Mix together, and surprisingly enough, you get peace. These last couple weeks I feel as though perspective has really been thrown in my face. The trials in my life have opened my eyes to what really matters in my life. I’ve chosen, which life is all about choices and how you will handle a circumstance, to really re-focus my heart. I know that I’ve always been a “good” person, but being in the world of Sanfilippo has really made me reflect on how “good” I really was. Before I dive in, this post is probably going to be deep but completely heart felt. It also might get long, but I hope you hold on until the end.
Yesterday was a really big day for me. Emotionally hard and scary. A glimpse of what our future may hold. I attended the visitation of Steffany Barnett. Steff was 15 years old, and won her battle against SS. The same thing that Livia has. I say she “won” her battle, because she is finally free of her pain. She has WON her place in the Kingdom of Heaven, and because of that, she’s won. Steffany lived in Bloomington with her mom Val, dad, Steve, and brother Stevie who also has SS. The Barnett’s were one of the first local families that we met. They hold an annual family gathering in Bloomington. Val is one of the strongest and most compassionate people I know. She always has it together, and radiates peace whenever I’m around her. Steffany battled for the last three weeks, and her passing was to be expected. I knew that I wanted to attend her visitation to support Val and Steve. If roles were reversed, I know they’d be there for me. My drive to Clinton, Il was a blur. I was so nervous and scared to face them and to see Stef. What was I going to say to them, is this something I’m going to have to face, where is my faith right now? I tried to reflect on the fact that Steffany isn’t suffering anymore, but the worldly hurt got in the way. Val said, “the purest love comes from non-attachment.” I just can’t imagine what losing your baby feels like. I always sense peace when I’m around other families with MPS children. You have to be a strong person, or choose to be strong, when facing SS. As I was getting ready for the visitation yesterday morning, I felt perspective again. My mind was filled with thoughts of the day. I was consumed. I turned the TV on and put Finley on my bed. I showered and starting thinking about “getting ready.” What was I going to wear, how should I do my hair, what color eyeshadow, do I have waterproof mascara, on and on. I easily could have spent 2 hours getting ready. I then thought about Finley. Was it really worth spending all that time on “getting ready?” I decided it was more important not to let Dora the Explorer raise my child. So, I dried my bangs, let my hair air dry, and played with my baby. I finished getting ready while the girls were eating. I re-focused my attention on where I thought it mattered more. Perspective, I think so! Along with perspective, this also humbled me.
I like being humbled. Moments in my journey has created such humility, and again made me re-focus my heart. I’m humbled at people’s generosity and love. As ugly as SS is, there is so much beauty surrounded by the families that we’ve encountered. I’ve met some amazing people along the way. Not only other MPS families, but people who have a genuine concern and want to walk along our sides in this life. I’m humbled by people’s comments on my blog. Being humbled has introduced me to the ME I’m proud of. I’m discovering capabilities within myself that I’d never known I could accomplish. I love the idea’s that are swirling in my mind. I love the feeling of wanting to help others. Being comfortable with myself is a peaceful place to be. I came across a saying that I love, “Be YOU, find YOU.” I think I’ve found me, and it feels really good to know what matters to me, not be ashamed of what I believe in, and feel comfortable enough to share my thoughts. I’m also humbled by the fact that I have a loving and supportive husband. Jake has taught me so much in the few years we’ve been together. (8total) Jake has an extremely strong Faith. He loves his entire family. Knows no stranger, and is the biggest social butterfly I’ve ever met. He’s the type that would give his shirt off his own back. I’m humbled by the fact that he chose to share his life with me. Through these last couple painful years, his love for us has never wavered.
“Pain and acceptance can co-exist in the heart to create peace.” This was printed on the back of a bookmark that was at Steffany’s visitation. It speaks mountains to me. I feel like it is my heart that has found this co-existence that is peaceful. There are moments of really bad patches where I don’t know how we are going to get through this. Again, being humbled in the fact that I have my girls, and get to enjoy them today is peaceful. Standing in the visitation line, looking at all the pictures of the Barnett family was so hard and emotional. I felt like my heart was going to jump right out of my chest. I thought the person behind me could probably hear the lub-dub coming from my chest. There was even a picture of Steffany wearing a LivLife tshirt. I of course lost it. The anxiety of getting to Val and Steve was painful. It was the anticipation of knowing what to say and how they were really doing that was eating away at me. As soon as I got to Val, she embraced me, kissed me on the cheek and told me she loved me so much. She whispered in my ear how much she loved Livia and that we were going to make this better for her. She was comforting me, in her time of pain. How powerful, and humbling is that? That’s who Val is, and who I aspire to be like. She was at peace and I could sense that. I embraced Steve and gave my condolences along with a little gift from Liv (that’s an entire other story.) I thought that viewing Steffany’s body would be the hardest part. It wasn’t. I envisioned myself standing over her body weeping uncontrollably. It was just the opposite. Val’s mom stood by my side and talked with me for a couple minutes about Steff and her passing. I was at peace knowing she was not in pain. I accepted the fact that she is no longer with us physically, but embraced the knowledge that we will see her again.
This road that we are on is so uncertain. It’s uncertain for everyone, but choosing a life filled with happiness, fun, and love is where I know I want to be. I’m choosing to live a Grace filled life, and want to extend that to everyone I encounter. Steffany, you will be missed, but you are an inspiration in my life. I love you Val, Steve, and Stevie. My heart is forever grateful that you have allowed us into your lives.
For Steffany Eileen Barnett