A little piece of heaven

…how’s Nathan doing???

I’ve sorta hijacked the blog with all my useless senseless questioning, so I figured, let me get back to the star of this party and share a little update about Mr. Nathan.

I’ve gotten many calls and emails saying…Marcela, don’t give up on him!

Little do you all know that giving up is just not an option for me. So while things seem to have slowed down and we’re not travelling halfway accross the world looking for miracle cures, we are actually very very busy.

Here’s what Nathan’s up to these days:

He’s getting the following every week:

Occupational Therapy: twice
Child developevelopment: twice
Yoga: twice
Speech: language once, vital stim once
Vision therapy: once
Physical therapy: 4 times
Horse therapy: once
Osteopathy: every other week.

In between all that, we are doing the Reach program and working with him on the Lite Gait and working with him using communication software on the computer.

We’re also going to an acupuncturist / herbalist tommorrow to see if this can help him.

I know I know, it’s a lot. But just think of it this way. A typical child is on the move constantly. They don’t stop and say, whew, this is too much..they just go go go, till they crash during their nap. We’ve had Nathan’s cousin Gabriel at our house every afternoon for the last few weeks and I know this to be true.

So what we’re doing for Nathan is replicating what a normal child would be doing. We’re keeping him moving and active and stimulating him in various ways, just like a typical child would do for himself.

Medically, he’s great! Very healthy, very stable. He hasn’t been sick since early February. We are thrilled at how healthy he’s been.

Emotionally, he’s developing normally. He’s been really whiney lately, and we figured out he’s rolling right into the terrible two’s. He wants to do what he wants to do when he wants to do it. I’m having to do a little bit of disciplining, believe it or not. I have to look him in the eyes and tell him we can’t do everything he wants when he wants it. Really all he wants is to be held and to watch TV. Obviously, this is not happening. So sometimes he complains when we have him going from event to event. No, it’s not tiredness. The moment daddy gets him he’s a bundle of energy. Trust me, we’ve tested this. He’s just adamant about only doing want he wants to be doing.

We’re trying to get him in situatiosn where he can hang out with other kids more often. We also take him out every afternoon at four to the park or mall or something so he can get out and have some fun.

As for his overall development, here are the changes I’ve noticed from the last 2 months:

* He’s smarter – his cognition seems greatly improved. He seems to understand concepts better, as well as language. He is able ot follow instructions (with limited movement initiation) and really shows signs of heightened awareness and undertsanding.

* He’s eating better – he’s now eating very very thick foods. We still blend his food, but we leave it very chunky and thick. He is chewing and swallowing amazingly well.

* He can drink from a straw – yes, he finally learned! The week after we came back from stem cells he figured out how to suck through a straw, now he drinks from one every day. (to all of you non-special needs world readers, this is HUGE!)

* His hand control has improved – he’s got a lot more control over his hands and is able to use them more effectively. He can reach for my faith and touch my eyes, nose and mouth. He is able to lift up his hands and play with toys.

* Improved head control – if I tell him, fix your head Nathan, he will lift up his head and hold it in midline. Generally his head control is better, not really there yet, but better.

* He can bring his hand up to his mouth and suck his finger – this is HUGE for Nathan, he has been trying to get his hand to his mouth since he was born. He can’t do it completely against gravity yet, but if we prop it up near his face, he can bring it to his mouth.

* He’s drinking water from a bottle. Before thin liquids were too hard for him to swallow, now we can give him water from a bottle and he can drink it without choking.

* He knows some body parts – eyes, ear, nose, hair

* He’s prop sitting and side sitting really well – he can hold himself in these positions for a while now.

* He’s a whopping 23 pounds now! He didn’t really gain weight for a year, now he’s gained close to two pounds in the last couple of months!

* He’s doing great at making choices and deciding if he wants to read one book or another, etc.

I’m sure if I thought hard I could come up with other things, but these are the ones off the top of my head. We are really so proud of him for all these inchstones. There couldn’t be a prouder mama!

In terms of equipment, we’re working on getting him several things:

Ormesa Bug Wheelchair

Prime Engineering Walker

Hart Walker (the one in the 4th and 5th pictures below – the one he’s in is a demo unit)

Dafo’s

Now, for the horrible experience of the year contest submission:

Today, we had Nathan in the lite gait (the one in the 1st pic below) at home for his walking therapy. It’s really one of the first times we do this at home. We tried a couple of times before but gave up after a few seconds. We figured it’s time to really start this and do it at home every day.

A couple of minutes into it Nathan starts crying. But since we’re in the “Disciplining Nathan” stage and that means he sometimes has to do things he doesnt’ want to do, we kept going. He continued to cry.

All of a sudden, Nathan starts stepping and stepping and stepping. I almost fainted with joy. He took about 30 steps in a row, cross pattern, big, perfect steps, without stopping. We have NEVER seen more than 4 steps in a row. I started doing the victory dance.

Then I see Owen go pale and he says, STOP IT NOW. His tone freaked me out so I pulled the plug on the treadmill. I look down and I see blood. I almost fainted. His poor little toesies were bleeding!

I don’t know who was crying louder, me or Nathan (actually, I think he was, but I was close). I guess since we let his feet drag a little to stimulate him to take steps, his toes were rubbing against the treadmill and it his feet bleed. So he was stepping to keep his feet from dragging and burning! I was mortified, horrified, and guilty as hell.

Of course we spoiled him rotten for the next four hours, we took him to al his favorite places and bought him chocolate covered marshmallows and other treats. But no amount of sugar can spoil my feeling of guilt.

Anyways, the cool thing is we know that he CAN step if enough torture is inflicted – JUST KIDDING!

Well, that’s it for my “How’s Nathan” roundup. In one sentence, he is well, happy, and inching onwards and upwards.

And here are some cute pics to prove it:

And a cute video:

Thank you for checking in on the monkey man!

Have you guys seen the TV series 4400? In the show, one of the guys, Sean, has miraculous healing powers, and can cure anyone with any disease simply by touching them with his hands.

Owen and I have always laughed when we see that, and thought, if only that were possible.

Recently someone I really trust sent me this link: http://members.aol.com/drbgkoopman/ Check this one out: http://members.aol.com/drbgkoopman/#Brain
This doctor talks about a guy called Levashov, who apparently can do what Sean can do – heal people simply by touching them (of course there’s a lot more to it than that, but that’s the gist).

So I called the lady, just out of curiosity, wondering how the whole thing worked. She said Dr. Levashov moved to Russia. I said, that’s not a problem, we can go to Russia to see him. Then she said, he’s really expensive. I said, that’s not a problem, we will find money somehow, somewhere. Well, then she said it would cost at least 6 to 7 figures. At that point I stopped in my tracks.

It made me really stop to think, would I do that? If someone said, I can heal your son if you give me 2 million dollars, would I do it?

How much of Nathan’s beauty and charisma is tied in with his condition? What would life be like if Nathan all of a sudden jumped out of his chair and started running around and talking? How much would he change?

In our journey, I met someone who is a world renown healer. I took Nathan to him last year, thinking he would lay his hands on Nathan and Nathan would be instantly better. Instead, what he told me was, He’s Perfect. I was like, he’s not. He can’t move. He said, doesn’t matter. If he walks, talks, doesn’t matter.

I walked out of there a little disappointed. It wasn’t something I wanted to hear. Deep down the rebellious part of me said, I don’t care what you say, I will fix him, I will make him walk and talk.

This obviously ended in many tears. You can read about my journey to oz here.

I firmly believe Geshela could’ve fixed Nathan if he really wanted. I believe he would’ve fixed Nathan if it MEANT anything. But does it? Would it mean anything if all of a sudden Nathan became a typical child? How would that change him, us, me? In the spiritual realm, in the worldly realm?

It’s a thought I’ve never really had. I’ve always been so focused on fixing Nathan that I never thought of what would happen if all of a sudden he was “fixed”.

My life is so different now. I am so identified with being a “special needs mom”. Who would I be if my crusade were to end? If I had the choice, would I end it? How badly do I want it?

If Dr. Koopman calls me back tommorrow and says, Levashov is willing to take Nathan on as a client, but it will cost you 2 million dollars. Would I try to get that money? Would I go through with it?

I don’t really think it will come to that. She was very adamant that Levashov wasn’t accepting new clients. But what if she did?

What does Nathan’s disABILITY bring me?

I wear my heart on my sleeve. If I even begin to harden my heart, Nathan cracks it wide open. Or I read about another child with special needs, which cracks me wide open.

I am pushed to have patience beyond what I thought was humanly possible. Not just the “I’ll put up with this situation” patience, but the “warmly welcome whatever arises” patience, the patience that can deeply accept even things that seem impossible to accept, with a happy mind.

I am pushed to ask for help, to rely on others, to step on my pride and realize that, unless others help, I can’t do it. We can’t do this unless we ask for help. How sad life would’ve been if I’d gone through it without the beautiful feeling of humility, of asking others for help.

And gratitude. I would’ve never felt the deep gratitude that sits in my heart all day, every day. Gratitude to everyone that helps with Nathan, gratitude for little things like his smiles and his every breath. Gratitude that we get to meet and receive help from amazing people, doctors, therapists, other parents.

Sure, it’s not all rosy dosy. Sometimes I want nothing more than to curl up into a little ball and sleep into a dream world. Sometimes I feel my head and my world spinning so fast I get dizzy enough I want to vomit. Between this appointment and that appointment and calling the insurance and the doctors and the alternative healers and coordinating the schedule and bla bla bla. Sometimes it’s just too much.

And sometimes I hear a 2 year old say the cutest thing, or display another new skill learned, and I have to turn away to hide my tears. I try to honor them, I try to go somewhere where I can shed them, feel them, taste them. Then I walk back out and rejoice in that 2 year olds new skill, I rejoice in their health and in their freedom.

But these moments eventually bring me back to wearing my heart on my sleeve, they throw me on my knees so I have to beg with a heart full of faith, please please help me. Please, I beg you, I need your help.

And then I feel that powerful infusion of blessings and it’s all okay again. And I find myself a little deeper and further along in my spiritual journey.

Often I hold Nathan by the chest and butt and motor him through the act of taking steps. I bear all his weight, my body supports him, my hands guide his movements. Physically, I step for him.

Spiritually, he holds me. He guides me forward, he bears my dead weight, he picks up my feet and helps me take one step, then another, then another. And when my body gives out, he’s right there with a smile or a tantrum that brings me to my knees with love or a prayer for help.

Would I change this life? Would I, Marcela De Vivo, trade my spiritual guide for a life of normalcy? Would I raise the money, would I PAY, to make Nathan into something he’s not?

Am I so damaged, so broken, that I would go through such lengths, to turn gold into coal?

Honestly, I don’t know. I really don’t.

I would do anything to save Nathan from pain. I would do anything to take away painful surgeries and unending frustration for him.

Does life in a wheelchair, non-mobile, non-verbal, mean that he will have a miserable life, full of pain and suffering? If he does have orthopedic problems and ends up having many surgeries, would his life be miserable?

If I pass up the million dollar chance to preserve the gold, would I doom HIM to a life of misery?

Or can I child in a wheelchair who can’t speak or move live a happy, contented life?

Today was lovely. I’ve been a bit worried about Nathan, he’s been kinda grumpy lately and not too cooperative during his therapies. I was wondering if something was wrong with him and we were getting ready to start the whole CT scan / medical testing process to see if something’s going on.

I’m starting to think he’s just displaying signs of getting close to the terrible 2’s! I took him to the park with his buddy Pres and he was SO happy and excited. I was shocked to see how happy he was and how much fun he was having. What was really cool to is he wanted to be were all the kids were. In the past I’d just sit with him on a bench and he would wathc the kids playing from a distance. Today he wouldn’t have it, he wanted to be where all the kids were. He would look over to see where Pres was and wanted to do everything she was doing.

Sometimes I forget Nathan is just a kid like any other, who gets grumpy when he doesn’t get his way, and enjoys being with other kids and doing what they’re doing. It was really fun for me to watch.

Anyways…here are some photos of us at Disney. We went the last couple of Sundays. Nate had a blast.