My tribute to Dr. Nancy Mansfield

I met Dr. Mansfield, about a week after we had our first appointment at Children’s Hospital LA.  Dr. Lee (Gavin’s pediatric retina specialist), suggested we go and meet with her.  When a devastating diagnosis is given to one of his patients, regarding their child’s vision, he refers them to Dr. Mansfield. 

I wrote this on February 26, 2009, in a blog post:

In addition, Dr. Lee also put us in touch with a child psychologist. This particular psychologist, Dr. Nancy Mansfield, concentrates on families whose children will be affected with vision loss. She works in conjunction with CHLA Vision Center. You can read about her here. We will be meeting with her in 2 weeks. She and I had a session over the phone. At the end of our conversation, she said she was 'anxious to meet me' as I sounded "too good". Hmmm, I don't think that is a good thing. She caught me at a good time, and not in one of my moments, so maybe I gave her a false Pollyannish version of myself. I am optimistic, but I am also deeply saddened at the same time, I'm sure she will probe deeper. I am looking forward to it actually. She sounds like an excellent advocate for us, as well as had a wealth of information. What I took away from the conversation was, to not overlook your instincts - more importantly your parental instincts. We do have them for a reason, and don't try to justify them. They are there, and should be there, and we need to listen.

Troy and I decided to visit with her.  We were struggling with our emotions, and trying to learn how to deal with the news of Gavin.  We figured, how could it hurt?  We were lost, and any kind of support, in the form of a child psychologist could only help us.

We were fortunate enough to meet with Dr. Mansfield on a few occasions.  I walked in her office with a smile, and she instantly handed me a box of Kleenex.  She saw through the fake grin.  We sat, we talked, she listened.  She even had us bring Landon in on a visit, and she talked with him for a while, and they “played” while she analyzed.  I think Landon early on, didn’t understand, and he had concerns for his baby brother.  I think all the doctor trips to the big hospital freaked him out.  Seeing his mommy and daddy so sad, made him sad.  She gave us tips on how to get him to feel less stressed.  It worked like a charm.

I was so deeply saddened to hear Dr. Mansfield had passed away.  We found out a few weeks ago, when we had our blood drawn for our genetic testing, and I am still thinking about it.  She was such a gift to us.  Talking with my other LCA families close by, I learned she was to them as well.  My friend (who has two children with LCA), and I talked on Tuesday about it, and shared what she taught us both.  I can only imagine the loss the Vision Center at Children’s Hospital is feeling.

Please read about Nancy, and her accomplishments, and what she did for so many.

I want to share the most important things I learned from Dr. Mansfield

1.  Gavin’s eye disease is relative to us and our family

I remember sitting down with her, crying buckets, and she asked me why I was so emotional that day.  I told her I did not feel worthy of feeling sad.  I walk the hallways of Children’s Hospital, and see so many sick kids. That particular day I saw so many cancer patients, it made my stomach hurt.  I wonder why I am so upset because my son is not sick.  He is healthy.  I shouldn’t cry for my son, I should be crying for these children who may not see tomorrow.  It was such an inner struggle. 

She stopped me mid sentence, grabbed my hands and said “Gavin’s disease is relative to you and your family.  There will always be someone who is sick, the stories will always be tragic, and they make us sad.  That does not mean you do not have a right to feel the sadness you do for your own child, who cannot see light.  Gavin is relative to you.  Love your son, you can be very sad for your son, but also mourn thoroughly for your son’s vision.  It is important to mourn, to be able to move forward.  He is not sick, but that doesn’t make it any less sad.”

Those words made a difference!

I hear Nancy often, in my head.   Her encouraging words invade my mind, when I see others and what they are struggling with.  All any of us knows is our struggle, and how it is relative to us.  REGARDLESS of how minute or devastating it may seem on the outside.  It can be a mom’s worry over her child’s very poor vision, who will need glasses for the rest of their life.  In my mind I could be thinking “I would love that to be Gavin!”  But to this mom, it may be very heartbreaking.  Her child’s poor vision is relative to her.  As it should!

I see far too often people comparing sadness. 

“Johnny” was born deaf and blind, so you should be glad Gavin is just blind.  Yes, I have heard this before.  About a week after we found out about Gavin.  Does that remove the element of sadness for Gavin?  Absolutely not.  So, does that statement mean I should be GLAD for Gavin that he is just blind?  I have learned a lot about comparing sadness.  I have learned everyone has their place for their own sadness, regardless of what it is!  And it should be respected and not compared.

Thank you Nancy, for your words of wisdom and your brutal honesty.  You had an ability to teach me how to compartmentalize my sadness, so it doesn’t spill over to everything else, as it so easily could have! 

I am very grateful to have met you, and had you in our lives.  Troy and I, and our whole family, is certainly at our good place where we are right now, because of you!

Rest peacefully.