A mother writes about her four children, two, of whom, were born disabled (and the third becoming disabled while a baby), and the joys they bring in her life.
We have four children. Our children are our world, our very reason for existing. Without them, we'd have no life, or the life as we know it.
My name is Hannah Hope Grifaldi. I live in Yonkers, New York, with my husband of ten years, Robert, and our children, ages eight, six, four, and two. My husband is a plumber, and I am a stay-at-home mom/homeschool instructor.
I am always busy; hardly have any time for myself, even on weekends. The kids keep us hopping.
They are disabled. Two were born that way (Esmerelda Grace, the eight year old, has Down syndrome, and Giuseppe, the six-year-old, has cri-du-chat syndrome which causes physical and developmental delays as well as other problems); the third child who's disabled became disabled at the age of six months when his head got trapped between the bars of his crib; he suffered irreversable brain damaged, and now requires total care, twenty-four hours a day.
His name's Antonio, Tony to his family/friends. He's the baby; he's now two, forever changed by an unfortunate accident.
It's really sad how it happened. Because of the crib accident, little Tony can't speak, walk, or even feed himself or go to the bathroom on his own. He's fed by a tube; nurses come over every day to make sure he doesn't get sick. They work with him, trying to get him to move his arms/legs; it's fruitless because all he does is lie there, looking lost. It's as though he doesn't know anyone, even us, and it breaks our hearts.
We probably should have gotten a better crib; the other kids didn't have any problems when they were little. I don't know how Tony got his head caught between the bars, but he did, and it scared the hell out of us when it happened.
We still have nightmares of the incident every night; we're terrified that if we fall asleep, we'll find him dead in his bed or having another seizure or breathing crisis, which sometimes happens to him.
We've had to call the ambulance quite frequently on account of Tony. He's just a shell of his former self. He will never say "Mama" or "Papa" or sing to us in his sweet little baby voice. No more will he be able to recognize us or his sisters or brothers. He'll always be in a suspended state, not unconscious, but not aware either.
It's been hard on us since this happened. Robert's working full time to try to pay off Tony's medical needs, and the other kids are having a hard time dealing with their baby brother's disability because they remember how he was befoer the accident happened. At times they get angry at us, angry at him, angry at God, for making their baby brother this way.
Besides Tony, Giuseppe, and Esme', we also have four-year-old Ricardo, who's as active as a Mexican jumping bean.
If we aren't tending to Tony's needs (or the demands of our other two children when they're not having their lessons), we're busy chasing Ricky around. He's so full of energy and life; at times we wonder if he is hyperactive because it seems that he's never still even for a moment.
The only time he is is when he's asleep for the night (then he looks like a little angel) or sick in bed. Any other time, Ricky's a little ball of kinetic fire!
Seeing our healthy child and the accomplishments of Esme' and Giuseppe often make us forget the troubles we face with Tony, if only for a little while.
It isn't very long before we have to attend to Tony, giving his medications every four hours, day and night, checking his g-tube, making sure it isn't dirty, kinked, or blocked, changing his diapers every three/four hours (more if he has diarrhea), clapping his chest, sides, and back to clear out his lungs, suctioning him, stretching stiff little arms and legs, etc., etc.
Time with Tony takes up a good part of my day. It isn't easy; however, we are glad for the days when Tony's well. It shows that we are doing something right. It shows that God is with us, even on our worst days.
Even as bad as we may have it, our life is beautiful compared to most parents of handicapped children. Two of our children can learn (slower, yes, but they still learn). They've far succeeded doctor's predictions that "they won't amount to much."
We are truly blessed in so many ways. God's allowed Tony to live through some frightening medical ordeals, and the same applies to our oldest, who's gone through two major heart surgeries before she was six.
Esmerelda? To look at her, you wouldn't know she ever had a problem (unless you look at the scars on her chest). She runs around like any other normal eight-year-old, her heart issues a thing of the past.
Our child with cri-du-chat doesn't talk much, but he can sign with the best of them; he can and does make his needs known, and very well, I might add.
He can talk your ears off with his hands; he's a regular "chatterbox". Seems his hands are never still; he always has something to say.
Now if we could only corral some of Ricky's energy levels--then we'd have it made! LOL
I will continue to write about our family from time to time, just to let you know what's up with us, the Grifaldi Bunch. I would write more, but Tony's alarm is going off; hopefully it's not another breathing attack. Sounds like his oxygen monitor. I will write again soon; take care and God bless!
When are going our politicians to talk about disable children, war veterans, elderly?
When they are going to give attention to the needs of those foster-parents (not the professional ones) that give the children the love and parental care that no institution can give?
As we wait, we are witness of undying love.
Informative and compassionate. Thanks for sharing your time to quill another of your special needs parenting writes. Added up, your collective knowledge makes it all make sense Karen Lynn...
What a life, very hard and busy. Sounds like they are ok though. Karen you touch on subjects that many should be more aware of, a reality that many people deal and may people do not, with a variety of different issues.
To have one child disabled is difficult; add two more and you have chaos and more stress than needed. However, some parents are able to handle it - as it seems Hannah and Robert Grifaldi are. Well done! Your writes are an inspiration to those who deal with this in reality, and an educational, loving tool to teach the rest of us what true Grace is.
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We have four children. Our children are our world, our very reason for existing. Without them, we'd have no life, or the life as we know it.
