|Emmett's 1st birthday cake smash session.|
Children's birthdays are often a time of celebration,
but for us it has become a bittersweet moment that reminds us of all the things Emmett still can not do!
Ever since Emmett's first birthday my joy for birthdays has disappear.
I recall Emmett's first birthday like it was yesterday. I decided to have a cake smash photo shoot a few weeks before his birthday party.
I set up the backdrop just like I had set up before for my other 1 year old clients.
I got him all dressed up, and got him a mini cake.
It took me one second to realize that my one year old son couldn't sit up independently, stand, or even sit up with support.
His body was loose Emmett couldn't support his body not even for a second, and he wouldn't even look or touch the cake.
Who was I fooling perhaps I wanted to believe he could sit up all by himself.
Emmett wasn't even eating solid food he would throw up every time I try to feed him
He was not going to eat the cake or even try to touch it.
That day broke me.
The cake went back in the fridge and I saw my daughters face of disappointment as her
baby brother struggle.
A week later Emmett had his first seizure.On his 2nd birthday we received most of his diagnosis and he got his second seizure.
First it was Autism, then Fragile X syndrome, epilepsy, and sensory processing disorder.
I was told by a neurologists that he might not walk until he was 4 or 5 years old and that
he might not ever speak properly whatever that means.
Their was no birthday party on his second birthday and third birthday we decided to skip
out on the birthday celebrations it was to difficult to take in.
I couldn't bare to sit there in front our family and pretend like everything was Ok.
Because in our reality our whole world was tumbling down.
Our beautiful baby was struggling we would spend most of our days at doctors offices
getting told that his life will not be the same as his typical peers.
All people could tell me was that he will grow out of it. It has been
4 years and he has not grown out of it.
He is still struggling!Honestly people with Autism or Fragile X syndrome don't grow out of it!
He still can't talk he losses and gains the same words.
Emmett has a grand total of 4 words in his vocabulary that took him 4 years to learn
and years of therapy and daily medications.
It breaks my heart to hear one year old babies say more words than Emmett.
Sometimes I sit there and count all the words and different sounds other kids the same age
as Emmett say and I want to cry of happiness for them, and their parents.
I thank god for allowing those parents the privilege of being able to have a conversation with
I do not get the same privilege.
Sometimes I wish I knew what Emmett is thinking or to be able
Sometimes he will say mama and some days he wont. I've gone weeks
communicate his basic needs.
without hearing it sometimes months, and even years.
I try not to let it break me but is so hard to live like this.
Here I am 4 years later.
His birthday is so difficult, I have to get my game face on, and put on
my best fake smile so I can get by.
I don't look forward to him getting older. The annual check ups, the medication adjustments, the testing, and the evaluations.
They are a constant reminder that he is not like his typical peers and
that he's not just a little behind he is years behind.
The meltdowns are becoming more difficult to control.
One day I will not be able to carry him or hold him down to prevent him from hurting himself.
The older he gets the more people around us began to realize that he is severely affected by his disability.
|March 11, 2015|
The faces of judgement are turning into faces of pity.
People pity us because they feel bad for us.
We do not need anyone's pity we just want to be included and accepted.
I am starting to realized that we can no longer hide behind the terrible twos or threes we have to come out and show the world how to accept our kiddos for who they truly are the good and the bad.
|Emmett's 4th Birthday photo-shoot.|