Be soft!

This spoke to me today...wanted to share.

On Brokenness

I'm having one of those weeks. You know the kind where nothing seems to go your way and everything is upsetting? Those weeks. I want to say that I can't understand where all of this emotion is coming from but that's not true. Last weekend I spent time in Wisconsin with my niece and nephew. I mentioned before that their beloved, devoted, very young father passed away unexpectedly last week. I think the reality of that, even though I had only met him once and he was no longer married to my sister, hit me really hard. I don't know what it is lately but I've been increasingly aware of mortality. Not my own necessarily but just of the brevity of life in the grand scheme of things. Honestly, I have experienced the death of close loved ones more times than I want to discuss, but maybe that's the result of being exceedingly blessed with a lot of wonderful people in my life. You can't cut yourself off from people just because you are afraid that you are going to get hurt. You will. That's a fact. But I think that's one of the things that makes life so beautiful and rich. There is so much risk involved in putting yourself out there, over and over again, only to have to let go of your loved ones in the future. I have so many memories from being a kid, spending time with my mom's sister, my Aunt Janice. She was my mom's best friend. They did everything together. We shopped, they talked on the phone, we went to her house, we ate dinner together, she attended my school functions - she was as proud of me as though I was her own daughter. She never had any children of her own but she never treated me any differently. She was the first person I vividly remember to pass away in my life. She had gone for a routine surgery and developed complications. She slipped away and never recovered. I knew that next morning just by the look on my parents' faces. I remember feeling completely numb and devastated inside. Even at 11 years old I couldn't cry immediately. I just wanted to be by myself to feel it. I started listening to music for therapy at that point. There was something about other people's words that helped me start to heal. It was hard because it shouldn't have been that major to me. She was "just" my aunt. It wasn't my parent. But she was so much more to me. My whole life growing up it was like I had three mothers: my mom, my aunt, and my Gran. My dad's side of the family lived all over the country and I didn't get to see them as often. My mom's side lived all around me. They were active in my life. They practically raised me together. The pain of losing her daughter was too much for my Gran to bear. I could see in her eyes the shell of the woman that was there before she passed away. I get it. No parent ever wants to think about the possibility that their child may not outlive them. It's the worst possible scenario. So my Gran stopped living like she had before. She didn't go to church as often. She wasn't as happy as before. She and my mom were so completely heartbroken it just wasn't the same. That next year, 364 days after my aunt passed away, I found my grandmother in her upstairs bedroom. I came screaming down the stairs and told my mom that my Gran wouldn't wake up. The ambulance came to help her but it was too late. We believe she had a heart attack and died instantly. At that point, I was in shock. First my aunt, then my Gran. I couldn't believe another person in my life was gone. I became terrified that someone else was going to die. I'm pretty sure that's when my anxiety started but I never could put a finger on it until years later. Compound that with the fact that my mother's muscular dystrophy was advancing rapidly at that point. So not only was she completely distraught emotionally but she was also having a harder time physically. Her speech was becoming more difficult to understand. She was losing her balance and falling more. It was awful. But I never felt like I could really talk about it with anyone because I never wanted to burden them. That's always been a problem for me and still is - I don't want to share how I'm truly feeling because I feel that it will make other people sad. I don't want others to have to feel sad and I especially don't want anyone to ever feel sorry for me. That would be the worst possible thing for me. I've always tried to just power through the hard stuff in my life and know that either God's got this or else I do. Either by myself or with His help I'll make it through. High school was better because I had a lot of distractions and I tried to spend a lot of time away from home. I regret that now because I know I wasted a whole lot of valuable time that could have been spent with my beautiful mother. I picked a lot of fights and arguments just trying to not feel so hurt about her condition. I just wanted to be angry with her even though I knew none of it was her fault. I wanted to be angry with someone or something and I was scared to be angry with God. I thought He might smite me even more than I'd already been. I tried not to feel like anything in my life was my fault but I couldn't help but wonder what I'd done wrong to deserve all the crappiness. I was scared to death of what would become of me when my mother passed away. I didn't know how much time we had. I was angry and angsty which I know is a typical teenager thing. But I also wanted to figure out how to take care of myself and others because I knew I was going to have to one day. I tried to take care of my mother as best as I could. I know I shouldn't beat myself up when I was only a teenager but I could have done a whole lot better of a job taking care of her. But it didn't matter. My mother loved me with the fire of a thousand suns and was so proud of me her heart probably could have burst. She told me over and over how much she loved me and how proud I made her. There was never any shred of doubt about that and for that I am eternally grateful. I have some things I would love to apologize for at this point but at least I know that SHE loved ME. She thought I was worthy of love and capable of so much which sent me out into this world with a confidence I needed. Watching her decline was like the end of an era. They really do not make them like they made Sharon Lorraine. She was fierce and fearless, confident, brave. She had more common sense in her pinky than I do in my whole body. She was good with money. She took care of my dad and me financially and made it so I NEVER knew when we struggled (and we did sometimes). She protected me and shielded me from so many bad things in the world. She valued education because she never had one herself. She was tough on me but she was also one of the most generous people I've ever known. She was careful with her family's resources but she gave to other people in their time of need and always gave to her church. She instilled in me the importance of spirituality and a connection with other humans as we navigate this planet. And when she died, a huge piece of me died with her. I felt lost inside, but I felt like I had to protect my dad. He was vulnerable and fragile. They were married 32 years. That's the entire time I've been alive right now. It always felt like a lifetime and I think he thought so, too. We had to navigate the life we were left with once her disease finally took her away. But she was a fighter. She fought for herself and for her family until her very last breath. There are so many lessons I have learned about life from watching those that I love die. I never thought I would be able to verbalize what I was feeling through all of these experiences and I don't think I am far-enough removed from my dad's death to really reflect on it at this point, but I do know this. Death can be scary. It can be devastating. It can rip your heart out and throw it to the ground, smash it into a million little pieces. It can break you apart and glue you back together. But you ALWAYS have a choice in this life. You can allow the horrible things to get into the bright places of your heart and turn out all the lights. Or you can try to be stronger, reflect, learn from what has happened to you. No one's path is ever all roses. We ALL have our difficult things. It is how we choose to react that defines us. I know that. And I needed to hear myself say that today.

Peace and Comfort

Sometimes it takes a while to recover when you bare your soul. It's strangely freeing and terrifying all at once. I have so much more to share and yet, I hold back. It's complicated really, letting your emotions flow. But tonight is different. Tonight my chest is heavy like there's an elephant on it. My heart aches for my niece and nephew whose father passed away yesterday unexpectedly. He was not much older than me. Everyone is still in shock. I want to say "I can't imagine" but I can, and I think that's almost worse. I know what an uphill climb grief can be, how it sneaks up on you at the most inconvenient of times. All of the sudden you're laughing when you should be crying, such an inappropriate and confusing expression of a pain that just won't go away. There are wounds left by those we love that never, ever heal. We adjust. We go on living. But we are not the same. I lie in bed tonight understanding the insurmountable hurdle that my beautiful, teenage niece and nephew will now face. Everyone deals with loss differently. Everyone has those triggers everywhere - a smell, a moment of déjàvu, a sound that reminds you of them. Our senses hold on to what's no longer here. They will surprise us when we least expect it. But I know from what has happened in my life that our resilience will surprise us, too. We all have inside us a spark that will fuel us through even the darkest moments where we feel we will never see a light again. And it's what we have to cling to because it's all we have. I will pray for you, my sweet little ones. I love you both more than words can say. I am here. You are loved. May God fill your beautiful hearts with peace and comfort. 

Bennett's Story

To tell the story I want to tell, I have to start at the very beginning. This takes me back to about this time four years ago. It was then that I received news that was to change my whole world forever.

I remember back when I first met my biological mother, Maria, when I was about 18 years old. From the very beginning of our relationship she has been the epitome of love, respect and grace. She never pushed herself on me and never wanted to burden me by being a part of my life. But there was something very important she needed to share about our family history. This was the first time I had ever heard about Duchenne Muscular Dystrophy (DMD). A little research had me absolutely terrified. This was the late ‘90s, early 2000s and the landscape of the disease was very desolate. I signed up for an email newsletter from an organization called the Parent Project Muscular Dystrophy but I never really read them. Occasionally I would peruse but it would make me too sad to really delve in. This was my first exposure. I never did get to meet my biological cousin, Jason, Maria’s nephew. He passed away at the age of 22 as a result of having DMD. I was so, so sad. He was the third person in Maria’s family to pass away from Duchenne. It hit close to home, too, because even though I had never met the people in my biological family who had DMD, I knew the face of muscular dystrophy well. My mother, Sharon – the most amazing, beautiful, strongest woman I’ve ever known – had muscular dystrophy. Her type was called Myotonic Muscular Dystrophy and was adult-onset. I watched her go through her life fighting so hard to maintain her independence and she battled bravely until she took her last breath. It was, without question, one of the most difficult things I have ever been asked to endure, watching her decline and eventual passing. So when Maria let me know that I could be a carrier of Duchenne, my 18-year old brain could not handle such information. So I filed it away in the back of my mind and knew that one day I would re-visit the information, when my life was in a different place.

Flash-forward to March 2011. I was around 4 months pregnant with my first child. As I’ve mentioned in a previous post, Bryan was well-aware of the fact that I could be a carrier of Duchenne and we made the decision together that we would love our baby no matter what, even if I was a carrier. Some people might think we are horrible people for making the decision to get pregnant anyway but we made the best decision we could make at the time. We didn’t know if I was a carrier. So, we decided to get a blood test to confirm. After what felt like an agonizing amount of weeks, we got the results. Yes, I was a carrier. I was heartbroken. I was so, so scared. We knew that it didn’t matter what happened because we were going to love our baby no matter what, but what if? There was a 50% chance that a girl would be a carrier and a 50% chance that a boy would have Duchenne. I prayed and prayed that our child would be spared of this condition if it were in God’s will. We waited for our anatomy/gender ultrasound which would be in a couple of weeks. When we went in for our appointment, the ultrasound tech put the wand on my stomach and immediately it was undeniable: we were having a BOY! We were so happy but immediately also terrified. This meant that our baby had a 50/50 chance of having muscular dystrophy. We tried to push this to the back of our minds because we were overjoyed to name our baby. We decided right there in the OB’s office: Bennett Avery. Bennett means “blessed”. It’s the perfect name for a perfect boy. My fear of muscular dystrophy was NOT because I felt there would be anything “wrong” with my baby. He was perfect. He was the most special boy and he was designed by God just for Bryan and me. But I was scared because I knew it would not be an easy path for him. I watched my mother face it as an adult and it was the most difficult thing I had ever experienced to that point. To think that my beautiful, sweet, innocent little boy might be facing the same fate – it was almost too much to bear.

So we spent the next few months going to high-risk OB appointments as well as our regular appointments. When we went for genetic counseling after we discovered Bennett was a boy, they noticed some fluid on his brain which they needed to monitor. This was difficult because our genetic counselor and high-risk OB were not my favorite. The GC was very insensitive and said some hurtful things once she got me cornered away from Bryan and his mom, who came with us to learn more about Duchenne. I was angry but I managed to keep my composure. But the doctor wasn’t a whole lot more likeable. We managed to push through since we hoped we were doing what was best for Bennett. By the end of the pregnancy, after weekly appointments (and getting to see him A LOT via ultrasound – definitely a plus) the hydrocephalus had resolved and his brain looked normal. He was born on a beautiful Friday morning, July 22, 2011. My heart exploded. He was the most amazing thing I had ever seen in my life. I had never loved anyone or anything the way I loved that boy from the instant I met him. He had my whole heart.

After a terrible experience with finding a pediatrician, we settled on one nearby and took him for his first visit. We explained that I am a carrier of DMD and that we would like to get him tested as soon as possible. We experienced a little bit of pushback and questions like “don’t you want to wait until he’s a bit older” which infuriated me. No, I did not want to wait. I knew exactly what test we needed and I wanted it. I thought that knowing sooner would be better because in my line of work, early intervention is key. I wanted to find out if he had it so our family could process it and then start being proactive for him as soon as possible. It was a battle. I finally had to call my OB and get him to basically strong-arm the office into ordering the test. In the meantime, the office did order a CK protein test which is one indicator that a child may have DMD. The test measures the amount of protein in the blood which is caused by ongoing muscle damage. A low number means normal protein spillage. An unusually high number is a good indication that there is a disease present. We waited for the results anxiously. This basically was going to tell us whether Bennett had DMD or not. If the CK results were high we would send for a confirmatory blood test. When the CK results came back, our doctor did not ask us to come in to the office. Instead she shared these results with me ON THE PHONE. Let that sink in for a minute. Life-altering medical results shared on the phone. I wanted to vomit on the spot. His CK levels were high. The levels weren’t normal. There was really no other explanation. He had a high probability of getting a positive blood test. More than likely he had Duchenne. I tried to keep it together on the phone. I called my friend and wailed an inhuman sob-cry that no one could possibly understand so she just listened and tried to say encouraging things. My heart ached. My stomach hurt. Bryan went for a drive and called his mom. He cried his eyes out. We were devastated. I wanted to close my eyes and disappear. I was the most scared I’d ever been in my life. A few days later we sent off for the blood test to confirm. I spent the next month of my life in anxious anticipation of the results, found a new pediatrician one town over (whom I LOVE), and read every piece of information available on the internet about Duchenne Muscular Dystrophy. Most of it made me feel the most soul-stirring despair. The future felt BLEAK. I thought about my biological cousins/uncle who passed away when they were 22 years old. I couldn’t imagine what a life that would be, what a struggle it would be. We got our blood test results and it confirmed that yes, he did have it. He is missing two links in the sequence (kind of like puzzle pieces) that have caused his body to stop reading the code to create dystrophin. Dystrophin is a protein that enables our muscles to repair themselves after activity. Without this protein, muscles die little by little, turning into fat and creating what’s known as fibrosis. Eventually boys with DMD must use a wheelchair for mobility. At some point, the lungs and heart are affected. Many develop scoliosis and lose the ability to even move their arms. Often they will develop illnesses like pneumonia that they are just not strong enough to fight off. I cried myself to sleep on many, many occasions and spent my nights up feeding/rocking my newborn, praying to God to help me get through this. I had to find a way to make things better for my baby and help him live the best life he could live. If that was all I could do, then I would do it with gusto and I would help my baby be happy for however many years I had him.

So 10 years after I first signed up for the newsletter, I re-visited the Parent Project Muscular Dystrophy website. There, I found glimmers of hope. I saw that there were a plethora of drugs in development to combat this fatal disease and that were changing the landscape of the prognosis. Bryan and I took Bennett to his first appointment at Riley Children’s Hospital in Indianapolis when he was just two months old. There, we were overwhelmed with amazing staff members. They were supportive, knowledgeable, and most of all, hopeful for the future. They gave us information about getting involved with clinical trials in the future. They shared information about early intervention services and how to be proactive for Bennett. We felt a million times better after we left. The genetic counselor gave me a renewed confidence in the field. She was so kind and warm and answered all of my questions (you know me, there were a LOT). We left that day with uplifted spirits and it was the first step forward in a positive direction.

And now here we are. It’s March 2015. My beautiful boy is 3.5 years old. He is still the most amazing person I’ve ever met. He is so funny, smart, silly, and sweet. He loves his Mama and Daddy and we love him with the fire of a thousand suns. There is new information every day from places like PPMD, Cure Duchenne, the MDA, and so many others about the developments that are being made in the field. I still have my moments when I am stricken to the bone with terror for my child’s future. I worry about how he will do with school, whether or not he will have lots of friends, how he will feel about being in a wheelchair one day, if there will be a cure or at least a treatment that will change his life…so many things. But something I don’t really worry about anymore is whether he will be happy. When I look at his handsome face, those beautiful blue eyes and that gorgeous smile, I know that God has answered at least one of my deepest prayers. Because Bennett has always been happy. And that makes me happy. And it doesn’t get any better than that.

Life is beautiful!

Today I downloaded an app for my phone that will help me keep up with my writing. I figure I spend so much of the day typing with my thumb anyway that why not? It's the way of the world these days. Tonight I hung out with Maria and we had an amazing conversation. It was one of those conversations where you cry, you laugh, and you walk away feeling cleansed. My soul needed that. I've been doing so much soul-cleansing lately. It's been long overdue. You get so used to the daily grind, the ho-hum everyday things that have to be done - work, feeding your family, spending time with the kiddo, cleaning, relaxing for 2.5 minutes. It seems that sometimes you (the real you) get lost in the madness. This is not to say that I don't love my teacher, mom, wife, cook, couch-potato me because I totally do. I just miss the social, music-loving, healthier, writer, thinker me. I think there's room for both and it's time to carve out a space in my life for all those aspects. I said to a friend recently that a happy [parent] makes for a much happier family and I believe that's true. I hope I'm on the right path to feeling a little better about life. I am not at all in any way complaining because I have SO many beautiful, amazing blessings that I thank God every single day are in my life. But I also am grateful for a family who understand my need to reconnect with some of the deepest things that make me feel alive. Discovering new artists. Journaling. Exercise. Texts with friends. Roadtrips. Good books. So much food for a tired soul. Life is beautiful. 

Ellipsis

So, this is not exactly part two. But it's something. It's been a long 3.5 years since I've written in The Green Reverie. It's not for lack of things to say but more that I have SO MANY things to say I just don't even know where to start. So many things have changed since my last post. My life has been kind of a rollercoaster since then - lots of ups and downs. But I still feel like I have a voice that I want to be heard, if for no other reason than to just get these thoughts off my chest. I think of things to write about a least five times a day but then I convince myself that no one wants to hear it. There is so much insecurity about baring your soul to the world. But it's like one of my favorite bloggers, Momastery (Glennon Melton), says all the time. You don't have to be good or say anything in particular. Sometimes you just have to pick up the pen. Or in this case, the laptop. The first step towards catharsis is just doing what feels healing, right? So there that is...