Tuesday, September 08, 2009

John, love my life...

(before I start, just wanted to say that I know I talk about John a lot and in the past I had been accused of not loving Cody as much or playing favorites. This is NOT true. I love both my boys equally but I chose to share more things about John because John is in a special place right now and I know many other moms go through this and I am hoping that if they read this, they might not feel so alone...)

Yesterday we had our meet and greet at the school...
I had to fight back tears several times, seeing my boys in MY school, in MY classroom.
George thought the school was "old"... it is... it was built in 1933 and has been in continuous operation since then. Today's principal, is my age, the grand-daughter of the founder and we were in the same class for 7 years...
It really FELLS like MY school and I hope my boys are as comfortable in there as I was...
It's old but clean and at the same time, modern... it kind of feels like Hogwarths!
It doesn't look like it but it feels like it.
Before me and my brothers, my mom was in that school.. so you see, it's kind of a family tradition.

It's a private school and it costs quite a bit to attend.
For those out there who find my job prestigious and think I make a ton of money, well, I don't! Yes my dolls sell for good money BUT they also cost me a good amount of money to make. Each doll costs me around $500 to make if you count my time into it. My supplies come from abroad (add tax and customs and shipping) so yeah... expensive.
Plus I don't really make that many anyway per month.
It's not like we are dirt poor; we own our tiny apartment, and two inexpensive cars (one 20 years old) but private school tuition for two, well that's a big price tag even for a rich person.
HOWEVER, my father is a supervisor in this school! And I get 45% off... THAT's how I can afford it. Could I have afforded it otherwise? NO!

I didn't intend to send the boys to this school... but when John was diagnosed and then refused acceptance to our local public pre-school, I had to search for alternatives.
In this school, I know they will be well cared for... and their grandfather will be there all day should they need something.
It was the best solution for us even if it wasn't the most economical (500 Euros a month for the two).

A lot of people see John, the way he is now and give me funny looks. He doesn't LOOK special needs.. true! Most of his life-hampering problems have been worked through in the last 2 years. We have pretty intense therapy and from February onwards we are taking 7 hrs a week worth of therapy. So yeah, John has improved LOADS.
So why are still IN therapy?
He walks, talks, kind of runs, climbs and he is super smart...
But is he up to par with other (almost) 4 year olds?
No... on the inside, his soul, his way of understanding certain things, John is still 2 years old. Not his mental state, he is not mentally disabled... but his soul, his psyche... John is still a baby.
He understands consequence like a baby does... or danger...
Physically he is doing great ... his gait is almost gone, most of the hand flapping is gone and the days of toe walking are in the past.
He still doesn't have muscle tone from the navel up. His arms are like straws due to the lack of muscle. He still can't do things like kick a ball or turn his waist... some said I am focusing on the details and I am putting a little boy through a lot... but you see, it's those details that remain that will set him apart from his peers. He will be the one who can't do PE or performs poorly... the one with the odd body shape and the match figure body and the huge head (he totally still sports the preemie look!!)...

Some days his behavioral issues become to much... his quirks and his sensory problems are so many... Some days this all I see... a special needs, "different" child... when I am tired and worn out, a couple of times I have thought that "if only he didn't have this"... but then I snap of it. John is who he is and I love him BECAUSE he has "this"... "This" is what makes him JOHN... and I love John... as he is.
Would I trade the past years for a child with no brain damage? No! Because I would be trading in JOHN and I want JOHN in my life... I don't want to "cure" John... I want to help him improve on what he IS and deal with it and one day stay alone and proud and confident... even we never get rid of the weak muscles, even if he walks with a gait that (could get) worse over time... Even if he wears glasses for the rest of his life...
He is the love of my life along with his brother... and is a very special child whose intellect amazes EVERYONE around him and he CHARMS the socks out of everyone who meets him... and *I* alone was CHOSEN to be his mom...and THAT is a huge PRIVILEDGE... it is a priviledge to me, to be the mom of a SPECIAL NEEDS child...
And I am humbled and a better person because of that fact. It changed my life, it changed me to my core and I fear John and Cody have taught me far more than I can EVER teach them... and for that I will always be in their debt.

"Different" doesn't always mean defective or undesirable!

My sons, I want you to stand up to life and look it straight in the eye and then say "Bring it on!!" with a smile...

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