Saturday afternoon as I sorted the mail, I wasn’t expecting a sucker punch. But I got one. There in a seemingly innocent receipt from one of our specialists was a new diagnosis for my daughter. No explanation. No preparation. Nothing. It was just listed there between Unspecified asthma and Other allergic rhinitis like a harmless friend.
But its not. In fact, nine vials of blood were sent to the Medical College of Wisconsin (the only center in the country to run the incredibly specialized tests that she had to have) last spring to see if maybe we might have some answers. And we were told no. That the tests were inconclusive and that we should just stay our course and not change treatment.
And then bam. There in black and white and insurance codes was D83.0… that’s Common Variable immunodeficiency with predominant abnormalities of B-cell numbers and function .. for those untrained in insurance codes.
Guys, that’s a primary immunodeficiency and we are smack dab in the middle of a horrible flu season and my child is getting no preventative or precautionary medical treatment.
I am RUNNING SCARED!
You would think by now I’d be use to this kind of crap.
I’ve been a parent of a sick child with rare diseases for eighteen years.
But I’m still scared.
Tonight as we face the week ahead, all I can do is pray for my sweet resilient daughter and pray for her protection. Her incredibly complex medical picture makes easy answers and typical protocols not work for her.
So please you guys out there.. if you are feeling achy, tired and run down, do me a favor and stay far, far away from my girl. I desperately want to keep her home the next couple of weeks, but that isn’t possible. We joked tonight, as we have many, many times over the years about needing to get her a bubble.
That’s the kind of parenting that I am doing right now with my daughter who is a high school senior. Actually, I’m struggling to be a transitional parent as I am so used to being a hands on all the time mom… and still am to my 12 year old and 8 year old… but my high school senior is very ready for me to let go, and let her go.
But oh this is hard.
I’ve heard all of the stories for years. I didn’t doubt them.
But it is different when it is YOUR CHILD!
For the last almost 18 years, my entire world has been wrapped up in keeping Maddie well. Every decision, every plan, every possibility has been weighed against the potential medical response that Maddie might need. I can’t explain it really. Maddie’s medical needs have been an ever present issue. And now, it is terrifying to let go and help her walk away and prepare for college.
And she is doing it.
Maddie applied for college the first weekend applications opened. She was accepted almost immediately.
Maddie has been to a scholar’s preview and has accepted her first scholarship.
Maddie is taking ownership of her scholarship essays and telling me to butt out.
Maddie is ready to take on the world.
Her momma might need some counseling.
It really is amazing how wonderfully Maddie is doing right now. She is the healthiest that she has ever been. She is confident and strong.
These were the days that we prayed for when she was little and things were so scary.
So we are in a time of transition.
May God have grace on parents of high school seniors!
This week we took my daughter Maddie to a new specialists. This was her 22nd Specialist. Twenty-two times we have sat in a specialist waiting room and have answered countless questions. 22 times. This number doesn’t even include dental/oral specialists, physical therapists, and all the other extra doctors/practitioners we have seen over the years.
We left frustrated.
We left a little more resigned.
We left a little more heartbroken.
So here are my thoughts, not that any specialist will ever see them.. but it makes me feel better to get them on paper. I realize that there are many specialists out there doing a fantastic job and making a huge difference in the lives of children (Dr Wasserman is our hero!) But for every incredible doctor we have seen, we have a handful that have left scars.
Those scars hurt.
And when your whole life is about finding help for your child, having a specialist add to the wound is wrong. I truly don’t believe they realize what they are doing… so here are my wishes and recommendations:
My child has a name.
Please make an effort to talk TO my child, not at my child. Even better, call her by name! The best way to make a connection is to find a few moments to get to know the patient. I realize that you don’t need a connection, but WE DO!
Read the medical chart before entering the room.
If we are seeing you, the likelihood is that there is a reason! Please don’t ask us simple questions about diagnosis and referrals, we need to see that you have read the chart and have made an effort. And really, when I have to explain what the primary diagnosis means or how to spell it, how can you expect me to trust anything else that you have to say?
Honor the work that we have made to get here.
You may not agree with what other doctors have done or said in the past. In fact, you may not see any reason for us being in your office, but please honor the work it has taken to be sitting in your exam room.
When you ask a question, listen to the answer. Don’t assume that you already have the answer. We can tell and the best way to get a child to stop answering your questions is to show her that you don’t really care what she has to say.
Don’t discount our experiences
My child has been sick for 17 years. I have sat in countless doctors offices and have experienced more than you could ever imagine. My daughter is in the 1% club for side effects, allergies, and illnesses. I’ve lived through the fine print! Please, don’t discount our experiences. Just because we don’t describe it exactly how you read it in the textbook doesn’t make it any less valid.
My child is more than a test result and quality of life matters
I realize that your care is driven by and dependent upon test results, but those things don’t mean much to me. I care about my child and the fact that she is hurting. When tests results mean another dead-end, can you please offer more than “well, at least we have another no..”
Do a thorough examination
My daughter told you that she had seen 21 other specialists for a reason… She didn’t like your vibe. You then proved it by doing a minimal examination. bummer. You proved you didn’t care right then.
Acknowledge that you don’t have the answers
After 17 years of consultations and testing, I don’t expect you to have the answers. I pray daily that you do, but I don’t expect you to do so. So instead of brushing off symptoms and clinical observations, acknowledge that you don’t know what to do! We will honor that and invite you to join the journey.
Imagine life in our shoes.
I’m guessing that living life as a speciality doctor gives you the understanding that you are the smartest person in the room most days. Well, being the smartest person in the room may or may not be the case, but you could at least be empathic! I don’t imagine you have ever considered what it would mean to you and your mindset if you had to go through life knowing that no matter what you did, where you looked, or who you talked to, you couldn’t make things better/heal/fix your child!
Please leave me with hope
At the end of a consultation leave us with hope. Please. Instead, after sitting through an almost 2 hour visit you said there was no reason for a follow up unless the blood work came back “icky.” Really? How hard would it have been to leave us with the “I’ll be in touch” or something tinged with hope?! But to make a decision that we aren’t worth your time before even seeing test results? really? nice.
So what do we do? We continue to fight. We continue to research on our own. We continue… It seemed awfully easy for you to look at us and say that the current medical research doesn’t have a unifying diagnosis for my daughter. But it’s not easy for us.
and so we will continue the fight, we will continue to search, we will continue to hope.
I love watching Maddie perform. So much of our life is defined by the limitations that are put on her, that when she is able to participate in LIFE with her peers, we celebrate!
One of Maddie’s passions is colorguard/ winterguard. Participating in an event that is so hard on her body is costly to her. The exhaustion, sore muscles and constant bruising is a high price to pay, but worth it because she loves the sport.
Maddie is on Stephenville High School’s winterguard team and they have their championship competition on Saturday. On Tuesday, they were able to perform for the student body. They performed beautifully and it is always wonderful for their peers to see the amazing things that they are able to do!