I came across this letter through another blog that I follow. Thank you Ann Schrooten and The Willow Tree Foundation for giving a voice to the Special Needs families towards physicians and future physicians. This WONDERFUL letter should be told and heard to EACH and EVERY medical professional. This letter is so RIGHT ON and heartfelt.
I am so VERY fortunate to have the greatest pediatrician to help me care for Danny. One that goes above and beyond the call of duty for my Lil Man, we couldn't ask for a better doctor. I always kid I need to stop bragging about him as everyone is going to want to go to him, but he IS the most caring and compassionate doctor when it comes to kiddos like Danny. Unfortunately in today's day and age there are few and far between that can compare to him. I know we are one of the lucky families as MANY are not so fortunate and I can only hope with letters like this will help mold better physicians to help aid in the care of our kids. They are the most beautiful human beings if only more would give them a second look to see what they are missing.
Dear Future Physician,
On a cold January day in 1999, my two month old son was admitted to the Pediatric Intensive Care Unit in respiratory distress. Five months later, he left the PICU with a tube in his neck, a tube in his stomach and connected to a ventilator to support his breathing. My son was born with a congenital muscular dystrophy and, as a result of his disease, he has severe muscle weakness and is ventilator dependent 24/7. As the parent of a child with chronic and complex medical needs, it’s not only important to find a physician who is knowledgeable and skilled in his or her specialty, it’s perhaps more important to find a physician who will give me and my child his or her time, who will listen, and who is willing to go the extra mile in this time of managed care. It’s important to find a physician who cares.
As my child’s physician, you need to understand that I was sent home with a medically fragile child and I had no choice but to learn how to care for him. I am capable of changing out a tracheostomy tube and replacing a g-button. I know how and when to suction my child’s airway, give breathing treatments, and hook up the oxygen. I can bag my child through a period of respiratory distress. I can adjust ventilator settings and troubleshoot a ventilator. If my child requires a hospital stay, please don’t treat me as though I don’t know how to care for him and don’t prohibit me from being an active participant in his care. Remember that I am part of the team and my vote counts in all decisions to be made.
Recognize that sometimes all I need for you to do is to listen as I vent my frustrations and fears. I don’t need you to have all the answers, I just need you to care. Make yourself accessible. Provide me with your email address and don’t be opposed to answering my questions in writing. Return my phone call the same day I leave a message. I will only email or call you when I really need your help.
Be honest and forthright with me, but don’t give me the worst case scenario only. Take the time to share all the possibilities and options and give me time to process the information. Don’t take it personal if I seek a second opinion or choose a different course than the one you recommend. Understand that a diagnosis is an opinion, not a prediction and never underestimate the importance of hope.
Because of his disease, my son cannot walk, talk or breathe on his own. Yet my son is a human being with feelings. When you walk into the room,acknowledge my son. Talk to him — he can hear. Look into his eyes — they will speak to you. See his smile — it will light up the room.
Over the last nine years, I’ve had the opportunity to spend a great deal of time in the presence of physicians. I’ve encountered the good, the bad and the indifferent. But, by and large, I’ve had the privilege of dealing with an exceptional team of physicians who have provided the best of care to my son. One of my biggest fears the day my son and I left the PICU was of being abandoned by the people who — from my perspective — put me in this position in the first place. I’ve not been abandoned, I’ve been embraced by a team of very special physicians who have always done everything they can to ensure that my son and I have the best quality of life under the circumstances. They have not only cared for my son, they have cared for me. They have supported me, educated me and guided me throughout this very arduous journey my son and I are on. And for that, I will be forever grateful.
In closing, I’d like to share one particular encounter with a physician that I will always remember:
Early one morning as I was sitting in the chair next to my son’s bed, the PICU intensivist came over to talk with me. What will always stay with me was this physician’s simple act of kneeling down so that he was eye level with me, rather than looking down on me, when he spoke. To most, this may seem like a meaningless, trivial gesture. On the contrary, it is indicative of the special person this physician is. He is unassuming, he is respectful and he is kind. He is a physician who exemplifies what it means to practice medicine from the heart. Be that kind of physician.
Allow kindness and compassion to guide you and, above all else, be a physician who cares.
Well put! I can only hope from the bottom of my heart that they will listen.
To see the beautiful video that was made about this letter please click HERE to get you to the blog Touchstones of Compassionate Care
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