What we do not know.

It has been a while since I wrote last, and many thinks have happened in between.
Evidently we are like every day, trying to find new and improve ways to help Nelson. It is funny how things work sometimes, we read a lot my husband and I and we read and read trying to find new avenues for our adventure, trying to fill in the gap of complete ignorance about Nelsons limitations and what we can really learn about it; most of the time I found myself acting upon instinct, called mother instinct or just plain and simple old instinct. Sometimes it feels like I am onto something, like a retriever dog pointing at a duck lying on the grass so his master can get it. There are mornings that I feel like I have the mental clarity to tackle almost anything that is been throw at me, and there are days, that I feel like a bus run me over. Either way I need to keep going forward and keep close details of all the implementations that we are applying.
Nelson started school last year one day after his b-day; he attends 5 days a week and goes from 8:00am to 1:50pm. The school is provided and funded by the state and the school district. Nelson has 8 classmates and only one of them is a girl. They are all different ages from 3 to 5 and they all evidently have one thing in common: their limitations.
School is one of those places that I always wanted to delay on my children, I always said: oh, no I will wait till they are 5 and I will keep them home. Well, I was wrong, school prior to formal school (kindergarten) is not only important but wonderful, it fills in the places that me as a mother cannot for many reasons and it enables my kids to play and learn about the diversity of the world. Nevertheless I was hesitant about Nelson going to school for so long and so sudden, since he never went to a day care. In t he very beginning I was panicking and I could not bare the fact that he will come home and I was completely unable to ask how did it go? Did you have fun? Do you like it? All those questions that you want to ask… anyhow he went, and we accommodate (I should say I) to whatever needed to be done.
Each morning I will have this sensation of distress that I could not really place anywhere, but I knew it was always related to him being away from home at school. Yes! You may call me possessive and obsessive and controlling, Yes! I admit it! But clearly beyond that point, I knew deep down that something was out of place and I needed to find out.
Evidently life got on t he way and I delayed my observation of the classroom for a while, finally one day I requested it and went I got there and observed my son`s classroom for one hour I left the observation room crying. I am not sure I was sad, but I am sure I was mad, I was enraged, I was fuming, I was completely down to my knees…
All my fears where confirm and all that sensation of distress got a name and a meaning: the classroom was out of control, and the needs of my child (and the others) were no meet by any stretch of the imagination.
You probably still think I am crazy, yet, I am not.
I went home and took a deep breath, and I started a crusade to get Nelson a chance to get the education that he needs and deserves.
I encounter no eco on the school and its representatives, on the contrary: I got lots of procedural codes, procedures that need to be follow, and a bunch of bureaucracy that if follows it will be too late for all the children in that classroom. Therefore we needed to take action: but what now? So back to the drawing table and not without a pair of problems to solve: Nelson`s tonsils became really enlarge about 2 months ago, no symptoms, no apparent illness, and then boom! He was sick, very much sick. None of his Dr`s could really do anything and we where cornered with the decision of giving him antibiotics, the very same thing that makes him toxic. !
So, in hand 2 mayor situations: a) Nelson`s diet will have to start from the beginning after 20 weeks on it, and b) he needed a place better than school. And when I say better I mean WAY better. In order to recover and in order to keep going forward.
For spring break we all got sick, and hence we stayed home, and cabin fever did what it pleased… I gave us an excuse to read more and research more and with more intensity. During those sleepless nights I contemplated all the possible scenarios and all the mayor implications and concluded that no matter the path to be walked, we needed to duplicate or triplicate our income… but why? And How?
Why: because the measures to be taken implied private therapies, and they are not covered by the insurance.
How: well, we are still working on that one… (my husband buys the lottery once a week just in case)
The honest truth is that no matter how hard is the reality that we are immerse into, we need to keep going forward and in doing so, we will find the answers that we need and why not the help we need to provide our beloved son Nelson with the best chance possible for a recovery.
We are still cooking and roasting pork every week, and we will keep on doing so because we believe in what we do and we know recovery is in the future.
(Yeap, and how about the day I do not feel so positive!) well yes, those are among us to, not only on me but on us as a family… they are peculiar and definitely filled with fear and uncertainty, and they usually happened at night, when I can close my eyes in the darkness and cry internal tears that are also mute so my children do not hear me. Yes, there are days that are less than good, and closer to really bad, where I feel like I am about to pass out… and then it always happens: I see my son`s face looking at me, talking, and asking me about my day, and telling me about his… then I stop on my tracks and I aim towards that sentiment that uncertain future that awaits us and even thought we do not know what it is, I love to dream that is going to be just like that!