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.
Cause Maddie matters.
Today we are meeting specialist #22.
Yes, today will be the 22nd time we have sat down with doctors who have chosen to specialize in a branch of medicine and have hoped for answers for Maddie.
I’m hopeful. I have to be.
But I’m not “getting my hopes up.”
Over the last 17 years we have learned resignation. Dang.
But we have never given up. We have never quit. We have never stopped searching for answers.
So today, we go meet another doctor. We tell Maddie’s story again.
Maybe, oh please, maybe today we will meet a doctor willing to captain Maddie’s uncertain and uncharted medical ship.
We have to hope.
I love matching family vacation shirts! But with the wide span of sizes and ages, it is hard to get something that everyone will willingly wear. So… I’m making them!
We leave for Disney in 21 days! So far I’ve purchased/ordered the shirts and the heat sensitive vinyl and am creating designs. I am WAY more into the design phase than my family. In fact, I am pretty much driving them crazy with this “how bout this one questions.”
For Day 1 which is traveling to Disney and spending some time at Magic Kingdom I have us all wearing the same shirt.
I didn’t put the date or “McLemore Family Vacation” on it because my goal is to create shirts that we might just want to wear after the trip!
For Day 2 we are returning to Magic Kingdom for the full day and we are all going to go with the Peter Pan theme. I bought green shirts as bases. Here are my designs.
Day 3 is Hollywood Studios and I purchased Kylie a shirt from Walmart as our jumping off point. We are going to be wearing purple shirts and sporting the Star Wars theme.
Day 4 is off to Universal Studios where Kylie and Doug are going with Marvel shirts and Lexi, Maddie and I are going with Harry Potter!
Day 5 is back to Disney and Animal Kingdom. Hakuna Matata anyone?
Day 6 is a little Epcot and then home. I’m still working on these shirts, but I’m leaning towards Beauty and the Beast… Beast Mode for Doug and “I want Adventure” for me.
I’ll share pictures of my finished work soon. 21 days till Disney!! Woohoo.
Sandwich Parenting… parenting your own children and parenting your parents. It isn’t easy. Maybe that’s why it’s called that, cause being caught inside both ends of the spectrum means that you end up smooshed like a piece of expired bologna.
Today was one of those days.
I don’t put this out there to get a woe is me. I am not a martyr. But I am very much the mom of three kids that need me and the daughter-in-law turned parent figure of a very vocal and needy mother-in-law. My husband takes the brunt of his mother’s ire, but man, oh man, parenting a parent while parenting your own children is difficult.
Below is a snapshot of two REAL CONVERSATIONS this morning…
with the 7 year old
Daughter: Can we go to the storage building?
Daughter: To get a dollhouse couch.
Dad: Not today. We are all sick and getting in the storage building would be bad for our allergies.
Daughter: (Tears) Why can’t I ever get what I want? Why don’t you understand me?…
with the 77 year old
Mom: Can we go to the storage building?
Mom: I want to look for some perfume.
Son: Not today. We are all sick and getting in the storage building would be bad for our allergies.
Mom: (Tears) Why can’t I ever get what I want? Why don’t you understand me?…
It’s the daily conversations like these that wear on your soul. You expect to have fights with your kids. That’s part of parenting. But having duplicate fights with a grown woman are hard to take on a daily basis.
What is truly frustrating to me is that I watched my father-in-law have these same conversations with his mother and Doug’s mom wasn’t happy with incredible stress that was placed on her husband because of it. By the time I joined the family Doug was a grown man and his parent’s were retired while caring for Doug’s dad’s parents. But here I am watching the same situation, next generation, but our children are small enough to still need lots of parenting. I am trying my absolute best to not be bitter. Some days are harder than others.
So for those of you out there living in the land of sandwich parenting, let me say, you are not alone. It is tough and it feels like no matter the decision you make for your parent it isn’t the right one, but hold on and enjoy the very rare and brief moments when all the ingredients in the sandwich create a masterpiece.
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!
Tomorrow is the start of Lent.
In our house we have been talking about what we are going to give up for the next 40 days. It is a hard conversation to have with a 7 year old. Kylie immediately said that she would give up soda. She doesn’t drink soda. I explained to her that really Lent is a reminder of the sacrifice that Jesus made on the cross for us, so what we give up should be a sacrifice. A small token sacrifice, but it is the mindset, not what is actually given up.
This year, I am replacing 40 of my typical meals (donuts or fast food) with super healthy meals (this is a big sacrifice for me).
I am also once again completing the 40 bags in 40 days challenge. We love using this time to declutter our house. It is amazing how much junk accumulates over the year! 40 bags is incredibly easy to fill. One year we started with grocery store bags as it seemed scary to try to fill trash bags, but we quickly realized that trash bags were the way to go. I might even use contractor bags this year!!
If you have never done a declutter challenge, start someplace easy and non-emotional. Don’t start in your closet. Start with the kitchen junk drawer. Work your way to the emotional areas like your closet and the “skinny” clothes and your child’s toy box.
I have attached my file that I use to keep track. It is a jpeg so that you can download it and print it as well.
Good luck and let me know how you did!