In the beginning…

I was 26 years old when Jonah was conceived.  Larry and I had two beautiful, healthy children at home.  We never dreamed that something could be wrong with this baby.  Due to my age, and my belief that nothing bad could happen to my child, we refused all prenatal testing.  My pregnancy was fairly normal, given that I was exhausted all the time and had two active toddlers at home.  Toward the end of the pregnancy, we had a few scares.  Jonah just wasn’t moving as much as he had been.  Something didn’t feel “right” to me.  So, after a few scary doctor’s visits, ultrasounds, and lots of sleepless nights, we were told that Jonah more than likely had a condition where the urine was “backing” up into his kidneys, rather than draining down into his bladder.  This was very common, wasn’t really severe, and after a quick surgical fix after his birth, he would be fine.  We were sent home to enjoy the remaining 10 days of our pregnancy…with much lighter hearts, and the belief that all would be well.

Jonah Robert Edge entered this world on February 3, 1997, in the early morning hours.  This labor was the hardest of all of my labors.  Jonah was in a face up position, which meant that the back of his head was pressed firmly against my tail bone….making me believe that I was going to die…or maybe I was wishing I could die to escape the pain that NO amount of pain killers could deaden.  The other really strange thing (strange to me at least) about this delivery is that my water never broke with him.  When I reached 10 centimeters, the doctor had to break my water, and “strip” the membrane away from the baby before he was born.  That didn’t happen with my other deliveries.  Anyway, Jonah entered the world blue, wet, and angry.  He had the most pathetic little cry I’d ever heard.  That was my first inkling….

So the nurse holds Jonah up to show me, he is crying this pitiful, thin, weak cry, and the first thought that ran through my mind was “what is wrong with him?”  The nurse wrapped him quickly in a blanket, rubbed him vigourously for a moment to stimulate him, and then handed him over to me.  As I looked into this little boy’s unfocused gaze….a chill overtook me.  I knew something wasn’t right.  I had no idea what it was…couldn’t articulate my fears, but this child was just not like my other babies.  I knew that from the moment he was placed in my arms and his head kept flopping around, and he was purple, and his gaze was uncoordinated, and….a million differences jumped out at me, from this child lying in my arms.

Within a few minutes, Jonah was whisked out of my arms and taken to a corner of the room, where the nurses proceeded to deep suction his airway, continue to stimulate him physically, and generally work him over.  I remember lying there, as Dr. K. was delivering the placenta, watching Dr. K. glance between me and Jonah.  He was asked several questions in whispers by the nurses, and then I remember him placing his gloved hand on my knee and saying “Let’s get this over with.  The baby is fine….just look at me.”  Somewhere between delivering the placenta, and stitching my episiotomy, Dr. K. indicated to the nurses that they should take Jonah on to the nursery.  I don’t even recall if Larry went with them.  I don’t think he did, as I have no pictures of Jonah’s first bath, temperature check, etc. like I do with the other children.

I was in a lot of physical pain at this point, more so than with my other children.  I was also scared…but couldn’t say what I was scared of.  Larry and I had decided earlier on that this child would complete our family, and that I would have my tubes tied following the birth.  I remember getting a booster shot in my epidural, to prepare me for the OR.  It felt as is an elephant were sitting on my chest, and I just couldn’t breathe.  Looking back, I know now that it wasn’t a physical problem.  I was not reacting to the epidural… I was reacting to the fear and confusion I felt over my child.  The doctor who was to do the tubal ligation entered my room, and asked me to lie flat on the table, while he examined my uterus, poking and prodding on my abdomen.  For the first time in my life, I experienced a panic attack.  At the time, no one knew what was wrong with me, or why this was happening.  But looking back…I now know.  I couldn’t lie down.  I couldn’t breathe and was coughing uncontrollaby.  After a dose of prescription cough medicine, and a sedative through my IV, I was no closer to being calm.  The doctor was kind…and suggested that we wait until tomorrow to do the surgery.  I don’t know for certain…but I think he knew something was wrong with the baby that I just delivered, and I think he knew that no one had yet told Larry and I what it was.  I am forever grateful to this doctor…for giving us time to think through our decision to not have more children.  So, the decision was made for us to wait till the next day for surgery.  The bad point in this was that they wanted me to keep the epidural in place till the surgery was over, rather than having to place it again the next day.  So, I was cleaned up, calmed down a bit, and taken to my hospital room.  I was very drowsy, from the sedative, and Larry decided once I was in the room to go on home to the other two children for a few hours.  I slept deeply for about 4 hours.

Once I had awakened, I immediately placed a lunch order, got out of bed and went to the restroom, and wandered around aimlessly in my room until my lunch arrived.  Once I had eaten, I wondered where my baby was.  I called the nursery, only to be told that Jonah was “cold” and needed to be kept in the warmer for a while longer.  I was assured that he would brought to me as soon as possible.  When I asked if I could come to the nursery to see him, I was told that wasn’t necessary and they would bring him out to me shortly.  This was around noon time.  I was bored, so I called Larry.  He was at home with the other children, and would remain there until later in the evening.  I sat in my hospital bed, alone, wondering why no one was visiting.  I realized that this was my third child, and just assumed that no one wanted to interrupt their day to visit.  I felt very alone, and unloved during the long hours of that afternoon.  It wouldn’t be till later in the evening that I would find out that the nurses, knowing the diagnosis before I did, decided it was in my best interest to not allow visitors.  There was a sign posted on my door saying that I wasn’t allowed to have visitors, and my phone had been turned off at the switchboard.  I was allowed to make calls, but wasn’t allowed to receive calls.  The list of names of the people who had actually come to visit, but weren’t allowed to, still warms my heart today.  The nurses did take down the names, and did present me with this piece of paper later.  The pain of their decision to restrict my access to visitors was lessened tremendously by the reality that I DID have people that cared, people that tried to visit and were denied, and that I wasn’t forgotton about.  That is the only good thing that came about by the decision of nurses who didn’t know me, didn’t ask my opinion, and decided on their own what would be best for me.

Throughout the afternoon, I called the nursery repeatedly and asked to see my baby.  The answers ranged from he was still cold and in the incubator, to they were really busy right now, but someone would bring my baby to me as soon as possible.  I was not allowed to visit the nursery, either.  As the afternoon wore on, and I was alone with my fears, my hurt feelings over having no calls or visitors, I began to get angry.  Really, really, foot-stomping angry.  By the time Larry arrived that night around 5:30 pm, I was out of control with anger.  I know now, of course, that the anger was being fueled, in part, by my fear.  My fear of what was wrong with my child had now grown to monstrous proportions.  Once Larry arrived, and realized the state I was in, he too became concerned.  Where was our baby, and why had he been kept from me all day?  And what was wrong with our family and friends, for not even calling to check on me?  His anger grew also.  By this time, I had had enough.  I left Larry sitting in my room, and flounced to the nurses desk in all my anger.  Flounce is a relative term, and since I had just delivered a child, had an episiotomy that required several stitches, and still had the epidural needle protruding from my lower back, I more or less shuffled down to the nurses’ station.  In my mind’s eye I was flouncing…in reality I was shuffling along like a 90 year old woman.  I arrived at the nurses’ station, found my nurse sitting there reading a magazine, and I was overwhelmed by anger.  I have never been more angry in my life.  I announced, didn’t ask, but announced that I was to receive a pain shot for my bottom, have this epidural taken out of my back, and I WANTED TO SEE MY BABY NOW!  Yes, I was screaming at this point.  I noticed the nurse looking over my shoulder at someone…and felt a gentle touch on my arm.  I turned around and there stood Dr. K.  The look in his eyes deflated my anger, and brought the fear back to the front.  He asked me, nicely, to return to my room.  He said that my baby had just been brought there, and Larry was now in there holding him.  He held my arm and steadied me on the walk back down the hallway to my room.  As I approached, I noticed the “No Visitors Allowed” sign on my door, and suddenly the anger was back.  Dr. K. was calm, and allowed me to scream at him, all the while nudging me to enter my room.  I didn’t want to.  I didn’t want to go in there, where my husband was finally holding our newest born son.  Something scary was in that room, and as long as I didn’t think about it, could be angry about other things…I didn’t have to face the scary thing that resided in my room.  But I did enter that room, and my life was forever and irrevocably changed.

I couldn’t bring myself to look at Jonah.  I looked at Larry, saw him cradling our youngest son, just as he had done with the others.  I sat across the room from them.  Dr. K. started off by asking if I had noticed anything different about Jonah.  I responded with a question of my own.  How was I to notice anything different, as I haven’t seen him all day?  Dr. K. was shocked.  He had not written an order for, nor did he realize the nurses were, keeping Jonah from me all day.  He was as upset about that as I was.  He went on to point out the differences in Jonah…the single crease across both palms, the low set ears, the slanted eyes, the low muscle tone…and then he proceeded to tell us that he suspected Jonah has Down syndrome.  I really didn’t even know what that was…but I knew enough about my responses to mentally retarded persons to know that this was a bad thing.  I didn’t want this.  I didn’t sign up for this.  I couldn’t handle this.  As I sat watching Larry watching Jonah…Dr. K. again touched my arm.  His eyes shining with the tears that I refused to let fall, he said something that changed my life.  He said “I don’t know why bad things happen to good people.”  And again the anger was back.  This man was talking about MY son, and calling him a “bad” thing.  And that is when the anger became a good thing in my life.  It served a purpose.  It allowed me to see this impossibly tiny baby for who and what he was….my son.  Knit together in my womb under God’s watchful eye…just as my other children had been.  He was not a mistake, nor was he a “bad” thing.  This was the beginning of my journey to accept Jonah just as he was…and it has been a long journey.  One filled with mis-steps, wrong turns, and bad decisions on my part.  It is a journey that I embarked upon over 11 years ago, and am still travelling on today.

After Dr. K had left our room, Larry and I were…in shock.  There was no joining together, physically or emotionally, to say that we would handle this situation, love this child, and make everything right.  For the first time in the history of our marriage…we were torn apart.  Not by this child…but by our fears.  Larry left early that evening, after helping me with my bath and ensuring that I had taken the sleeping pill the nurse brought to me.  I remember lying in my bed, in the dark, hurting too badly for tears to fall.  I’ve never hurt so badly that I couldn’t cry…but I just couldn’t.  I drifted into a restless sleep, where I was haunted by nightmare images of myself in 25 years, feeding, diapering, carrying my 25 year old son.  That is the mental picture I had in my head of life with a child with Down syndrome.

I awoke, sweaty and trembling and actually crying around 1:oo am.  No amount of prayer, pacing or window sitting could calm me.  Around 1:30 pm I put on my robe and slunk out the doors of the maternity ward.  I was fortunate, and my room didn’t require me to pass the nurses station.  I was also freed from the epidural in my back, and could actually walk upright.  Something was drawing me to Jonah….I’m not certain what it was, but I just knew that I needed to see my child.  My plan was to skulk to the nursery viewing window, catch a glimpse of him sleeping peacefully in his swaddled blankets, and to return to my room and some more much needed sleep.  As I stood looking in the window of the nursery…I was a bit alarmed to see that Jonah was no where in sight.  Oh well, I thought, he must have been hungry.  I’ll bet they are going to bring him to me now to feed him.  I worried that I might have missed them in the hallway, while they were bringing him to my room.  As I turned to go back to my room, I caught a glimpse of movement further down the hallway.  I tiptoed over to peer into the window to see what was happening.  This was in what is called the “special care” nursery.  None of my other babies had ever been there, and it rarely gets used at our small, community hospital.  As I approached the window I was shocked.  There was an ER doctor, 4 nurses, and respiratory therapist huddled around a baby’s bed.  I was immediately hit with pain and compassion for this baby and it’s parents.  As I turned to go, one of the nurses saw me.  And motioned for me to wait a moment…I looked closer and saw that the baby who now had 2 IV’s, a warmer and an oxygen hood was MY BABY!!  It was Jonah lying there…a bit blue, struggling to breathe, and having no energy to cry…even when the respiratory therapist stuck a needle in his arm to draw blood.  I stood rooted to the spot, unable to cry, unable to speak…and then a nurse joined me in the hallway.  She said that Jonah was OK, he had just had a little “dusky” spell, and they needed to give him some oxygen.  She suggested that I return to my room and someone would be in a little later to talk to me.  As she was talking to me, someone on the inside of the nursery closed the curtain.  The image of Jonah lying there, not crying, looking blue and tiny and helpless is the image that I carried with me back to my lonely, empty hospital room.

I don’t know what awakened me that night.  I didn’t hear an audible voice from the darkness saying that my son needed me.  No visions appeared, prompting me to seek out Jonah.  I just woke…and knew that I needed to be near Jonah.  I hadn’t even planned on anyone knowing…I just wanted to look at him for a moment.  But that internal prodding, that sense that my son needed me, has served me well over the years.  After Jonah’s first heart surgery, it was me, standing over his bed, staring at every little piece of his body that alerted the doctors to the fact that he was swelling and retaining fluids.  It was me, after his second heart surgery, as I stood watch over his bed, refusing to leave even for dinner that night, that alerted the doctors to the fact that he wasn’t breathing right.  Even before his sats started to fall and the monitors started to alarm…I had 2 doctors, 3 nurses and a respiratory therapist standing at his bedside.  When his lung finally collapsed totally, they were there, ready to insert the tube to reinflate it.  The entire process took less than 5 minutes.  Because I had alerted them early, they were able to be there at the exact moment that Jonah’s lung totally collapsed. 

I don’t claim supernatural powers.  I can’t “see” into the future and see these things coming for Jonah.  I don’t have voices that speak to me, telling me what is coming.  I just have this love for this child…this child who has endured more in his lifetime than most people do in 80 years.  And that love guides me, nudges me, and prompts me to just “know” when Jonah needs me…even when he can’t tell me.

This is the beginning of the story of our journey with Jonah.  I will add to it, as time allows, to give you a glimpse of just what an incredible journey it has been!