A family that struggled so much: kids growing /Uma familia crescendo

Geovana, 5 years old drew me (the one at the right , the secretary of our center Val and the 3rd one is Lais the voluntary that plays with them. Thank you for drawing so cutely!!

I met Lucimara, in 2000, she was in her early twenties, single mother with a one year-old boy : Guilherme! this little one in the picture…he is now almost 9 and has going through several head surgery  because of internal bleedings when baby.Today, he is a smart kid, goes to school, plays with friends and has a sister Giovana, 5. Lucimara is a woman that I admire a lot.  She  grew up, learned everything she could about hemophilia, she did the course with our nurse Eliane to learn how to infuse factor to her son, she changed job, got a better one, and she is an independant woman.

I remember the first time she was in my little office at the Center and she was always so scared of any  normal movement of her little boy, afraid of everything….well, look at her face now

Conhecí Lucimara em 2000, quando ela veio fazer a sua primeira consulta para Guilherme o filhinho Guilherme, na época com um ano de idade. Hoje , como podem ver na foto ele é um fofo, esperto, leva a vida de qualquer criança de 8 anos! Mas se vocês souberam pelo que ele passou nos primeiros anos de vida: 5 cirurgias na cabeça , veia com acesso difícil teve que colocar durante 2 anos e meio um catéter e tudo isso com a mãe solteira, lutando por um trabalho mais digno, lutando por sua independência e  por uma vida digna. Giovana nasceu ha 5 anos e assim a familia cresceu.

Lembro da Lucimara na sua primeira visita, pulava da cadeira de mêdo cada vez que o Guilherme fazia um movimento !

olhem para a cara dela agora….!:) bonita e serena … THIS DRAWING IS FROM TODAY  at age 9! his flying motocycle and sportive car going home!!!

Women: proud to see their boys BIG!/ Mulheres mães orgulhosas dos filhos

From baby born phase till adulthood…these moms never gave up!

Da fase bebê  de  colo até ficar adolescente/ jovem adulto , estas mães são guerreiras do bem!

Edvania said:” NOTHING BETTER THAN BEING A MOM!”

Joao Vitor,1 year old and daddy Paulo

Douglas, 14 and

Eliana

Guilherme,19 and Isabel

D as DIAGNOSIS / D como Dodói

D

DIAGNOSIS: ” Able to be discernible”

THE “DIAGNOSIS” MOMENT IS A VERY IMPORTANT ONE! receiving the news that your child has a blood clotting disorder called hemophilia is always difficult at first. Who is a parent or who has the same responsabilities as one, knows that raising a child is a complex matter, a passionate one too!
So, my experience tells me that the first moment of diagnosis parents tend to record only the NO, or CAN´T DO, MUSN´T DO, and these words transform in NEVER WILL BE ABLE TO….

DEAR PARENTS, THE INFORMATIONS given IN THE DIAGNOSTIC MOMENT WILL TELL YOU ABOUT HEMOPHILIA in general lines. And these informations ARE TOO MUCH TO “digest” in one meeting. TAKE YOUR TIME…JUST LOOK AT YOUR CHILD AND MEET HIM! “NICE TO MEET YOU SON”
WITH THE DAYS, WEEKS AND YEARS PASSING YOU AND YOUR BOY WILL LEARN TO KNOW ABOUT his HEMOPHILIA. The very peculiar way hemophilia is expressed in his body/mind.

AND YOU WILL SEE there are plenty of activities and interesting experiences ahead for him to enjoy!

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D

DODÓI :” Machucado, ferida, sangramento”

É IMPORTANTE RE-CONHECER QUÉ TIPO DE MACHUCADO ESTÁ HAVENDO:
DE MODO GERAL exponho aqui os 3 TIPOS:
machucado EXTERNO
machucado INTERNO
machucado leve ou ESCORRIAÇÃO

Nos sangramentos internos e externos é importante aplicar a DDU ou vir para o centro de hemofilia para aplicar o fator.
No machucado leve, geralmente aplicando gelo e fazendo pressão ,o machucado pára de sangrar e não incha! NA DÚVIDA LIGUE PARA NÓS

Mãe aliviando a garganta! Brothers and brothers with Mom in the middle

FAMILIA EM REBULIÇO!! OUÇAM! clicka aqui!

SORRY! IT IS TALKED IN PORTUGUESE: mother Irene explaining how it is difficult sometimes to deal with her boys Daniel 7 with hemophilia and Gabriel 5 and a half without! the elder one had the bad habit to fight with his brother and the other one wasn´t allow to fight back because his brother “has hemophilia”!!!

F como Familia / F like family

CLIQUE em “familia e hemofilia” para me ouvir! nova maneira de compartilhar idéias

FAMILIA E HEMOFILIA : ALGUMAS PALAVRAS FALADAS

F like Family : ” group of people that are linked together by blood and or/ by feelings of belonging and interdependence”

What is the importance of FAMILY in Hemophilia? well I believe, a family with one or more sons with hemophilia has to know that interdependence and  freedom are 2 important issues to reach. These are kind of opposites: we depend on each other and we want our space, our individuality to be respected.

More on this subject is in my monograph Psychosocial Care for People with Hemophilia toh-44_psychosocial-care

Here are Some ideas I have noticed  that a  functional and creative family  :
1) Seeks always for SOLUTIONS for the problems that appear.

2) Has several good friends with other kids (it helps) to share time and different programs together

3) All the members know how to explain What is hemophilia, what to do, and whom to call in emergency case

4) Knows that a child with hemophilia will have some restrictions in some areas that another son or daughter won’t have. So hemophilia musn’t always SPREAD all over other siblings and parents. Each one of the members can have his TIME  and SPACE to do his activities.

5) The family knows that conflicts and different feelings will naturally arouse because of the differences and will allow them to be expressed without blaming anyone for feeling them. Exemple: a sibling might feel jealous of the atention that his brother with hemophilia receives, and at the same time he might feel guilty to not have a health issue to care about.

The boy with hemophilia can feel bad and with low self esteem because he can’t participate in body contact sports  like his brother or sister does…or he can feel he is not handsome because he has a joint that is swollen. Envy will arise and must be understood as a first step to reach a dream or find another one more suitable to his real possibilities. There aren’t good or bad feelings…there are ACTIONS and consequences…