A little piece of heaven

I would pray my heart out all over again, and ask everyone to pray

I believe Nathan’s life and health is because of the outpouring of prayers he received after the pre-natal diagnosis. Those 4 weeks of prayers changed everything for him! He was diagnosed at 36 weeks gestation because he had stopped moving and growing. So we asked everyone to pray and everything changed!

I would ask for 2nd opinions

It was my trust in Nathan’s neurosurgeons reputation that made me believe I didn’t need a 2nd opinion. And this misplaced trust led to so much suffering and damage in Nathan’s early days. So if I could do it all over again, I would get a 2nd opinion about EVERYTHING, then make my own decisions based on the information presented by the doctors.

I would’ve avoided dairy and made his baby food at home

At that time I didn’t know much about nutrition so we gave him regular formula and then when we started eating, we just gave him the regular jars of baby food. For Belle I plan on skipping dairy altogether and making our own baby food.

I would’ve started him with alternative therapies right away

I would’ve enrolled him in early intervention but supplemented this right away with alternative therapies. I would’ve started him with craniosacral since birth. I woudl’ve started him on G-therapy immediately. I would’ve started with the cold laser immediately. And at a few months I would’ve started him on ABR, ABM and CME. Oh if only I’d know about all of this sooner!

I would’ve stimulated him and treated him as much as possible like a normal kid

Which is exactly what we did. We took him out everywhere with us. We travelled with him. We exposed him to the world. We made sure he enjoyed life as much as possible, and still continue to do so. In this regard – I wouldn’t change anything!

I wouldn’t have wasted so much time worrying

When Nathan was smaller I suffered so much. I worried about whether he would live, and if he lived, what quality of life would he have, what would be his future. I worried that I wasn’t doing enough for him, and how would he be doing if I did more. I worried about what would happen as he got bigger and we couldn’t carry him. I worried about him developing medical and orthopedic problems. I worried so much! If I could do it all over again, I would enjoy him more and know that as things arose I would deal with them. Worry is so useless! It’s the most useless of minds!

I would’ve taken better care of myself

I was so focused on Nathan that I would allow myself to become completely depleted, which would then make it hard for me to function. If I could do it all over again, I would make sure I was taking time for myself, enjoying life, and not forgetting to live my own life to the fullest.

What about you? What would you do if you could do it all over again?

* Spend a few days at the beach

* Go for a midnight swim in our pool

* Have a real “girls night out” with friends

* Spend an entire day in bed

* Read a couple of novels (it’s been a while since I’ve read a book)

* Run barefoot in the rain (IF it rains!)

* Cook a nice meal for Owen

* Go on a child-free date night with Owen

* Go back to Hot Yoga

* Meditate daily

* Sleep close to the earth

* Watch the sun set over the mountains from our deck

* Give Owen a kiss at least once a day (the kids are a given 😉

* Do at least 1 thing for myself every day.

This week I’ve been out of ideas of what to write. I’ve wanted to write something interesting but nothing comes to mind. Everything I want to write – cord blood banking, rolling, plus a few more… require research and time to write. And time is something I just don’t have. The little bit of time I have is usually after 8 pm, when Owen goes on Belle duty. But as Owen has been away, I haven’t had a minute off and by the time 10 pm rolls around and I’m finished working, I’m exhausted. Don’t get me wrong – I’m loving it…it just doesn’t leave time for me to research the things I need in order to write informative posts. Which leaves me with this…stream of consciousness.

By the way I am typing this on the Ipad. I ordered the wireless keyboard for when I get to borrow it from Nathan and it’s sooo sweet. I feel terrible that I forgot to send it with Nathan so he could “communicate” while in Montreal. We’ve really just started using Proloquo so he still doesn’t know how to get around it too much. I can’t wait for him to get really good with it.

The problem with prologue is Nathan’s accuracy with his hand isn’t too great. He has trouble crossing midline so icons that are on the other side of the hand he’s using..he has trouble getting to. I am not sure how to get across that hurdle. Maybe with practice? I wonder how I can find out if there’s a way to program an eye gaze device for the ipad? I wonder if I can speak with someone at Apple?

I got an excellent report from Montreal today. I spoke with mary who said Nathan is doing AMAZING in his therapy with Ramon. She sent me a video of Nathan doing his exercises really well – without crying! It was soo cool to watch. She said he was impressed with how well he’s doing. Ramon’s been training Mary to do the exercises and she said she feels really good about them. I feel so positive, so hopeful about this. It just feels sooooo RIGHT.

We spook with the ABR Center in Montreal and Owen and Mary are going to stop by to receive training on the next 2 exercises, plus they are picking up the necessary materials. Wohooo! Now we can start the new exercises that were recently developed by Leonid, which apparently are just fabulous.

And then in 3 weeks we go to San Francisco, to the Anat Baniel Method Center. Nathan is going to have a couple of appointments with Anat, and the rest with her team. We’ll be there for 5 days. Once we come home we should be ready to start “implementation” stage of all of these programs.

I know this sounds like a lot. It seems like a lot of different things to work on at once. But each therapy has a different objective. And fortunately they are all very passive – except CME. So out of the whole day the only therapy that is physically demanding for Nathan will be CME, which will only require one 45 min. session / day. The others are extremely passive and enjoyable for Nathan. I plan on doing “a day in Nathan’s life” video soon so you can see our routine.

And all of this makes me think about my “what if” post. All these trips, all this stuff. What for? One of my wonderful special needs mom friends emailed me and said, what if we’re supposed to do both? Use the journey and experience for our own internal growth, while externally doing the best we can for our kids? Makes a lot of sense doesn’t it? So long as we have no expectations of change or improvement, I think we can do both! That feels absolutely right to me.

Ok a quick update turned into a long post. And since I’m stream of consciousness’ing I’ll say…I miss my boys very much! Good night!