In the wake of a tidal wave

On Halloween 2007 we were hit with the tidal wave of DMD. Wyatt had an appointment

with a neurologist that afternoon. She was dressed head to toe in black and orange with skeleton stockings on. We were going in to review his labs and we really had no idea what we were about to be faced with. She looked at us and said something like this...the labs definitely show that he has duchenne muscular dystrophy. We can tell not only by looking at the labs but also by looking at his calves. She continued, unfortunately I am not a neuromuscular expert and no one here at Ochsner is either. I will try and find the best place for Wyatt to be seen and get a plan for his future. But as for right now there is nothing you can do for him, there are no meds or cure on the horizon, so for now go home and love him.

Wait, what did she just say?

My heart was in my stomach and my stomach was in my throat, I wanted to vomit, I couldn't talk....I looked at Patrick and he looked like a deer in headlights. It was like a tidal wave crashing over our heads and there was no life line to help us out of it. We were drowning in worry and anger because we were told our child has a life changing fatal diagnosis and there is nothing we can do. How does one just leave the doctor's office without a plan for the future? I remember getting in the car crying and crying not knowing what was next besides that we needed to get Wyatt scheduled for a muscle biopsy to "confirm" what the labs said. (FYI we found out the next year that this didn't need to happen). Long story short, Patrick tried to pay off the orthopedic surgeon to get this biopsy done in 1 week instead of a month. I just shake my head now when I think of that appointment. We didn't have any money to "slip cash in his pocket" but that was how desperate we felt at the time. It seriously is like drowning and no way to know what is up and what is down. So our little boy who just started to walk got the biopsy and it reconfirmed what we knew was his fate...there was no dystrophin in his thigh muscle...our son was going to lose the ability he just learned and there was nothing we could do about it. (My heart is racing just typing this and remembering these appointments.)

After diagnosis we came home and we were in a daze for days, really months. It felt like a funeral at my house. People would come visit and have no words to say besides "how are you doing?, you will get through this or it will get easier." I wanted to say, "seriously how do you think I'm doing? My son is going to die before me and there is nothing I can do about it," but of course that isn't what I said because that isn't really what people want to hear. It makes people uncomfortable to talk about grief and the real feelings of devastation. They want to hear that you are trudging on, getting through it, taking it day by day. No one wants to hear I just want to curl up in bed with my husband and son and cry and I want every one to stop coming in the house and pretending it is all going to be ok. Still to this day I don't tell people the truth when they ask how's it going, because most people don't really want to know the truth or in all honestly have time to hear what is really going on in life.

So now 14 years later we are in a better space as a family (besides the stress of the hurricane aftermath). I feel like we are more in the wake of the tidal wave than tumbling in the actual wave. We see the progression but instead of reacting to what happens we are more proactive in preparing for the next wave. So things like buying the electric wheelchair when he started to fall more, getting the converted van (thanks to Ida for making that happen a little sooner), and talking openly about the changes and the expectations as a family make the next tidal wave a little less fierce and unexpected.

I'm not saying that there aren't many days that I feel like I'm drowning or looking for a life boat but I'm saying it's better. Medication and counseling has been a good life preserver during my journey.

I now look to the future with a little less fear and sadness than that fateful Halloween day. So on Halloween day, instead of curling up and drowning in the grief from 15 years ago I plan to take a deep breath and celebrate how well Wyatt is doing and how there are many Pharma companies working on treatments for not only Wyatt but for all boys with DMD.

So this Halloween hug your babies and enjoy the fun of the holiday with them.