Special Needs

Raising a special needs child is a tremendous amount of work.  I am getting older and have lots of body aches so all this work is getting to me.  My child is 33 years old almost 34 and I have started the ball rolling on getting him supervised housing.  There are many other things that I am working on getting for Robert.  Presently he has a home health aide, but I think it’s time to start looking to change her….I feel like  the lady who is doing the job now is distracted and not really paying a whole lot of attention.

 

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Loss

For my 32nd birthday my boss, Nanscy Neiman, gave me tickets to a concert of my favorite Spanish singer, Jose Luis Rodriguez. Little did I know that in Miami my father was being cremated as he had passed away a few days before on May 31, 1991. Given the nature of his relationship with my mother and us we were not notified of his illness or his death. I found out about a week later through my Dad’s sister-in-law who wrote me to notify me. I was extremely saddened. I thank God for my ex- husband, Bob, who consoled and comforted me. From that moment on Bob took on a new role in my life. Up until that day he was Robert’s dad, my friend, my ex-husband. But again from that moment on he took on the role of my father too. We became closer as friends than we had ever been as a married couple. We maintained a special relationship we were held together by a glue stronger than anything any married couple or friendship could imagine…it was the glue called Robert our son and the loss of my parent whom I hadn’t seen in years. But Bob was a special man and I can say that I loved him in a special way and he loved me in the same way without any jealousy, covetousness, or lust. Our relationship became that of father and daughter, I just so happened to be the mother of his child. He was very important to me and I can’t say how hurt and saddened I have been in the last two years since he has gone home to be with the Lord. I sat with him through every illness from the very first surgery to his last illness which I believe was the cause of his passing. He had end stage renal disease due to all the medicines he was taking for his COPD.  Never thought I would see the day when he would pass and worse yet sit with him, hold his hand and let him go.

I know you are home with the Lord so Goodnight my dear old man may you rest in Him who loved you and as you would say: “til we meet again.”

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LOVE

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BEING A MOM TO A SPECIAL NEEDS CHILD

29 years ago I gave birth to a special needs child. I had a very difficult pregnancy sufferred with hyper-emesis gravidum (or excessive vomiting) for what seemed like the entire pregnancy–until about the 8th month.  The delivery, however, was easy but then when I was handed my baby and I first laid eyes on him I cried that tiny baby had been inside of me for 9 months and now he was here I had never felt that kind of love before. A few days later a doctor came to see me carrying my baby and she told me they suspected a problem with him. “Oh don’t get me wrong she said, he is perfectly fine no problems with him physically. His heart and intestines are perfect, but we suspect that he won’t be as fast a learner as other babies.” Even though I was young, I knew exactly what she was talking about. After all, she didn’t know, but I had been through a practical nursing course for two years so I knew what she was trying to tell me.  She was trying to tell me  that my baby was going to be developmentally delayed due to Downs Syndrome. I refused to believe it, but I did consent to the blood test she was asking my permission to perform. The results of this test would take about six weeks as they would have to grow the culture that would give the reading of my Baby’s genetic map. Those 6 weeks waiting for the results were torture–the emotions were a roller coaster ride.  One minute believing that everything was perfect and the next thinking what if something is wrong?

When the results came in the news was devastating to me, my precious beautiful baby boy had trisomy 21 which causes Downs Syndrome.  My beautiful baby would not be a lawyer, a doctor nor the first Latino/African American president of the US.  He would require early intervention, special ed, physical therapy and occupational therapy.  All that aside this baby was mine and I would do anything for him to make him the best he could be.  His daddy was also disappointed, but I could see he loved him no matter what.

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