My girl

Happy birthday, Reagan. Three years ago, we took this photo…it was before we knew anything was wrong with your newborn screening. A few short hours later, we received a call that would change our lives forever

First family photo.

GA-1.

the 20-minute method

Mothers Day Family 2

We worked so hard to never get you sick…

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…but one day, you got sick.

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And we did everything we could do to protect you.

ER check in for visit 2

We spent eight days in the hospital for your first illness, RSV. And then, after we were discharged, two days later you had a metabolic crisis. Your entire basal ganglia was damaged, and you had three seizures.

Reagan hooked up to an EEG. There are about 50 wires under her cap

Dr.’s said you’d never do anything.

Saturday 2

They were wrong.

Daddy and Reagan on hospital discharge day.

Mommy and Daddy were sad, but we determined in our hearts to do everything we could.

fighting for normal

You showed us you were a fighter…

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You worked harder than we could have ever imagined was possible.

Arms up!

Standing with assistance for the first time.

View More: http://dearlyphoto.pass.us/wurzelfamily2014

You taught us new things. You made us get comfortable with our new normal…with a g-tube.

View More: http://dearlyphoto.pass.us/wurzelfamily2014

pool happy smile

You made our hearts live outside our bodies…and made us give our fears to God.

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You have taught us more in your three years of life, than we have ever learned in our 35.

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How is it, that God has used our little babe to touch the lives of thousands of people? Do you know how special you are, Reagan?

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Did you know, God is using you? YOU!! As a witness to His healing power. Did you know…you’re a miracle that continues to perplex Doctors?

Reagan standing with bauer

You took that walker…

Nuts

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And then decided, you didn’t need it.

Balloons

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You have given us an incredible roller coaster ride in the three years you’ve been in our life and taught us more about Jesus, miracles and what life is actually all about.

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You’re incredible. Happy birthday babe…we love you so much!!

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When people refuse to work with special needs parents

When our daughter Reagan had a metabolic crisis at 13 months old, a customer in Rob’s agency asked a hard question:

“Oh, he has a special needs child? Do we need to take our business somewhere else? Will he be able to help us?”

The employee on the phone handled it with such grace and truth, “Well sir, I’m helping you now, and we have three other people who can assist you as well.”

If it wasn’t bad enough for someone to say that, learning they were missionaries was icing on the cake. Didn’t Jesus talk about how you treat the least of those, you treat me?

Both my husband and I have our own business, and we regularly blog here to provide updates on our daughter. We do it to: 1) give glory to the only one who is deserving of that praise 2) offer other families, special needs or not, encouragement through our life 3) provide a voice for the miracles God is performing in Reagan’s recovery and 4) ask for prayers when needed.

I have wondered if blogging about Reagan could cost me business as a Realtor. Not only has Rob had to hear about one of his customers concerns from another employee, I regularly have to squash things like, “are you still working full time, you still doing the real estate thing?” it’s not a hobby. Or correct people when they say things like, “hey, I’m sorry to bother you, I know you’re busy with Reagan…and I just read your blog…so reply when you can…”

listen to me

I blog because I want to, it’s easy for me to type my feelings out, people want to know how Reagan is doing, how WE are ALL doing. I’ve blogged and then received messages from people about how God put it on their heart to pray for Reagan talking, and the blog revealed why God laid that on their heart. I’ve blogged and received thank you texts because our family was on someone’s heart and they were unsure how to pray for us, the blog revealed specifically how they could pray. God uses this blog and I’m not going to stop blogging because it allows readers to witness the miracles God is doing in Reagan’s life. I feel called to write and to be honest in our story and special needs journey.

I sell real estate (and have been doing so successfully for eleven years) because I want to, because I’m good at it, because it allows me to financially provide for my family. Rob has owned his own business for seven years and has been a licensed insurance agent, selling insurance for seventeen years. Yes, seventeen.

Unfortunately, we’ve both lost business due to the openness in our life journey. I’ve worked with past customers, people who I’ve successfully guided through previous transactions, who have written testimonials or even done testimonial videos saying they would always use me, use someone else. I had one seller hire me and tell me she was so impressed with my ability to sell real estate and care for Reagan…only to call another agent in my office and complain about the fact that I have a special needs child and specifically name and blame my child for the reason her home (that was overpriced based on 20+ showings of feedback) wasn’t selling. I’ve coached sellers, for over a year prepping them to put their home on the market, up to the point of signing paperwork, only to be given a one line, “we’ve gone with someone else” email and a refusal to respond asking what it was that made them choose someone else.  I can’t help but think, it could have been the blog I just wrote that said I’ve been battling an insurance co. for a month trying to get Reagan’s medications.

she probably doesn’t have the time. he’s not in the office today? must be that special needs child of theirs. let’s find another insurance agent. let’s find another realtor…

To me, it’s like saying how can this person be fun and serious, aren’t they only capable of one?  They surely can’t do both.

People tend to look out for number one…the crazy thing though, is that Rob and I are always looking out for our customers, treating them like family, guiding them, coaching them and helping them make the absolute best decision for their family.

It’s especially hard to lose a client who also knows the details of our life. Who knows that a sale would go toward benefitting Reagan’s care, toward therapy. I don’t want pity customers, I don’t need those and neither does Rob. I do a good job and have continued to be a top selling agent in my office, even after Reagan’s crisis. Do I need to post my numbers here on this blog? No. (But if you want to talk with one of the 70 families I’ve worked with since Reagan’s crisis, let me know). Because people who know me and know Rob, especially those who have worked with us, know that we are hard workers, our customers are satisfied and for the most part, they are 100% loyal and come back many times over to hire us.

But this blog is a reality check…there are those who in their hearts know we would do an excellent job, but choose not to work with us due to the other demands on our life, and that’s unfortunate. That’s not a condition of my heart though, it’s a condition of theirs. God has always taken care of our family, in every way.

I tried googling things like, “losing business when you have a special needs child” and the like, but I didn’t find anything that really resonated, so I wrote this blog and I know it will resonate with other families. I know one particular family whose son just had a devastating brain stem stroke and there are fundraisers all over town to help in his recovery. The organizer, who provides daily updates, has had to say multiple times that yes, the father, also a Realtor, is still working. Why would he stop at a time like this, when his family needs him?

Are things demanding when you’re a special needs parent, you bet. That doesn’t make us incapable of doing an excellent job at our job. Here in our house, we continue doing an excellent job for our clients and customers AND we are doing our very best to raise our child, who has additional needs. We want to let you know, we can do both.

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Mamma said there’d be days like this

The thing mamma never did tell you is when those days would come or how they would make you feel.

Like today.

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All I know is I left a therapy appt for Reagan and ended up at home in tears. The dishes were piled high, I looked at a massive pile of clean clothes on our sofa, that have just accumulated more and more as I’ve continued to slide them over to sit and watch a show.  Let’s not talk about the clothes in our bathtub, which has turned into a massive hamper. [forget I even mentioned that, OK?] My other friends with toddlers assure me, these things are normal.

The things I struggle with though are not just maintaining a neat and orderly house where I can find my keys on a regular basis, because I cannot find them. Ever. It’s the daily battles I have with Reagan. Including, but not limited to eating. Eating. The thing I love to do because I’m Italian and it’s in my DNA.

Rob and I dreamed about helping Reagan try all sorts of different food, we dreamed about having meals at home or at a restaurant with our daughter. We dreamed about food because we love it and we love meal time, and now it’s a chore. We did not dream about lugging a g-tube pump, formula bag, tube connection, backpack and formula. I did not dream about having to force feed my daughter food to get her to meet her meal goals. Reagan gets fed four times a day, and lately it’s become my least favorite parts of the day. There’s not much joy in preparing three or four items only for her to throw the spoon, keep her mouth shut, or pretend to take a willing bite just to spit the food into her hands, onto the table or act all gaggy mcgaggerson with it. And sure, maybe this is typical toddler behavior, but unlike most other parents, I can’t just say, “Fine, you’ll eat when you’re hungry!” No, you HAVE to eat. You HAVE to meet these meal requirements. You HAVE no choice. And if you don’t eat, I have to make it up with Pediasure in your gtube. One way or another, the menu goal will win. I don’t want it to be like this, but it is. What I want is for meals to be enjoyable, but I’m filled with frustration, that Reagan most definitely feels, so now, she seemingly eats for everyone but me.

Failure.

That’s the word that’s been playing in my mind. It started out this morning with our first therapy appointment to work on the speech device:

“How’s the talking, has she started talking more?”

Ummm…no not really.

In my head…“That’s why we’re here with this speech device. So a computer can do it FOR her because clearly we’re failing at helping her to talk, since she’s not.”

Another question (or four): Is she eating more, is her tongue going side to side to move food? Are they doing word prompts? But not just word prompts but prompts to connect consonants to vowels? Like this to help her say things like B aaaaaaaa–B-eeeeeeeee, as she moves her hands prompting Reagan’s mouth into all these different shapes to make sounds that form words.

That’s a lot of freaking questions, is what I felt like saying.

Um, I don’t know, she sort of says baby in her own way so I don’t know that they do all that. The other therapists that come to the home do different things. We have multiple therapists to focus on different things and they are good at those things. But when it comes for us helping Reagan put it together…

Failure

Overall, her speech device therapy was good…it just came at me like a bulldozer and I wasn’t expecting it. I came in with a positive attitude and it got flattened pretty quick. I know we need to work on A to Z and then back through the alphabet again. I know that. But even if I do that every day, 24/7, that doesn’t mean the result will happen faster.

After speech, I drove home for another therapy…Reagan’s feeding/OT therapist met us right as we came home from speech device therapy and I was basically in tears over the messy house, over the fact that I can’t have an adorable conversation with my three year old in the car as we ride about town. I don’t know what Reagan would say b/c she can’t say it. I don’t know how she’s feeling b/c she can’t tell me. I feel like I’ve been robbed of these awesome things. The things that make toddlers so stinking cute when they talk and say silly things they can’t pronounce or ask unknowingly inappropriate questions that make everyone laugh. I’m not experiencing that. I’m experiencing another mountain to climb. That combined with a food battle makes for one of those days my mamma told me about.

Rob left work, came home, spoke truth to me and over me, cleaned the kitchen and let me work for an hour and a half to get things I needed to do, done.

But this attack wasn’t done after lunch. No, sometimes Satan just keeps attacking. So I reached out to my friends. They spoke truth over me. And I called another friend while driving alone and aimlessly. “Come to my driveway now.” Is what she said.

And we sat in the parking lot of her community playground and I cried, and I swore and I vented and I tucked my head into her shoulder and just whispered that this is not fair. And she cried and sat and listened. But in only a way that she can do, she turned it around.

Her: How can you be happy at mealtime, Anne-Marie?

Me: I don’t know…It’s impossible basically because I can’t fake my feelings and she’s driving me nuts!

Her: Instead of being frustrated with Reagan during feedings, what if you said things like:

With Food:

  • Reagan, God gave us this wonderful food for us to eat so we can be strong.
  • Let’s be thankful we have this food to eat Reagan
  • God gave you a spirit to not give up. Don’t give up Reagan, you can do it and eat this food
  • Let’s be thankful we can eat and chew and swallow. God healed that part of your body Reagan so that you can enjoy the food that God gave us.
With talking:
  • Try to say (whatever word she’s trying to say). God gave you an attitude to keep going. You can do it Reagan, God will help you.
  • God has helped you with your sounds Reagan, so that way you can start forming words. Keep trying, you can do it.
  • God made you determined, Reagan. You can push through and make those sounds to form words. You know how to do it…
  • You are smart Reagan, show us what you know and let’s thank God for your ability to communicate with words!

Do you know what it’s like to sit with me when I’m spiraling in thoughts from the enemy? Few do. Most of the people I talk with say things like, “you’re so strong, I don’t think I could do that. How do you juggle all these things.”

I don’t…I combust and then there’s a small group of people who can take my F-5 tornado, let it whirl, let it touch down with destructive thoughts, and then can look me in the eye with their own tear filled eyes and speak truth to me. As we sat in the car, she wanted to end with saying things we are thankful for. We went back and forth for a while saying things we were thankful for in our lives.

All day, I was wallowing, and I didn’t want to come back to God…even though I just posted how RELENTLESS He is for ME! Some days it’s just hard, and that’s why we are supposed to lift each other up. We can’t do this life alone, especially in this messy, broken world in which we live.

Relentless

I went to the Dr. the other day b/c I was having chest pain. I know why. I was stressed to the max having to deal with all of Reagan’s super expensive medication that she was close to running out of. Oh the joys of switching insurance co’s (her insurance co. last year, went under). So we’re back with Humana. They are probably thinking, “not these guys again!!”


 

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Hi Humana! We’re baaaaack!!!

I’ll spare you the nitty gritty details, but the reason my heart started feeling like it was being attacked is b/c Reagan’s meds would be denied. After an initial (3 hour call) with the Humana pharmacy and their complete confidence in filling Reagan’s medications, no problem, I decided to proceed with them as our new pharmacy. But after many hours, days and three weeks of follow up, I was days away from being out of medication on multiple meds. The thing Humana forgot to mention is how ridiculously long the process would take and how three medications needed a Dr.’s prior authorization to be dispensed.  So while waiting, three medications were denied coverage, and then expedited appeals and peer reviews were required.

When we finally got to a point where things seemed to be on track, Reagan had one day left of one medication…it couldn’t be re-filled locally b/c CVS was showing that Humana filled it. But Humana couldn’t provide any information on when it would be shipped, I was only told, it’s in process somewhere in their warehouse. I imagined the millions of subscribers Humana might have and thought of that warehouse and wished I was able to go down the street to my local pharmacy. So after paying $25 for that medication days ago, if I needed it tomorrow, it would be $300 at CVS since it was too soon to refill. But alas, hours of phone time later, I had an override code, making that a $10 medication and Reagan not running out. #stressedtotheMAX.

This happened again with another, more expensive ($750) medication. She was almost out, I had paid…but it had not shipped and no one could tell me when it would ship. CVS couldn’t order it b/c the actual cost is $2500 and they needed approval from the CVS manager AND I had to confirm I would pay it. I needed another override code. Luckily the medicine arrived on the last day of medication we had.

So I didn’t really spare you the nitty gritty like I said.

Back to my Dr. appt and my chest pain (which turned out to be stress induced reflux). I told her I knew why it I had it, I was stressed, due to the above and she said, “Having a special needs child is relentless.”

Relentless.

Relentless.

That word has continued to stick with me. She’s right, it is relentless. There’s always a crucial battle to fight. Medications, therapy, formula, feeding supplies, measuring her food, giving her enough calories, but not too much protein. Managing sicknesses to avoid the hospital, juggling multiple dr. appts and blood draws and trying to sprinkle some fun in too. It’s hard.

So imagine, when I think the medication battle is over, and just this week I get a call from her case manager. “Hey Anne-Marie, it’s L the case manager…listen, another one of Reagan’s medications was denied. Try not to panic, we will do the expedited appeal, get authorization and then do another peer review, it can take up to 3 business days.”

[Siiiiiiiggggghhhhhh]

Another medication, down to the wire. Why is it always down the wire? (I’ve been working on this all month). And this medication retails for $16,000/month. And why are these meds so expensive? Can we just praise Jesus we’ve met our deductible in the first month of our insurance plan because of Rob’s cost/analysis spreadsheet genius-ness?

So, I just said “Ok” and sent one email to the Dr. office and left it up to God for the decision to be made in time.

I told God I can’t fight this fight. I have been fighting and crying and my body hurts. I don’t have the energy to fight or worry. I need you to fight for me. And my thoughts lately (from God) have been two words. PRAISE HIM. When trouble comes, praise Him, when it doesn’t make sense, praise Him. When you don’t understand how it will work out, praise Him. So that’s what I did. I hung up and I didn’t think about it again.

An hour and a half later, the medication was approved. Why didn’t I have this posture three weeks ago? I could have saved myself so much anxiety and stress! An hour and a half…I still can’t fathom it. The only thing that had changed from when I started this process to this one final medication was I fully trusted God.

That same day, I had taken my car to the dealer for a routine service. My car has 170,000 miles on it and ZERO warranty, it’s nine years old. I get a call from my service rep, “Hey AM, we need to talk about your car…there’s a repair that’s needed, it’s $2,500.” [GULP]. Again, my posture is to praise God and I ask him to please handle this…somehow.

Rob sends her an email and just asks if she can do any better on the price and we leave it at that. The following morning, we receive this:

Good Morning,

I wanted to give you good news first thing this morning. We contacted Lexus on your behalf. Due to the fact that you are a very loyal customer, Lexus has decided to cover the repair 100%! We are steadily working on it, but I wanted you to start out your morning on the right foot. I’ll let you know how the repair is going later today.

ARE. YOU. KIDDING. ME.

Covered. Paid for. And all I kept thinking was, God is relentless for me. God is continuously pursuing me, covering me and unrelenting in caring for me. And, he never tires in caring for my needs, Reagan’s needs or our family’s needs. What an amazing reminder I was given this week. God is in everything…in getting a medication approved in record time and in paying for my car repair. Relentless.