A little piece of heaven

The other day I went out and forgot to bring diapers with me. There was a kid’s bathroom at the mall with a diaper dispenser for 50 cents. So I bought a diaper for Nathan at the dispenser.

Except the diaper was newborn size. When all you get is lemons, make lemonade!

We’re trying out new AFO’s for Nathan. They are super supportive, a great color, and he really likes them!

Now if only we can get them to work just like AstroBoy’s boots!

Sometimes we forget to feed Nathan so he has to feed himself. This was his chosen meal for tonight.

He was sure hungry.

On a serious note – this is the FIRST TIME EVER Nathan has entertained himself. My mom found this pen toy (bless her!!!) and gave it to him, and he just LOVED it! This is the first time since he was born that I’ve seen him really into a toy! Usually when we give him a toy he lets go right away (it’s a developmental milestone to hold on to toys, immature brains give the signal to release as soon as you put something in their hands). With this toy, he held on for at least 30 minutes, and he kept bringing it up to his mouth with great control and dexterity.

Talking about WILL – this was an amazing example. He WANTED the toy in his mouth so he figured out a way to hold on to it and to bring it up to his mouth. Talk about serendipity 🙂

Notice that around 15 seconds his hand goes all the way down to his lap and he brings it all the way up to his mouth – a FIRST! Thank you God/Buddha/Allah/The Universe!!!!

PS. For the record – today we started giving Nathan b12 shots, prescribed by his DAN doctor. He’s also back on his Gtherapy. We’re almost back to “full on” with him, in terms of his diet and supplements! More on this tomorrow as we have an appointment with Dr. Kenny!

No, I am not writing a story about Will & The Head. I am talking about my arch-nemesis – The Head. Nathan’s head, that is. And his lack of control over it. I am really grateful for everyone’s support and advice the other day, when I posted about what comes..after the high. But the truth is, this is THE BIG ONE for me. This is the thing that gets me the most. I can handle everything – the not walking, not talking, not sitting, not not not not. But The Head is such a quality of life issue for me. I think for me a lot more than it is for him. He doesn’t seem to mind his wobbly flopply head. I obviously mind WAY MORE than he does. Anyways, on to the point of this post.

This morning I went to see my spiritual coach. I have been seeing her since the beginning of my pregnancy with Nathan. She is a healer, nutritionist, energy worker, life coach, spiritual guide. An amazing human being, and a glorious support and help to me. I couldn’t help but talk about The Head. I thought I’d been proactive and moved on. But I obviously haven’t because I couldn’t help talking about this issue without tears.

We spent quite a lot of time talking about ACCEPTANCE. That big word that I’ve used so much in this blog, this wonderful concept that I strive for every day. I’ve been working on this for years…but I’ve been unwilling to accept The Head. I’m holding on to that need, that desire for The Head to actually work. It seems like an issue of human dignity and quality of life…and I fight and fight and fight emotionally, unwilling to just accept, he may never gain head control. Even typing it gives me the hibeejeebies. I don’t want to let go of that expectation.

So Miranda then pointed out that the only way that Nathan can/will gain head control is if Nathan WANTS to have head control. Which got us talking about Will.

Will is a a Waldorf term for the inborn drive to try things out, to start projects, and see them through to completion. It is through will that we become who we are, we develop our sense of self, that we accomplish things. If we have the will to succeed at something, then the effort and practice will follow. But without will we are like leaves in the wind, blown in all directions, without a steady purpose or direction.

I’ve said this before – Nathan’s will to accomplish new things is very weak. Ever since birth he has been treated like a royal prince. Everything’s been done for him. It is human nature to take advantage of this. So his will is very weak – why should he want to have head control when we’re always holding his head for him, and if it falls, we always fix it for him? Especially when it is SUCH hard work for him? If you had somebody who would do all of your laundry, cooking, cleaning, dishes, everything that you considered hard – wouldn’t you happily allow them to do it?

Miranda mentioned that thus far, I have been Nathan’s will, and Owen has been Nathan’s body. I have been the one holding a view of Nathan’s potential. I’ve always been the one to pour hear heart mind and soul into his rehabilitation. Nathan tries to tolerate what we put him through – but it doesn’t come from him. More often than not, he resists the programs. And Owen has been the one attaching him to his body and walking for him, running for him, playing for him. So between the two of us, we’ve given him a very easy opportunity to be complacent and we’ve robbed him of the chance to develop his will.

So today I made the decision, it’s time to give him back his will. It’s time for me to let go and let him be. He needs to develop his own wish to do the things he wishes to do. And if he doesn’t want to, then I have to accept. Just accept that he can only do what he can do. But first I have to give him a chance. Because in wanting to protect him and wanting him to avoid suffering, I’ve prevented him from developing his will.

I can’t tell you how many times I’ve heard, leave him on his belly so he develops neck strength. But I don’t do it, because he cries, it makes him upset. So instead I return him to comfort. Same with the walkers, same with his therapies. Our tendency is to give in to his tantrums when he doesn’t want to do something.

Today I share with you my decision to step back and allow Nathan to develop his will. This will mean leaving him on the floor on his belly, even if he cries. It will mean letting his head flop, in the hopes that one day he will decide for himself that he wants to lift it and fix himself. The orthotist that I saw on Saturday pleaded with us to do this. He kept saying, “But Marcela, he CAN fix his head. He CAN hold it – when he wants to.” He’s right – hours later at Disney, I witnessed amazing head control. So since he CAN, we just have to let him. I will have to be really strong and courageous, to deal with The Stares that people will send my way when he’s out and about and with head flopping. I will have to put on armor so that his crying and tantruming doesn’t get to me.

But if I don’t do this, and if I don’t do this now – I think I’d be harming him more than helping him. Overspoiling children never leads to good results. So for his benefit – he has to struggle a little bit.

While he develops his will, I will also develop MINE. Letting go will require all the will I can muster! And practicing acceptance, with this last morsel of expectation that I was holding on to, will not be easy. But it’s the least I can do – for myself and for him!

…was a long, fun, exhausting day. We left the house at 8am and we just got back in (it’s 9 pm now)! We drove 1.5 hours to an appointment with the orthotist, who adjusted Nathans Hart Walker. Sorry I forgot to take a picture of him in it. Part of Nathans new IEP is that they will have him in this walker at least 20 mins every day. So now that it’s been adjusted to accommodate his growth, we’re ready to go! I’m trying to cross as many Nathan related items off my todo list before Belle is born – this was one of them! Here’s an old picture of Nathan in this walker:

The orthotist and I can’t seem to come to an agreement – he doesn’t want to give Nathan more trunk and head support, claiming that by not giving him support he has to work and strengthen his muscles. But I don’t think he will ever be able to use this walker functionally unless his head and trunk are supported! So my plan is to figure out a way to give him more support to see if he can one day actually MOVE in this walker.

Afterwards we went to take care of some details to get the Dynavox shipped over to us. The good news – it’s now on it’s way!!! It should be here Wednesday at the latest.

Then, on our way back up from Orange County, we stopped at Disneyland! We hadn’t been there since last summer so it was wonderful to go again. Even though we’ve been a ton of times – I feel that Nathan enjoyed this time the most. He was so much more aware and interested in everything! He knew all the characters, wanted to take everything in. His favorite ride was It’s a Small World. He stood up and held his head and his trunk perfectly for the whole ride, and just looked and looked at everything with awe.

I leave you with a few cute pics: