Amee was born at 3:00 pm on December 18th 1975 (exactly seven days before Christmas, and I have always considered her to be my guardian angel!) She weighed 4lbs and 5 ozs and she was diagnosed with Downes syndrone. It was predicted that she wouldn't leave the hospital.(She was transferred to the neo-natal unit of our local hospital and remained there for about a month.)Each time we saw the Doctor we were given the same story, she won't survive,(two years at most) by this time, the trisomy 18 has been diagnosed by the Genetic Clinic.To say my life was stressful is an understatement!!
Meanwhile, one month before Amee's first birthday, I filed for a divorce(her father was not at all supportative and in fact he was extremely cruel,even blaming me for her disorder) the separation was very difficult,he threatened me constantly, and harassed me on my job, simply because I left him !(Eventhough he had been seeing someone else for several months!) I vividly recall the day we left. It was Thanksgiving week, (I has very little sleep the night before due to the "mind games" he was playing with me but I knew then that I had to get out of that situation.) We have a three year old daughter who I would take to pre-school every morning after I dropped Amee off at my parents home, We got dressed as usual and we all went to my parents with just the clothes we had on and we stayed there untill I moved into my own place two years later (I only went back to my old residence one time..with a police escort..to get our clothes). Both of my parents were very supportative and they deserve much of the credit for Amee's longevity! (My Father, an alcoholic, stopped drinking and spent a lot of time with Amee and my Mother an absolute saint, cared for Amee while I worked and she gave me a lot of emotional support) The divorce wasn't finalized for two years as Amee's Dad contested it, because he did not want to pay child support. It was only after I agreed to the minimun support ($7 per week per child that I was awarded the divorce!) Eventhough it was dificult to manage, because we were living with my parents, we did ok on my income.
Around age two Amee started a home therapy program through our local Board of Mental Retardation and Developmental Disabilities (MRDD) what a wonder facility and such dedicated staff!! The therapist was able to teach Amee to sit and rollover. At age three she was enrolled in the day program at MRDD. They provided transportation (my Dad would carry her to the bus and get her off everyday) She continued to go there until she graduated at age 21, after which she was enrolled in a daily recreational program at United Disability Services (UDS). She has always lived at home and will continue to do so as long as I am physically able to care for her. I don't have as much support now as I had in the early years as both of my parents are now deceased,(my Dad in1987 and my Mom in 1999); however, one of my brothers(with a service related disability) who lived with my parents took over the responsibility of getting Amee to and from the bus everyday, Due to my employment in the public sector, I was fortunate enough to retire at age 51 (after 31) years of service. But that was shortlived, due to some operational problems I was asked to return the following year on a " temporary basis " to assist with the implementation of a new program. I retired again in 2004. After my Mom's death, My oldest daughter(with her family) moved back to Ohio to help with Amee.
Amee's overall health has always been good! She does not take any medicine, she does not have siezures and she has only been hospitalized three times since age two! once for dental work ane twice for back surgery (last one in 1989) She has a healthy appitite,eats regular food (soft&chopped) I do not feed her any red meat and more fish than poultry. She does not like candy or ice cream but enjoys cake or pie!
Amee has a heart murmur but it has not caused her any problems. She does not walk or talk but she knows how to express her dislikes or discomfort. (She was taught the sign for eat and drink but she won't do it anymore) Amee has a very pleasing personality and has a smile that lights up a room. There is something "magical" about her in that everyone who meets her instantly cares for her. She is truly an ANGEL. I am hoping to take Amee to Disney world this fall because I believe that will give her MUCH joy!
Even though I have gone through many hardships including some health problems, I feel that Amee's presence in my life has blessed me.
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.