Category: Finding Hope

Mother’s Day, a day to celebrate the mothers we love and cherish, is joyous for many, but difficult for others. That is the raw, honest truth. It is a day to shower our mothers with flowers, gifts, and time to herself. It is a much deserved holiday! But what about the mothers who lost their children? What about the women who desperately want a baby? What about the children who have lost their mothers? For them, it is a really conflicting day.

I remember my first Mother’s Day after Graham passed. I could barely get out of bed that day. When I opened up Instagram, I immediately regretted it as I scrolled through the images of friends with their children or families celebrating together, something I could not do but desperately wanted to. I was devastated and overwhelmed by grief. Holidays are difficult enough, but when it is a day to celebrate a specific group and you do not fit into that group, it is unbearable. And I did not know where I belonged. I was a mother, but my child was no longer with me. In my heart I knew I was a mom, but the reality of our situation made it feel very different. I remember all the messages and calls to me that day. The kindness that was displayed towards me helped. It really did. There was one text message that really stood out. A friend shared this scripture with me, “He heals the brokenhearted and binds up their wounds” (Psalm 147:3). It was a simple text. In just one sentence, she showed me that she knew I was hurting, but God will take care of me. Nothing else will make this pain go away. I must lean on Him for strength, for understanding, and most importantly, for hope.   

Even though my head knew I will always be Graham’s mother and that Mother’s Day was a day for me, my heart made it difficult to process. That’s the funny thing about grief. Logic and emotion don’t always get along. And often, feelings outweigh rationality. But when I stop and pause, I look for the Lord and His spirit lifts me up. To ease my pain, I must find the hope of Him. And when I do, the sadness isn’t as dark. There is a light that makes my heart feel less broken.

Mother’s Day will always be a little bittersweet for me. I am so grateful for my husband and children who always make me feel special. The boys’ school taught them a song called “I Love My Mommy” and they have not stopped singing it to me for Mother’s Day. It is the cutest thing ever and I know I am very lucky. I do appreciate those aspects of this holiday. And I love celebrating all the other moms in my life! Whether it’s my own mom, or my mother-in-law, or my friends who are now moms. They all deserve to be recognized for all the things they do every day. But it’s still a day where I can’t help but feel for all the other individuals out there, the ones like me who have a child in heaven, or the women who are still waiting to become a mother, or the ones who have lost a mother. To those individuals, I want you to know you are seen, you are loved, and you are never forgotten.

“This is not what I expected.” Have you ever said this about your life? I know I’m guilty of dreaming up my future with a list of hopes and wants for me and my family. As I get older, I often find myself in a season that looks nothing like I imagined. Anyone else relate? And when it doesn’t go your way, have you ever asked God, “Why?” Or, have you ever asked Him to “hurry up and show me your plan for me”?

I know I struggle with this. I hate to admit it, but I have said those words in prayer many times. I have to remind myself it is God’s plan, not mine. It’s His timing, not mine. There are days when it is a tug of war match in my prayers and I have to force myself to push aside the version I have started to dream up. And it’s hard! Even though I know God’s plan will be better than anything I could imagine, it still doesn’t make my earthly desire to control things, or envision things, go away. I am constantly searching for help on this issue.

If you look in the Bible, David is a great example of this. David was to become the King of Israel; he was a hero for conquering Goliath, he led many battles; later he became the head of military operations and married the king’s daughter. He had it all! Then, because of a jealous king, David spent the next ten years running from Saul, stuck in a cave with a motley crew of misfits. I think we can all agree that this is probably not how David pictured his journey to become the next King of Israel.

In difficult times like this, we might be tempted to believe that God has abandoned us. But that couldn’t be further from the truth. It is in these challenging times that we must put ALL of our faith in God. We cannot quit on Him and we cannot question Him. Instead, we must continue to lean in and follow Him. We must wait and trust in His plan.

As the story of David shows, God’s destiny for our lives does not change because of our circumstances. Eventually David became the king of Israel, it just wasn’t the path he expected. But through his new path, and the challenges he faced, David became an even better king. He was more compassionate and tolerant. He was better because of his journey. As you can see, there is no greater gift than seeing God’s destiny for us rise above any vision we had.

As you tackle your next challenge, or as you wait for the next chapter to unfold, stop daydreaming about what you want it to look like. Stop trying to map out your destiny. Instead, focus on God and how He has a perfect plan for you. Wait patiently for it, and it will eventually unfold. And as you wait, remember it is going to be wonderful because it was always His plan for you.

It’s been awhile since my last post. I could chalk it up to busyness, work, spending time with my family, but none of that is true. I truly enjoy writing these posts, but lately I have struggled with the words. And if I am completely honest, I’ve also avoided a post because I’m just plain tired.

You might be asking yourself, “She’s tired? Aren’t we all tired?” And I agree with you 100%! Parenthood, spending quality time with those you love, working on your career or passions, and so many other activities consume our everyday lives. We are all stretched so thin, and I get it. But what I’m referring to is a little different. And if you’ve ever experienced loss, I think you might understand what I’m referring to. Grief is exhausting. So now what? I’ve admitted the truth and recognize this, but what can I do? I ask myself these questions all the time.

Jada Pryor wrote, “When we face feelings of emptiness, it is usually because our hearts have grown heavy. When we feel lost, it is usually because we have allowed that heaviness to hold us back from seeking Jesus to lift it.” And she is so right! Grief is overwhelming. It can be debilitating and we need Jesus to help us rise above it. Even though I know this to be true with all my heart, it’s not easy. Our God is good, but our lives on Earth are full of sin, loss, and heartache. And that is why it is difficult to quickly cast all our troubles aside and let God in.

For me, it takes constant repetition and reminders of God’s promises to heal the brokenhearted. Isaiah 40:31 states, “But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” And I do hope in Him. With all my heart, I hope! But when I struggle, I  doubt myself. I doubt my faith, which I know sounds crazy, but I do. And I’m sure I’m not alone. I encourage us all to work on it. We must forgive ourselves when we struggle or doubt. I must give myself grace when my grief is overwhelming. I must recognize that I am still healing and it’s ok to be tired.

And that’s where I am. It’s been 2 ½ years since Graham gained his angel wings, and I still struggle with this loss. He would be almost 4, and there isn’t a day that passes where I don’t wonder, what would he be doing? And that’s something people don’t always discuss. It’s something I’m afraid to bring up. But when I avoid it, I still carry these feelings. And by not sharing my grief, I continue to be weighed down by it. It’s tiring to juggle life while you’re still mourning the past. I think it’s easy to look at the time that’s passed and think, “It’s been a few years, there’s so many new and wonderful things happening, they must be ok.” When in reality, no matter how much time has passed, the emptiness from losing your loved one does not disappear. It doesn’t even get smaller; it just becomes a part of you and your life, but it does not fade. And lately, this makes me sad, and who wants to read something like this?

It wasn’t until recently that I was once again reminded that through our suffering, God is using us. I have a voice to help those dealing with loss and grief right now. And even though I am tired, I can still encourage hope and help others through our loss. I can shout to those who are in the thick of grief that you are not alone! It is overwhelming and isolating to lose someone you love, but you are loved by so many, including our Heavenly Father.

I can also speak to those who are friends with someone who experienced a loss. I can remind them to check in on your friend. Something as simple as “I know it’s been awhile since your loved one past. How are you doing?” Or it is incredibly powerful to simply say, “I know there are no words that will erase your pain, but I want you to know I remember and I am here for you.” Your words are powerful. I am so grateful for everyone who asks me about Graham, or remembers how old he would be today, or simply remembers he lived. I am thankful for messages where people acknowledge even though they don’t know what to say, they see me. They see the new joys in my life, but they still remember our Graham. And this rejuvenates me. This gives me the energy to share our story, and most importantly, it reminds me that I am not alone. This is God comforting us in our troubles so that we can comfort others! These are His promises being lived out and it’s amazing to watch it unfold.

Thank you for reading, but more importantly, thank you for supporting me as I continue to walk this journey of understanding life after loss.

Over the past few months I have been able to connect with other parents whose children also suffer from mitochondrial disorders or have passed away like Graham. Our stories are often quite similar – healthy, happy baby and then out of no where, child begins to seize or developmental regressions occur, doctors then struggle to diagnose, and when a diagnosis is finally determined, the outlook is grim. Despite these awful circumstances that affected our babies, we cling to hope and are dedicated to raising awareness and fighting for our children.

Personally, it is helpful to connect with other parents who can comprehend what it is like to spend weeks in hospitals working with doctors to determine a diagnosis for their child’s condition. These parents know what it is like to watch your previously healthy baby no longer be able to sit, or even eat on his own. These parents know what it is like to fight for their child when doctors tell you there is no hope. It is a club that I hope you never join, but if you find yourself in a similar situation, know you are not alone.

I can’t help but feel God’s impact on forming this community for me. When I toyed with the idea of creating a blog with the intention of connecting with other families who wanted to see firsthand what it was like to lose a child, I was torn over whether or not I should actually do it. There were many questions and reasons why I shouldn’t do this, such as, do I have the time for this? I am a history teacher, not a writer. There are so many other bloggers out there, what makes my voice any different? The list went on and on, but I decided to do it for Graham. God pushed me to step out of my comfort zone to create a space where I can keep his memory alive. And through this, I actually connected with other moms whose children also suffer from Alpers! I also decided to make my Instagram account public to help with promoting the blog, and through that outlet, I also met other mito moms. I even had the chance to run into one of those moms while waiting in line at Michael’s the other day. After we met, I started to think of all the things that had to align for us to meet and it just blew me away. For example, we met on a Wednesday, during the work day. The only reason why I was able to go to Michael’s during the work day was because I wasn’t working. I wasn’t working because Carter was “sick.” I use quotes, because he really wasn’t sick, but he was sent home from school for a mild fever day before. I took him to the doctor to make sure he was okay, and he was.  The doctor believed there was an error in how the school took his temperature, but I decided to err on the side of caution and keep him home. By that afternoon it was clear, he was fine. He was laughing and playing and we enjoyed the extra time together. Since he wasn’t sick, I decided we should run a quick errand to return an item to Michael’s and avoid the weekend traffic. When we got there, the line was pretty long, and as we were waiting, the woman in front of me asked about Carter. As we talked about his age, his chubby cheeks, her grandbabies, what it was like meeting Santa, etc. the woman in front of her turns to me and asks me my name. Long story short, she’s another mito mom who found me on Instagram. What are the odds? I can’t help but feel God’s hand in that exchange. And He keeps doing it. He keeps connecting me with other mito families. Why? I think it’s because He knows we need each other. He knows what is in our hearts before we even realize it. He knows what will feed our soul and keep us healthy as we overcome these tragedies. I know this, because this is what I need the most.

I love all my parent friends. Anyone who is a parent knows what it is like to care and love a child with all your heart. You understand the happiness, the stress, the anxiety, the excitement, the worry, and the joy. It is easy to find a community of other parents who truly get it. And as parents, we always encourage each other and build each other up, which I appreciate daily. But as a parent who has lost a child, or to be a parent of a child who is living with any type of disease or sickness, we stand out a little. Each of us has our own story, yet we relate to one another. Our journey has been messy and complicated, which is why need each other. We get it, when sometimes it feels like no one else does.

As we kick off the holiday season, I am conflicted with various emotions. I am excited to gather with friends and family and I am so eager to create new traditions with Carter. But I also dread another holiday without Graham. I think it is especially difficult for us, because this time of year not only reminds us of what we lost, but it is also a reminder of when things drastically changed in our lives.

Graham entered this world very early on November 17, which meant his first Thanksgiving and Christmas were spent in Northside’s NICU. The following year, as much as we hoped to celebrate a holiday at home, Graham was hospitalized on November 22, which meant we spent another Thanksgiving and Christmas in a hospital. When I look at this month on a calendar, I am flooded with memories of uncomfortable hospital chairs, monitors beeping, and worry. I am overwhelmed with sadness as I think back on those days.

And I know we are not alone. I am confident if you asked another person who experienced a loss, they too have a time of year, a month, or even a day, they dread. A moment when their entire world turned upside down. Ours just happens to be during the season we often describe as the most wonderful time of the year. And even though our hearts still ache as we remember those days, I am noticing a little excitement as we enter the holiday season and it is because of Carter.

Carter continues to bring so much light and hope into our lives. I am thankful for him and the chance to make new memories with him at home. But I want you to understand this – anyone who loses a child or a loved one, that hole from the loss never closes. For that reason, when you enter our home during the holidays, you will notice a holiday craft the NICU nurses made with his hand print; there is a stocking on our mantle for Graham, and within our holiday photos displayed, there is a photo of Santa visiting with Graham in his hospital bed. Even though our memories are in hospital rooms and very different from the typical family traditions, they are still the memories we have, and for that, we are still lucky.

Thanksgiving 2015 at Northside NICU

Thanksgiving 2015 at Northside NICU

But I do cherish the opportunity to take family pictures not in a hospital, and I look forward to making cookies with Carter, or having Carter cry when he meets Santa, and I am especially excited to wake up in our home on Christmas, with our little family under one roof making new memories together. Although our life looks very different from what we imagined, it is our story. But more importantly, it is God’s plan for us. He chose us to be Graham and Carter’s parents. He picked us to not only demonstrate God’s love for us, but to also show His goodness despite tragedy. He is using us to make a difference.

In the spirit of the holidays this year, we ask for your help. Help us honor Graham and fight for other children like him who are affected by rare diseases. By rallying together and fundraising for prevention and ultimately a cure, we can make a difference. Share our story. Tell others about God’s grace and goodness. Or, if you’d rather, support our cause. Donate to Graham’s fundraiser page, or better yet, give to our event. For more information, check out “Our Mission” page and find out how you can help us with our goal.

Over the last few weeks, we gathered with family and friends and celebrated the holiday season. We reflected on the past year – the good and of course, the bad – and we began to think of all the possibilities in 2018. I recently revisited my CaringBridge post from January 1, 2017 and it still resonates with me:

“It’s easy to create a lists of goals or prayer requests we hope God will listen to, but once again we are humbled at the reality it’s not up to us. We will continue to serve our Father & do we what we can to carry out His plans for us this year. God promises us He is with us always. He is with us when we go through deep waters, when we go through rivers of difficulty, & when we walk through the fires of oppression. He tells us, “For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland,” Isaiah 43:19. Today marks the beginning of a new year, & we hope a new chapter for Graham. We will work beside God to see what He unfolds for us.”

Obviously, the chapter we envisioned for Graham last year shifted, but I am proud of how his memory still continues to impact many friends, family, and even strangers. Even though 2017 was not as good to us as we originally hoped, it still included many memories that we will always cherish. And one thing that is true from that post, God has been with us every step of the way.

Like many, Brandon and I discussed our resolutions for the year. We wish to grow in our faith and want it to become a stronger foundation for our family. We want to live a healthier life, one where we eat well and exercise more. I have been busy pinning recipes and despite the freezing temps, Brandon and Franco have been on many runs around the neighborhood. We also discussed one more resolution that I am probably most excited about, but I also know it will be the hardest – maintaining a positive outlook. Brandon and I want to find joy in every day. We want to thank God for the blessings in our lives, instead of focusing on losses or the unknown. As much as I try and stay positive, sometimes fear of more pain, fear of another loss, and fear of the unknown creeps in. I have especially felt it recently and because of that, I want to pray more and praise Him more. We have so many high hopes for the year, but we also know that resolutions are simply declarations. As much as we wish for these resolutions to happen, we know it is up to us to do something about it. We can’t just simply hope or talk about these lofty ideals, we must act on it. We know it won’t be easy, but we believe by encouraging each other, leaning on God, and finding strength in the scripture, we can do it.

As we begin to settle in 2018, we look forward to what new and exciting plans God has in store for us. We hope those plans include Georgia winning the national championship on Monday!! Go Dawgs!! But in all seriousness, we are ready to take on 2018. With God leading the way, we know this will be the best year yet.

Graham’s birthday is approaching and I cannot help but wonder, what would he be doing right now? He would be almost two, and we wouldn’t be adjusting his age anymore. Two is huge milestone in the preemie world and this birthday would be so special because of that. As a two year-old, he would be acting like a toddler. He would have more emotions, tantrums, and joys than before. He would be walking, running, talking – things we never witnessed. Brandon and I often talk about what he would look like? I wonder, would his hair be lighter or darker than before? Would it be long or curly? Would he like Thomas the Train and Paw Patrol like other boys his age? I wonder what type of eater he would have been – would he love blueberries, chicken nuggets, and juice? I also wonder what memories we would have made this year. Would he have attended his first Georgia game with Pop? Would he have ran his first 5K this past weekend, or would it have been his 2^nd or 3^rd? Would we picking out outfits to take family photos for our Christmas cards? There are countless things we wonder about, and unfortunately, we’ll never know.

What we do know, is what we remember. And we remember his love for Snuggle Puppy, his parents, Mimi, Pop, and Gigi – he always smiled, he rarely cried, and was a brave boy. When we look back at pictures, it’s now easier than ever to see he was sick. His disease was a silent one, but there were clues. We notice how weak he was because he wasn’t able to sit well or how tired he must have been because of how often he napped – Graham loved his sleep, which maybe that’s normal for some, but I think it was another clue that his little body wasn’t making enough energy so he needed that rest. When we remember and recall those memories, and we talk about how much we miss him, we also recognize that he’s finally better. That’s something we never wonder about. Now, he’s healthy, he’s strong, and his running around – something he wouldn’t have been able to do here. So even if he isn’t with us, we know he’s more alive than ever. We know he’s in a much better place.

Franchesca Cox wrote, “When you lose a child you are haunted by a lifetime of wonder.” The truth in her quote resonates with me. Brandon and I will always wonder about the possibilities in Graham’s life. We will mourn on the memories taken from us, but as a parent we cannot be selfish and think only of our selves. Isn’t that the first rule in parenting – you place your child’s needs before your own? So that’s our philosophy – as much as we miss Graham, we know his life with a genetic disease like the one he suffered from, would not be a life he deserved. Of course we wish he never had this disease in the first place, but that isn’t what God had in store for us, which we have accepted. And because of our faith, we are thankful that God’s love for Graham is why Graham’s running around in heaven playing with so many friends that we know are up there with him.

We are also grateful that we will not spend a life time wondering what happened to Graham and why. We are blessed to not only have a diagnosis, but we are also able to learn more about this disease and prevent spreading it to Graham’s future siblings. I think that is the greatest gift we can take from his life – learning about the genetic disease Brandon and I carry and how we can prevent it. That’s something we will never have to wonder about, something that makes us lucky.

As we get closer to Graham’s birthday there are many things we wonder about, and I’m sure these are things we will always wonder. When we wonder about what could have been, I turn to the Romans 8:24, “For in hope we have been saved, but in hope that is seen is not hope; for who hopes for what he already sees?” Brandon and I choose to trust and wait for what is still unseen. God is with us and there are so many possibilities left to be revealed for our family.

Summer was a busy season in the Collins household.  Between organizing Mimosas for Mito, moving into a new home, and the start to a new school year – our plates were full. I took some time off from writing and focused on to-do lists and chores, but as things settle down I want to keep sharing what weighs on the heart of a mother who lost a child.

Mimosas for Mito was a huge success! I posted on FB and Instagram the grand total which am I still blown away by. In case you missed it, we raised over $10,000 for the UMDF, which is just incredible. Since the event, I coordinated with the organization to create a family research fund in Graham’s name. For every $10,000 we raise, we will now have the choice to decide where the donations are allocated. We plan to have neurologists guide us, along with the UMDF advocates, to help us select research grants that will have the greatest impact in helping other children like Graham who are diagnosed with disorders caused by a mutation in POLG gene like Alpers’ disease. We are very excited about this opportunity and hope it will raise more awareness and understanding about these diseases.

Even though it was a difficult decision to leave our first home, moving into a new house has also been an incredible blessing. Our home on Sanders was the first house we lived in as a married couple. It was the first home for Franco and it was Graham’s only earthly home. The physical house was home to many memories – both beautiful and heartbreaking, which is why we decided it would be best to have a fresh start somewhere else. Isaiah 54:10 states, “For the mountains may depart and the hills be removed, but my steadfast love shall not depart from you, and my covenant of peace shall not be removed,’ says the Lord, who has compassion on you.” The change in scenery was our choice, but no matter where we call home, God’s love for us and His promises would follow us. As we packed up and left, we knew the memories that we cherished most, would accompany us anywhere.

Our new neighborhood is great! We have met so many neighbors and have already made so many new friends. Creating a new home for our family has been a wonderful challenge that has kept us quite busy. Between painting, a couple remodeling projects, and decorating, it seems like every weekend there was a new to-do list or another Target run. Between the chores, we did find time to relax by the pool or socialize with new friends during Food Truck Fridays.

One aspect of moving that I did not anticipate was how difficult it would be to meet people who didn’t know our story. In the past, making new friends has been fun and exciting, but when you are meeting someone new after a loss like ours, it is completely different. It’s something I wasn’t prepared for. I remember the first time our neighbors asked if we had any children. I was literally speechless from the many emotions I felt, so I looked at Brandon awkwardly and waited for his response. When he said no, it felt like someone punched me in the stomach. I know it was the right response since this was our first encounter with a family who will live next to for years, but it was difficult to hear. It was our first impression, and we wanted to make sure we made the “right” impression and sharing something so heavy when you’re making small talk just didn’t seem right. It sounds silly, but it mattered to us. I replayed the scenario multiple times in my head afterwards. We were casually standing in our yards, separated by a fence, sun beating down on us. It was clearly a brief hello in the midst of unloading boxes and it wasn’t the right time to share our story, but it also didn’t feel right to ignore it either. I doubt many people analyze an encounter like this the way I did, but it mattered to me. It still does. I still struggle with finding the right moment, the right way to unload such a burden, because that’s what it feels like. When you tell someone you lost a child, it immediately changes the conversation and tone of the encounter. You also have to be mentally prepared to not only share your loss, but you also have to share or possibly “fake” how well you are doing in that moment to protect this person from feeling like they have upset you. I know the person never expects that, but for me and Brandon, we don’t want to feel like we are saddening anyone by sharing our story. As you can see, it’s not easy to casually drop yes we are parents, but our son is in Heaven, within the first moments of meeting someone – at least it isn’t easy for us.

After about 2 weeks of casual small talk, Brandon and I were really ready to share our story, but it still just felt awkward to blurt out what we experienced with Graham. Graham and his memory are too important for a simple casual mention – he deserves so much more than that! On the morning of Mimosas for Mito, right as Brandon was unloading boxes of Krispy Kreme donuts our neighbor passed by. He made some joke about how many donuts  he could eat and then asked Brandon what they were for. It was the perfect opportunity to share about our event, why we organized it, and of course about our sweet Graham. Brandon ran upstairs after the conversation to tell me all about it. He was clearly excited to tell our new friends about Graham, and so was I. It was like a huge burden was lifted now that our “secret” was finally out in the open. Maybe we should have said something the first day, or maybe it was better to wait for this perfect moment, where we can truly help a friend understand our story, I’ll never be sure.

I don’t think I’ll ever know the best way to answer the question, “Do you have any children?” and will probably over analyze every conversation I have with a new person. And I know this will be an ongoing struggle. When we are expecting another child, I know people will ask, “Is this your first pregnancy?” or “Does he/she have any siblings?” These are totally normal questions to most – but to me, these are gut-wrenching questions. I know my honest answer can completely change the course of the conversation, but I never want to deny Graham’s place in my life to protect someone else’s feelings. And for that reason, it is so much easier to surround ourselves by people who know us. People who know Graham and our story, because these questions are tough. I hate to admit it, but I’ve caught myself doing this a lot lately. When I’m at a party or an event, I tend to congregate to the people who know me, know my story, so I won’t be at risk of someone new asking me if I have a child, or when do we plan to have children, or even worse, a pity remark like don’t worry, you’ll have a child one day. It’s questions like this that make me want to stay home or when I’m out, I never want to leave the comfort of my friends. But I know I can’t live like that. I cannot avoid meeting new people and I must be prepared to answer these questions. Who would have thought such a simple question could have such an impact on others?

As the leaves begin to change colors and fall, it is a physical reminder that time continues to pass. I cannot believe it has been 9 months since Graham gained his angel wings. Some days are easier than others, but truthfully, Brandon and I are ok. Our life is very different as you can see by how difficult a simple question like, “Do you have any children?” is, but it also full of many blessings and joys. We are grateful for new friends and the memories we will make as we settle in our new home. God continues to amaze us with how good He is.

This week Brandon and I celebrate our 3^rd wedding anniversary. When we said our vows on that sunny, hot Saturday, we promised to love each other for better or worse, for richer and poorer, in sickness and health, until death do us part. We vowed to appreciate one another, to cherish our friendship, and to face any challenge together. However, never in our wildest dreams did we envision the obstacles that we faced this year.

When life is turning upside down and you are grasping to stay afloat, your marriage, and relationships in general, are impacted. Brandon and I have witnessed this first hand. Many couples who experience a loss like ours are forever changed. Our loss is obvious with the absence of Graham, but even prior to that, when he first became sick and we were faced with the idea of parenting a child who was medically fragile and with special needs, we mourned the idea of what Graham’s life was supposed to be. I think many parents who have children with special needs can relate to this. Regardless of where you fit in the spectrum of loss, your relationship with your spouse, with your partner, with your family is different. I believe there are two options –the situation can tear you apart, or your relationship becomes stronger. I am lucky to say, for me and Brandon, we are closer than ever.

Before our wedding, Brandon and I participated in a premarital counseling program offered through Buckhead Church. Each week we met with an amazing couple, Bill and Betsy, and as a group we discussed what was written about marriage in the Bible, along with real life experiences in Bill and Betsy’s marriage, and our own expectations. One of our favorite scriptures we read was from Mark 10:6-9. “But at the beginning of creation God made them male and female. For this reason a man will leave his father and mother and be united to his wife, and the two will become one flesh. So they are no longer two, but one flesh. Therefore what God has joined together, let no one separate.” The idea that God joined us together and that we mustn’t let anything separate us is something we adamantly believe in. This is engraved in Brandon’s wedding band and it was even read aloud at our ceremony. In the busyness of life, it is something we sometimes forgot, but when Graham became sick, and our life quickly became full of doctors rounding, nurses drawing blood, feeding tube training, and so many therapy sessions, we turned to this scripture once again. God created Brandon for me, and me for Brandon, and this awful, terrible circumstance will not separate us. Instead, it actually strengthened our faith and our marriage. It was God’s plan for us, and we listened to Him. It’s not easy though. This scripture is simply words on paper. It’s up to us to act accordingly. We must be kind to one another, we must keep courting and dating, and we must lift each other up when it is needed. Our actions and the love we share strengthens our bond and that will keep us together. When life becomes dark and difficult, we must choose to remember that God joined us together, and nothing, not even the losses we experience can separate us. Our life together, despite the hardships, will keep getting better and better, until death do us part.

As we celebrate our third anniversary, we also reminisce on the past, including our first wedding anniversary. Not too many people know this story, but on the morning of our first wedding anniversary we found out we were expecting Graham. It was the perfect gift to celebrate one year of wedded bliss! Our anniversary will always be a little bittersweet now that Graham has gained his angel wings, but it is something we will always treasure and remember as we celebrate this special day. When looking back at that first anniversary compared to now, it’s easy to feel sad, lost, and even resentful over what could have been. But Brandon and I find it as another reason to celebrate, another reason to find joy amidst our adversity. Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. (James 1:2-3) In just three years of marriage, we have experienced our fair share of trials, and we know there will be more. But we find joy in knowing that our faith, that our love for each other, will get us through anything. And it also helps, knowing we’ve got a pretty awesome little boy looking down on us cheering us through whatever else comes our way.

When life doesn’t look like how you pictured it, or when things aren’t going your way, it’s easy to complain, or even turn against God for not helping you. It is so much easier to focus on what’s going wrong in your life, and blame others for our troubles. But what if we didn’t? What if we looked for His greatness in the midst of suffering? 

When Brandon & I pictured a family together, this is not what we envisioned. During my pregnancy, we dreamed about Graham playing little league, building sandcastles on family beach trips, and road trips galore! We beamed thinking about the milestones he would reach, planning his future and his success. But those visions for Graham do not exist anymore & our family picture will never be the same.

Since Graham’s passing, many people ask if we want more children. The answer is always a quick yes. We know another child will never replace Graham or fill this hole in our hearts, but when you watch a piece of yourself grow into this beautiful child who laughs, smiles, and is just picture perfect, you want more. It’s like a drug. And we want our parent “fix” again. When the doctors presented Graham’s diagnosis and explained how his disease was inherited from us, we immediately asked how will this impact future children. We learned that if we choose to have a child naturally, that child faces a 25% chance of having Alpers’ disease. 25% does not seem too high, but after watching the symptoms of this disease manifest in Graham, we know it’s not worth the risk, especially since there is no cure for Alpers’ disease. We were given a few other options, from adoption to IVF-PGD, and we explored the possibilities in depth, analyzing what will be best for our family. Whatever we decide, it will be very different from our first daydream of raising a family together. Again, it’s easy to dwell on how unfair this, or how unnatural this may be, or how expensive it is. But at the end of the day, I think it is wonderful that we have options. I think it is amazing how far science and technology have advanced, giving us an opportunity to have future children who are genetically our own but healthy. Whatever ends up happening, we will be grateful for this new possibility.

Life isn’t always full of butterflies and rainbows. Complaints, frustrations, and heartaches are always present. But these obstacles do not define me, or you. And I will not let them cloud the beautiful life God is creating for me, nor should you. “For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” (II Corinthians 4:17). As we encounter troubles, remember they are fleeting. They are trivial compared to God’s plan for you. They are minor compared to God’s promises for you. As your perspective shifts, you will notice that “picture” you originally envisioned isn’t nearly as beautiful as the one that He is creating for you.