Testing 1-2-3

When I think about the first year of Cody's life, I realize he wasn't the only one taking baby steps.  Not that he was walking by himself yet, but he was trying.  Myself, I was doing everything possible to avoid the inevitable, but secretly  I was building strength to except that maybe my precious baby was not going to grow up normal.  There are so many aspects with fragile X that completely blow chunks.  The first thing is how completely normal a Fragile X baby looks and acts.  It's as though God plays a mean trick on us parents.  Well that's how I saw it then.  Now it's the least of my concerns, after all many babies are born freaky and turn out just fine.  I remember a relative who had a baby that I could hardly look at for fear I'd turn to stone, and she eventually grew out of it.

I decided to start with Cody's eyes.  His eyes were crossed mostly or just a blank stare.  What was he thinking, why wouldn't he look directly at me?  I made an appointment with a child optometrist that was highly recommended and saw her the following week.  Three things Fragile X babies hate right off the bat.  Their eyes bothered with, teeth or mouth area touched, and SHOTS.  There is another, but will explain later.
Shit there are a list of things, but these are the first of many others.   (to be continued)...

13th International Fragile X Conference in Miami

 The 13^th International Fragile X Conference in Miami, Florida July 25– 29, 2012

For Information and Updates click here!

Cody at 10 Months

Around the time my child Cody was 10 months old, the times that he behaved like all the other babies his age became few and far between. Now what?  I had a very long list of all my concerns, and it made me physically sick each time I had to write down another abnormal behavior he was doing.  Around this time I had a regular babysitter name Jennifer who worked with me at the restaurant.  She was 19, going to a local college and living at home, so it was very easy to have her come to my house and watch Cody.  Jennifer's major in college just happened to be teaching special ed. kids, so eventually I had her keep a journal (while she babysat) of Cody's behavior.

Again I want you to know it was 1991, twenty years ago.  Back then if you went to the pediatrician   complaining about abnormal things your baby was doing, right off the bat, they weren't seeing it.  Cody was always good at the doctor visits, and me, well I looked like a Mom with Munchhausen by Proxy Syndrome.  And for the record, I was the farthest from that.  I wanted no attention on me. I had no interest in anyone's sympathy (and still don't) but my bitchy step-mom (a nurse)  believed I had this serious problem and I needed to find me a counselor, because Cody seemed just fine to her.  Well at least the 2 times she saw him since he was born he did. I never listened to her anyway.  At first her advice sounded ok, but after a couple days, I was like, screw her, she's just an old bag of poop from the Great Depression, and knows very little about babies.

There was not a day that went by Cody didn't throw up.  I did have him eating solids, such as jar baby foods.  I felt so bad forcing him to eat food he clearly hated and as soon as I put him in the highchair it was retaliation
central.  He would start biting the side of his index finger (Jupiter), and then begin crying and swinging his arms, knocking the spoon out of my hand, grabbing my hair, spitting whatever got in his mouth right back at me.  Not sure if this was how most babies operated, but who would have more kids if this was the next step? I hated it!  So I tried everything. Cute spoons, straws, even those syringes(without a needle) used to give medicine, and the outcome was always the same, "throw-up" and a very upset baby.
Things were not going well, so I decided to try Ensure, (vanilla) and for the most part it worked.  Cody was much happier and he was getting all the nutrition he needed. I was so proud of myself for coming up with this idea, but with all great ideas there can be obstacles that arise.  Cody stopped pooping.  That's right no deuces, number 2's, dumps, whatever you want to call it, he was constipated and miserable.  By about the sixth day I took Cody to the Emergency Room, because I was afraid he was going to rip something from trying to push so hard. They wrote some laxative prescription, which was sure to help, but he threw it up before it even made it down his throat. I really didn't see too many options left, since now he was going on his eighth day without a bowel movement. Finally, I decided to try putting mineral oil in his juice hoping that it might work, and luckily Cody managed to keep it down.  A few hours later Cody was working really hard pushing an grunting, almost like he was having a baby.  Whatever was going to come out was going to be big, and may cause some serious damage.  When I laid him down to check his progress I saw poop the size of a baseball trying to make it out of a tiny hole. Cody was giving me a look as though I had Carte Blanche to help remove this painful ball of poop any way I could!  First, I rubbed petroleum jelly all around the opening hoping that would work, but it was just way too big. I think at this point I was crying hysterically, and I grabbed one of Cody's baby spoons and started to dig chunks of poop out. I was able to whittle it down to the size of a golf ball, and with one big push  Cody gave birth to a hard green yellow round disgusting Shadoobie. He was so relieved he giggled and fell asleep, and myself, I wanted to take a picture of it.  I know it sounds gross, but if you have a child with Fragile X Syndrome, there will be many poop and fart problems and stories yet to come! In fact feel free to share them, or any story, on my blog as a comment if you want!

Guilt

This is not about Fragile X, but I have to say something that really bugs me. I was at the park tonight with one of my kids and dogs and found an expensive cell phone. After figuring out how to find a contact I called and got the Mom and I could tell she was pissed about something. I told her we were at the park in the neighborhood and she said she was on her way down. About 5 minutes later she arrived with her son and I gave the phone to the young boy and the Mom said thanks, they drove off and I went back to walking my dogs. Unfortunately when we returned to the car, it was splattered with eggs. So the moral of the story is Most People Suck!

Which leads me to my next post about Cody..........Guilt?

I haven’t really written much for a while, and I’m sorry! I really have so much to write, but it’s very difficult, when so very few people are reading my blog. I started to think about people out there that take care of someone with Fragile X Syndrome. I seriously doubt they have time to search for my blog, since it’s almost impossible to find. And for those that do accidently come across my writings, I do sound a bit angry at the world, cynical, and narcissistic, with a dash of hatefulness in every other sentence, and I’m going to say, you are probably right. I get tired of being nice to everyone, and my blog is where I’m going to speak my mind.
For starters, I’m shitty with my generation, "the baby boomers." Although we have the best excuse for being assholes, (our parents), why do we have to repeat? Our children, whether they are mentally handicapped or incredible geniuses, they are this earth's very last hope to be a better place. Yet all around me, I see half ass parents putting their children last, and ignoring serious issues their kids obviously need help with, and sitting by watching our world fall apart rather than speaking out for change. Our legal system is outdated and more corrupt than anyone can ever imagine , but those that have tried to challenge the law hit road blocks in every direction. We elect our government officials for all the wrong reasons. Who cares if there are gays in the military,or if they smoked pot when they were in college! What are they going to do about Peace on earth damn it! Our environment is so polluted with chemicals that it may very well be what is causing us to be so ignorant. Don’t get me wrong, I do appreciate living in the U.S. as far as freedom goes. But come on it’s just like never leaving High School, still continuing to let the dumbass jocks and cheerleaders and rich brats run our country and leaving those with far better abilities to change our nation and world to sit in the stands. It makes me sick. And if we speak out or “rock the boat,” we are looked down upon or held in contempt, or thought to be crazy.
You might ask what does this have to do with Fragile X Syndrome? We’ll I’ll tell you, and I don’t really care if you agree or not, bottom line…..I’m right! The God I believe in wants our world to last, yet he see’s us destroying everything good he created. Seems sad to God we continue to destroy our earth and allow evil to flourish, even control our lives. We are all guilty of this, except for our children. And those that are mentally challenged should be considered heroes in my book. They volunteered to be born this one last time to show the world how precious life is and to not take it for granted. If you had a child like Cody, you would want the world to be safe, and at peace, free of evil people around every corner (I would hope this would be the case for all children, but No). So, I truly believe as time goes on more and more babies will be born with mental difficulties, and from the love we have for them, we as people will demand a better world to live in. It’s the only way I can make sense of what is happening and why there are so many children like Cody!! But my question is, will anyone listen and take action before it’s too late?


Read it from the beginning