Tips for Families with Special Needs on Enjoying Disney World

Disney World is a place of magic and wonder. Sure, it’s also incredibly expensive and crowded and hot… but those things just don’t seem to matter when you are standing in front of the castle at Magic Kingdom!

There is something so incredible about being at Disney World and the feeling of expectation and fun and hope. I don’t know if everyone feels it, but as a family that has lived in the world of doctor visits, special diets and treatments, diagnostic tests and rare diseases for the last 18 years, Disney World gives us a chance to live and love and laugh “just like everyone else.”

No, the problems that we face everyday don’t vanish on Disney time. But the problems just don’t seem so big or so hard. Instead of researching unknowns and sitting for hours in doctor’s offices, we research which restaurant to eat at and how to get the most out of “magic hours.”

So here are a few tips for families with special challenges from a seasoned Disney family! Truly… we just returned from Disney for the 5th time in 6 years.

  1. Plan early!

    We typically use a travel agent (Cowboy Way Travel) because they know us and know our needs. But Disney online and over the phone work great as well. I’ve just found that for our needs (two connecting rooms with ground floor access and a scooter), the travel agent can take care of everything and it works. And since we use a travel agent, we also purchase trip insurance. EVERY. TIME. It’s worth the cost.

    Also, by planning early you can make the best use of the early reservations for meals and fast passes. We are talking making plans 180 days out for dining and 60 for rides/attractions!! I know the needs of my family and waiting till the last minute to plan a trip means that you miss out on the best times for rides and meals.

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  2. It’s not an adjoining room.. it’s a CONNECTING room!

    Even as seasoned veterans, when we got to our rooms we found that we had rooms next door to each other, but not connecting! Uh Oh. This doesn’t work with an 8 year old! Disney defines adjoining as touching and adjacent as near by.. if you need the rooms to be able to open inside to each other, you need a CONNECTING room. Our rooms situation was easily remedied, but it’s an important distinction to keep in mind as at peak times you might not get a connecting room if you asked for an adjoining room!

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    Rooms at Riverside
  3. Speak up!!

    When you run into an issue, SPEAK UP! Give Disney a chance to fix the problem.
    One night when we ended up in a monsoon and the bus driver was horrible, we spoke up. Why? Because Disney cares and they work too hard for a bad experience to color the rest of the trip. Taking the time to talk calmly with the concierge allowed us to express our frustration and gave Disney the chance to make it a positive.

  4. If you need the disability access, USE IT!

    But, remember to take ALL of your family’s magic bands with you when you set up access at guest services. You only have to do this once each trip as the disability information is in the magic band. Also, once it is set up, any member of the party can “badge in” and request disability access to a ride/attraction. The key here is to manage your disability access as you can only have one outstanding at a time! The gift of disability access is that you don’t stand in line. It doesn’t make the wait go away, so plan accordingly! We know that we can’t wait in the heat/sun, so we go to shows while we wait for the next attraction.

    And if you haven’t seen Festival of the Lion King, it is WORTH IT!

  5. Plan down time.

    One of the hardest things for me to do is “waste” daylight at Disney, but I’ve learned that in order for Maddie to function for the duration of a trip, she has to have down time. So while the big girls napped, Kylie lived it up at the pool and the playground. Port Orleans Resort has great pools and a fantastic playground. Side note: besides being more spread out, Port Orleans is great for families as the rooms are larger, the place quieter and the amenities spot on.
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  6. Expect to wait for a bus.

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    Hands down, the most UNmagical thing about Disney is waiting for the bus to transport you from park to park or park to resort. If you are in a wheelchair or scooter, the wait can be a while as they only take one or two chairs on each bus. Sometimes these waits are in the rain and sometimes these waits can be an hour (or longer!). Plan for at least a 40 minute wait and then be pleasantly surprised every time you arrive at your hub and find a bus on its way in!

  7. Take your own ponchos and an extra pair of shoes!

    In case you didn’t know.. it rains in Florida. Plan on getting rained on.

    The ponchos at Disney are expensive and tear super easily. We purchase our own ponchos that are heavier plastic and bring them with us! Also, since Maddie uses a scooter, she gets a larger poncho that will fit over the scooter so that she can drive it and stay dryish.
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    Bring an extra pair of shoes.. or be like me and spend an hour sitting in the laundry room holding the door to the dryer closed with your back!
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  8. Find the accessible areas for watching the parades.

    Parades are really cool to watch. Unless you are in a scooter/wheelchair.  Find the accessible areas for watching the parades and take a seat on the curb. It was so fun to watch the girls watch the parade. We are big fans of the Fantasy Parade as it is at 3pm in the afternoon at Magic Kingdom and we can see that one. It just doesn’t matter how late of a start we get, we can’t make it to a firework or evening show as a family. When the sun goes down, my family fades fast.

  9. Ask to speak to the chef.

    IMG_2333If you have special dietary needs, Disney can’t be beat!

    We really wanted to eat at Be Our Guest.. I mean really, who doesn’t want to eat at Belle’s Castle?! But the menu options were not great for Lexi and Maddie who can’t have the normal breakfast items!  So we special ordered off the quick service menu and the chef came out and asked us a few questions and then like magic breakfasts for both girls appeared that were egg and milk free!  And it’s not just this one restaurant, it’s all of the Disney restaurants!!

  10. Make sure the other kids don’t get left out in the process.

With so much of what we do and who we are as a family focused on keeping Maddie well, our other girls get lost in the shuffle. Disney is a place for magic for them as we are able to devote special moments and memories for the girls by themselves.

Magic hours have become our special one-on-one times and are truly those magical memories that get us through some of the hard spots throughout the year.

Lexi and I stayed at Magic Kingdom until almost 2am one night!

And Kylie and I snuck away in the afternoon to Epcot one day and then Hollywood Studios one morning. Spending time with one child is so different than with the group!

I truly have so much more to say, but I’m thinking just this is overwhelming. So I’ll leave you with GO! Just Go for it. I know it’s expensive. But we spend SO MUCH MONEY on healthcare that we have to spend some on our emotional health and our family too.

I commented the other day to the girls and Doug that as we move into the next phase of our lives I don’t know that we will go to Disney as often. Lexi and Kylie were very quick to speak up and say that Yes, we will be back soon!

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Momma wasn’t ready to go from Walking Boots to AFO braces

IMG_3463If you have been around here much, you know that my sweet daughter Maddie has faced 18 years of health struggles, mysterious symptoms and daily pain. Her strength and grace in the midst of chronic health problems simply amaze me.

The past year has been no different. In fact, if anything, she has been more resilient and more determined that her limitations would not hold back her dreams.

She graduated a month ago from high school, 23rd out of 216 in her class. She crossed the stage wearing walking boots on both feet because of a spontaneous bilateral foot drop.

Since that time she has been to three different specialists, has had nerve testing and has had body scans completed.. and there is no medical reason for her feet to not work. The only explanation is that this must be a side effect of her auto-immune disease. And because there is no nerve damage and no “reason” for this manifestation, there is no prognosis or timeline for recovery. Her first episode with a foot drop was back in November and it just affected one foot. This episode took out the other foot and set back the first foot that had been recovering. The only link.. she was in a flare of her kidney disease.

So here we are in Texas and it was 105 degrees today. Neither of her feet work to be able to walk without support and they aren’t getting better. The walking boots are bearable if you don’t have to wear them all the time, and if you know its just for a few weeks… but not if there is no end in sight.

Today we went to the Hanger Clinic and Maddie was fitted for AFO braces. This was real. And IT. HURT.  It hurt because we had to acknowledge that we don’t know when/if she will get better. Every night I tell her that maybe she will wake up tomorrow and her feet will work. But we have to make realistic decisions and choices.

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Maddie chose the Noodle AFO brace as we were able to take it home today. She can get custom ones later if we see that she will need them.  These braces are carbon fiber and will allow her to have more mobility.

She walked around in them and then we paid our portion of the bill.. Dang. These things are expensive…

The specialist that helped us was fantastic and she went to college at Texas Women’s were Maddie will start in the fall, so that was nice as she had first hand knowledge about the terrain that Maddie will walk.

From there we went to Fort Worth Running Company for shoes. I hated to go there as Maddie can’t run and has never been able to run. But I get my shoes fitted there and I knew that they would treat her with respect and courtesy.  And she was! Oh my! The salesman worked with Maddie and did a phenomenal job. When he finished I commented that he hadn’t expected something like this when he got to work today and his reply was that in his previous job he helped fit orthopedic footwear! What an incredible gift to us today. He had no idea the level of stress and heartache we were feeling.. instead he focused on Maddie and making sure that she felt stable and comfortable.

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As we left the store, I couldn’t help but notice her steps and her legs. I’m so thankful that she has these horrible braces. But I am so very mad that she has these horrible braces. I ache for her.

Maddie’s entire life has been about keeping her well and away from germs. I’m used to questions about her kidney disease, her immune system, her chronic pain. But I wasn’t prepared for mobility issues. None of us were, but I guess we should have been given that she has been in physical therapy on and off since she was 8.

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There you have it. This beautiful young woman is strong and is going to do incredible things one day. She is a bright and shining example of all that is good in this generation. Despite all the crap that life throws at her, she smiles, survives and loves others.

If nothing else, I am praying that the AFO braces in all of there “realness” will give the sense that Maddie’s struggles are real and long-term. Lots of people wear walking boots for a short period of time.. but no one wants AFO braces.  For someone that has lived with an invisible illness for 18 years, this is like turning a spotlight on her life.

And for all of you out there, I have one request.. PLEASE STOP asking her about her feet. Please help me cut off the random stranger in the parking lot that practically runs us down to ask what happened to her feet. Please help me stop workers (and even hospital workers!) from asking how she broke both feet. Please help me stop uncaring and uninformed people from asking callous questions and making hurtful comments. This experience has shown us that adults are significantly ruder than children and that the self-importance of people knows no bounds.

We leave for Disney World in just under a week. She will use a scooter as she has in the past…

I’m so glad she has the braces for the trip.

I’m so sad that she has the braces for the trip.

My heart was not ready to go from walking boots to AFO braces.

What I learned from watching my daughter in Colorguard

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!

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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.IMG_2186 2

(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.

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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!

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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!)

 

Fostering Creative Thinking

Children are innately creative. I know this. I see this everyday.  Yet I regularly hear adults say that their children aren’t creative. I try to be nice. I’ve learned to just keep my mouth shut and not call out these parents, but oh it is difficult! Children NEED to be creative. It is who they are! From invisible friends, bringing soldiers and dolls to life, and even simply playing house, being creative is a necessary part of a child’s growth and development.

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Why do parent’s say that their children aren’t creative? Well, over the years I’ve decided that it is a control issue. Creativity is often messy.  Creativity requires a suspension of disbelief. Creativity embraces differences and pushes boundaries. All of these are areas that make adults uncomfortable. Believe me. I know! Even in my world where creativity is a prized treasure, it is still messy and at times drives me crazy.

But it is worth it.

So what do you do if you can’t fathom the thought of glitter in your carpet, paint on the back porch,  a million legos underfoot or blanket forts in the living room?IMG_5539IMG_7590

 

 

 

 

 

 

 

 

 

Well, start simply.

There are some great games that you can play. While Kylie is the one pictured here, all of my girls are willing and happy to play the games in the pictures together! And that is a win in and of itself! Our family plays games. We play card games, board games and dominoes. We put puzzles together and build lego creations. If the idea of Playdoh crumbs smushed into the kitchen table and chairs gives you the willies.. start with games like Otrio, Trax or Mental Blox.

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(FYI.. this is NOT a paid advertisement.. these are my real life recommendations!)

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Fostering creative thinking is a soapbox issue for me. Why? Because I’m amazed at how many adults DON’T KNOW HOW TO PROBLEM SOLVE! And we as a society are not teaching nor are we modeling to our children how to problem solve, how to come up with new or different solutions to problems or even how to think for ourselves!

While I am a huge advocate for technology and I want equal access to information and all that technology brings, I am worried about the immediate reaction to just “google it” when something doesn’t work.

Resiliency is more than being able to survive when the internet is down!

We have to model and teach children that when there isn’t a clear answer, sometimes we have to simulate the what-ifs and work through options. We have to not only allow FAILURE, but embrace it and show our children how to move through failure to success!

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So there you have it. I challenge you to go be creative today. And no, you don’t have to go paint a picture or create a sculpture to be creative. Go play a game, create a fairy garden in the flower bed, build a treehouse.. do something that doesn’t already have a set finish point and that requires your brain and your body to work together in a new way!

And finally, enjoy the journey

Primary Immunodeficiency

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.

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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.

Tonight my laugh was brittle.

No wonder I don’t have my Christmas Cards ready to mail!

I’m sitting on my couch drinking my second cup of coffee and enjoying a Christmas cookie for breakfast. I thought about getting up and going to work out… but it is the first day of Christmas break and I’m going to just enjoy a few minutes of peace instead. Well, it’s peace-ish..Kylie has already been up for an hour and a half and is talking to me. It’s only 7:30am.

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I had the best intentions of doing more blogging this fall and I really wanted to get Christmas cards made and sent out.. but life has been BUSY! I realize that is always my excuse, but it’s the truth!!

So instead of recording experiences and prepping cards, I’ll just hit the highlights since my last post.

Lexi turned 13!! We had a family party and then she and three friends spent the night at a hotel with an indoor pool and had a blast. I had an adjoining room and one of my friends came over and scrapbooked with me! It was a fun party.

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Doug turned 50!! I surprised him with a trip to San Francisco. We loved it!! I need to blog about our trip…

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We hosted our family Thanksgiving. We learned how to make dressing and played outside. We had a great day of just being together.

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Kylie was in her fall safari themed musical at school. She made her own ears. She is not just creative, but she makes useable items as well. Super cool.

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Lexi auditioned for Junior High All Region Band and made it! So proud of her. It is rather hard to bring home your french horn and practice when you have been on crutches for a few months!IMG_0961

Lexi broke her right ankle the first weekend of September. She has been either on crutches with a cast/boot or in a boot for more than three months. Another MRI was done this week and she sees the doctor the day after Christmas to reevaluate. This is some slow healing.

Then in mid November, Maddie experienced a 50% foot drop. For no reason at all. Just one day her right foot decided to not work. The doctor said that it is a reality of her autoimmune disease. These things will just happen. So she is in a boot until the nerves in her right leg decide to work again. Yes, that means we have two red hair beauties that are almost the same size in right boots. Yes, we stop traffic!

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Kylie got her first pedicure. Our lives are so very busy with Almost Adult 1 and Teen 2 that Child 3 gets shuffled back and forth and back and forth. It was nice to just chill and do something with Kylie that wasn’t school related.

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We decorated for Christmas.

We watched Maddie at the Yellow Jacket Football games. Our football team advanced in playoffs to be part of the final four. It was so cool to watch Maddie and the band perform at AT&T Stadium (Home of the Dallas Cowboys). Yes, Maddie performed each week in a boot!

Kylie got her braces off.

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Lexi and Maddie both had band Christmas concerts.

Kylie saw Santa

Doug and I saw Santa after we ran a local 5k…

We had Maddie’s senior pictures taken. They are amazing and I can’t decide which ones to buy.. and the reality of her growing up and leaving home is setting in…

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And I finished my Superintendency Internship! Along with everything else in our lives! I recorded over 150 minutes of video evidence of me presenting to organizations and/or interviewing district administrators about school districts, I documented over 150 hours of research and service within our district, completed the course work that accompanied the internship and I took the certification test and passed! It is so very nice to have this checked off as complete on my list of things to do!

When I look back at the highlights of the last couple of months, it is no wonder I don’t have my Christmas cards ready!!

So there you have it. I’m hopeful that this spring things might not be quite as hectic and I’ll be able to blog more. I also have some goals for the spring. Don’t worry. Nothing big. No new course work for me.. just goals like “make better food choices” and “clean the bathroom”.. things like that.

Thanks for sticking with me and have a great 2017 holiday season!

Transitional Parenting

Transitional Parenting.

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Maddie and Me. Photo by Amanda Akins Photos

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!

 

 

Open letter to Pediatric Specialists

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:

  1. 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!
  2. 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?
  3. 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.
  4. Listen
    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.
  5. 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.
  6. 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..”
  7. 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.
  8. 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.
  9. 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!
  10. 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.

The quest continues with Specialist #22

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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.

Sandwich Parenting

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?
Dad: Why?
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?
Son: Why?
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.