A little piece of heaven

I’ve been quiet lately. I know I’ve been quiet. I’m on the other side and it’s dark here. It’s very dark and I can’t see much around me. So I am quiet.

The other side is that side where you finally realize that you have to stop living your life throgh your disabled child. On this side, your life revolves around helping your child. You care for him, worry about him, work for him, run around with him. Your essence withers away as your life focuses around your child’s health and rehabilitation.

But on the other side, you wake up one day to realize that you are a person too, who deserves self-love and self-respect. You realize that you cannot neglect and ignore yourself so much that one day you wake up and wonder who you are, what you have become. You don’t recognize yourself any more, and treat yourself with the same indifference you would treat a stranger. So you decide that it is time to reclaim yourself.

And to reclaim yourself you first have to get small. Real, real small. Your world needs to become smaller. Your people need to become smaller. The things you deal with need to diminish. Your energy needs to be conserved so you can direct it towards your journey, your brand new journey. So you withdraw.

And that’s where I am today. Quiet. Still. Exploring.

I am starting a book/workshop called The Artist’s Way. Because Nathan is okay. And I have to move on. I have to become a person again. Not just Nathan’s mom. Not just Nathan’s case manager. Not just Nathan’s personal stress machine. I have to find and become ME.

Nathan is okay. He is happy. He needs me to be well more than he needs me to be his case manager. He needs me to be his happy mommy.

So I embark on this journey. I may stay quiet. Or I may find my voice. I can’t wait to find out.

We have a lot going on and a few people asking me about various things so I figured I’d write an update about all the plates that we have spinning in the air:

* Nathan has once again been fully off his prevacid for a few weeks and doing great!

* We saw the plastic surgeon who said Nathan’s palate IS high but not severe. To quote him, “This isn’t the highest palate I’ll see today”. There are no surgical interventions available to lower the palate. He asked us to make an appointment to see the ENTIRE craniofacial team, which consists of 7 different specialties, so they can follow him over time.

* Nathan had his first dentist appointment. He has no cavities and just needs a cleaning. We will do the cleaning first thing in the morning in the next few weeks so he doesn’t throw up any food (sensitive gag reflex).

* He LOVES Kelly Dorfman’s protein smoothie and has gained weight and is not throwing up any more and is generally looking healthier. We cleaned up his diet and have stopped cheating and it’s helped him tremendously.

* He is seeing Eileen, a local Feldenkrais practitioner, twice a week, and Katie, another Feldenkrais practitioner, 3 times a week. I plan on doing this for another month or two to see how much Feldenkrais can help him.

* I spoke with the team over at Rutgers University Baby Lab and we will be flying back to the lab for further testing! This is super exciting news as they will be able to give us an accurate assessment of his cognitive development. Plus we will get to see many friends while we’re there!

* He started music therapy, as you can see from the videos in the previous post. He LOVES LOVE LOVES it! His music therapist is a girl from Colombia who went to my same school. We ran into each other, 17 years later, at the grocery store in my home town. She specializes in working with kids with CP and autism. How cool is that!

* Still working on the wheelchair situation. We’ll be trying out a ThevoTwist, and if that one doesnt’ work out, we’ll probably move forward with the Quickie Iris.

* He saw his DAN doctor, who is also his reflex integration specialist, and he was amazed at how much Nathan has progressed. He said there is a definite difference in his muscle tone! He worked on integrating Nathan’s rooting reflex, which he said will make a major difference to Nathan’s oral motor skills. He also gave us some blood and urine tests to use in order to test him for allergies, neurotransmitter, metabolic panels, etc. It will take some time to see the results of this thought, but I will share them once we have them.

* We found a used Pony Walker so Nathan can have one at home, and one at school! It took a gazillion hours and some mad searching skills, but I found one!

* We’re still waiting for his swash brace and DAFOS. Once we have those, I am curious to see if Nathan will have any success wakling in the kidwalk. I had him try it again a few days ago, but it didn’t work out because of the severe scissoring and foot crossing. So once we can fix those two issues with the braces, we’ll see if we can get him to use the kidwalk as well, which would be nice because he would have his hands free and the kidwalk has bigger wheels and is easier to move.

* I finally discovered that Belle is a “High Needs Baby“. Which is why I am getting almost no sleep. Why I am exhausted all the time. Why I am barely keeping it together. She’s super lovely and incredibly demanding and super smart and quite the handful!