Hearts

Every year on this date I use this time to reflect on how it feels to live without a piece of my heart. This year I am particularly taken aback at the fact that it has been 17 years since I last heard my mother's voice. This is almost unimaginable to me. Next year, I will have been without her for as many years as I had her in my life. I let that sink in but it still doesn't feel real. Some years it feels like it's been forever and others it feels like it's been no time at all. This year? I can't quite describe it. The ache isn't there like it is some years. But there are lots of memories. In fact, I really like this feature on Facebook that shows what you've posted in previous years. It's always very interesting on significant dates, like birthdays and anniversaries and even death days. It leads me to pictures like this that make me smile and make me think.

Man, I was lucky. My mom thought I hung the moon. I mean, look at her face when she's hanging out with me. I could have been being the biggest brat ever that day and, let's face it, I probably was. And yet, look at that look of pure love and joy. I totally miss that about her. She loved me with the fire of a thousand suns even when I was being insufferable. I love it when her friends and our family tell me stories about her and her personality before she got sick. So much of my strongest memories are from my high school years when she was really struggling with the Muscular Dystrophy and going through the decline. I love to hear how good she was at softball and how she was a huge goof and a tomboy and that she and my dad threw awesome Halloween parties all the time. (Apparently, they were super fun when they were younger.) I see her joy in the pictures of her with me when I was little, too. They waited so long for a kid of their own that by the time I got here, she was completely enamored by me. (That could maybe explain partially why I was such a turkey when I was that age but...thankfully, I turned out okay. Mostly.) I try to keep her alive in Bennett's heart by telling funny stories about her. I like that occasionally he will come out with something randomly and attribute it to Grandma Sharon. For example, a while back I was talking to someone about signs from Heaven and they were saying that sometimes loved ones will leave coins to let you know they are thinking of you. For this person, their loved one leaves dimes around and every time she finds a dime in an unusual place she immediately thinks of the person she loves. I thought it was SO interesting when we had that conversation because even though my mom's been gone a long time, I never really felt any signals like that. Maybe the occasional playing of Amazing Grace randomly or a strong desire to pull out the bottle of Navy perfume from my secret hiding place and sniff it. But nothing really tangible usually. After that conversation, I started finding quarters. I will find them in the MOST ridiculous places now. I may drop an ink pen in my classroom and find a quarter under the laminator beside my desk. Or go to find a paperclip and find a quarter in the basket with the post-it notes. Or at home I'll be walking along and see a quarter in the middle of the floor where it's unlikely to have been dropped from a purse or pocket. Or I'll see one under the bathmat in the bathroom. It's super weird, but it always makes me smile. (And then I save the quarters. I have quite a collection.) So, now that Bennett knows this happens he feels like she speaks to him through pennies. He'll find a random penny somewhere and exclaim, "Oh, Grandma Sharon! You're so funny." It's pretty adorable. Other times he'll tease me when I'm being fussy or when I say something in a really country accent and be like, "Mommy, you sound like Grandma Sharon." I kind of love it. And I love that he has something of my mom to feel connected to. It's pretty cool. So even though this date is really hard every year, I'm glad that there are those years when I can take time to reflect on what my mother meant to me and how incredibly blessed I am to have had a mother like her. She was a tiger mom - she would fight for me until her last dying breath if she thought that I had been slighted. She was tough and strict and she drove me absolutely crazy with her overprotectiveness. She had ridiculous opinions that were so conservative when compared to my more liberal views and we did not see eye to eye on many issues. She was tough and firm but also gave the shirt off her back to those in need. She could be so sensitive sometimes and we would fight like cats and dogs. She was nosy as all get out, chasing fire trucks and ambulances around our small town in the summer when she was bored. She loved sweets and treats and we spent a lot of time hanging out around food. (I didn't mind.) She said the most hilarious things and would butcher even the most basic of Southern colloquialisms. She loved the people that I loved, particularly the ones that she knew would have my back when she was no longer around - and those friends loved her with a fierceness, too. Basically she was the best mom and friend anyone could ever want. I love her with all my heart and miss her with all my soul. I know that the missing piece of my heart will never ever be filled but I wouldn't want it to be. She was the perfect imperfect mom and I only hope I am half the woman that she was. 

Leap Day

I hesitated to share this because it is deeply personal by my husband encouraged me. He said that sharing is good and could potentially reach someone else who's going through a hard time. So that said, here's a piece I wrote earlier this week...

February 29, 2016

I have had a story to share for a long time, but the time just hasn’t been right. For some reason, that time is today. I’ve come to realize that this is just how I write. I will have something bottled inside and it bubbles up until the exact moment when I can’t keep it inside any longer. It doesn’t really matter if it’s convenient for it to be shared at that moment. All I know is that for whatever reason, it’s ready. Today is Leap Day 2016. There’s something mysterious and special about Leap Day. It almost feels otherworldly to know that this day didn’t happen last year and it won’t happen next year. I bet it would be really strange to have a birthday on this day. Speaking of birthdays, a very special thing happened in the life of one of my good friend yesterday. She gave birth to a beautiful baby girl. But not just any baby girl. It’s a baby that she is calling her “belly buddy” because my friend was a gestational carrier. Formerly known as a surrogate, my friend went through a long and arduous process so that another family could have the precious gift of life. She spent nine long months, and countless before including a failed procedure, donating her body to give life and joy to an amazing family. I don’t know the whole story but I do know that it had to do with a medical condition that rendered the mother unable to carry another child. The family already has one little girl and wanted to give her a sibling. So my friend volunteered. She volunteered to give her time, her love, her friendship, and her body in order to help others feel more complete. I just can’t wrap my head and heart around the magnanimity of this gesture. Every time I think about it it makes me want to cry. I am so proud to know such a wonderful person who would be so selfless and so giving. She was finished building her own family so she helped another. It’s truly something special. 

I think the whole subject means something more to me, too, because of what my family has been through in the last couple of years. In a few days it will be the anniversary of something that was very difficult to experience but has been even more difficult for me to share with others. But my heart feels that it is time for sharing so that it can be time for healing.

It all started in May of 2014. Bryan and I had been talking for some time about trying for another baby but with me being a carrier of a genetic condition (Duchenne MD) it would be risky to do so naturally. Our son is perfect just the way he is but having DMD will not be easy for him as he grows older. It will be challenging and sometimes painful. There will be a lot of obstacles he will have to navigate. It’s scary to think that we could place that responsibility on another child we would have. Any boy we would have would have a 50% chance of having DMD and any girl would have a 50% chance of being a carrier. We have considered adoption but it is very expensive and riddled with hoops to jump through and the fear of interruptions. I didn’t know if my heart could handle the loss of a baby after placement, so we decided to try a different route. 

I had spent a lot of time looking into the idea of In-Vitro Fertilization (IVF) with preimplantation genetic diagnosis (PGD). This is a procedure by which an embryo is diagnosed before it would be implanted into a woman’s uterus. This would determine if the embryo was a carrier or affected by a genetic condition before implantation. This procedure has been considered by some people to be ethically debatable so it took a lot of hours of prayer and many, many weeks and months of weighing the options to make the decision to move forward. But we finally did. We met with our doctor to discuss the process and give some background information. It turned out that the process would take a lot longer than I even realized - months to collect genetic information, months to process the information, and still more months to complete the procedure. But by the end of it all, there was a good chance that we would have a baby without Duchenne. I wanted this so badly. Even now, saying it out loud feels so wrong to me because Bennett is 100% perfect, even with DMD. He is exactly the way he was supposed to be and I love him more than anything in the entire universe. But I worry about him. I worry that something will happen to Bryan and me and there will be no one to help take care of him. I worry that he will be lonely growing up as an only child. I worry that he will need an extra family member to have his back one day when he is older and he won’t have anyone to rely on. But then that’s not the only reason to have another child. I have always thought I would have two children. My heart is so full of love for Bennett and everyone I know tells me that it only grows exponentially when you have another child. I believe this with all of my heart. I love spending time with my baby boy. We have so much fun together. I love teaching him and learning together, laughing together. I look at other people’s families and I love it when the siblings fight. I love it when they argue. I love seeing the pictures of when they have sleepovers and play with each other’s toys, play dress up, go on trips together. I never grew up with my siblings close by and didn’t even know them until I was almost an adult. I feel like there are a lot of things I missed out on by not having them around. I desperately wanted a sibling when I was growing up. I BEGGED my mom for a little brother or sister all the time. And Bennett is just like me. He has even named his future sibling. (FYI: she’s a girl and her name is Ariel.) 

So we started the process. We spent the summer going to appointments and getting things in order to start. They had to collect genetic information from me, Bryan and Bennett in order to develop the “probe” that would be used to compare to the embryos. Of course the dystrophin gene is a very long gene so it was a complicated process that took a while. They had to locate the information needed to help them diagnose the embryos. After what felt like an eternity we were finally ready to move forward in October. I started taking medication to regulate things and then began giving myself daily shots in November. We were hopeful. The doctor felt that we had a good chance of getting a lot of eggs due to my being young and having no fertility problems. So this was good. But it was stressful, mostly because it was financially very expensive and our insurance didn’t cover the procedure at all. (This is something I don’t understand because why wouldn’t they want to prevent a costly condition from occurring. But whatever.) So this was all out of pocket. I struggled a lot with the cost. It was so much money to spend and I felt very guilty that we weren’t saving that money for Bennett’s future. But on the other hand, I knew that if we didn’t at least try I would probably regret it forever. There were a lot of emotions involved with this process every step of the way: guilt, anxiety, fear, worry, joy, exasperation, pain. Even though I felt like a pincushion with a thousand little pokes in my belly every night, those weren’t so bad. I took off a lot of half days for blood work and to prepare to “harvest” the eggs.The procedure to actually obtain the eggs was a bit painful but not the worst thing ever. I had to rest a lot that day and then I was back to normal. 

When the procedure was completed, we got something like 13 eggs. The doctor was hoping for more but said that it was still a good number. They would take them to the lab and do their magic and then we would see how many embryos developed. And then there was the wait. We had to send the biopsy off to the lab for them to do the PGD and diagnose them. But how many would we have by the time the optimal day arrived? 

We ended up with four. The biopsies were sent and then we waited. And waited. We were hoping to know the results before Christmas but there was some confusion at the lab. I can’t remember now but I think we found out the Friday after the holiday. There was one embryo that had Duchenne. The other three did not have Duchenne. There was one unaffected boy and two non-carrier girls. I was over the moon. It was surreal. There was really a possibility that we could have another baby who would not have Duchenne with a high level of certainty. We were cautiously optimistic. My friends were all excited and celebrating the good news. But we were not out of the woods yet. 

A little later we got a call from the doctor’s office. The embryos had been tested for the Duchenne gene but the lab had not tested their chromosomes. This meant that there could still be problems with the integrity of the embryos. So they had to be sent off again and there would be more waiting. By this point it was January. When we got the results, they were not positive. Two of the embryos had chromosomal abnormalities. This meant that if they were to be implanted, they would result in miscarriage. So we were left with only one viable embryo for transfer. This was it. One little female non-carrier embryo was all that was left. After all the stress and uncertainty, there was one. I had to be out of town in Iowa because my grandmother was ill and later passed away, so we were not able to do the transfer in February. The timing was not right for the medication to be taken. So we started when I got back. And let me tell you. Giving yourself shots in the hip with a needle that is, no joke, three inches long and HUGE in thickness, not to mention that you’re injecting progesterone in OIL into your muscle...oh my goodness. I wouldn’t wish that pain on my worst enemy. My hips were so sore from alternating the shots daily and I began to dread those shots every day. I could barely sit down. The heating pad didn’t help. But I knew in my heart it would all be worth it to have another sweet baby to love and to be able to give Bennett a sister. In the days leading up to the transfer I was so apprehensive but still cautiously optimistic. I knew we had one shot - just one embryo - and it was a “now or never” type of thing. There would be no possible way to afford another round of IVF with PGD. 

So finally it was “go time”. We planned the transfer, I drank a million ounces of water like directed, and we showed up to the doctor’s office for the procedure. Bryan and I waited in the lobby and I had to use the bathroom so badly. I prayed that they would hurry up and call me back so we could get the show on the road. The ultrasound tech poked her head out and called someone else to go back. But when we locked eyes, I knew something was up. I could feel it. A little bit later the doctor came to get us and took us straight to his office. By this point my heart was in my throat and I knew it before he even said it. I looked right at him and said, “It didn’t thaw.” And his face said everything. He responded, “No. It didn’t.” And then a thousand emotions exploded all around me. I was trying to be strong and not cry, but all I wanted to do was be pissed off at the world. I stormed out of the office with a quick, “Well, I’m going to the restroom then.” and went into the bathroom alone. I can’t remember if I started crying then or if I waited until a bit later. I finished and returned to the office. The doctor was kind and compassionate about it but honestly at that point I didn’t care. I was so, so angry with the universe. I was angry that I had wasted my time, gotten my hopes up, and spent all of my family’s money. I felt so sad and so mad and so, so stupid. I just felt like I had been taken, not by the doctor but by the whole world. I had naively and idiotically believed that something might go how I wanted it to. I can’t even remember what the doctor said. I think our conversation went something like, “Well, what’s there to say? Thank you for your help. I appreciate everything you did for us.” And then I left in a flurry, doors whooshing by as I left his office, then out of the patient door, then out of the clinic door, down the elevator, out the front door of the hospital, to the car. I was numb. I was so hurt. My heart was aching like it hadn’t ached in a long time, probably since Bennett’s diagnosis. I had failed to give him the sibling he wanted. I had failed to give my husband the second child he wanted. And it was all my stupid, dumb, Duchenne gene’s fault. 

I know now looking back that that thought process is highly flawed and I was very emotional because of the loss of the expectation and the hope. I do understand that. And I understand that I am SO LUCKY AND BLESSED AND GRATEFUL to even have a child. I know there are so many people who don’t even have that. I know because my parents were those people for 13 years before they adopted me. I know because I have seen friends who have been through procedure after procedure, failed adoption matches, adoption interruptions, the death of a child. There have been so many unimaginable things that the people I care about have experienced all around me. And I questioned myself because why can’t I just be happy with the beautiful family I have? That’s a question that today, almost one year later, I am still asking myself because my heart still desires another child. I still have the ache when I see a new baby or when others are expecting or adopting. But I also feel this HUGE amount of gratitude when I see my friends and acquaintances whose dreams are coming true. One of my best friends had a beautiful baby girl back in August. One friend is pregnant after years of difficulty conceiving and is adopting her little boy from foster care in a few weeks. A coworker and friend just had a gorgeous baby boy last week. My friend I mentioned before just completed her surrogacy and has given this family a new lease on life. Another girl I know just had a baby as a result of IVF and many years of struggling. Someone else I know is in the process of adopting baby number two. 

I know babies are always a blessing. No matter how they come to us they represent so much hope and life and love and possibility.  And I think at this point in my life I am starting to reach a place where I will be okay if it doesn’t happen for me. I don’t think Bryan and I will ever have another baby naturally because of the genetic risks. I don’t think we will ever try IVF again because it is extremely expensive and a difficult process. But I truly feel in my heart of hearts like I lost a baby in this process and my heart is still healing. I know it’s not the same as many people experience with miscarriage, but the expectation and the hope and the joy that I felt at the possibility was lost, and that was very hard. 

Who knows what will happen for us in the future. I know that Bennett is happy and loved either way. And even if he never gets his little sister Ariel, I think he will have a good life. Adoption isn’t off the table either, but the costs are a huge factor in our decision. Right now we are at an impasse. It’s hard to know what is the right decision and at this point, emotionally, I am not sure where to go from here. The desire is in my heart, but sometimes I feel having another child just may not be in the cards for me. I am learning to be okay with it. I know that life does not always work out the way you think it will and that has been abundantly clear for me. Not to sound pessimistic because I am ever the optimist, with a touch of realism. 

I don’t really know how to tie this piece up and I’m not even sure I am going to share as it is very personal. Even though I am an open book, it is still hard to share the hardest things with the world. I like to if there’s a possibility that my words and feelings could help even one person get through something difficult in their lives. But who knows. 

As always, though, I am in awe of the people around me and how I am continually surrounded by people who amaze me. Through it all - all the heartache and challenges life throws - I am grateful for my people who just get me, the ones who send flowers and bring chocolate, who send text messages and cards and who curl up with me and let me cry it out. So on this Leap Day, remember all those mysterious and special and otherworldly people in your life. They are what truly matters, and without them I know I personally would not survive. 

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.