Why we do it

I know some people think we’re crazy for doing all we do with Nathan. Some people think we’re chasing a dream and we should just accept reality and stop running around doing therapies. They think some of the stuff we do is nuts and why can’t we just follow convention.

The answer is so simple: Quality of Life.

I love Nathan exactly the way he is. I accept him. He is absolutely perfect. If he stays exactly the way he is for the rest of his life I will be blissfully happy with the incredible little person whose life I have the good fortune to share. Of course I have my human moments where I get down and want him to do more – but these are just moments.

As I have said many times before, my two primary goals for Nathan are Health and Happiness.

That is 80% of the reason we do what we do. The supplements we give him, the therapies we do, the activities and equipment we use – everything is meant to maintain his body in good health which prevents surgeries and illnesses which in turn keep him a happy, content little man.

In all honesty, I believe conventional medicine fails miserably at achieving this goal. Until I had Nathan, I was a 100% believer in conventional medicine. I never went to “alternative” doctors, I believed traditional doctors, I did what they told me to do, I took the prescriptions they gave me. But having seen how miserably conventional medicine failed Nathan, I was forced to seek alternative routes. Thereafter, it was simple.

Conventional – Nathan was sick all the time.
Alternative – Nathan became increasingly healthy and happy. He is rarely sick. He has not been hospitalized at all since we started with alternative treatments like muscle testing, chiropractic, nutritional supplements, and energy medicine.

Beyond simple. And since alternative medicine is so vast and unknown, it necessarily has to be a trial and error situation. How can we know what does or doesn’t work if we don’t try it? How do we know which ones are the good and the mediocre practitioners? So try we do. We try and we try and we try. And through trial and error we have found some fantastic treatments and healers.

But as you know and I openly share – nothing we’ve done has given Nathan any major functional gains. He is still not talking, not sitting, not holding up his head, not standing, not rolling, not not not. So why do we continue? Why do we keep trying and trying? Once again, it’s simple.

Quality of life. The other 20%.

Even the most minute of inchstones can make a huge difference to both Nathan’s quality of life and our quality of life as his family and support team.

Today I witnessed one of these inchstones. We’ve been working on “yes/no” responses using his 2 button switch talker. A few months ago, it was very hard for Nathan to use this switch because he didn’t have enough control of his hands to reach over to the furthest one. Also, he didn’t have enough precision to hit the button accurately.

Until today. Over lunch Nathan and I had one of our first “conversations”. Because of all the stuff we’ve done lately, he now has more control over his hand, and he gained the ability to flick his wrist so he can easily press either of the two buttons. He has so much more precision now and can do it consistently. So we started having a yes no conversation. It went something like this:

Nathan do you want more pasta? Yes. Do you want some water? No. More pasta? Yes. Did you have fun at school today? Yes. Do you want more medicine? No. Would you like to eat more pasta? Yes. How about water, would you like some? No. Would you like me to call daddy so he can say hi? Yes. Do you love your sister Belle? Yes. Are you ready for nite nite? No.

I kept changing the questions to see if he was hitting the buttons purposefully and he was 100% purposeful and very accurate. This conversation brought tears to my eyes! I can now “talk” to my son and he can express, clearly and consistently, what he wants! This is INCREDIBLE!

Can you put a price tag on that? Can you put an effort tag on that? Can you call me crazy for being willing to go to the ends of the earth to help Nathan gain these inchstones that mean so much to him and to us?

I love him just the way he is. But now I can also ask him what he wants/needs. Now we can have conversations. Now I can understand him better. Now I can take better care of him.

Every little inchstone goes a LONG way in improving Nathan’s, and our family’s, quality of life. Every drop of strength, every drop of control over his body, every muscle he masters, every reflex he overcomes, every new sound he can make – HUGE!

So if this means living out of an RV for weeks at a time, flying all over the place for various therapies, making immense sacrifices and effort … we will do it. We will do anything that gives him that little bit of extra control so he can access the world around him. So he can understand and express himself. So he can enjoy his life that much more. So he can stay healthy and happy.

He’s so worth it.

Comments

  1. I love it. If only I could get Charlie to use his “talker” a little more. He much prefers for me to read his mind!

  2. Looks like a milestone to me.

  3. I am beyond thrilled for you and Nathan and your first conversation! It literally brings tears to my eyes!

  4. http://Laura%20G says

    Love it!

  5. YEY NATHAN!!! Huge milestone! I use my hands with Christopher. Right hand is yes and left is no. He will touch the proper hand. When using a talker he uses it for more for play and keeps hitting the button. He is getting good with a switch on the computer!

  6. YAY!!!!!!! Those inchstones are absolutely amazing!! It is wonderful, isn’t it, to be able to talk “TO” your child rather than “AT” him! (went thru something similar when my son got his first hearing aides) You guys are truely amazing parents for realizing all you have and having the gumption for the follow-thru. Nathan is blessed to have you.

  7. http://Veronica%20-%20Lorenzo's%20Nana says

    What truly awesome news! You and Nathan truly inspire me. When I joined this “club”, “sorority”, “sisterhood”, whatever we call it, of family members with loved ones with special needs, you were my first “friend” in an online community for children with special needs. You have provided me with a wealth of information and ideas to try with Renzo, which helped my learning curve immensely. (now I just have to find funding for it all)! LOL! That is why this accomplishment is so special to me as well! You and Nathan have given me hope to be able to unlock Renzo’s thoughts! Thanks so much for sharing Nathan and your family’s journey with us Marcela!

  8. http://Kenia says

    Hola Soy del blog MI CAMPEONA. SI quieres seguirnos mandame tu correo electronico ya que pasa a ser por invitación en lo adelante.
    Un saludo

    Mi correo es: diarioconmihija@gmail.com

  9. http://karym says

    Estoy muy emocionada, vamos que se puede Nathan, no pares!!!! sigue, sigue, no puedo expresar mi felicidad, estoy muy feliz por tí amiga, ya me imagino como esta tu corazón!!!!Besos

  10. http://sally says

    Goosebumply even!!
    Video?? Please?

  11. You are an incredibly courageous mom. Thank you for sharing your story.

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