The Quiet in Quarantine

When Reagan was born, we were told to never let her get sick due to her GA-1 diagnosis. Sometimes I feel like the entire world just gave birth to a medically fragile child.

Seven years ago, Rob and I become ultra aware of germs, being out in public, sanitizing, and protecting a baby with no built up immune system. All that striving and need to maintain control still didn’t yield our desired outcome. Reagan had a metabolic crisis, stroke, brain damage, all the most horrible things you could have a nightmare about was our reality.

God has taught me so much since then. He’s shown me how to decipher what is really important, what really matters. Now quarantine is forcing everyone to do that.

It’s so odd to me that even in a pandemic, we are piling more onto our plates, increasing our work loads, our children’s workloads, distracting ourselves, or diving so deep into the news that we become paralyzed. Is this an American thing? Can we not just be?

It took a long time, but I have learned no matter the season, no matter the struggle or triumph, only one thing matters and that’s where we stand with God. Don’t you think that God might be shaking up the entire earth to gain our attention?

Sports are canceled.
School is at home.
Work is at home.
Everyone is together.
People are stressed.
Jobs are gone.
Countries have shut down.
People are shutting down.

We almost lost Reagan completely, we still lost a lot. I could barely function. Everything felt meaningless, I did a lot of things to distract me from my new reality. My mind and my emotions were turbulent and the only thing that could ground me and help me was reading God’s word. Talking to God. Fighting with God. Wrestling. Breathing. Learning and realizing that God never makes mistakes.

A pandemic is hard, but if I could offer up what I’ve learned through my life’s own pandemonium here’s what I would say:

  1. Release the things you can’t control (this is a continual process).
  2. Get rid of things that don’t matter.

Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ and be found in him, not having a righteousness of my own that comes from the law, but that which comes through faith in Christ, the righteousness from God that depends on faith—that I may know him and the power of his resurrection, and may share his sufferings, becoming like him in his death.” – Philippians 3:8-10

This pandemic is a marker, an event that will live in the history of the world forever. And we are all experiencing it together. Because of the losses and grief we endured with Reagan’s crisis (and still endure as we enter new milestones and seasons) I have realized that anything we have gone through or will go through that hurts is WORTH it, due to the how much I now know Christ. I HAVE to spend time with Jesus every single morning to make it through the day. And now everyone has time, we’ve got time.

Can I be really honest with you? The Bible is filled with people who really don’t know what the hell they’re doing. They mess up all the time, they cheat, murder, lie, hide, steal, distract themselves with anything they can to not deal with God, and then try to cover it all up in lame human efforts. The people in the Bible are just like us.

James 5:17 says Elijah was a human being, even as we are. FREAKING ELIJAH! He never died and was taken up in a chariot of fire to Heaven. He’s just like us? Really? The rest of the verse says he prayed earnestly. Is that the only difference between the rest of us and Elijah?

Can you be still in this time and listen for what God is wanting to tell you? Can you wait and see what God wants to do? Do you believe that God still has a purpose in a pandemic?

We’ve been separated and sifted, we’re mostly doing life alone, and we’re not made to do life alone. Even now, there’s talk of slowly opening up our country, ahead of expert’s opinions. Are you rushing back into the grind? Are you afraid to go out? Who are you doing life with if you are mostly isolated? What is filling that void, is it God? How are you pandemic’ing?

REMEMBER

  1. Release the things you can’t control.
  2. Get rid of things that don’t matter.

Then, be still and and allow God to fight your battles. You will never regret getting to know God, or seeing his plan for your life, I promise. Through this pandemic, we can see how little we actually do control, and how little the things that used to matter actually matter. This pandemic is a perfect time to test whether God is who he says he is. It’s the perfect time to take 10 minutes a day and read a verse, download the Bible app, ask God to reveal what he’s trying to tell you or teach you. And don’t be afraid to tell him how you feel. He wants to talk to you.

In the moments of quiet I’ve had and spent with God, I have been amazed at his continuous revelations of knowledge, wisdom, grace and peace that surpasses anything this pandemic has brought or can bring. I hope this is encouraging to you and challenging. If you want to take me up on this challenge, tag me on IG with the hashtag #10withGodchallenge so I can continue encouraging you.

Quarantine well my friends.

xoxo
Anne-Marie

Across the World

Four years ago, if you told me that we’d travel to another country WITH Reagan, I’d say you’re crazy.

But here we are, on top of mountains, doing things we never even dreamed our family could partake in.

This trip is exceedingly, abundantly more, than we could have ever imagined. Guys, there’s snow, in JULY!

We’re in Whistler, Canada. We went through customs with Reagan. We flew almost 8 hours and drove 2 1/2 hours to get here. We took two gondola rides, on cables, above mountain tops to get here.

I’d like to point out, it’s not just any gondola ride. It’s the Peak to Peak. It’s the longest gondola ride, almost 2 miles, and the highest lift of it’s kind, with an elevation of 1,427 feet. It’s some sort of record. Which is ironic because I feel like we’ve broken a life record just to make it here.

As I looked across the horizon and over so many gorgeous mountain tops, I couldn’t help but think about how far away we are from what we’re used to, and how scary that can be if you’re a parent to a medically complex child.

I am SO proud of us.

Am I nervous? Yes!! I keep wondering how we’re going to help Reagan meet her food goal by winging it, especially on top of a mountain. Evidently Canada doesn’t want to forget their vegetarian friends because lo and behold, there was a veggie burger just waiting for us after our first gondola ride, in all of it’s quinoa glory. I was shocked.

Can I tell you an honest truth? If you’re in a tough spot in your life right now, I know and I understand, that you don’t think a mountain range is in your future. The climb might be arduous. No, it will be arduous, it’s a mountain top we’re talking about! But you can make it there, God will help you. And boy, when you do…it will it be exceedingly, abundantly more than you could have imagined.

We literally made it to the very top of a mountain with our daughter today. I’m amazed.

Make My Day!

Since the Dear Humana post, and email to their corporate relations blog post, I was contacted swiftly by Humana. First by customer service, and then by their social care department since I posted to social media.

In our minds, Rob and I had decided to stand still (especially after those waves) and allow God to fight for us.

But Moses told the people, “Don’t be afraid. Just stand still and watch the Lord rescue you today. The Egyptians you see today will never be seen again. The Lord himself will fight for you. Just stay calm. -Exodus 14:13-15

Jessica in the escalated customer service department knocked it out of the park. She contacted me Thursday late afternoon and said she was pulling every call, every note, speaking to every person at Humana who ever touched the file as well as to our providers, she also indicated that Humana was holding conference calls in regard to our case and that it was a top priority. Before we got off the phone on Thursday, she let me know she had compiled most the evidence and was still going through it, but that I’d likely have an answer on Friday.  I assume that she needed to comb through a somewhat sizable mound of stuff before arriving at an answer. I tried to remain confident in the outcome b/c I had evidence on my end, but I didn’t know what Humana would have.

On Friday, around 2 p.m. we had our answer. Humana could not find the call btw Dr. Ried and the originator of the authorization code, but they could see notes in their system that a call did happen on May 22, and there was overwhelming documentation in the notes of Humana’s authorization department that did confirm 288 total services (72 per discipline!) btw physical therapy, occupational therapy, speech therapy and feeding. Humana is honoring what they originally told us and our two providers on May 22 and May 28, as well as sending a letter to that effect, and agreeing to the 288 therapies until the end of the year!!

Thank you so much to everyone who shared our story and who told Humana to pay attention! Rob and I are so grateful for the massive army of Reagan warriors we have.

I don’t know what happens in other situations that may be similar to ours, I just felt like this had to be redeemed. We had to push, and you guys helped Humana notice. Always push for what is right and never, ever, ever give up!

fill my storehouse

Hear the cries of my heart, O Lord my God; listen to my prayer.

Each morning and evening I put on the whole armor of God so  can stand against the wiles of the devil, but my spirit grows weary.
Strengthen me; Equip me;
Give me the endurance I desperately need during these times according to your never-ending love.

My storehouses of hope and joy are nearly empty.
Multiply what is left, let them overflow.
Have mercy on me; Have mercy on my wife;
Have mercy on my daughter according to your never-ending love.

From your mighty words this earth was created and all that dwells in it.
You command all; you are ruler over all, there is no equal.
Silence the enemy and destroy his work.

Restore us!
Make your face shine upon us!
Save us!

Tears

I am sitting here with hot tears just rolling down my face.  Reagan started foods…and it is really exciting. But my baby eating foods is not like your baby eating foods.

Reagan’s dietician Sandy gave us menus to work with as Reagan starts food…we have a certain amount of Lysine Reagan can have a day. During the last visit, Sandy gave us four menus to work with as we’ve started to add in foods. We can choose from one of these menus every day…this food is in addition to the 29 oz. of formula she’s currently having every day.

  1. 16 grams rice cereal & 53 grams of sweet potatoes
  2. 19 grams of rice cereal & 71 grams of pears
  3. 16 grams of rice cereal & 53 grams of squash
  4. 17 grams of rice cereal & 71 grams of peaches

In these recipes Sandy’s figured out the grams of protein in each menu (about 1.7) and the milligrams of Lysine (btw 76-78).

i-m-so-confused-o

There’s a math formula to figure that out…oh joy. Have I mentioned before that I have math anxiety…it’s a real thing, if you don’t believe me, refer to paragraph one.

So in order to figure out a daily menu for Reagan, here’s what’s involved:

Protein amount (in grams)
x % of Lysine = (I have no idea what this equals)

*Side note, food companies don’t tell you the Lysine content in anything…you have to figure it out…there’s a separate sheet for that to refer to. Yay! More numbers!

Take the equals amount and multiply (x) 1000 = (I have no idea what this equals)

DIVIDE!! (I don’t even know where the division signal is on the keyboard)
= mg of lysine / gram of food. And this is what we are trying to figure out every day.

Are you thoroughly lost yet? Yeah, now you know why I’m in tears.

unfair

But then again…

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In order to be helpful, Rob found a spreadsheet online from a textbook that we now own, which has every single baby food available.  So now, we have all the baby food catalogued in Excel…It’s 300 rows long and eight columns wide. Rob is so good he even did nine tabs of the different brands. In the spreadsheet there’s the name of the food, how much is in a container, jar, pouch or tablespoon, followed by how much that container, jar, pouch or tablespoon weighs, in grams, and then followed by the gram count of protein.

yes! we won...we found a cheat sheet. But, don't get too excited...
yes! we won…we found a cheat sheet.                  But, don’t get too excited…

Then…there’s a column for “Known mg Lysine/gram of food” which is blank for 300 rows. Yeah…that’s 300 math problems for something I don’t understand…and have been trying to understand for days.  And here come the tears again…

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Sure, it’s probably really easy for anyone else out there who doesn’t have math anxiety or someone who got through high school algebra II with a C or better…not someone like me who failed that class and had to make it up in summer school. I’m also the girl who cried in college as I walked out of finite math (yes, finite math, apparently it’s supposed to be easy). I opted to take college algebra at community college b/c they offered extra credit for going to the math lab. I spent five to ten hours every week in the math lab, b/c 1) I needed it and 2) I needed it!

This math formula that I am now charged with knowing like the back of my hand in order to figure out what Reagan can eat on a daily basis, is stressing me out just a bit (could you tell from the animated gifs in this post?)…

I don’t know how to do the math, my mind just doesn’t work this way…not to mention I just have so many awful memories of math class and how stupid I felt or was made to feel.

At our last appointment at Nemours, I was transported back to math class.  I really tried hard to pay attention, but I was lost.  As our dietician explained everything to us, Rob instantly comprehended what she was saying and told me he’d explain it to me. But I really don’t know if he fully understood my aversion to math. My eyes literally started to glaze over as I watched Sandy and Rob do these math problems together…it was so simple for them…and I just thought, “How am I ever going to understand this and be able to do this?”

And…now I’m sobbing.

crying-gidf

When I took my last math class 13 years ago that was it for me…there was no more math in my future. Heck, I narrowed down the major I chose based on how much math was required! So needless to say, I was so glad to be done with figuring out equations for the rest of my life. In real estate, calculating your mortgage payment, or how much a seller will walk away with is easy to me…no big deal. But these crazy solve for “X” equations (all 300 of them) is too much for my brain to take.

We go to Nemours tomorrow…we were supposed to come up with 4-6 menus of 125mg of Lysine in them…I was going to try and do that today…but instead I got so frustrated and have been crying uncontrollably ever since. I don’t have any menus. Rob promises he will help me…and I know he will. I joke that he’ll spend five years explaining this and then when I finally get it, Reagan will be going to school…he told me he’d explain it for the rest of his life if he has to (what a good and patient man). I am so blessed to have a dedicated husband, who’s also very good at math b/c it’s not easy to explain math to someone like this…wish us luck!

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