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.