It’s helpful to know who to talk to afterwards
I think communication is key. Honesty is key, because being in a room with doctors and medical people and having them poke and prod your kid is really overwhelming. I think what’s been really helpful for us is knowing who to talk to afterwards because a lot of times, after the fact I would come up with questions or be like “hey, did they really say this or did they really say this?” Knowing who to talk to after the fact, to get a check in about that, and really just being an advocate for her needs. I know that these docs see lots and lots of people, and Riley’s our most important person that they see, so just trying to always remind people of that.
Mother of Riley, child, CLOVES syndrome
Having your questions ready
Be organized. I think, writing down everything that you experienced during each visit and all your questions and all that other stuff, and all of the doctors names. Because it can get kind of confusing, especially if you have to see multiple doctors. I think that was something, I had a book and I had a plan, that’s what I was going to do, so that was helpful.
Mother of Anne, child, Infantile hemangioma, PHACES association
You go through a transition
I think that when you have a sick kid you go through a transition. At first you are in shock over a diagnosis and there’s probably a period of sadness, and then you accept it and then you kind of have your fight or flight response, and you develop those skills. I know that I am definitely a different parent now than I was at the beginning. At the beginning I wouldn’t ask that many questions and if a doctor said something, I wouldn’t… challenge is the wrong word, but I wouldn’t question something or ask why he’s doing it and I also wouldn’t provide my input of what I think should be done or if I wanted something done. And now it’s totally different, because doctors aren’t perfect either, sometimes a doctor will make a mistake or they’ll be talking about his past history and they might have something wrong about that past history and I’m like, “No, that’s not what happened, let’s go back and look at the notes because that’s not what happened after a certain procedure.” But they know that, I have a very good rapport with his doctors. If I have a question or a concern with something, they know that I’m going to ask it, and they also know that I have accountability as a parent, but they have accountability as physicians as well, for our son. And it is a mutual respect.
Mother of Jack, child, Cutaneovisceral angiomatosis with thrombocytopenia
As long as they’re compassionate
[It’s helpful] if doctors sit and listen to you and hear you out before making a determination, or not looking down upon you and not wanting to help. As long as they’re compassionate and understand what she’s going through because it’s tough for a 4 year-old. I would say when they’re so little, and they’re going through surgeries and stuff like that, just the compassion, wanting to help and understanding that if she screams, it’s not because she’s spoiled, it’s because she’s in pain and she can’t express herself. If they can just be helpful and listen.
Mother of Emma, child, Venous malformation
Finding the right doctor
Finding the right doctor mostly, finding the right doctor that will help you. I always just say, make sure you have a good conversation when you’re pregnant with the doctor, and say she is going to be special needs. Make sure you can talk to them very easily. If they are good and you can talk to them very easily, they’re going to be a good doctor for you. If they don’t want to talk with you and explain things to you, that’s not the doctor for you, you need to go elsewhere because all doctors I have come to, they all have time for me, they all have time to talk to me and explain things, and it’s been wonderful and easier since I’ve found the correct doctor. Make sure you have that line of communication and you can feel it out. You have a mother’s intuition of knowing who is good for you child and who is not.
Mother of Annabelle, child, Lymphatic malformation
If you don’t understand the first time, ask again
I think I learned a long time ago to write out my questions ahead of time, and not to be afraid to ask questions or too many questions. If you don’t understand the first time, ask again because sometimes doctors do talk kind of over your head, and you go out scratching your head going, “What did he just say?” To kind of have them put it in normal terms that you understand.
Mother of Ashley, teenager, Lymphatic malformation