This is the letter I sent to Nathan’s pediatrician. What do you think, did I strike a happy medium?
I want to start off this email by telling you how much I appreciate you and how much gratitude I hold in my heart for you. Of all of the doctors we have seen in the last 4 years, you by far surpass them all. You are the smartest, most caring, most compassionate of all of them. I appreciate the great care you’ve taken of Nathan and all of the times you have helped him and gone above and beyond to ensure his health and well being.
Which leads me to our appointment yesterday for Nathan’s checkup. I know you are concerned for his well-being and you only want what’s best for him. Which I know is why you were cautioning me about some of the supplements and things we’ve done for him. I really appreciate your concern and advice. But I do want to ask that you have some respect for my decisions as Nathan’s mother. We love him to no end and would never do anything to harm him. Even though it doesn’t seem that way to you, I am very cautious and I research everything, EVERYTHING we do very carefully.
Since Nathan was born, I have spent an average of 3 hours a day researching brain plasticity, rehabilitation, alternative medicine, cerebral palsy, equipment, and anything that might benefit him. I am a member of about 15 yahoo groups dealing with brain injury (HPE, CP, etc). I follow over 50 blogs and I read everything these families post. Everything. I never miss a post. I have spoken to countless professionals, both in the alternative and traditional medical world, and consider myself very informed and knowledgeable regarding issues that Nathan deals with.
Based on all of my research and reading of medical studies/journals, and especially, based on the experience of other families, I have made decisions that I have considered beneficial for Nathan.
Yes, I know that many of the decisions I have made don’t make sense to you because they are outside of your field of expertise. But what is important here is that I believe in them, that I have spoken, in each and every case, with the parties involved, other families, and have researched every treatment extensively. And based on my research I have engaged in therapies that I have concluded would have the possibility of helping Nathan.
You mentioned that I should run everything past you before doing it. Quite frankly I haven’t done so in the past because you’ve made it very clear to me that you don’t believe that any of these alternative treatments can help. I am intimidated by you and I clam up and have difficulty speaking up. So I have been bringing him to you any time he has an illness and I see you as being in charge of his medical treatment, while I am in charge of his rehabilitation.
And quite frankly, I am pleased with how we are doing. Nathan has been mostly very healthy. When he’s had illnesses you’ve helped us manage them very well. He hasn’t been hospitalized in almost 4 years. He hasn’t had any surgeries or major illnesses. He’s a healthy, smart, happy boy that loves the world around him.
So I thought this was a good time to check in with you to see if you are interested in continuing Nathan’s care while knowing that I am making the best decisions that I can for his rehabilitation. Even though he hasn’t progressed significantly in motor function, I am very pleased with his overall progress and even physically he has gained skills and abilities that I was told he would never gain. For being a child with such severe brain damage I believe he is coming along very nicely.
If you are interested, and you would like me to involve you in decisions I make regarding his rehabilitation, I would ask that you have some respect for me as his mother and as an intelligent adult. You see the world from one point of view, I see it from another. I would never do anything to harm him. If you don’t believe in chiropractic care or homeopathy or supplements, I respect your opinion. And especially if you have safety information regarding these treatments, I would love to hear them. But if I decide to move forward with these treatments, I hope you respect my decisions.
I wish I could tell all of this to you in person but unfortunately, as I said earlier, I find you very intimidating. So I just don’t say anything. But I realize now this isn’t helpful to either of us, especially to Nathan, so either we decide to move forward in partnership or we decide to not work together on Nathan’s team. I would love you to continue being Nathan’s doctors as, like I said before, I think you are a brilliant and amazing doctor and human being. But if we do move forward, I need you to respect me too.
Once you let me know your thoughts we can figure out what the next step is regarding the referrals and treatments that we talked about at Nathan’s appointment yesterday.
Thank you very much Dr, again, for everything you have done for my Nathan.
Your letter is both beautiful and erudite.
Thanks for including us in this exchange – we can all learn from it.
Hi Marcella
Has Nathan had any bloodwork to check his vitamin and mineral levels for which the suppliments are used? Just to see if the suppliments are actually helping and are at the correct dosage. I can somewhat understand where the Doc. is coming from. She was looking out for Nathan’s best interest in that she is afraid that dosage may be too much of one of the suppliments. Maybe you could compromise and have Nathan’s blood drawn just to check his vitamin and mineral levels. This would prove your point that the suppliments are working and are at the correct treatment dosage. And possibly put the Docs mind at ease, if just a little.
Donna
Very nicely put!!! You are his mom and have done your part in Nathans recovery and they have done theirs. If there can be mutual respect it sounds like you have the PERFECT team for your sweet little boy!
Tons of hugs and prayers!
so– did she respond?
Nice.