Dragon Mom: To one from One

RE:  Bryant Paquette 2/1/89 to 3/21/09

In response to the NOTE FROM A DRAGON MOM:

My note TO a Dragon Mom from one who has been there.

I know you.  I have been in your shoes.   My son’s name, Bryant, means “High and Noble” . Your story resonates with me because I lived it for 20 years.   We don’t have the exact same story though.   When I was pregnant with my son, in 1989, there was no interent, there were no routine sonograms and as a young mother, I was told my obsession with there being “something wrong” was only going to make me miserable for the pregnancy.  I kept saying “something is not right” but back in the “good old days” there was no way to confirm it.  And I dind’t make any risk group, so at around 36 weeks, when movement stopped, I was told to come to the ER, they were sure the baby was ‘just sleeping’ and reluctantly agreed to do a non-stress test.  I had been told at my previous OB appointment that the baby would be around 10 pounds, I was so big.

At the ER, the non-stress revealed a “flat heart rate” not flat line, but flat, no fluctuations.  They gave me apple sauce to wake the baby and ice cream, but to no avail.  Finally, an ultrasound was done, but only after being able to locate one because the hospital basically shut down around 5:00.   So around midnight I learned that the baby would not be 10 pounds, I was loaded with fluid and the baby could die at any time.  But, they would wait until first thing in the a.m. to do the c-section.  The doctor quipped “I haven’t lost one yet”.

Promptly at 8:00 a.m. I was ready for surgery and the c-section performed.  As soon as I heard the splashing sounds, which seemed to go on forever because of the polyhydraminosis, I was told the baby was “grossly deformed” and that “we could have other children because we were young”.   Convinced the baby was already dead, I told my husband not to look.  There was no crying, no noise and the baby was ushered out.  Then I was told it was a trisomy (later that was changed to a translocation).  Incompatible with life.

A nurse appeared, like an angel almost, and told us we had to see the baby that we owed him that.    I asked if he was alive.  I was told he was.  So I was wheeled flat on my back into the nursery area.  And that’s when this Dragon Mom was born.  He was , in fact alive, and seemed annoyed at the hat on his head and the needles in his arms.  He fought them.  So, I fought.  They transferred him to a higher level nursery about 2 hours away. I demanded to go with him.  They provided me with an ambulance ride.

Bryant spent 4 months in the NICU, but after genetic testing it was called a ‘de novo’ translocation of three chromosomes with four breakpoints.  He was on life support and would die within a short amount of time.  His brain had no corpus collosum and the left and right hemispheres displayed no regular formation. I was told it looked like someone took the gray and white matter and threw it up in the air, and thus formed Bryant’s brain.

He had problems head to toe from the brain issue, to a major craniofacial issue (which took 18 hours in surgery to repair plus additional follow ups) down to bi-lateral club feet.  He had more than 25 major operations, had a tracheostomy and a g-tube. On paper, he was a mess.  But the dire predictions, that he would die within a year or if he did live he would have “no purposeful movement” did not come true. 

So that is where our story divides.  Bryant wasn’t supposed to do anything.  He had no actual diagnosis / syndrome.   It was de novo (meaning we were not carriers).  We could have other children.   (And we did, three others.)   But because of the no diagnosis, all bets were off.   Bryant did live and did have purposeful movement.  He was a typical mischevious little boy with a trach, g-tube and in a wheelchair but he teased his sister nonetheless; she helped him blow bubbles by holding the wand next to his trach.   She pulled him around the house in a little plastic thing; he returned the favor by pulling her usinig his power wheelchair.

But we were never far from the knowledge that he could get sick and die.  On New Years Eve, 1998, he suddenly felt warm.  Within an hour, he was at the ER, in full status (non-stop seizure) for over two hours.  His recal temperature was 107, which normally isn’t compatible with life.   It was chicken pox.  They had to drill into his shins because they could not get a regular IV in.  We were one with the ER team, helping bag him, helping cool him and watching this horrific scene unfold.   But as a  seasoned Dragon Mom, I was thankful to be with him, by his side in the ER.  Once he was somewhat stabilized, the helicopoter came and took him to another hospital.   We were told this was probably ‘it’.

So here comes the ups and downs of caring for someone, who for any reason, at any time, can become sick and die.  And having such medical fragility, we were responsible for the moment to moment things that kept him alive, like managing his airway and feeding him through his tube.  I fired most of his nurses; none of them could take care of him like I could.  I fought with IEP teams.  Due Process.  All of it.  Because he was worth it.  Life on the edge, my cortisol stuck in the permanent ‘on’ position.  Watching him breathe to be sure he wasn’t starting to get sick, checking his heart rate, SA02 rate.

But with all that, Bryant’s spirit was there to teach us something far more valuable.  Life is brief and you can’t squander it.  He lived out loud on full speed.  His personality drew people to him.  He used sign language to communicate, and a Dynavox later on.   He peeled out in his wheelchair and caused all kinds of trouble with his infectious personality and mischevious ways.

All we want for our children is to grow up and be happy.  To make a difference and maybe, if we’re lucky, they will leave this World a better place.  No one wants to see their child suffer or have less than what we had.  But for Bryant, he carved out his own way.  He was his own person with his own agenda and goals. I was just along for the most glorious ride of my life.

Bryant passed away March 21, 2009.  No warning.   We knew his life was fragile, but he wasn’t ‘sick’ – in fact, he had one of his best days that Friday.  I was at an IEP meeting for a few hours trying to get him a new mount for his new Dynavox which were coming and a brand new MAC.  I was a lame duck, he was almost 21 and the fighting had not been as intense that last year (his senior year).

I woke up to my hubsand’s screams.  He had slept by Bryant’s side for Bryant’s entire 20 years.   He had been up at 4:30 to shut the g-tube pump off and went back to sleep to snooze.  At around 6:00 a.m. Dave got up and found Bryant.   I knew from the scream.  I ran downstairs and we began CPR and called 911 simultaneously but I was pretty sure.  Once the EMT’s arrived, even though the CPR was working (no pulse returned on its own but the compressions registered on the SA02 monitor and was showing an SA02 of 100) ~ when the Medics got the defib on and it advised “no shock” – I knew.  Still, every med was dropped, every effort tried for the 20 minute ride to the hospital, compressions all the way as they tried frantically to save him.

Bryant looked peaceful.  His eyes were clear, he looked like he was sleeping.  They again had to drill into his shins for an IV and when they “called it” at the hospital, I demanded everything be removed, all the tubes, wires, IV’s, etc.  I told him “Bryant you are free” fly free.

It’s been 2.5 years and the worst thing imaginable happened.  He died.  I never cared about those ‘dreams’ people have for their typical kids.  I never grieved Bryant’s condition when he was born because we were thrown into the fight of our lives from Day 1 and that was for him to live.  I don’t know why.   People ask how I knew.  In the face of so many professionals telling me to do a DNR, he wouldn’t live, he wouldn’t do anything, he’d be a vegetable …. Let him go , have other kids, live your life … why didn’t that seem logical to me?  I don’t know, somehow inside of me, I always felt that he would live and he would be okay.

Having a child who could realistically die at any moment, being so medically fragile may seem awful.  And that part was no fun.  But I didn’t live it that way.  We lived it like every day was this enormous blessing to have life; he wasn’t supposed to have had any.   So here was another day of life, 20+ glorious years of love.  Bryant was the leader, always.  He showed us what life was and how it should be lived.  He didn’t have time for the people who stared at him or labeled him as this or that.  He was a free spirit, a soul that knew what he was supposed to do.  He survived insurmountable odds, countless hospitalizations and surgeries.  Along the way, we met so many incredible people and Bryant changed lives and laws.  He advocated for others and made me see that life is about living, in the day, because in the end that’s all we have.  And while he only got 20 years, that was 20 more than he was ‘supposed to’.   He didn’t waste time either.  Whether we were at Disney World or advocating in Washington, DC or at our State Level or just hanging out watching a movie, Bryant did it with a leadership and love which I have never nor will ever see again.

Bryant carried us.