What I learned …

A long time ago I started writing a book about my experiences with Nathan.  I do not know if I will ever finish it.  But for today’s post I wanted to share an excerpt.  This is the story of the day Nathan was born:

His due date arrived and I’d had no contractions, no signs of labor.

However, there was evidence that his head was growing too rapidly.  Hydrocephalus. Accummulation of fluid in the brain.  So that morning, the day of his due date, I decided it was time.  I had protected him in my body as long as I could.  Now it was possible that by keeping him in my body I might harm him.  The sooner he could come out, the sooner we could treat him for this new H word curse.

That day I knew that it was time. I was strong, peaceful. Ready.  As ready as I would ever be.
I called the doctor’s office at 9 am and arranged to go in for a C-section. By 10 am I arrived at the hospital. I was afraid, torn between wanting to run away and wanting them to hurry up, I wanted to meet him, I dreaded the possibility of his death.  It’s impossible to describe the myriad of emotions I felt that day as I arrived at the hospital.  Fear, hope, faith, a pain that loomed just beyond the faith.

Against the doctors’ advice I did not make funeral preparations.

Throughout that entire day I prayed. There was no other way I could pass the time.  Through hunger, thirst, tests, I prayed and prayed.  Doctor’s and nurses came in to ask questions, they took our vitals, they asked more questions.   Silence brought fear and I wasn’t strong enough for fear.  So I prayed to stay in the light.
30 min’s before I was scheduled to go into surgery, the neonatologist came into the room asking us about our wishes regarding resuscitation and death rites.  He wanted to know how far we were willing to go to keep our child alive.
Part of me screamed, “as far as you need to!”.  But another part of me did not want to play God.  What was most compassionate and loving?  Would it be cruel to go through every length to keep him with us? Would it cause him terrible pain?  Would it be more loving to let him go?  Or should I fight for him with everything available to us with modern technology?
Confused, I asked the neonatologist for his opinion. “If he lives, every moment of his life will be a struggle.  I would suggest you use a Do Not Resuscitate (DNR)  policy.  If he can’t breathe on his own, we can stimulate him slightly, pinch his feet, we can bag him, but if he can’t breathe on his own with this assistance, then just let him go.”
Would it be worse to have him live with tubes and assistance, or to let him die without help? It was the most difficult decision of my life.
But we followed the doctors advice and agreed to a policy of DNR. Today, I think of that with absolute horror.
Finally, the time had come.  I was wheeled into the operating room.  I had begged the doctor to let me bring an ipod so I could listen to prayers during the surgery.  Against his best judgement, he agreed.  I played the prayers for all to hear, so the doctors would be blessed, so my baby would be blessed the moment he came out of my womb, whether he lived or died.
Inside the operating room, I was given the epidural, and the wait began. It wasn’t more than an hour, but it felt like a year from the moment I had the epidural until I heard the doctor say, I see his head. Then I started shaking, and nearly lost consciousness. But I prayed and held on.
Moments later I heard what to this day is still the most glorious sound I have ever heard. My baby screaming. Owen was gripping my hands. “He’s alive, he’s crying, he’s breathing!”
The doctor pulled him out and they took him away to check his vitals.  He was breathing fine.  Quickly, they gave him to Owen, who brought him to me.   He had stopped crying. I touched the crown of his head with my lips. His eyes were dark brown and old as the depths of the ocean. Perfect.  My perfect son.  He was perfect, and he was alive.
There was a deep stillness about him.  Have you ever held your breath under water and looked up from the bottom of a pool? There is a deep deep silence and everything looks far away and you feel completely enveloped and embraced by a sense of tranquility. This was the stillness surrounding my Dorje. In those eyes I saw an extraordinary, special little being, wise beyond words, and absolutely beautiful.

It was a miracle. My baby was alive! Against all odds, he survived birth. He met the 3% challenge, and surpassed it.

The doctor left him in my arms and went outside to tell my family that he was alive. Shortly after he left, he came back into the operating room.
“What was his apgar score?”  There were over 20 doctors and nurses in the room, as they had expected a worst case scenario. They all looked at each other. There was such little expectation that he would survive, that nobody bothered to take his apgar score!  Owen and I had to laugh at this.  The doctor decided to make up a number.
I was wheeled into the recovery room, where Nathan was being bathed and changed into his first outfit.   Amidst the joy and incredulity that my baby had survived there was an unsettling feeling of fear.  Now what?  Will he stay alive?  Will he be able to regulate his temperature? Will he be able to breastfeed? Will he have seizures?
Clean and well wrapped, they brought him to me. The nurse warned me, saying “I’m sorry, I don’t know how this will go. It is possible that he will not be able to breastfeed. I will try to help you but be prepared for the fact that he may not be able to coordinate the sucking and swallowing motion.”
I held his face against my breast and shortly after I felt the strong suckle. Again, joy, relief, wonder.  He was doing it! He was breastfeeding! He had a strong rooting reflex and could coordinate swallowing! He had passed the next trial. I was holding the baby that was not supposed to live against my breast while he did something he was never supposed to do.  How wonderful!
After a little longer in the recovery room, they wheeled us to our room, which was full of family and friends, celebrating.  I was happy, exhausted, relieved.  My baby was alive.

At midnight, everyone left. Owen went to sleep in the extra bed, while I held the baby. I did not want to put him in his bassinet, could not bear the thought of being separated from him for even a second. What if he stopped breathing? What if he died and I wasn’t holding him?

All night that night I lay in bed awake, Dorje to my breast.  There was no milk yet, but I held him to my breast, hoping to nourish him.  Knowing the milk would soon come.
And my thoughts were rampant.  He’s alive. Now what? What kind of life will he have? Will he walk? Will he talk? Will he die before he’s one? Will he know me, laugh, learn, love? Are we going to go from surgery to surgery?
My faith had held me strong from the day of the diagnosis to the day of the birth, but in that long long night, I felt it seeping away while the weight of doubt rested in my arms. My faith had helped create the miracle. Why did I allow it to dissipate? Why did I start believing the doctors after they’d already been proven wrong?
I waited for daylight so people would come back and take me away from my thoughts, my fears. It was one of the longest nights of my life. I wish I’d gone to sleep.

And since that day I have struggled with my faith.  And if you lose faith you feel utterly and completely alone.  For the last 33 months I have felt alone in Nathan’s care, alone against the universe trying to improve his conditions.  I felt like I was trying to stop a tidal wave with my bare hands.  You might laugh and think, impossible.  But I tried and as most of you know, I tried hard.
This past week I found once again what I had lost … faith.  Having a full week to myself without motherhood or wifehood was a wonderful blessing.  I was able to elevate myself over the woods so I could see things with more clarity.  And the opportunity to meditate and to stop daily activities allowed me to really find that deep faith that had been hidden by months and years of busy-ness and fear.
I don’t think it was the retreat alone that allowed me to return to faith.  There have been many things leading to this experience.  Shifting paradigms.  Finding a good support system.  Allowing myself to see the little boy in front of me, and actively choosing to stay in the present.  Many things over the past few months have worked to create this moment.
Today I have faith.
I know that my son is perfect just the way he is.
I will continue to stimulate him, but without that hectic underlying feeling.   I have found a wonderful combination of programs for him: Medek, G-therapy, Chinese teas and acupuncture, Dr. Kenny, Waldorf.  He has a wonderful team of therapists.
I realize that there are 2 mommies in my body.  The mommy that worries about the boy in front of her.  The mommy who wants him to be able to play, communicate, interact with his environment.  She is thoroughly pacified and happy with Nathan’s current program.
Then there is the spiritual mommy who knows her son is perfect.  He is healthy, happy, with a wise, beautiful, peaceful soul.  She is aware of what a gift he is to the world and she cherishes every moment with him.  Today that mommy is more aware and strong and alive than ever.
And what I learned this past week is that both mommies need to be happy.  Both mommies need to be cherished and cared for.  I neglected the spiritual mommy for the last 3 years.  Today she is once again as strong as the other mommy.
This morning I sat with Nathan and we said our morning prayers.  He sang with me and enjoyed the quiet time of peace and tranquility.  And all of us…we feel so blessed 🙂

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