I have so many thoughts swirling in my head.
So many things I want to say.
But I can’t… cause I’m struggling to process it really myself.
I’m really not trying to be one of those vague woe is me social media posts people.. You know..
But guys, let me just say…
Specialist #25 had no answers for Maddie’s bilateral foot drop. We stumped him. And he was supposed to BE THE ONE. She has no nerve damage and no neurological reason for her feet to have just stopped working. The doctor was nice and concerned, but he had no answers.
Guys, I was scared to death over this appointment. We were assured that we would get some answers today. But Maddie knew. She didn’t have her hopes up.
And why should she?
Her entire life has been No Answer. No Reason. No Explanation.
So we have been referred to Specialist #26 and hospital #7.
And yes, of course we are thankful that more of the incredibly scary diagnoses have been ruled out. But could we, maybe, someday get an answer?
Graduation has come and gone and with it, Maddie completed her high school journey. There were many times over the last twelve years that I wondered if we would make it to this point.. but we did.
Watching Maddie graduate was wonderful, yet like every other accomplishment in her life, it was not without a struggle. Maddie has been wearing two walking boots for about a month now and these boots, while worn for protection and the ability to walk “normally,” are not easy to navigate ramps and uneven ground in.
But Maddie does just that.
I am so proud of her. It’s hard to not get weepy when I consider her struggles and her accomplishments. Many would use the daily pains and hurts as excuses to not leave the house, but Maddie perseveres and refuses to give up.
Maddie’s educational journey is really just beginning. She wants to be a music therapist, so that means two degrees, an internship, and a board certification. I know that she is going to do incredible things and be a difference maker for children who face physical and/or cognitive struggles.
So for those of us out there who get frustrated when life doesn’t meet our expectations, I ask you to remember those like Maddie who face daily struggles of chronic pain, chronic illness, rare diseases and complex and often undiagnosed problems.
Since Maddie can get up each day with a smile, a song in her heart and the desire to reach her goals, surely we can join her in that journey!
Maddie turned 18 this week. Of course I knew this was coming.. but I still wasn’t ready. We have been working on college scholarships and planning graduation events, but somewhere along the way I forgot that with graduation and college, my “little” girl was going to become an adult.
Unlike many parents, I’m not worried about Maddie being a responsible adult. Maddie has been responsible pretty much her entire life. And it’s not that I can’t let go.. I will and am..
But here is the deal.
For 18 years I have spent pretty much every breath that I have in me protecting Maddie’s health. I have spent thousands of hours in doctor’s offices, in waiting rooms and researching diseases and cures when the specialists didn’t even know what to do or how to treat her.
And then, starting at 12:01am on Maddie’s birthday, I started getting the emails.
“You have been unlinked to Maddie’s account”
“This email has been removed from the account”
“You have been removed from this account”
I have been removed and unlinked from Maddie’s life.
There aren’t even words to describe how that feels. Maddie didn’t choose to unlink or remove me. An automated system that just the day before wouldn’t allow Maddie to make a single decision for herself now requires her to make all of the decisions and excludes me from even seeing her account!
But more than that, it scared me.
I wasn’t ready and I hadn’t downloaded all of Maddie’s files. I realize now that I should have been more proactive, but dang.. just living in the trenches is hard enough. Someone should have warned me! That automated system should have sent me an email 30 days prior saying that unless Maddie authorized it, I would be removed from her accounts.
For those of you out there that have never had the struggles that come with having a child with 13 different diagnosis codes and almost a dozen different specialists, I’m sure you think I’m overreacting. Just hang with me a moment…
This week along with Maddie’s birthday, she has had some ongoing and new health issues. She saw her primary doctor who did blood work and is working to get in to see two of her specialists next week. Both specialists will need to see the results of the blood work. None of these three doctors work together or are part of the same network. My job for the last 18 years is to be the manager and provide all of the paperwork and logistics for each of the various doctors. Now it’s Maddie’s responsibility. A responsibility that Maddie will take the lead on, but truly wasn’t ready to take on. As she said, when the doctor’s office calls with results from the blood work, she isn’t even going to know what they are talking about! And Maddie is an educated patient!
About five years ago if you asked me what colorguard was I would have asked if you meant the “flag girls” on the football field at half time with the marching band. I would have meant no disrespect, but I didn’t have a real frame of reference for colorguard beyond that they were the pretty part of the half time band performance.
Today however, if you ask me about Colorguard, I can talk about it for a looong time! Cause you see, I am a veteran “Guard Mom” whose daughter was Captain this year, is graduating from high school next month and last week performed her in final Winterguard competition. Oh.. you don’t know what Winterguard is? Well, Winterguard season is December through April and the guards perform a show entirely different from the fall and perform it inside a gym. It is quite a competition!
So here are some of the things I learned over the last four years..
Colorguard is a SPORT.
Guard rehearsals are like practices for sports. Full sweat, smelly feet, sore muscles and long hours.
(Color/Winter) Guard is a synonym for FAMILY.
Over the last four years we have come to know the guard director, staff and students very well. These teenagers and their families have become our family. The director has been a mentor and another mom for Maddie. Being part of the guard family is an honor.
Guard teaches the importance of the
individual WITHIN the team.
One of the coolest parts of the color/winter guard team is that each individual and their work is incredibly important to the combined efforts of the team. Hand positions, foot work, throwing (and catching) hard tosses, and the ability to keep up and on the beat are deal breakers for the overall look and ranking of the guard. Because of this, the team learns how to work together and use the unique skills and abilities of each member while working to get better and stronger each week.
Guard teaches young women that beauty and strength are two parts of the same whole!
One of the greatest gifts that guard gives to teenage girls is the understanding that beauty and strength are two parts of the same whole. Being a member of the guard means that you have grace and dignity as well as strength and fire. These lessons learned during teen years are life changing and help girls mature and become strong and beautiful women.
I am so thankful that Maddie was a “guardie” and that I had the privilege of being a “Guard Mom!”
(Thanks to Amanda Akins and Derek Dodson for the incredible pictures!)
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!