Thursday, May 26, 2011

Macie

I haven't done an update on Macie lately and I am feeling a bit guilty about that.  I am in a weird place right now.  My emotions are all over the place.  I am so proud of how far she has come in the past year.  I am proud to be her Mommy.  I love her with every ounce of my being, and I would not change her for the world.

With that being said.....I will say that I am not yet to the "acceptance" stage.  I accept the fact that Macie is autistic, and I know that I can not change that, but you better believe that I am angry as hell.  There is so much "stuff" surfacing on the news about autism, research on autism, what role vaccinations have in autism and all this "stuff" is pissing me off beyond belief.  I was going with the belief that autism is genetic, and that I am not to blame for Macie having autism.  Now I am not so sure what I believe.  I won't go in to great detail, but researchers are uncovering many cases where families were compensated for vaccination "injury".  Many cases involved children that showed "autism tendencies" after being vaccinated.  We chose to do delayed vaccines for Macie from the beginning.  It wasn't because we believed that they caused autism, but we felt the amount of vaccines they give to children at one time is extreme.  We didn't feel it was necessary to inject so many in her little body all at one time.  When she was 15 months old, we did get her the MMR vaccine, but that was the only one we did at that time.   In November of 2009 the big H1N1 "scare" came about.  I was 8 months pregnant with Emma at the time, and I did a lot of research, and a lot of talking with my Dr.  I was torn with the whole situation.  I worked in a restaurant, I was exposed to a lot of germs.  Macie was 14 months old and I was scared she might get it and get very ill, pass it on to me.  H1N1 was killing pregnant women.  My Dr. had a woman who was clinging to life as was her unborn child.  It scared me, and I couldn't decide if it was worse for me to take the chance and not be vaccinated.  Either way I felt guilty.  Long story short, Phil, Macie and myself were vaccinated in November 2009.  Macie had the MMR, and the H1N1 (first round- we never got the 2nd dose) within one month of each other.  In January of 2010 (could have been sooner) Macie stopped saying new words, and was losing the words that she already had.

So.....with all the new research, and findings that are surfacing in the news makes me a little leary.

As I write this post many families in the US are receiving the devastating news that their child has autism.  One in 110 children (1 in 70 for boys) will receive a diagnosis of autism.  There is no known cause, there is no cure.  There is not enough being done to find the cause(s) and/or cure, and it is more common than any cancer, juvenile diabetes, and pediatric AIDS combined. 

All of these facts really piss me off.

It is my job to protect my kids, and I couldn't protect her from this.  I feel responsible, and I will feel that way until someone proves me otherwise.  Of course I had no idea what the future would hold and how, and if the vaccines would affect her, but that decision to "roll the dice" was in my hands.   I have, and will make many decisions in my life that take a turn and don't work out in my favor, but this decision was potentially life altering for my kids.  So.....here's a big F YOU to autism, vaccinations, lack of research, lack of knowledge, and lack of information I felt I had at the time.  F YOU!  K, I feel a little better. 

2 comments:

Kimberly said...

You're not alone in your feelings! Add my BIG F U too!!! (((hugs)))

Chrsitine (friend of Kim's) said...

go ahead and be mad...its good for you! and better for your daughter. it's part of the process.

1st - Be Confused: Don't understand why your baby isn't talking - you're way past that stage...

2nd - Deny it: Keep telling yourself, its all in your head, keep anyone who tries to tell you different away from you and your precious, perfect baby. (Not everyone goes through this stage, I did though, until there was no one left to keep away) you're past that stage too.

3rd and 4th Dive In and Blame Game: sounds like your place here....you are trying to learn everything you can to help her, help yourself, potentially even save her from the wrath of autism. As you go, you learn things that make you mad. You wanna know why. What happened, who's ass can you kick? (even if it is yourself - not that you want to do that too much) at this stage, I ordered all of mine and my son's medical records, then printed out a calendar that covered every month from conception to d-day (Dx time) I went through financial records and recorded everytime I knew we bought paint from Menard's, or a shipment of chemicals I might have handled at the automotive shop my husband and I ran. I put it all on the calendar. I was hoping to find something that would explain it all. I wanted to know why.

All future stages will look something like this:
Making Plans, Becoming a Therapist, Training the Rest of the World, a Few More Tears, A New Normal, What About Her Siblings?, What about Her Future?, What About My Future? and many more, that I (or Kim) haven't gotten to yet.

It is totally acceptable to skip any of these stages, replace them with you own. I am sure I missed a ton.

Some of my thoughts were so dark I wouldn't even accept them as my own. It was more than F you to autism, I was on F you to God and the world. But here is where I am now, when I ask why...

I had 4 (mostly)perfect, (mostly) happy, (mostly) healthy children. I told my Catholic raised husband, enough, I was done. We struggled with it, but decided I would get a tubal, so I called the dr. My husband talked with some friends, read a little, then told me he thought it would be safer for him to go in. I agreed, he met with a dr, scheduled a day, then needed to cancel because of a large job that had come in at work. He couldn't afford the time off - not even a day. He made another appt, then canceled. He procrastinated, so I made another appointment for me. A week before my scheduled date, a nurse called to tell me my dr was on medical leave, with no return date. The next month I was pregnant. Four appointment to attempt to sterilize us, and God had a new plan for me. You see, I never planned any of my pregnancies. Each one was a surprise, and occured "naturally." So I thought, "ok, one more...but I am getting tired. It won't be hard, I've done this before...I can do it with my eyes closed and both hands tied behind my back." I was so arrogant. God had plans for that too.

So, Welcome to the this wonderfully complicated, roller coaster ride! You will most definately have ups and downs. We all do, but each and every day will bring you something new and you will have the opportunity to embrace and celebrate each and every milestone Macie makes. All those little things, all the other moms take for granted, you will celebrate! It might be harder this way, but really our ASD children will teach us so much more about being a parent, and what it means to give love unconditionally than we could have ever come close to without them. A new level of love, protection, and compassion is on it's way. So grab our hand - it will be a bumpy, but an oh-so-very-worth-every-minute ride.

"If God brings you to it, He will bring you through it."