The First Years

During the first year of Jackie’s life everything was going normally except for her feedings.  She did  not want to feed.  I tried breastfeeding but only lasted 3 months, then tried different formulas until I was able to find one that she would take which, of course, was the most expensive and hard to find.  Jackie started walking at 10 months and saying your normal baby words.  After she turned one she started to eat normally but as she got older she would constantly eat.  She would eat even though she was full.

I started noticing that there was something different with Jackie when she was around two.  I noticed that she stopped learning new words and the words she did know she would repeat them over and over again.  Her speech was mostly jargon and would have crying fits.  Every single night she would wake up crying and I would have to go to her bed to try to calm her.  I was always exhausted.  Jackie was 21 months when my younger son, R, was born, we had bought a house and moved in a month after R was born then 6 months after that I started working 5 to midnight.  I would get home around 12:30 am went to bed around 1 something, after a couple of hours would have to get up to go into Jackie’s room, would fall asleep then be up by 5:30 am to get my oldest son ready for school and bring him to the bus stop.  I worked the night shift for 10 years and only slept about 5 hours a night during that time.

Every time I brought Jackie to a doctor’s appointment I would mentioned that she wasn’t progressing like she was suppose to.  We were referred to get different types of test and I put her in a play group.  Then when she was around 3-4 she went into an early education class.  When she was ready for kindergarten it was obvious that she would not be able to be in a regular class setting so I visited all types of program and got her in a school outside of Boston.  In the meantime we continue with the testing.  She was diagnosed with Autism.  Few years later she was diagnosed with Pervasive Development Disorder.

We continued with this diagnosis and kept her in special needs classes.  I also put her in dance classes together with her younger brother.  Tried music classes but nothing seemed to get her out of her shell.  She would talk some but repeated the same things over and over.  Sometimes she would drive me crazy repeating my name…   “mami, mami, mami” over and over again.  I would say “yes Jackie”, she would respond “nothing” then start all over again.  Or she would say “mami mira esto” (mommy look at this) over and over and over again.  But I have to say, the things she knew and understood were both in Spanish and English. 

On my next blog I will tell you how she did in her dance class and about my first breakdown

How it Began – The Pregnancy

My pregnancy with Jackie was a normal one, nothing out of the ordinary, just gained a lot of weight like with my other pregnancies. At the time my oldest son was 8 years old and I was working at a brokerage firm. I was an assistant to a broker who, by the way, was considered a genius yet was the biggest slob you can ever encounter and could not handle simple things. He was so bad that they would give me his paycheck so that I could mail it to his wife or it would get lost in the mess he had in his office. He would walk by you and he would fart and not blink an eye. Little did I know then that when you get into your 50s that happens to you and you don’t even realize it. It was also the placed that I was first introduced to a computer. My job was to learn to work the computer, a Wang, teach the other employees how to use the computer and type a report which he would give to me on Monday morning, I would type it proof read it and have it at the printers by noon time so that I could get it back and put in the mail to our clients before I went home at five. Thinking about it now, I can just imagine all the typos that were in those reports. I wonder how many times I put “asses” instead of “assets” or “pubic” instead of “public”. Oh well that’s water under the bridge. Here is 27 years later and I’m still working as an assistant, now for a lawyer, and still making typos but now there is spelling so I can catch them (well most of the time) before sending anything out. Although I have to say that computers have come a long way since then. Okay seems like I’m getting off track here I should be telling you about how it began with Jackie since this is about her not me. Sorry about that. Just so you know, I might get off track a lot since I’ve had that issue all my life and now that I’m older it is worse. I start one thing, think about another and lose track of what I was doing before and continue all day jumping from one thing to another. By the time I go to bed I’m exhausted and haven’t accomplished anything.

Back to the pregnancy, like I said it was a normal pregnancy and normal delivery, although I was a trooper, I told the nurses that I did not want any meds, IV or episiotomy so I delivered her all naturally. -- OMG, it is true, young people are STUPID! What the hell was I thinking. If it was now, the minute I walked through that hospital door I would be screaming “DRUGS, GIVE ME DRUGS AND KNOCK ME OUT!” The hubby had it right, they asked him if he wanted to look and cut the cord and all he did was shake his head no and stayed near my head so he wouldn’t have to see anything. -- Finally Jackie was born. Little did I know that my life was never going to be the same after March 4, 1982.

Starting the Blog

I am thinking of things that I should put in this blog and not sure where to begin. I guess I should start by answering the question that I get asked all the time, "What is wrong with Jackie?"

My daughter Jackie is 28 years old. She is diagnosed with a disease call Mitochondria (Mito). A person with Mito tends to get tired very easily, cannot tolerate very hot or very cold weather and in some cases, like Jackie, you lose the ability to walk, talk even eat. To find more about Mito you can go to www.mitoaction.org and learn more about it.

My battery is running out so on my next blog I will continue telling you more.