Finding Hope – #growgrahamgrow

How has it been eight years?

It’s hard to believe it’s been eight years since we last kissed our Graham. Eight years since we watched him take his last breath. Eight years since we said goodbye for now. Eight years living and surviving with our grief. Eight years.

Anniversaries like today stir so many emotions for me. And when I’m overwhelmed, I sometimes like to disconnect and slip away, which we will do later today. I also find it therapeutic to write out what I’m feeling. When I shared with Brandon what I wrote, he encouraged me to turn it into a post, so here we are.

What have I learned?

I like to think these last few years have made me wiser. Here are few takeaways:

Grief comes in waves. Sometimes it’s a wave that truly sucks you under and you are fighting against a raging rip current to get up. Other times, it’s a small splash that you easily jump over. My advice to anyone experiencing their own grief is to take it day by day, and feel whatever it is you are feeling. And when you are knocked down, there will always be someone throwing you a lifeline when you need it. Always.

No matter how many days, months, or years pass, you will never get over this grief. Give yourself grace as you accept that things will always be different. Different isn’t necessarily bad, it simply means the life you have after your loss will never be the same as before. And that’s ok.

It’s also ok to not be ok. For me, it’s easier to be strong and help others, and I’m slowly learning that if I don’t take the time to refill my own cup, I won’t survive. It’s ok to tell someone you are struggling, it’s ok to decline a dinner invite and spend the evening recharging. It’s ok to be selfish and do what you need to do so you can find a way back to being “ok”.

Love big, worry less. The most important change I have experienced is a new outlook on life. I try to appreciate even the littlest moments and never take them for granted. Life is a gift, and every second we have together is precious. We need to appreciate those moments and forget about the stress. Some days this perspective is a struggle, and when I find myself consumed with worry, fear, and sadness, I try to find gratitude. And when all else fails and the darkness is creeping in, I pray.

Where am I now?

I’m living life to the fullest in our post-Graham world. I have learned to describe my life in two parts – my life before Graham passed, and the years after Graham. Losing him isn’t anything you get over. It’s not like a bad breakup where time and therapy help you recover. Instead, with a loss, you simply change. And you still need that therapy! It helps tremendously. But if I’m completely honest, I still carry a lot of trauma from our hospital stay. I wrote a post about this. It’s a long one. And it’s heavy, more so than what I like to publish, and it’s real. It’s a large part of who I am today, for better or worse.

I am incredibly lucky to have two healthy, silly and sweet boys who are my whole world. I do not take this for granted, and never will. I have also learned to not to worry about every little thing. You’d think after losing our first son, we might be those helicopter parents who try to control each and every piece of their lives, but I’m not. If anything I learned I cannot control what happens to my children. I can take care of their daily needs; I can help them learn; I can take them on trips and buy them all the stuffies, legos, and Pokemon cards; I can do so many things for them, but I cannot shield them from things out of my control like sickness, accidents, and tragedies. I can help them learn to trust God and to pray when life is hard. I can teach them to love big and to be kind. I can give them my whole heart.

We talk about Graham, loss, and heaven in our house. There are photos of all our boys in our home; there are Christmas stockings for all of us in our house, including Graham. The boys know when they see a red bird that it’s their big brother checking in on them. They know when things are tough, we pray to God and ask their guardian angels to watch over them. I might not shout this to the world, but it’s something I carry with me every day. I am a mother to 3 sweet and silly boys, always and forever.

What are my hopes for the future?

I simply hope to love big and show how good God can be. Our world is often divided; there is so much conflict, tension, and bitterness when you open up social media or turn on the news. It can be very dark. And I want to see the light. I want to see the joy in our world; to see the excitement and the good in our lives. I want my children, my friends, the people I work with, and anyone I interact with to see the possibilities when we look for the good. Let’s stop and smell the roses. Let us focus on what matters most – our families, friends, and God. Truly that’s all that matters.

I’d love to envision a world without sickness or death; without mothers losing their children; a world where a brother doesn’t grow up never meeting his other brother. I am also a realist. I know that life will always include tragedies. There are fires, cancers, hurricanes, and unimaginable loss. It’s not because of God. This world was never perfect. Regardless of how dark it can be, God told us if we see the light in Him, we will always have a bright future. I believe in miracles and I know there will be death, hardships, and loss. What matters is how we handle those moments and how we find God in the day-to-day.

Lastly, I hope Graham knows I love him dearly; I hope he’s proud of us. My final words are to Graham. You are never forgotten and always missed. I love you forever and we will see you again.

Trust God, especially when remembering the harder days

Bear with me, as this has been the hardest post to write and might be difficult to read. I wanted to write my memories of these difficult days we experienced with Graham. Even in the darkest of hours, God is always with us. He is the light to help us find our way.

Eight years ago, we were discharged from Children’s Hospital of Atlanta on January 24. Since November 22, we spent every night in a small hospital room, taking turns on a very uncomfortable couch attempting to sleep, trying to quiet our busy and scared brains, and simply getting lost in our prayers for our Graham. I am a positive person by nature. I see the best in everyone and everything, and this was a horrible time in my life. Even as the years pass, these dates still trigger deep memories.

What started as an ordinary Tuesday in November, quickly turned into a nightmare. We celebrated Graham’s first birthday a few days earlier on November 17. He was born prematurely at 24 weeks, and spent 105 days in the NICU, yet he was perfectly healthy despite his early arrival. A true miracle! We simply had to adjust his age and work with a few specialists to ensure he continued to grow and reach his developmental milestones. Given his history, we were always cautious when it came to his health, which is why on the morning of November 22, when I noticed something wasn’t right, we decided it was best to stop by the ER on our way to a follow up appointment. I truly thought once he was examined they would discharge us and we’d all laugh at my silly panic. That quickly changed. Once he was admitted, Graham experienced a severe seizure that did not stop. Doctors, nurses, and all the other sounds in that hospital room screamed to us that this is not ok. Brandon & I were rushed outside and told to wait. We knew this was not ok. After this, everything is a blur. We let our friends and family know what was going on and to pray. I felt completely and utterly helpless. We had no clue what the day would bring. And this is how we spent the next two months.

Graham never recovered from these seizures. He continued to have unrelenting seizures which forced his doctors to place him in a medical coma. He was never the same after this. Yes, his eyes were open, but they were glazed over and lacked understanding. I never saw him smile again; I never saw the joy in those eyes again; I was never able to feed him again; I never heard him laugh again. We never played again; he never held my finger again. In many ways we lost Graham on November 22. Now we had to prepare for what’s next. Problem was, no one knew what that would be.

Countless tests, diets, treatments, and services were provided. We left one ER and headed to an outpatient program at a different hospital with the hope we could build up his strength and head home. In this program, due to a new medication they gave him for his seizures, he worsened and we had to move him into the ICU as his body continued to deteriorate.

We spent Graham’s first Christmas at Northside NICU where we knew he was growing and his body was getting stronger every day. Sure he was only 2 lbs, but he was thriving for a micropreemie. We were overjoyed. It broke my heart that we could not spend the night with him at Christmas since they did not allow families to spend the night in the NICU, and I was ok that this would be our only Christmas apart. Now it’s the present day, and this is Graham’s second Christmas and we are once again forced to leave him at the hospital alone because they did not allow parents to sleep in the pediatric ICU. To put it bluntly, my momma’s heart was crushed. It was the first night I slept in a bed since November 21st, which was needed for my exhausted body. Mentally I was distraught. Unlike the year before, the hope and optimism for our future was bleak. I couldn’t wait until we were allowed back to see him again and see if he was ok. Eventually he recovered from a critical state and moved to a pediatric room where we once again waited to see what was next. Shortly after the new year, we finally had an answer for his condition, an awful mitochondrial disorder that caused his liver to fail. They needed us to change hospitals once again to monitor his liver and assess what’s next.

After 2 months in various hospitals, waiting to understand what is wrong with our Graham, we had an answer and needed to prepare for the inevitable; Graham was in liver failure due to a genetic disease which has no cure. It progressed to the extent where all we could do is make him comfortable. We spoke with hospice to learn how we can take care of him at home and how best to make him comfortable. We might have days, weeks, maybe months. No one knows.

In my heart, I knew he was declining quickly and all I wanted was to go home as a family and spend what time we had left with him. To take him home to see Franco. To get away from the sounds and the smells of the hospital. As we were getting ready to leave, Graham’s oxygen levels continued to decline. To be honest, I wasn’t even sure if they would let us leave, and thankfully they did. Everyone knew it was only a matter of time and they wanted us to have this moment to ourselves, not surrounded in the sterile hospital environment.

Once home, hospice met us again, explaining how to give Graham his feeds, how to administer his medicine and more. She told me she’d be back in the morning, and she gave me a look that shared things are progressing quickly. We made the most of this horrible reality. We cuddled in our bed and held Graham for as long as possible. Graham’s grandparents said goodbye and gave him kisses. Franco laid right by his side without getting up for food, treats, or any of the other silly things he’d jump around for. Franco understood where he was needed. Brandon & I held Graham as we watched him take his last breath.

I’d like to say no one prepares you for this moment. However the hospice nurse actually did share some practical advice. She told me once he passed there would be blood in his body and it might come out, and sure enough it did. I only say this because no one talks about these little details. And this is such a vivid memory of mine. I was so upset when I saw it, not out of fear rather a ridiculous concern that I did not want the blood on his clothes. You’re probably thinking why does that matter, so let me explain.

Shortly after he passed, my mom helped me change Graham into this gorgeous white outfit I purchased at Bloomingdales earlier in the week. Yes, I went to the mall to buy an outfit to bury my son in when other parents are picking out regular church clothes. The sweet lady asked if I was looking for anything special, and I’m just browsing. How could I tell her the truth? That’s the reality I often face. I can never explain details like this because I end up comforting a stranger over my loss, which is silly right? When the blood came, I wasn’t scared, I simply wanted to protect Graham’s clothes, which symbolized how pure and holy he was. Because that’s the truth. In this moment it mattered to me what he wore. Graham was an incredible angel baby and I needed to do what I could to protect him at this moment.

Looking back, I think it was also my attempt to control something where I felt so lost. We sat in our bed, holding Graham and waited for the funeral home to arrive. They took Graham’s body away, and then we collapsed. We were still in our home and no one outside these walls knew what just happened. I can’t even begin to describe how isolating and devastating it was. I also felt a giant sense of relief. I feel horrible admitting this, and it’s true. I was relieved. For the last two months, I watched Graham decline. I watched him endure horrific and useless tests and procedures; I watched him slowly die every day, and now he was gone. His body was not suffering; his body was no longer sick. He was finally healed and in Heaven. It continues to break my heart that through loss he was finally saved. I prayed for a miracle. I bargained with God and I did everything in my control to help Graham, yet nothing worked. I also prayed for peace and on that night in January, I finally felt an overwhelming sense of peace. God filled my heart with an understanding that Graham is ok.

For the last eight years, I have continued to pray for strength and peace as this is an unimaginable loss. Every date whether it’s November 17, November 22, December 25, January 24 matters. I cannot ignore them because my life changed drastically on these significant dates. I think I’ll always need to ask God for help because what we experienced is not something you ever forget, nor should we. God continues to show us we are loved; that we are ok. He continues to bless our family as we welcomed Graham’s little brothers over the years. We have new days to celebrate like March 24, May 30 or other days we can always look forward to like June 28 or December 28. I will always be grateful for the joy we continue to find after our loss. I will never understand why this happened to us, and I cannot dwell on this question. I can look ahead and trust that God’s plans are always bigger and better than mine.

Mother’s Day and Grief

Art is by Maria Andrew who has turned her own grief into beautiful works like this

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.

My only Mother’s Day with Graham (2016) + Mother’s Day in 2021

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.

Trusting God When Life Isn’t How You Pictured It

“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.

Finding Comfort

Isaiah 40-31 Photo

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.

No Parent Alone

friends quote

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.

It’s the Most Wonderful Time of the Year

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

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.

Thanksgiving 2018 — Carter’s first Thanksgiving and our first not in a hospital

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.

Another New Year

Happy New Year

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.

Wonder, Acceptance, & Faith

Wonder

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.

Changing Seasons

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 home on Sanders Ave will always hold a special place in our hearts

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.