Natalie's Roller Coaster Life

August 6, 2010

I don’t know where to begin. . .

First, I am not Natalie.  I am Natalie’s father, Nathaniel, and I started this blog to track and share the progress of my daughter, our relationship, the workings of our family and, hopefully, document my daughter’s struggles and trials so that I can share them with her when she is older.  Hopefully, one day, she will be able to read and comprehend the stories that I hope to share and also understand what it is going to take for me to write this.  You see, this week Natalie has been pre-diagnosed with Autism.

Now, don’t get the impression that I am not married and that there isn’t a mother in the picture.  My beautiful wife Jakki is an important piece of this blog, but this will be written by me, so, the expressed opinions within this blog are the sole property and consequence of my personal thoughts and actions (intelligent or stupid as they may be).  I love my wife more than she can imagine.  I appreciate everything that she does for this family, and I am happy to be able to provide enough that she can stay home with Natalie every day.  Although, as you will likely find out within this blog, she is slightly crazy, and has many interesting quirks (only some of which I will publically share).  

This isn’t the first trial for our new family.  That’s why I spent ten minutes trying to figure out what I should put in place for a title.  I also had no idea what I actually wanted to write about, but I know that I need some kind of release or therapy.  This isn’t about me, well not entirely, this is about Natalie and her family.  Hopefully I will be able to maintain that effort.

So, let’s start from the beginning.  Natalie Rose was born on Friday the 13^th of November, 2009.  Even before that date she was trouble.  Jakki had a rough pregnancy, and I will maintain that she only survived the pregnancy on Burrito Supremes and Slurpees.  There were only a few foods that Jakki could keep down; Jakki had “morning-noon-and-night” sickness for roughly eight months of the year.  And when Natalie was ready to break out, she wasn’t wasting any time with the turning and diving out head first.  She was literally kicking her way out of the womb.  Coming out foot first is not preferred, so a cesarean was in immediate order.  She was little, only 6lb 8oz.  I don’t have the complete stats memorized (I think that’s a mother thing) but I know that she was small from the beginning.

Small but beautiful.  She had a head of platinum blonde hair and gorgeous blue eyes.  I will always remember that first moment, holding my baby girl in the waiting area while they stitched up Jakki.  She was and is perfect.

We were only in the hospital for a day when the doctors started messing with us.  The first pediatrician noticed “physical features that suggest the traits of Down’s Syndrome”.  Really?  Big head, small ears, large forehead; if that’s the picture of Down’s, then Jakki and I both may have it as well.  As we stayed in the hospital the other pediatricians ostracized her actions and apologized to our family, but the damage was done.  Emotional distress and an underlying worry started at that moment, and nothing would ever be the same.

The high of bringing home a happy and healthy baby was diminished and it was unfair.  It was two months of distress as we conducted genetic testing with a specialist in Sacramento to verify that she was not, in fact, diagnosed with Down’s Syndrome.  We had a happy holiday knowing that this was the news.

Now the next few months are a blur.  I was taking two classes on top of work, diligently completing my masters degree and required thesis, trying to finish up everything before Natalie grew up and needed daddy to read her stories and play games.  I thankfully completed my thesis, and maintained my sanity through the spring of 2010.  However, our family trials would continue. 

Natalie was always small.  She is now nearly nine months old and still fitting in three to six month sized clothes.  During our “routine” pediatric checkups she barely made the charts for size and weight.  Our pediatrician did not measure her correctly during her six month visit and, as a result, Jakki took her back to the geneticist in Sacramento.  After carefully re-measuring her, she was under the 5^th percentile, making her a case for possible dwarfism.

This was initially tough for me.  I am pretty tall, and so is Jakki, so I have always seen the world a little differently.  I am six foot three, so I have always been a little awkward; I hit my head on things, have a hard time getting under cars, or accessing low cupboards, and I have a high center of gravity, so I get frustrated with being tall.  However, I believe that it is much tougher being shorter.  At least I can get shorter by crawling and bending, short statured people have to rely on instruments (like steps and ladders) to be taller.  It took me a few days to dissect my feelings, and do some research and I have accepted that Natalie will be small.  In fact, I figured that we would be able to have just as much fun with the fact that we would be so opposite.  I came to terms, and hopefully Natalie would be healthy, just small.

So, we had a follow up meeting with the geneticist this week to determine if the growth concerns were hormonal, skeletal, or just a proportionate anomaly.  This will help us determine her condition and lead us to prepare for what would be to come.  The doctor gave us some good news; it isn’t a hormonal deficiency, so she isn’t missing anything in her physical development.  However the doctor gave us some not so good news, she is behind on her mental development curve, it’s not just her size. 

Jakki and I have noticed that her cousins are progressing beyond Natalie at the same stage in life.  Natalie hasn’t figured out how to crawl, she swims on the carpet kicking her legs and wondering why she isn’t going anywhere.  She has some quirky touch and feel activity, and she doesn’t pay attention to you when you are talking to her.  When we shared this information with the geneticist she showed increasing concern.  The doctor watched Natalie and recognized that she didn’t acknowledge me when I entered the room.  Natalie fussed and didn’t want to be held too tightly.  Natalie doesn’t want to interact with people for any length of time.  These are all preliminary signs of Autism.     

Now Jakki will continue to point out that I missed out on most of the conversation during that visit.  I had to step out of the room to prevent a panic attack.  Natalie’s condition, the new testing, the hot and crowded room, the hospital, and the lack of food and water all attributed to my uneasiness.  I hate the fact that I have anxiety, but I have little control over when the panic attacks happen.  So, sadly I missed out on the important information.   

The geneticist made one thing clear though, it is rare to see these signs so early.  Most programs don’t review children for Autism before 18 months.  However, early intervention is a key component to increased functionality.  All I know is that we have a lot of work to do in the near future.

So where do we go from here?  Now that I have stated the condition, and provided some background, I hope to use this site as a personal tool for sharing the progress.  I want to share some “ups” as well, so I would like to leave off with a few of the things that I love about my little girl.

Natalie loves to swim, she loves to smile, and she has the most wonderful giggle in the world.  She is a ham, so I call her “Hamlet”.  She knows the camera, what it is about and when it is pointed at her.  She has a full head of hair, and beautiful steel blue eyes.  She loves colors and words printed white on black.  She loves watching her cats play in the living room, and for the most part, she would rather sit on your lap than sit on the floor.  She rules her domain, and lets us know when she is not happy.  Fortunately that is not often the case.

Thank you for following along.  More to follow in the future . . . 

~ Nathaniel