OK, so I have to tell you a story today that happened to me during this past week. If you are a special needs parent then I’m sure you can relate to this. And if not then I believe that you’ll enjoy reading anyway so keep going 🙂
You see, I had a meeting with the local council concerning Natan Shai’s school in order to decide whether he should continue learning there. It’s one of those meetings that is scheduled every three years or so to make sure that there haven’t been any major changes (like he suddenly grew a new brain and started walking, talking or something) Anyway one of those meetings that you simply have no choice but must go to.
So I get all the kids off to school in a hurry and wander in kind of breathlessly about ten minutes late to the meeting which was scheduled at 8.30am. All is fine. My explanation of tardiness being understood – after all getting three special needs kids off to school along with two teenagers is not a simple task. (The latter being the harder part of the deal lol).
I sit down, pour a glass of water and then the questions start…..”So tell us about Natan Shai” they ask, “What can he do?”, and “How has he progressed in the past three years?”. I know they’re looking for conventional answers. These aren’t new questions, in fact, I often get asked the same type of thing by various people in different situations.
So I start wondering to myself how am I going to sit there and explain to these educated professionals that actually, my son who has Hydranencephaly doesn’t really “do” anything when in actual fact he “does” everything, without sounding like a complete idiot? How do I get these people to understand who Natan Shai is? What his essence is. That he is so much more than just a poor boy 100% disabled mentally and physically sitting in a wheelchair.
How do I explain who Natan Shai is to this group of very nice, well-meaning people who are about to decide my kids future and who actually don’t have any idea what it is to live with a special needs child who is missing more than half a brain? In actual fact, how do I explain this to ANYBODY without sounding absolutely CRAZY??
A friend of mine once said that if she had to explain the feeling of having a special needs child it would be like explaining what it is like to see the Northern Lights to someone who had never seen them for themselves. Personally, I think it would be like explaining to someone who only ever saw everything in black and white what it’s like to see everything in color. That’s just how amazing it is.
So I start explaining in my own simple way and find myself telling them how he is the star of our family, the King, how life just kind of evolves around him and that he is the big light in the centre of it all. Six pairs of eyes stare blankly back at me. “Should I go on?” I ask myself? But yes my inner voice urges me to go on explaining to them. After all, I am the advocate of my child. I am his voice.
But yes my friends, this is the truth. I decided to tell it as it is. Although we try to take Natan Shai with us on trips and include him in activities with the other kids, he isn’t able to do many of the things that regular kids can do, and certainly not by himself (although he does go swimming and horseback riding amongst many other things!). Although he may not be independent he makes up for this in so many ways. For a start, he has a smile which is his own personal superpower and it literally lights up the whole room. I promise you that after seeing Natan Shai’s smile, your life will never be the same again 🙂 You will definitely start appreciating the little things in life.
How does a kid with so many physical and mental inabilities manage to be so happy and obviously have such a great quality of life? How does one with so many problems end up being the most mentally stable person I know? Natan Shai is the purest soul I have ever met and that, my friends, is exactly the reason which makes him and kids like him so special.
Our Hydranencephaly kids (and lots of other different types of special needs kids) have never hurt anybody EVER and they will never hurt anybody in the future either. They do not have that capability to do bad, and that is what makes them so special, so different from everybody else. They just give love and more love and for them, that is all that they know. They don’t have a bad bone in them.
So by the end of the meeting I’d shown them lots of pictures, talked non-stop about this “medically fragile, incompatible with life” child of mine (yes, that’s how Hydranencephaly is unfortunately commonly defined) and I believe that to their credit they now understand that the little boy in the wheelchair is an amazing person just like any other and even though he may not be able to achieve the conventional milestones that other kids can, he is just as special and important as any other typical kid. He may have different gifts to open and he may open them at a different pace. But his life matters.
Most importantly I would like the whole world to know that Natan Shai and his Hydranencephaly friends are not only FULLY COMPATIBLE WITH LIFE they are the best example of LIFE ITSELF! For what reason did we come to this world if not to do good and be the best possible human being that we can possibly be? And these kids do all of this and more without even having to make an effort. And even without a brain 🙂
Yes, every life matters, and for sure our Hydran kids lives matter just as much as anybody else’s. If there is life there is hope. Never give up.
You can read the story of Natan Shai and how he came into our lives right here.
Let’s connect! I’d love to hear from you in the comments below.
With Much Love,
Hannah (Natan Shai’s Mom)