Jacinthe Mickayla Lewis, now four years old, and who has serious physical health needs, is home from the rehabilitation hospital, where she is still receiving daily physical and occupational therapies. She is out of her coma, but she has a very long way to go before she is back to where she once was before she got sick earlier in the year with meningitis that nearly killed her and left her brain damaged.
Her mother shares her feelings about having a child who is now brain damaged on top of already being physically disabled.
This is Helene Larkspur Lewis speaking.
I am sitting in the living room, with my now four-year-old daughter, Jacinthe Mickayla, who is now thankfully home with me--and just in time, too, as next week is Christmas; and I couldn't have asked for a better Christmas present.
But my joy is tempered with a twinge of grief and sadness; for it won't be a very merry Christmas for her, or for me, for that matter. You see, Jacinthe has had a very hard year healthwise, and she is now no longer the same. She got ill with bacterial meningitis earlier in the year, and it has left her brain damaged--on top of all the physical problems she has already BEFORE she took sick with the meningitis. My little daughter has spina bifida, breathing problems that requires daily physiotherapy treatments and suctionings (she has a trache), and a very low immunity to disease: any little bug that may seem minor or insignificant to most people could kill her in hours, she is that fragile. That is why, when she took sick with bacterial meningitis earlier in the year, she is now more "damaged" than ever. The meingitis has left her brain damaged, and she now sits in her little pink wheelchair, seemingly unaware of everything that is going on around her. She just sits there, her eyes devoid of any expression, and her face, an expressionless, blank mask. It is so heartwrenching to see because I remember back to last Christmas, when the sight of the ever-twinkling lights and the tree decorated would send Jacinthe into gales of happy and delighted laughter. She knew that Santa Claus was coming soon, and the sight of the lights and the decorated tree delighted her to no end.
Now, she just sits there, staring off into space, and even though the tree is once again decorated, and the lights once again shine brightly in the dark winter night, Jacinthe makes no notice of them; and she doesn't smile anymore. Her little body is held into place by a butterfly strap that helps her to stay in her wheelchair, and her little legs and arms are wasted and spastic. Her eyes are empty and lifeless, and her face is pale and pinched; and the sight of her suffering breaks my heart. If I could get SOME semblance of the little girl that used to be back into her, believe me, I would, but it won't take nothing short of a miracle from Heaven to bring my little angel back!
I have been trying my hardest to be there for my baby, but it is so hard trying to raise a child on my own, especially one with physical needs as demanding as Jacinthe's. It is not easy, and I hardly ever get to go out anywhere because just about all my waking hours are spent trying to care for Jacinthe and her needs; and by the end of the day, I am so exhausted it is all I can do to keep from wanting to harm or even kill my daughter. It is getting harder and harder to cope with her phsysical and now mental handicaps, and I wonder if it were better that she WERE dead.
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