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Me and my Family....
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PLEASE DON'T FORGET TO CLICK ON THE BOTTOM OF THIS PAGE TO GO BACK TO MY ORIGINAL HOMEPAGE
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this is "My First Painting" that i created at Matheny School and sold at a showing in the art access program. i hope that new york can have a program like that soon.
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HERE'S ME AND COCO
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I wrote this for my mom
when I moved away to
New Jersey for 5 years..
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I wrote this song for my Nana Dot, who passed away in 1998.
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A FEW WORDS FROM MY MOM...........
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When i get some time at night, (when and if Philip falls asleep before me), i would like to write about things that are going on in our lives. there is so much right now, that i don't really know where to start. Its been a long year since Philip moved back home full time. A lot of changes and a lot of physical and medical work for us all.
Besides not knowing if we made the right decision, we have been trying to make sure that all Philips medical needs are met. Like ordering his meds, feedings, diapers, chux, creams, bandages, making or changing doctors appointments, sonagrams, x-rays etc... things are so hectic at times, a whole day can go by and i can't remember what we did. besides being on the phone with doctors, nurses, receptionists, etc. But overall, I can truly say that I can relax a little bit more now, than when he was in New Jersey,or in the nursing home in Queens. knowing that when he calls me at night because he's cold, hot, wet, itchy,or whatever, that I am there to care for his needs. Sometimes I find that he just calls my name every now and then during the night for no reason, but is really still asleep because when i get there, he's snoring! I don't mind really, because I can remember all the times we talked on weekends, when he was home, that he cried for hours, not being able to get anyone to help him, if his covers kicked off, or if he didn't feel good, or was just lonely being so far away from home.
It's been a while since i've had time to write but i toss and turn at night thinking of all the things that have gone on in philips life. i quess i will start out with just one experience....it was a long time ago, but when Philip was about 6 years old, my brother louis, who liked to help me take care of him, decided that they wanted to walk to the nearby supermarket to get new box of cereal,(that's when he had teeth). well, after they were checking out my brother turned to get the bag out of the wagon, which philip insisted on helping to push, and let go of the wheelchair for a second. it went flying down sidewalk into the street and flipped over. a procession of firetrucks from oyster bay were turning the corner for a fireman that died and assisted picking up philip. he didn't break anything, but was bleeding from the mouth because his bottom teeth went through the inside top lip. in the ER i was told to leave the room, which was the first time something like this happened, so trusting the doctors, i waited outside the room. it took only 5 or 6 minutes but he was screaming so loud, it was killing me and the minutes seemed like hours. after i was allowed back in the room, i asked why philip was screaming so much, and the doctor looked at me and said, "he needed 10 to 12 stitches and i thought that he was retarded so i didn't use any novicaine!" and that was just one of many of his unbelievable trials........
i hope to add to this again soon..............
For anyone whose has had to care for someone, or still is, there is a websight called National Family Caregivers Association which may be of some help. I'm putting the link on the bottom of this page...
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CHECK OUT THE ART ACCESS PROGRAM LINK AT THE BOTTOM TO SEE WHERE I DID MY ART WORK AT MATHENY SCHOOL AND HOSPTIAL
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I was thinking over the past few weeks what it's been like, physically, taking care of an adult with lesch-nyhan. i think i've come up with something really understanding to most people. it's like when you place a newborn on a weighing machine at the doctors office for the first time, he or she screams because they are cold and naked, and they thrust all over the place. that's what it's like for someone that has Lesch-Nyhan, the only difference is that he's now 150lbs. and crying that he don't want to hurt the person taking care of him at the time. all LND'S need comfort, understanding , forgiveness and love.......
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HELPFUL FINDINGS
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to go back to my page CLICK HERE
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