To Begin Again

3

December 28, 2010
Today I want to tell you how Nicholas began, and how he then came to begin again.  I mean not the obvious, how he began; I suspect that you know how that came about.  But, I want to leave behind a trail for someone to understand just what a long awaited gift he was for us.

My husband and I were in our 15th year of marriage and had always hoped for another child. I had always felt there should have been one more but even I was beginning to look forward to and to make plans for a life that did not include any more kids.

NicholasIt was okay, though, if you ever met our beautiful daughter Brittany who drifted into our lives early in our marriage, you’d see we’d been blessed above and beyond. It was easy to pour all our hearts and love into her.

We thanked God for her every day. There never was another child after her. We never intervened on God’s behalf.  We never sought out a solution we were just open to it happening again. When Brittany was 2 we ditched the birth control and left it up to God. We never lost hope exactly we just began to live our lives as if our family was done. Our joy was profound, deep, and complete when we did learn of his coming.

Nicholas came into my life around the same time as a milestone for me.  I had struggled for years with various issues that took me some time to break free of.  I had battled with a lack of self -worth, fears and anxieties, and had held a long yearning for a sense of purpose. I had a long lingering spiritual kind of emptiness. In the time before Nicholas came to be I had found a way back to the surface. I had never been so healthy.

I had built a relationship with God in a way that I could understand, and I was new and I had emerged feeling strong. I had bounced back. I stood glowing. I was confident and I wasn’t afraid of much of anything anymore. I had re-invested fully in my own life. Exercise and health and meditation and prayer had given me a fresh and excited outlook. I had stood my ground and come out on top!  One particular milestone was celebrated with a birthday cake and a candle. I had thanked God, I’d made a wish, I’d drawn in a deep breath–and I blew out that candle and my wishes were carried straight to Heaven in the twining tendrils of the rising wisps of candle smoke.

What is so phenomenally noteworthy about this to me is that my son celebrated with me. Nicholas was there. He was so tiny at just days into the creation that it would be a further 6 weeks before his presence would even begin to dawn on me. But, I love to think of us all there.  My daughter, husband and everyone I love. Then too–Nicholas, my son, was hiding there– just beginning inside of me. His presence coming into force so shortly after settled so many matters, for me. Here was proof that God was pleased.  Of course, all of those pieces came together later, at this point– all I knew for sure, was that life was good.

I began to know of Nicholas the moment I first noticed the pungent Sharpie pen smell on a camping trip. There had, I am sure, been other warnings and glimpses but this is the first one I can put my finger on that I recall I actually paused to notice. After 13 years had passed since carrying my daughter, and dozens of negative tests, it would have been easier to believe that I had a tumor than a pregnancy. But, on a camping trip in May as we registered for a campsite I got my first whiff and pop of warning in the intensely strong scent of a Sharpie pen as I registered our RV to camp. I recall pausing pen in hand inhaling deeply and the jolting sudden ripple and rising of the fine hairs on my body. But, as I’ve always done when it comes to my intuition, I simply capped the pen and passed it back, shook my head and walked away.

The next morning sluggishly the proof tried to register again as we met and had coffee with friends. Coffee a thing I deeply love was suddenly too strong in scent and flavor.  I recall a sudden punch of nausea. I stopped at a drug store and bought a test on the way home from that trip.  I stuffed it into the bottom of the bag and stuck it in my top drawer and there it sat for a few weeks more.  So enormous was my dismissal. It was a quiet conversation a couple of weeks later with my 13 year old daughter that started a silent whirring that finally could not be ignored.

We lived in a tiny apartment in Santee and the laundry facilities there were always crowded. To avoid the long wait Brittany and I would gather up all of the laundry on Sundays and drive just down the road and do it together at a Laundromat. It is still a very fond memory in my heart, those days we spent together.  Halving the chores and splitting up the mundane with our chatter.  She’d been born to me when I was still a kid myself.  Though I never forgot my responsibility as her mother we did so much growing up together. It’s simply how it is between us. We’d sit there in the car eating Cheetos and drinking sodas on laundry day. We’d compete to see who could ignore the buildup of the violent Chernobyl orange Cheetos dust on our fingers the longest before licking it off.  We’d listen to music and just talk as our laundry spun.

Usually we spoke of nothing at all. Just goofy mother-daughter stuff and catching up. One day our conversation turned to the night in April that I had celebrated with cake.  Brittany was talking about her pride and all of her hopes. In a moment I’ll never forget Brittany said something she’d never before discussed with me. She said quietly and matter of fact that if her father and I wanted to it would be okay to have another baby. I remember laughing with a rude snorting blast, I brayed Cheetos dust. I told her how her father and I had been more than blessed by having her and how I’d come to accept that she was to be my only child. I told her how that was good enough.  How she’d been so much more than good enough.  I don’t recall consciously thinking about it again. I don’t even think I flashed on the test waiting in my top drawer.

It was the Wednesday three days after our conversation, May 31, 2006, when I got up from the computer where I was writing an article and for no reason at all, no thought at all, I walked to my room and got the test. I do remember the tunnel vision I had as I walked from the hall to my room to the bathroom and took the test.  It changed almost immediately.  I picked it up and shook it like an Etch a Sketch. On legs so wobbly I couldn’t believe they were my own I walked to Brittany’s room, and shook her awake.  I said “Tell me–do you see what I see?  Are there two?” Her eyes were big like dinner plates and she had that shocked awake look when her head slowly nodded. It was that moment of her confirming it to me and that conversation in the car and her blessing that I always will remember. For the rest of my life I will remember that it was Brittany who spoke of him first. I tell Brittany that it was she who spoke her baby brother into our lives.

I knew without being told the same way I knew Brittany would be a girl that the two lines on the test were Paul’s son peeking out. I went out that day and bought a stuffed little frog.  For Brittany, all those years before I had been equally sure of her gender without confirmation and it had been a pink giraffe I bought.

It was at 22 weeks into my pregnancy that I got my proof.  There in the wavering wobbly light of an ultrasound on a television screen.  It was 4 D.  The room was once again filled with people I love.  Everyone in Paul’s family sat watching with us.  I remember that at 22 weeks our son looked rather like the famous image in Munch’s The Scream. On the tape of the ultrasound we brought home you can see Nicholas bob and bounce on the waves of my laughter as I had that thought.  When we saw and had confirmed his boyishness you can see him rock and roll with my laughter again.  I remember the one sharp stinging tear that had escaped my eye to roll down my cheek. My tears were the sudden unannounced kind like when you are standing in a crisp Autumn breeze and have  been sun dazzled in some early morning. The tears, like Nicholas, had been until just that moment, were my private secret.  Right then and there on the ultrasound, we had the technician write his name.  It said, “Hi mom and dad love Nicholas!” Oh, we were so complete as a family then.

On January 10, 2007 at 7:41 a.m., on the date I planned ahead so that my son’s date of birth would match exactly with my father’s birthday they showed him to me.  I was surprised at his blond hair and round little face. But, I breathed him in. I knew he was mine. They immediately took him from me.  My diabetes, though I’d tried so hard to control it and eating and exercising carefully and with diligence, had prevented his body from learning to make sugar of his own.

He spent two days in the NICU.  His sugar levels at birth had been low the last reading before his stint in the NICU began was 22. With IV sugar on board, he began to pink up and come around.  It was 11:00 the night he was born before I truly held him.

Paul had gone home and it was just me when I finally took him in my arms.  I was woozy from blood loss and the beginnings of blood pressure that over the next few days climbed to a head splitting 195/100.  I was so ill. Sucking down nausea I’d had to hide from the nurse took all of my concentration, but my need to see him was all that mattered. I’d had to sit up straight in bed to prove I was fit for a half hour. I did hiding the pain in my head the swirling blur of my vision that had narrowed to pinpricks of flashing light and the most awful nausea I’ve ever had. I had to prove to her that I could do it, because if I was sick she said she wouldn’t take me in. All the way down the hall as she wheeled me to see him I fixed my eyes on points ahead of me on the wall terrified I’d vomit and give myself away.  My need to see him overpowered everything else.

When I did lay my eyes on him it was profound the silence that blanketed the air in the room.  The nurse gave him to me and stepped out.  I am always surprised when they do that when a nurse lays an infant in my arms and walks away.  There we were my son and me.  My head buzzed and was fuzzy and muffled like it was wrapped in thick cotton. I floated away with my sickness. I’d made it down that long, long, hall and I was holding him and it was enough. I drifted in and out of soft awareness. Every time my head would nod down I’d wake to find myself anchored to the earth by his soft weight in my arms. I loved him immensely. Immediately. Completely.

We bundled that boy up and we took him home. I had written the words on his birth announcements myself trying to touch on our enormous gratitude and we sent them out the day we got home. We were off and running! Of course now in looking back even then there were things. He was stiff when I held him. People commented on it. One friend of that time even dubbed him “The Silver Surfer”.  He didn’t smile or laugh much. He often seemed pensive on the verge of being unhappy or frightened.  At seven months I did take him to his physician and said I thought that something might be abnormal. I explained his close to complete lack of laughter and his stiff bearing.  I said I thought something might be wrong with him. She laughed at me. She said he was meeting every milestone and to relax. She called me a normal over fearful mother and said I should not worry. So, gratefully, I gulped down her words and I took my precious baby home and dismissed my fear.

I attributed his seriousness and stiffness to his Capricorn risings. I said to myself that he was like my father, a quiet and serious man.  They shared that birthday, so why shouldn’t it be that?  I really came to believe it too. I did return to the doctor’s office when he was almost two and discussed the oddness of his speech that would come and go and the intermittent tip toe walk. Again I was dismissed. I had screwed up my courage and asked about Autism by name. I told her that the rates of Autism were 1 child in 150 and she laughed at me and said “That’s absurd! That would be an epidemic and if it were true the whole world would be talking about it!”  I wanted to believe her.  I quickly dismissed my own discoveries on the CDC’s fact page on Autism Spectrum Disorders on their official website. It was so much easier to gobble up her words than to look at what I feared. So, aside from the two conversations I had with his doctor, we had nearly a solid two years of nearly undisturbed joy.

We watched this boy of ours who became almost unbearably beautiful.  He was so handsome that it was spooky. He walked at less than 9 and half months.  Everything he did was celebrated by us. We loved him so very much!  Though he was serious his near fearful pensive state never did formulate into a full blown state of unhappiness for him.  In fact the older he got and the further he grew under our kisses, hugs, smiles, and our beaming joy at his every move his mood seemed as if it had lightened. We began to see smiles and to hear bits of laughter if only somewhat rarely or intermittently. But, suddenly they were there where they had not been before.  We loved him into his smiles and laughter. His speech was still an oddball issue. Words were born and then lost—or not quite articulated right, but he tried consistently. He kept trying; it looked like speech would develop over time. I asked his doctor about that too, we were assured that boys just develop slower. He was just going to be a serious kid after all! We thought we were off.

We passed our time in a wrapped up pink clouded sort of bliss and it was all the way until October drifted toward a close in 2009 that we lied and dismissed and ignored the things that really should have been said.  My moments of courage with his doctor and the shivery premonitions that touched on my skin from early in his life—the fears I swatted down— should have been pursued and therapies started. We missed it, and when we weren’t missing it, his doctor was. We should have seen.

But, how could we? How could we look for too long at those things? It was too painful to stare them down; we needed to be talked out of them you see! We were talked out of them, every single time. He was the completion of our destiny and our proof that we were touched by grace. It was too all encompassing a special twist in our road to look at, at first. Like staring at the most beautiful painting in the world and trying to commit every part to memory in the face of a white hot light.

In late summer of 2009 on the heels of an odd silent 15-hour car ride on vacation where Nicholas did not respond or complain, did not make a noise or even much of a whimper and just sat in his seat completely engaged inside of himself eyes on the windows but not on us. His stiffness and pensive distance suddenly returned to a full-fledged roar—and it remained that way without lightening up ever again—The smiles and laughter faded away, his retreat was swift and complete. In looking back from a safer distance it is true to say that I was beginning to become aware. I had lost parts of my son on a freeway that had closed down to a parking lot in the middle of a forest fire– just outside of Aspen Colorado.

On that vacation, Nicholas garnered a lot of our attention. New habits and funny behaviors and rituals suddenly sprung up as if from out of the dust on which he walked. That road trip drew our eyes to him again and again through the rearview mirror and one of those nights after a long bizarre day my husband and I agreed that when we got home it was time to figure it out.

We got home and began taking steps. But, it was like an uphill battle to get attention to him. We carefully watched him all the way until October of 2009. I had returned to his doctor she said she’d refer him for a hearing test. We saw a speech therapist that we were referred to, finally. She turned out to be a horror of a person discussing her lack of belief in Autism in general and her menstrual cycle and accepting calls from her son throughout much of the appointment.

But, the final crack and roar of the shattering of my carefully held denial and the shards of my dream of perfectly ordinary exploded outward in the wake of a simple home test.I finally could not lie for a single moment longer. I ruled out the latest straw we’d grasped at the idea of “deafness” that we’d desperately begun to hope might be at play. In a sudden irreversible millisecond of bravery I walked up to him while he was repeatedly playing the same three notes of a song on an electronic toy and starting them over and over again. I called out his name loudly as I clapped my hands three times just in front of his nose sharply. He did not even flinch nor did he raise his eyes at all. He didn’t miss a single beat in his routine. I strode across the room and turned my back and whispered softly “Would you like ice cream, Nicholas?” he responded immediately to that very rare mid-day offer of a nighttime treat he bee-lined from across the room and came up from behind me to the freezer. I nearly collapsed to the floor. The problem wasn’t in his hearing but in splitting his attention from a preferred activity to another one. Unless an even more preferred thing was offered…

I called my husband on the phone and with my breath seeping away I said “He’s not deaf, it’s bigger—it’s bigger than that. We both know what it is! We have to do something!”

We had already battled for months to get his doctor to acknowledge and to start the diagnosing process and then we lost more time to enormous wait lists and insurance denials. We paid out of pocket going broke in the process for things that we later found didn’t “officially” matter. We were even held hostage by the speech therapist that refused to give us the report back that would take us to the next phase of the process. It took the school district and my physician’s office haranguing her senseless to finally get its release. The damage to my spirit had been done long before then. I became a wounded person after the battles I fought—he was 2 years and 9 months by the time he was diagnosed.

I received a lot of professional disdain for not seeing it sooner. I can’t count the number of times our name finally came up on some waiting list, the same three to six-month wait lists the very people peering at me, always failed to take into account, and I got the “look”.  I also cannot count the times I answered why we had waited so long. They’d ask and then immediately go back to scanning the paperwork because they didn’t care about my answer. It was the emotional version of my feet up in stirrups as my whole life was probed with clinical coldness. One person even tsk-tsked me out loud. I was too aghast to do anything but stare in numb shock. I hadn’t known about Regional Center, nobody had told me. No professional ever did, it was a parent of a special needs child who finally did. I hadn’t known!

In the end I simply learned to say I had been completely and utterly ignorant, I hadn’t known what I was seeing. It was truth at its simplest, but it did spare a lot of the good parts of the apple away along with the peel. So much nuance, so much of what had stacked up to get in the way, so much that tied to my self-worth as a mother to this beautiful child– got lost in saying it like that. I quickly learned that it didn’t matter anyway. He needed help. The humility in learning how to give the simplest answer so they could quit gob-smacking at me and get their attention onto my son was a jagged slicing horribly bitter pill at first. I came out bruised and battered. I think I lost parts of myself.

In those next months until diagnosis, the complete picture finally showed itself. The lack of tears and smiles and laughter, the lack of response to the sound of his name, the frozen pensive stance, the fluttering hands that had suddenly appeared, the once intermittent tiptoe walk that was now full time, the delayed speech, the humming and grunting sounds, the insomnia—the under reaction and the overreaction to sensory input—the lack of appropriate pain response, the lack of need for touch, were all hallmark of something big. The intermittent became constant. But, they had all begun to some degree in his first moments of life. Some behaviors would come and go–either in reality or in our needful imaginings. But, not anymore. Those things had in the last several months suddenly returned in full force and new things followed right behind–the chronic became profoundly–breathtakingly–floridly acute. Oh my God–oh sweet little boy—it was going to be Autism after all.

The eighteenth year of my marriage could have ended as my last year. The truth is that a lot had to do with me again too. My poor baffled husband never knew if he’d return home to find me weeping in a pile of laundry that was suddenly quite beyond my ability to master, or if his very walking in the door was the stick that would addle a puff adder. He was not held to the same standard as I was. I envied how he could walk out of the door and leave us there and get to focus on the blissful things of neat paperwork and concerns that had answers in the safety manuals. There was no book with answers for me. There was the shrieking of the various Autism camps all trying to corner the theoretical market and capitalize on it by thrusting it forth as fact. There was the decision of adopting any of the theories I had to choose from. There was very little hard science to pull on. Everyone from Penn and Teller and Jenny McCarthy had an opinion. But, there were no answers for my real life child. There was only fighting an uphill battle to even get him labeled. My husband took a lot of heat and he watched parts of me disappear. I spent time alternating between tears and rage.

In a very smart move that year just before my birthday, he took me up the long hill into Big Bear. I slept in the car. I slept much of that entire visit in that cozy kitschy little cabin with the beautiful tree carved into the middle lit with lanterns and twinkle lights. I slept and slept and slept. One night I rose from the massive oak bed to descend the stairs and emerge onto the porch and I stood there in an icy air. I raised my face to Heaven. I had no words but God and I were there. I felt Him again for the first time in a long while. Under the stars in the frigid air of the mountains and right there with me in the place I so deeply adored. There weren’t any answers for me but feeling my God there–became a lifeline. It healed something inside a little bit.

I returned frozen but more awake than I’d been. I sat in the Jacuzzi tub next to the big windows that I flung wide open the heat from my tub mixing with that icy air of Big Bear in December until the cabin filled with steam and only the twinkle lights and lantern light remained. I sat like a numb queen alternating between iced tea in a beautiful crystal goblet and hot spiced apple cider in a cup. And then I slept some more. My husband just let me be.

We only spoke of Nicholas once on that trip. I said to my husband “It’s all different now, you know. I want it to be alright, I want him to be okay. I am afraid I’ll let him down–it’s scary and it really hurts” He said he knew. He promised to stick by me forever, and to help me and to take responsibility for every choice we made equally and he reminded me that I was his very best friend. He only asked that I come back to my funny self, he said he missed me. My sorrow broke his heart far more than anything else. I said I’d try.

We returned home and three days later we sat in another cold blank office and listened as our son was officially diagnosed severely Autistic.

By then it was no longer any surprise. We had gotten there, footsore and weary, but we’d arrived. Though nothing of our hope and our love and belief in Nicholas had changed–somehow everything else had. In the middle of all of that noise stood the most profoundly wanted and dearly beloved child, nothing ever changed about that. We stood in the moment of that indrawn breath of the aftermath and made ready to embark on a new dream built from the beautiful glittery pieces left to us.

Autism? It had been there all along—Our destiny—his destiny—everything had taken a twist and a curve. A kaleidoscope bright vision of all that we’d hoped and planned for grew sharp and unbearably beautiful before it finally gathered itself together like molten silver licked pools of mercury, and suddenly it imploded in upon itself.  Our second shot at grace had been given an even more special twist. He wasn’t going to be as ordinary as milk.

Everything we planned for Nicholas that had begun long before his first breath– had to begin again. We had no idea at all what that even meant.

 

It was he that we waited for all of these years
Our miracle,
Our blessing,
Our secret hope.
In one tiny breath, he is here,
Our son is born.
All bundled up in a second chance.
And it is he who has made our family complete~

Paul, Cynthia, and Brittany
Are pleased to announce the birth
Of a little brother
And son
Please welcome
Nicholas
January 10, 2007
7:41 A.M.

3 Comments
  1. Maria Costello says

    It was heart-warming to read your account, Cynthia. My 7 year old son has mild Asperger’s and ADHD. I empathize completely with what you went through in getting your son diagnosed. Our pediatrician also pooh-poohed our concerns but WE knew there was something. I took it upon myself to take my son to see a Naturopathic doctor, who specializes in treating people on the autism spectrum, when he was nearly 3. It was thanks to hours spent Googling and our Naturopath’s advice that we were able to start helping our son. Thank you for sharing your experience, to let other’s know what a journey this is. Best wishes, Maria PS I wrote a poem that is here on Angie’s Diary about my son called “I Just Write it ‘Love'” 🙂

  2. mccrackyn says

    This story was so difficult and amazing to read. I feel extremely honored that you have shared this story. You are brave and generous to be so open in showing the anguish of your journey. I can see from the date of this story and the date on the birth announcement that this was written not long after Nicholas’ diagnosis. It is an incredible counterpoint to other pieces that I have read from you. This time capsule of pain and truth is painful to visit but awesome in it’s honesty. Thank you so very much for publishing it.

    Blessings to you, Paul, Brittany and, of course, Nicholas.

    Again, Thank you.

  3. Anonymous says

    Reading this, your words were like I was there. In every moment of this walk this far. The surprise, the bliss, the concern, the doubt, the fear and the full circle of acceptance and moving forward. The growth. The milestones. The self-willed strength to persevere. I appreciate your reconnect with a God of your understanding. YOU! Embody strength of a good mom. YOU! Don’t give up. YOU! Found your answers even when you didn’t want to. The negligence of the repeatedly visited family Dr. has not broken your trust for other medical sources. And by writing (and so honestly and well I add) you are helping others. Strength is what I see. It’s encouraging. You’re very colorful. Nothing in life has taken that from you. Strength baby! Strength.

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