That one friend…

In your life time everyone needs to find “That one friend”

That one friend who lets you show up at his house in the middle of the night just to talk. That one friend who doesn’t judge you for being crazy. That one friend who stands by your side on your wedding day and tells you you are making the best choice in your life to marry “her”. That one friend who you can do ridiculously crazy stuff with but still know you’re safe. That one friend who sits in the hospital room and tells you everything’s going to be ok with your baby boy and you believe him. That one friend who tackles your wife’s crazy DIY projects because you aren’t handy. That one friend you join a cover band with, stick around for a while then both quit on the same day. That one friend who you go on family vacations with. That one friend you can be on worship team with for 10 years and still love playing with every Sunday. That one friend who teaches you important life skills like how to pop the bottom off a glass bottle with your bare hands. That one friend who goes to your house when you’re at work and helps your wife fix her water heater, or garbage disposal, or light fixtures, or toilet, (really this list goes on and on and on) That one friend who drives your 26 foot moving truck across the country with you. That one friend who takes time off work to help you build ramps for your wife in your new home. That one friend who truly is like a brother. 

Eli thank you for being that friend to Jake.

As his wife I can honestly say I don’t know how we would have made it through the past 8 years without your friendship. You have been what Jake, and often time what I, needed in some of our toughest times in life. You are constant and a true friend. You have been such a place of safety and wisdom, comfort and fun. You are an amazing man and an incredible friend. I pray that even the 1500 mile distance won’t change what you are to Jake and I. My heart hurts thinking you aren’t just around the corner anymore but I pray God will allow us and our families to live life together again

I asked Jake today what you’ve taught him in life. I thought he would have funny answers but here is what he said.

Eli has taught me…”The big dog doesn’t have to bark”, “Not to be scared and to take on new challenges”, “Life is supposed to be fun”, “Silent is strong”, “Be honest, it’s ok”, “How to be awesome and not have an ego”, “Help people as much as you can”, “Laugh”

As I sat (and cried) and read his answers I realized all these characteristics are how I would describe Jake. So thank you. Because you have helped shape Jake into the amazing man he is today.

We love you Eli

 
  

Heading Home

I’m sitting here in the airport on our way back HOME to Tennessee and my heart couldn’t be happier. I’m here with my husband and my two sweet boys and I feel complete. Of course it is bitter sweet as we say goodbye again to our family and friends. But, I’m glad to be heading back. 

The kiddos and I have spent the past two months in Arizona with and without Jake and boy was all of our faith tested. 

Here’s a teeny tiny bit of back story, Jake has lived in Arizona his entire life and for me since I was 10, we met there, found Jesus there, got married there, had our two boy there’s and built a beautiful life full of friends and family. In February of last year we felt like God was calling us to make a HUGE move and pick up our family from everything we have ever known and move across the country to Nashville. We had a glimpse of why God was calling us there, but as you would know if you walk with Jesus, He doesn’t always show us the entire picture. I feel as though He gives you just enough to keep you trusting Him and clinging to His promises He’s given you. SO in August (as in 6 months ago) we made the big move. Though we know God called us there and it is a BEAUTIFUL place, both landscape and people wise, it still was an extremely hard transition. In December we originally planned to go to Arizona to spend the holidays with family and then planned to return to Tennessee the beginning of January. There were, however, some changes in the plan that we needed to adjust to. Our close friend and care giver decided she was ready to move back home. This obviously meant some big change was coming for us. This season had days of questioning God, what seemed like huge set backs or impossible situations and talk of possibly moving back Arizona. That wasn’t ever the desire but our family has needs that just can’t be pushed aside. We of course were willing to do whatever our family needed, but something in us just didn’t have peace about moving back to Arizona yet. So with the new change we knew the kids and I couldn’t return to Tennessee until we found a replacement, however Jake needed to return back to work. So Jake and I said our good bye to each other on January 4. We didn’t know when we would see each other again besides FaceTime, we didn’t know when we were going to return to our home in Tennessee, we didn’t know who was going to be our new caregiver or how anything was going to work out, but we did know one thing, God knew. That’s all that we had to hold on to. So after two months of being in Arizona, after many conversations and prayers to God we are finally on our way home. God gave us the grace and peace we needed to get through a tough season in our journey. Jake and I prayed and fasted and He of course met us! We are heading to Tennessee with new adventure ahead. 

The season we are in is a tough one but there are a few things I’ve held on to during the past two months, things we learned and things we are grateful for 1. Jake and I learned to lean closer to God even when our situation sucked, to TRUST that nothing is a surprise to Him and that He really does have our best interest. 2. We have amazing family and friend support, HUGE thank you to my parents for taking us in the past two months and being so gracious and patient 3. I’m grateful for a marriage that doesn’t fall apart under hard times but we grow closer, Jake, thank you for standing firm in what you know God has said about our family and thank you for keeping me focused on what’s important. 4 Great victory comes from great battles. We feel like we are on the side of victory finally but man was it a battle getting here. But Praise God! The lyrics of Do It Again by Elevation Church has been my anthem for weeks. “I’m still in Your hands, this is my confidence, You’ve never failed me”

The Saturday Shock

Today is a day of such mixed emotions. I’m still in the “Saturday” shock of Austin’s heavenly homecoming. On Easter our pastor talked about the “Friday, Saturday and Sunday” of the the first Easter. Friday was the day of pain, a day of suffering. The day and really week leading up to Austin’s death was one of the worst experiences I have ever had to walk through. It was painful. It was, for us unexpected. I pray no one ever has to experience what my family went through. Just to put your mind at ease, Austin was not in pain. He actually looked extremely peaceful laying in that hospital bed. It was painful for us. For his friends, his siblings and mainly for his parents. My mom and dad are so amazing, so brave and rely on Jesus so much right now as they walk through the shock of losing their 25-year-young son. The death of “Friday” leads into the real-ness of Saturday.

“Saturday.” The day of shock, of disbelief. Jesus’ friends, disciples and followers knew he was gone, but it still leaves you with this “what now” thought. This is an internal feeling I am very familiar with right now. Death makes you step back and reflect on your life. What do you believe? What do you stand for? What are your priorities? At AustIn’s Celebration of life his closest friends got up and told stories of who Austin was. Though Austin was a quiet man he was a man full of Jesus and wanted to be known for that.

If you’ve ever experienced death of a loved one you know it comes in waves. At least walking through it with Jesus does. A spiritual momma of mine has explained it like a blurry cloud. Sometimes God lifts it and lets you experience some of it and sometimes he just “covers” you and protects your heart from too much of it. Some days I can laugh and talk about him with Bronx and Shai and some days everything reminds me of him and I’m in shock that he’s not here.

But that still leaves Sunday. We all know what Sunday was. The day of resurrection. The day of redemption. Now I’m not saying I’m waiting for Austin to resurrect or come back to earthly life. Even though I know God is capable of that. I fully, with every part of my being believe he’s in heaven and is healed and happy. What I’m saying is Through Jesus’ resurrection, there’s hope and redemption.

If you heard what I spoke at Austins Celebration of Life you’ll remember me touching on the fact that Austin and I had many similarities. For those that don’t know, him and I both have the same disease, Spinal Muscular Atrophy. We both have never walked and both shared the life long experience of living in a wheelchair. But some of the differences you may or may not know about Austin and I is that, THOUGH I may seem like the out going, go-getter one, Austin was truly the adventurer and paved the path for me in many ways. Austin was kickin butt with his education, almost finished his college degree in Health Science and just finished all his training for driving his own car which he recently purchased. A beautiful brand new fully converted car that gave him such independence. He looked so rad driving that new vehicle.

Well I believe I can at least see Sunday in the horizon.

Yesterday I had my first appointment with Vocational Rehabilitation. I was in it in high school but never completed anything with it. I chose to get married and have kids and Austin was the one who stuck with it. This is the program Austin was in that was getting him through school and on to his future career. This is also the program that helped get Austin trained and licensed to drive his car. I always felt like driving was “Austins thing” but now I feel like it can be something we both share the experience of. I’ll be going through the process of driving his car. It may take a while but I’m excited/ extremely nervous but want to make him proud.

Also Today I sat through my court hearing for the denial appeal of the Spinraza drug (the first drug fda approved for my disease) this has been a battle for over a year of getting insurance to help pay for it. Austin had gotten approved and had been on the drug for about a year now. I was so excited for him and always asked him a ton of questions about it. 

Today I heard the words “I hereby state that Megan Cuaderno (yes that’s my legal name still) is approved for the treatment Spinraza by the medical staff here today. It is proven medically necessary. 

I was in shock and a little choked up and when he asked if I wanted to proceed with treatment I had to say “yes your honor” without crying. And when he asked me if I had any other questions I just said “no but this is so amazing”.

There’s some things ahead of me that are very different but very exciting. I’m constantly reminded that God will make beautiful things out of hard situations.

I’m not trying to “walk” in Austin’s “foot steps” but I am looking at some things in life differently. I want to carry on some things Austin worked very hard for. I know he would be proud and I want to be proud too.

I love you Austin. Can’t wait to see you in heaven.

I know I’m still in Saturday but at least Sundays redemption is in sight.