Experience Journals: Grateful for the families at Boston Children’s Hospital

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Danny Deitz, above with his parents, is a heart transplant patient of Dr. Kevin Daly and Dr. Elizabeth Blume

The Experience Journals Project shares the stories of kids, teens, and health care providers at Boston Children’s Hospital. This project features the collective wisdom of over 250 families and 150 health care professionals.

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While each Journal has a different topic, every Journal includes providers who are grateful for the chance to work with the amazing children and families at Boston Children’s Hospital. Here are some of their experiences, in their own words:

Thank you

I think probably the most challenging and the most rewarding thing in this job is taking care of these incredible families. Every day I learn something new about parenting from these parents and about perseverance from these kids. The biggest challenges are the biggest rewards, because they go hand in hand, and it’s such an honor to be part of their journey.

Elizabeth Blume, MD, Heart Transplant Program medical director, Transplant Journal

This job is one that challenges you to be a better person every day. It really makes you take a different perspective on things. The kids and the families are so inspiring for what they go through, what they want to do to help others, the connection they feel with their community of other transplant patients and with people in general: I think that’s an extremely rewarding part of it. Obviously it’s challenging work, just the nature of it, and you have to be prepared for some sad days when you’re in this career, but it’s also very much about celebrating life while you’re here. That’s a great thing.

Kristine McKenna, PhD, psychologist, Transplant Journal

I love seeing the point when the child “gets it.” Another rewarding thing is that there is a before and after effect with blood checking. You get an outcome. If a child gets a good result from a blood check, it’s great watching that child be happy and smile about it. Building a relationship of trust with the parent and child is also a wonderful thing. They have to trust that you, as a clinician, care about the child and want to help — otherwise you wouldn’t be doing what you are doing.

Maryanne Quinn, MD, physician, Diabetes Journal

I learn something new every single day, and usually it’s from a child, mother or a father. Someone is always teaching me something. For example, I often meet with families during times of transition— transitioning to the insulin pump, gaining more independence with diabetes care, moving on to college, or just working through a challenging time. While we’re sitting there together talking, the child shares so much valuable information. Together, the parents and I are learning from the child. It’s an amazing experience.

Working together through some of the rough spots, you see a lot of growth, development and maturity. You see kids recognize that taking care of diabetes is a lot of work, but the overall goal is always to be a healthy adult and have a good life.

Jennifer Rein, LICSW, social worker, Diabetes Journal

Just seeing a kid smile, seeing a family that used to really struggle around a certain issue overcome that issue is very rewarding. Changes and improvements in the areas that really affect a child’s quality of life are really striking to me. That just makes this work all worthwhile.

Laurie Glader, MD, pediatrician, Cerebral Palsy Program, Cerebral Palsy Journal

The truth is that these kids are some of the hardest workers you will ever see. I think the reason why a lot of us go into this field is because we like the attitude and the verve that the kids have. This particular population has to work harder every day at whatever they do, so I admire them. I think it’s fantastic that I can be involved in that aspect of their life, and be in some way a facilitator for them by making their lives easier.

On the family side, the families are often made of some of the greatest people you ever want to meet. They are true, caring people. From my perspective, the really cool part is getting to be some part of that whole schema and seeing how parents interact and care for their kids. It’s also wonderful to make and be friends with them.

Travis Matheney, MD, MLA, orthopedic surgeon, Cerebral Palsy Journal

I think the greatest privilege that I’ve had over the years is to learn from parents and children. What I learn informs my practice and helps me with other families. Though I now have years of accumulated experience, I continue to be open to learning more and admit that I have much to learn from those I have the privilege to serve.

Terrell Clark, PhD, pediatric psychologist, Hearing Loss Journal

Visit us at the Experience Journals to learn more.

This project was created by the Department of Psychiatry at Boston Children’s Hospital.