A little piece of heaven

Yesterday I spent a couple of hours on the phone with a lady name Kirshner who runs one of the brain injury Yahoo groups: BIA4KIDS. This is one of my favorite groups as most of the parents are very proactive about helping their kids. She shared with me a great deal of information and I thought I would share it here.

The original topic was whether she thought Nathan would be a suitable candidate to receive stem cells in China. Her opinion was NO. She explained that for stem cells to work in the brain they have to cross the blood brain barrier. Once a child is 3 years old this barrier is thick and the stem cells may not make it through the barrier and into the brain. The way that Beike gets around this is by giving the kids a shot of stem cells through lumbar puncture – this guarantees that the cells go right to the brain. Nathan, however, is not a candidate for a lumbar puncture because he has a shunt. There is a risk of infection if they do a lumbar puncture on kids with shunts as the infection could go right to their brains. She believed Nathan could have gains with just the IV injection of stem cells but she believed the gains would be minimal and there wouldn’t be sufficient ROI. Now Kirshner is a HUGE proponent of stem cells so for her to say she doesn’t recommend stem cells for Nathan is something to take notice.

We talked about Nathan’s MRI. She was amazed at how well he does given how affected his brain is. She sees signs of very severe damage and told me how lucky we are that he can function as well as he does. She believes that part of the reason for this is that he does have at least some brain tissue in each of the lobes and there is a little bit of communication between all four lobes which allows him to function.

We talked about all of the different alternative modalities and she believed that I was on the right track by choosing several different paths. However, like everyone’s been saying, she believes it’s important to stick to each technique for a while to give it a chance to function. She told me about Gene Lewis and said he’s the best sensory therapist available. I’ve contacted him and made an appointment. He is trained in the Doman-Delacato approach but has integrated many other healing modalities. She believes this is very important for Nathan because he needs therapies that emphasize communication between the hemispheres and patterning is a great way to do this. He seems to also use other healing modalities so I am willing to talk to him to see what he thinks!

She also emphasized the importance of HBOT. She believes that every child with a brain injury should get regular HBOT treatments. We have a chamber but haven’t been using it, which she reprimanded me for. I have always had doubts about Hbot because I’ve never understood the difference between malformation and brain injury, and I wondered if maybe Nathan would gain limited benefit from HBOT since he has a malformation, not lack of oxygen. She explained that regardless of what the brain looks like, any and every brain would benefit from regular hbot treatments because it improves oxygenation to the brain at the cellular level. So my goal is to get our chamber back up and running so we can start diving again.

She recommended the use of theratogs to give him a little bit more stability and better alignment. We have theratogs but stopped using them because we started Medek. Medek is all about removing support, and theratogs are all about giving support, so there seems to be a conflict there. I will be writing to Ramon to ask him about this.

Finally, she reccommended the following supplements: Vinpocetine and Magnesium calcium. She explained that vinpocetine and magnesium calcium in high concentrations has a vasodialation effect that also helps for kids with brain injuries. I don’t really understand this yet but figured it was worth exploring! Coincidentally, I have an appointment with Dr. Kenny tomorrow so I will ask her about this.

It was great speaking with someone who has walked this path ahead of me and who has great knowledge and understanding about the brain injury world. I’m going to check out the things she recommended and hopefully we will be able to knit everything seamlessly into a pleasant, gentle rhythm for Nathan.

3 years ago today I woke up without knowing if you would survive outside of my body.  3 years ago today I went to the hospital wondering if you would take even one breath, if you would survive to know me or the world around you.  3 years ago today I was told that signing a Do Not Resucsitate would be the most compassionate thing I could do for you.  3 years ago today you chose to be born in a broken body to bring endless happiness to all of us who choose to be in your life.  3 years ago my greatest teacher was born.

When you were first born I was so scared.  Your first night I stayed awake with my heart palpitating with fear.  What kind of life will you have?  Will you be happy?  Will you enjoy the world?  Will you know who I am?  Will you laugh, speak, willyou say “I love you?”   I was so afraid Dorje, drowning in fear.  I even wondered if maybe it would’ve been best if you hadn’t taken a living breath.  I was told by doctors that your life would not be worth living, that you would have one problem after another after another.  A little part of me believed them.

And then you spent 4 months crying and I do not know how we all got through that time.  But you showed us the meaning of strength.  You showed us the meaning of courage.  You fought against hydrocephalus.  You fought against a bacterial meningitis.  Even then the doctors couldn’t understand how you survived such a sizable infection.   They were surprised you lived through so many assaults on your life.  Not only did you live, you spent 21 days in the hospital being poked and prodded, and you kept a happy mind through it all.

And then you were all fixed up and ready to experience life.  And how you have experienced life!  You have been to more places in your 3 short years than most people have in a lifetime, from New York to Oregon to Singapore and Thailand to Dominican Republic to Florida to England and more.   You have experienced more therapies than can be imagined, from ABR to Medek to Anat Baniel to Stem Cells to IAHP.  You have been to a million doctors, a million therapies and therapists, you have tried so many devices.  And through it all you have stayed happy, with an open heart and a desire to make others happy.

You are my hero.  You have taught me so much.  You have taught me that it is okay to be different.  You have taught me about the things that are really important in life.  You have taught me to appreciate things so deeply.  You have taught me not to take things for granted.  You have taught me how to ask for help and to offer help to others.  You have taught me about the importance of having peace in my heart.  Most importantly, you have given me the opportunity to transform my life into a meaningful life.

3 years ago I made the determination that I would fix you, at any cost.  I decided that you would be the child to defy all odds, that you would prove all the doctors wrong, that you would show the world that a diagnosis was not a predictor of the future.  And I set out on that path with every ounce of energy and desire available to me.  It wasn’t long until I was depleted and unhappy and on a roller coaster that kept hitting lower and lower lows.

It’s taken me 3 years to understand deep in my heart that you are perfect just the way you are.  It’s taken me 3 years to see that your mission in this life is to show an example of how to keep a happy, loving mind even in the most, and I mean most, adverse of circumstances.  Through everything that I have put you through, through everything that doctors have put you through, you have maintained a heart full of love and innocence.  You have a charisma about you that makes everyone that meets you happy.  Every day I get to watch people transformed around you.  I get to watch as you take away the darkness around them and give them love and happiness.  I get to experience the magic that you work in those around you.  You, who are the most helpless of beings, help others with every breath you take.

And today, as you turn 3 years old, I want you to know how proud I am to be your mother.  You fortunate I feel that you chose me.  I cherish every breath you take and every moment that I get to hold you.

Today I understand that it is not my mission to fix you.  Today I understand that it is your mission to fix me.  Today I understand that it really doesn’t matter if you walk or talk or if you ever hold up your head or say “mama”.    Today I understand that balance is important, that extremes are not healthy.  You have taught me that I can accept you just the way you are while continuing to give you opportunities for growth.  You have taught me that the only thing that matters is to experience love and happiness and gratitude.   You have taught me the most powerful lessons that anybody could ever learn.

Happy Birthday my perfect son.  Thank you for choosing me.  Thank you for choosing to appear in this world, in this broken body, to teach such a beautiful message.  Thank you for the happiness you bring into my life every single moment of every single day.  I love you so much Dorje.  Happy Birthday.