Touched by a Legend

When Micah was diagnosed with Down syndrome we were given the name and phone number of the Down Syndrome Center in Pittsburgh. This was about the only bit of information that our pediatric office had given us. Desperate to do anything that we could to learn more, to help our son, to try and right the world that was just pulled out from under our feet, we called and set up an appointment.

When we arrived at Children's Hospital for the appointment, we were told to meet the coordinator at the cafeteria. Not sure what to expect, Sam and I got something small to nibble on while waiting for someone to join us. That someone was Sheila Cannon, the competent coordinator of the Downs Clinic. She sat down at our table, told us how blessed we were to have such a dear and wonderful baby boy, and answered any questions that we had. We've since learned that Sheila is one of the busiest people we've ever met and to get time alone with her is rare indeed, but that day we were top priority on her schedule. Making new parents to the world of Down syndrome feel welcome is her goal in life. She does it well.

She led us to the Downs clinic where we met Dr. Cohen. He was so very thrilled to meet Micah. I got the impression that each patient was special to him, and he took personal interest in every single one of them. Dr. Cohen took two hours to examine Micah from head to toe, answer more questions, reassure us that the world would be alright again, give us some ideas of what to expect in the future, and start us down the road to Micah's adenoidectomy because of his deep concern for his patients health. To say that we were impressed is an understatement. There is no way he could schedule more than a handful of patients per day with that kind of thoroughness. And we appreciated it.

We learned over the years that we would need to schedule Micah's annual visit months in advance because of his caring and thorough ways. With each appointment that we had, I was reminded once again of what a doctor could be. Dr. Cohen truly cared for his patients, and listened to the concerns of parents. He took notes, he referenced them, and he asked questions to get to know more about his patients. He cared about potty training issues, he kept an eye out for autistic tendencies, he always had phone numbers handy to share with parents if they needed more therapy or a specialist for their child.

Sometime after we were at the Downs Clinic, I came to find out that Dr. Cohen was a leading expert in the Down syndrome field. He was co-founder of the Down Syndrome Medical Interest Group, he co-authored the book Down Syndrome: Visions for the 21st Century, he was a member of the clinical advisory board for the National Down Syndrome Society, he won numerous awards such as the Award for Outstanding Clinical Care, he was named one of Pittsburgh's top doctors by Pittsburgh magazine, he was internationally recognized for his expertise in the care of children and adults with Down Syndrome. And yet, he was Micah's doctor. He was never out of touch with his patients.

Dr. Cohen died of a heart attack Friday, February 6, 2009. His loss will be felt by so many. I'm both glad that Micah is too young to miss him, and sad that he won't remember him personally. But I will. I'll always be grateful that our lives were touched by Dr. Cohen.

The Downs world has lost a hero.



http://www.pittsburghlive.com/x/tribunereview/obituaries/?mode=view&obit_id=167043

19 comments:

Michelle said...

Wow, Karen. That is an incredibly moving tribute. You know how lucky you were - and how lucky Micah was. I can only hope that he inspired more to be like you describe him.

Designher Momma said...

have I told you lately how adorably cute your son is? And it's completely obvious how much he is loved and cared for.

Trannyhead said...

I'm sorry you lost such a wonderful Downs advocate.

PS - your kid and the other kid in that photo are too cute together.

Lovin Mama said...

Well said Karen. We only met with Dr. Cohen once, but will always keep that day in our hearts. I felt that he cared as much about us as he did Goldie. Goldie had an appt for next month. I feel a little lost now.

utmomof 5 said...

That was a wonderful tribute. Finding a doctor who takes that much time is indeed rare to find. Micah was certainly blessed to have him as a doctor even if for a short while (You were blessed too!)

Aimee said...

This is his earthly reward -- families who will remember and honor him for his good work and compassion. I'll pray for his soul.

Eternal rest grant unto him, O Lord, and may perpetual light shine upon him. May he rest in peace. Amen.

anglophilefootballfanatic.com said...

I'm sure having patients who feel that way about him is all he asked for in life. And, I'm sure he's enjoying his reward for being a wonderful person now.

Andrea said...

How wonderful that Micah was able to be helped by such a caring man. Doctor's like that are hard to come by. You were really blessed to have had him. I am so sorry for your loss. This was a great tribute to a wonderful man.

JennyH said...

That is so sad. I had no idea he died. He was here in the KC area a few months back I am bummed I couldn't make it to that meeting (our local DS group).

Glad you knew him though. I'm sure he will be greatly missed.

Cecily R said...

Wow. What a wonderful tribute. It makes me happy that your family so many others had such an amazing advocate and friend. I'm sorry for the loss and truly hope others can follow in his footsteps and fill his obviously very big shoes.

Krista said...

It sounds like he truly was a legend. People like that are hard to find and we feel blessed to know them. I'm absolutely sure he truly cared about your family's needs. I also hope there is someone great to fill his shoes and continue helping you.

Amelia said...

I've never posted here before, but I wanted to tell you that I'm sorry about Dr. Cohen. He sounds like he was an amazing person. Being the mother of a special needs son myself, I know how hard it is to find someone that you truly trust in which to place the care of your precious child. Many blessings to you and your family. And I love your blog...
Amy

Karen said...

Amy - Thanks so much for your kind comments. It's so nice to meet you.

HalfAsstic.com said...

Oh, Karen, I am so sorry. What a huge personal loss as well as an enormous loss to the world.

Karen Deborah said...

What a great tribute to a real doctor. Those doctors that really love people are rare and shine brightly. I am grateful for his contribution to medicine and for the personal touch he provided to his families and your sweet son. This is lovely,I wish his family would see it.

Karen said...

What a beautiful tribute to Dr Cohen. The world will mourn his loss. I am sure there will be many inspired by his legacy.

The picture of the boys is darling. In fact, screaming cute, comes to mind.

CC said...

I am so sad for you and the world that a great man has been lost :(

Fishsticks and Fireflies said...

What a wonderful tribute and what a tremendous loss to the Down's and medical community. I hope that his legacy will inspire others to take on the challenges that he did and make a difference in the world.

Debbie Yost said...

Wait! I just met him. Like JennyH said, he was just here in KC. He was helping set up a new director of our Down syndrome clinic. I got to shake his hand and he sent me an e-mail about how to talk to the doctor who gave us the Peanut's diagnosis. It was not good. He talked to our guild and I am honored to have met him. He truly was a wonderful man and did so much for our children. I can't believe he was Micah's doctor. You are turly lucky.

It is a sad day indeed to have lost him, and yet, with the work he has done, he has left many more doctors in to continue his cause. I'm going to go cry now. (seriously) :(