A little piece of heaven

I just finished watching an episode of House (I know I know I’m addicted) in which a pregnant mother refuses to terminate the pregnancy to save her life. She risks her life so the doctors can try to save her baby’s life. She knew that if the baby was terminated, she would live and have a chance for more kids. But her maternal instinct was so strong she refused to let go. Cutty saved the day and saved the mom and the baby.

And it made me think of something that’s been lacking in my life, and in the life of most moms of special needs kids that I know – Self Care.

Beign a mom usually comes with a gene of selflessness…we sacrifice our selves for our kids. But being a mom of a kid with special needs wreaks havoc on that gene. You feel you can’t stop unless your kid is well. So you go go go you keep going because you will do anything for your kid.

But lately I am realizing that sometimes stopping and taking care of my self is part of taking care of Nathan. I am realizing that even though Nathan is out of the womb we still have an invisible umbilical cord. I have noticed that the more stressed out I am the more stressed out he is. The more calm, relaxed, happy I am, the more calm, relaxed, happy he is.

But the umbilical cord extends even further. Because Nathan depends on us for every single thing. He depends on us to feed him, bathe him, hold him, move him, wash him, give him a drink..every thing. So not only do I need to be emotionally stable, I also need to be physically strong. Because if my back goes out or my shoulder goes out, how do I help him?

I have been trying for a long time to prioritize some “self care” time. But it is always last on the priority list after taking Nathan to therapy, working, calling clients back, calling his insurance and social worker, sending reports to clients, feeding Nathan, making sure he gets tummy time and belly time. And after all is said and done, even thougn all I wanted was 15 minutes to meditate and bring myself back to balance…they day passes in a multitude of busy actions and I never got “me” time.

And the more I try to get off the treadmill and slow things down, the more I realize, that self care isn’t just a commodity, it’s a necessity.

On Friday I decided I needed to do something so I went to see an acupuncturist. Yes, I spent $35 that I could’ve spent on a treatment for Nathan, on myself. It wasn’t easy to do. But I realized I had to, I had no choice. The acupuncturist found an imbalance in my liver and gallbladder. And after a 2 hour treatment, I left and had the best night sleep I’ve had in a long long time. And I woke up feeling more balanced and stable than I have in ages.

So I write this post to beg any other mom that happens to stop in to check on Nathan – please try to spend some time taking care of yourself. I don’t do this and I don’t like to preach what I don’t practice. But maybe if we all support each other and remind each other how important this is, it will become easier and easier. And instead of feeling guilty to use up time and resources for ourselves, we’ll feel happy to know that we are also taking care of ourselves.

I hope to share about my journey to self care. I will try to share what steps I will be taking from a depleted, empty cup, to an overflowing, full of energy cup.

We got our camera back. It had broken. So now I can go back to posting pics and videos of the little munchies. Here is my new favorite video:

And some pictures:And now for some thoughts.

I spoke extensively with the people at UnlimitedBrain.com today. Their program seems amazing. Ever since I read about brain plasticity something clicked deeply inside of me and I knew this was Nathan’s only hope. His body is perfect in every way. At birth every organ was intact, every muscle, everything. It’s his brain that’s broken. And his brain is slowly breaking his body. But when I read about brain plasticity, a light went off in my head. If we can fix his brain, we can fix his body. If we can rewire his motor cortex, his body will function better.

So I’ve focused on treatments that can fix his brain. I have tried to be selective and choose modalities that help the brain rewire itself. That’s why we made the humongous effort for Nathan to have stem cells – I had hoped maybe those new cells would become a new motor cortex. And that’s why we went to Reach and tried the Doman Delacato approach. The whole premise is based on treating the brain.

But from the beginning I have always wanted to preserve Nathan’s quality of life. I didn’t want to pursue treatments that would make him miserable. I wanted to cherish the very essence of Nathan, that very light, joyful, loving nature. Which has received a hammering during the last few months. From treatment to treatment to treatment.

And now I have found a methodology whose very premise is to preserve his joy. The most fundamental aspect of the Brain Repair Institute’s approach is that stress prevents brain development. So you work hard to preserve the joy.

Why aren’t I overjoyed? Why am I so afraid to jump on this and abandon all the other modalities?

They want us to stop everything we are doing because it all brings him stress. They won’t accept Nathan as a client unless we agree to stop everything and do only their program. They’ve agreed to allow some of his therapists to continue to work wtih him but just on a “let’s hang out” basis. They can’t force his body to do anything.

And when you look at that first video that I showed, I think you can understand my fear. He just mastered that skill. He can now press that little lever. And you can see how proud of himself he is. How everytime he pressed that lever he looked at me for much deserved affirmation.

And I am so afraid that if we start this new treatment modality it might make him lose what little he’s gained. This week he has been doing so well. Something seems to be clicking in him and his head control has been so good. I almost cried when I saw him at PT yesterday and he was holding himself in a supported sitting position, standing really well, holding his trunk well. And he was so so proud.

So although Unlimited Brain sounds like a dream come true, and an answer to prayer, I am so afraid. Of course I want to treat his brain. They are offering me a method to treat his brain, and nothing but his brain.

But my gut tells me, we can’t just treat his brain. His muscles need to be treated as well. Because any muscle that isnt’ moved atrophies. I don’t want days, weeks, months to go by without Nathan “exercising” and without moving his limbs. Will the brain repair itself quickly enough to allow his own brain to get his own muscles to move? I dont’ know. And I’m afraid that in the meantime his little hips, adductors, ankles, toes will get tighter and tighter.

I don’t have an answer for this one. I wish I could talk to an expert, ask some questions, get an answer. But no one knows. No one can give me the answer. And I’m not a doctor and I’m not a neurologist or neuroscientist or a physiatrist. So how in the world am I supposed to make these decisions????

I updated the therapy chart with my latest research, including nutrition and the Unlimited Brain.

You can click on the image to see a larger version of it.