments, and everything makes sense. I miss that.
After we got on the right track with Umberto’s treatment and he got stronger and healthier, we started to go out more and just enjoy life. He always enjoyed the car ride and so off we went.
But regular outings, like going out to eat, were never just like everybody else. With his feeding tube, his wheelchair, his facial and physical features.
People ask “what’s wrong with him?”
My mother used to say, there was nothing worst than that question.
She disliked the word “normal”.
She said, there was nothing worst than watching people judging your child.
Until one day, someone asked “Is he retarded?”
Yup, that was worst.
It took so much out of us all, to watch people laugh at Umberto and then watching him waving “Hello!” with a big smile, to those very same people. It was beyond a lesson.
My brother never judges. Ever. Ever.
Judgement hurts so much. But I will never know if it hurt more on us or on him.
He doesn’t speak sentences. He has his own language, which has been developed throughout these years. I don’t think that bothers him. But it hurts me to know that, as a big sister and protector, he isn’t able to come to me and say “Sis, someone called me this, someone did that”. It hurts me so bad.
We never treated him differently. We never threw him a pity-party.
Mom never allowed that.
She pushed him forward everyday, she made him go that extra mile.
We found an amazing school for him.
The kids there have all different diagnoses. The classrooms are small and the teachers can really focus on the kids.
Some have physical disabilities.
Some have mental disabilities.
Some have both.
Umberto had many ceasures as a baby, that really pushed him back development wise.
After years at school, Umberto never used a wheelchair again. He walks and jumps. He never used his feeding tube again, its all gone and closed up after a surgery, he eats SO much. Everything. He has friends, he dances, he sings, he paints, he was even a little fish at the school theater.
The first word he has ever said was my name.
Ca-Ca = Carol.
He points at me “Ca-Ca!”
He sees my picture “Ca-Ca!”
I don’t think there’s anything I can brag most about but that my brother said my name first. That’s pure love.
He’s very pure, he sees the good in people. He lands you a hand even when he barely can help himself.
The most beautiful thing I have ever seen, happened when my mother and I went to pick him up from school one morning.
The three amigos.
My brother, limping and balancing himself holding hands with his best friend, on the wheelchair in the middle, holding hands with their best friend limping balancing himself on the other side.
The three sticking together, patiently walking with each other side by side. Landing a friendly helping hand.
He did that a lot. He held hands with everybody. We never understood if it was to help himself or to help whoever was with him. Either way, to me still the most amazing thing. Another lesson.
Mom always said he is our biggest teacher.
So whenever I see someone looking at him differently, I remember that, he doesn’t feel feel about himself. He doesn’t think he is any less than anybody.
I think it is because deep inside, his soul is so blessed and enlighten, that he knows he is the one looking after us.
To my amazing brother, to all of you who ever felt “different”
I admire you, and I thank you.
And if you don’t hear this enough, I’m proud of you.
Your Sister, Your friend
- Costello syndrome is a rare genetic disorder
-Delayed physical development and mental retardation are the most distinguishing characteristics of the condition
-The birth weight of a child with Costello syndrome is usually normal or a little above average, however they will grow at a slower rate than most children
-The life spam of a person with this syndrome is unknown. The oldest person diagnosed on record, was born in 1960
-Until this day, there is no cure
Umberto was born with Costello Syndrome.
My mother’s only baby boy, was born with Costello Syndrome.
My very own little brother, was born with Costello Syndrome.
Until he was diagnosed, a whole year went by. Doctors, exams, needles, tubes, tears, confusion, frustration. Pain.
I remember one night, my mother holding Umberto on top of a pillow, so little. She said “come give him a kiss, we are taking him in again, I don’t know what is going to happen”. I grabbed his little hand, it just fell flat. Barely a pulse. He was getting skinnier and skinnier. Weaker and weaker. Spent days, weeks, months in the hospital.
We just wanted a diagnose. A name, something to call his condition. A treatment. Hope.
He started with a nasal tube that would feed him formula. It was always there, taped to his little face. But it was making his stronger. But not quick enough. We almost lost him again.
A more effective procedure was done. Surgery. A feeding tube attached to his stomach. Looked like a little “button”. He had many complications with that. More surgery. More weeks in the hospital.
Everyday I went to visit him, never once, he didn’t smile. You see someone you love beyond words laying on that bed, tubed up, strapped up, drugged up… And smiling. I still until this day, feel absolutely ridiculous to complain about anything.
My mother was a machine. Never stopped pushing us. Never threw herself a pity-party. Never allowed us to treat him any different.
It was a bump on the road and we were getting through it.
It was the biggest bump I’d ever gone through.
We all wanted to switch places with him again. Why him? So little!
We could’ve taken the pain, we were adults!
Maybe we couldn’t.
Because Umberto is our warrior. He is much stronger, kinder, happier, beautiful, perfect than anybody I know.
All people with Costello Syndrome are. It’s a tough battle to fight and they do it beautifully.
One day, I asked my mother the question you are not supposed to ask out loud.
“If you knew… would you have had him anyway?”
“Without a doubt. The only thing I would change, if I could… I would take away the pain. He’s perfect.”
She took away the pain. She didn’t know it, but she took away all of our pain. She loved us all the same. She smile through the tears, she held us together. She never allowed herself to fall apart for more than a couple of minutes. She never gave up.
We will never give up.
To all my Costello parents kids and young adults,
My deepest respects and honor. To all that were here even for a short time, you and your stories have the biggest impact in my life.
I love you all, and I hope this do you all justice.
Your friend, Big Sister and Daughter
Facebook Costello Group: https://www.facebook.com/groups/6082644521/10151428136754522/?notif_t=group_activity
— Mary Elizabeth Frye (via nottoreasonwhy)
— Lemony Snicket (via grief-observed)
— Lemony Snicket (via awatsup)
The interesting thing about grief is that it is it’s own size. It’s not the size of you. It is it’s own size. And grief comes to you. You know what I mean? I’ve always like the phrase- He was visited by grief, because that’s really what it is. Grief is its own thing. It’s not like it’s in me and I’m going to deal with it. It’s a thing, and you have to be okay with it’s presence. If you try to ignore it, it will be like a wolf at your door
In the past I would always think of my self loathing as a symptom of something wrong with me. That is, I thought it was in me and I have to deal with it. And my repeated failures to deal with it just made me feel worse
It’s far more straightforward to want to attack the negative feelings I’ve held close for most of my life. Get rid of the negativity. But the strategy that has actually worked best for me was to find happiness independent of my depression. And little by little positive things took more and more focus until the negative was no longer dominant. Relevant yes but not dominant."
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