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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.

Parenting After a Loss

Parenting is my greatest joy, but it is also the most difficult and exhausting job I have ever taken on. Parenting after a loss, adds another dimension to it. The truth is, no one is quite prepared for parenthood until you become a parent. You can read countless books, even have the pediatrician’s personal phone number on speed dial, but it will never equip you for parenthood. There’s something inside you, something you never even knew existed until you hold your child for the first time, that will help be the best parent for your child. That parent intuition is real and is your best tool in this journey. Parenting is best navigated as you experience it. And parenting after a loss is no different.

So how’s it going for me? Well, some days it’s easier than others. To me, the greatest challenges I have faced so far are trying to preserve Graham’s memory, being honest with my children about my own feelings, and not feeling guilty when I embrace the joy of our lives. When you lose someone you love, you never want their memory to fade. You are grateful when people still say their name, or share stories about your loved one, and it’s no different as a parent. I love when Carter asks about Graham. Or when we ask Carter about his family members and ask him to name them, he’ll start with Franco, Charlie bear, Dada, Mama, and shout “and Graham!” at the end with a big smile. I love that he knows who Graham is and how important he is to our family. I hope this continues beyond the toddler stage and is a part of him forever. We have yet to face any difficult questions from Carter about Graham, but we are prepared for them. We won’t always have the answers and sometimes we might not say the right thing, but my hope is that we raise our children to know and love their big brother even though they never even met him.

Another challenge I face is being honest with my children about my emotions. I never want to lie to my kids and say I’m happy all the time, when in reality, that’s impossible and not true. But I also don’t know how to explain to a 3 year old that sometimes I am sad and I miss Graham a lot. In fact, I don’t know if I share that with anyone, so it feels even more difficult to explain to a 3 year old these feelings. I want to be open and transparent with my children, but it’s not always easy.

Last, I often find myself feeling guilty when I am happy. After losing Graham, my heart was broken and it felt like it would never heal. But slowly, those pieces started to come together. There will always be a huge piece missing and in Heaven with Graham, but Carter and Charlie have brought me more joy than I could ever have imagined. When I see them playing together, I truly melt. I hate to sound cheesy, but I am overflowing with joy and I feel guilty for that. How can I be this happy when Graham isn’t there too? And then, I do a quick pivot from that high of happiness, to sadness that Graham is missing out on these moments. I know that life continues to move on when you lose a loved one. And I know Graham wants us to be happy and live our life to the fullest. And really, how can I be sad that he’s missing out, when Graham is in Paradise with our Lord? But I still can’t help feeling conflicted.

I’m still in the thick of things and don’t have much advice except this – be kind to yourself. There is no guidebook as you navigate these waters. Do your best. Some days you will feel as if you have everything together and are crushing this whole parenting journey. Other days are a struggle as you experience unknown challenges. All you can do is hold your head high, and know your angel is always cheering you on.

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.

Grief and a Pandemic

It’s been awhile. Looking back, my last post was in January of 2020 and it was inspired by New Year’s resolutions and hopes for a bright 2020. Shortly after the post, we entered into February and March, which was full of hustle and bustle in our household as we prepared for the arrival of Charlie. And then in mid-March, as we all know too well, the nation shut down as Covid cases increased. After the first week of lockdown, Charlie was born on March 24, and he became our bright spot in the midst of uncertainty.

We were unable to take newborn photos, so we decided for a silly front porch pic with @rosetreephotography

Since then, I have embraced more emotions than I count. Fear, sadness, happiness, loneliness, amazement, gratitude, and survival come to mind when I reflect over 2020. I sat down numerous times to write another post, but I struggled with finding the right words. In fact, I still do. How can I encourage hope when we are all grieving some type of loss? Because that is the truth. We all lost something in 2020. Many people had to change their wedding celebrations; others changed their birth plans; we saw businesses close; schools shifted to online learning; outdoor gatherings have replaced intimate dinner parties; and many of us lost loved ones.

I know we are told to be resilient or to find the upside in these circumstances. And I can see where they are coming from. There are many aspects of this past year for which I am grateful for. Life has slowed down considerably. My husband is working from home which has allowed us to spend more quality time together. For example, we now eat dinner every night as a family around 5:30. And even though it can be stressful to take a pause from our work day or even find time to prepare a home cooked meal, we at least have the option to eat together. And once we sit down as a family, it is the most special part of our day. If Brandon was working in his office, we would be lucky if was home before 7:00, and this family dinner experience would not happen. We are also lucky to have our parents nearby and they are all healthy. Even though we may not see each other as often as we would like, we are grateful for FaceTime picnic parties and WhatsApp bathtime shenanigans. I am grateful we live in Georgia where the weather has allowed us to set up outdoor play dates and patio brunches. I am thankful for all the video technology which has allowed my bible study to meet virtually, and has also kept me close with my college friends even when we are states apart. I know we all can list many things we are grateful for, but it doesn’t mean we can’t acknowledge the losses.

When you lose a child like we did, you would never say to me, “Well at least you still have two children who are healthy and alive.” If a friend experienced a miscarriage, you wouldn’t tell her, “Well at least you can get pregnant.” Or if your neighbor loses his father, you wouldn’t say, “At least your dad lived for 50 years. That’s more than some get.” Even though those statements are true, when you are grieving, these aren’t the words that bring hope or help you heal from the pain. And even if these statements become the “silver lining” in terrible situations, when you are hurting, they do not provide comfort. So why should we treat this pandemic any differently? Why shouldn’t you mourn what was lost and recognize the struggles we are currently facing?

Now, I know this doesn’t sound hopeful, but it might help us heal. And it’s important to heal in order to become hopeful. Sometimes in order to swim through the grief, we must recognize what is lost. We have to yell and scream at the top of our lungs. We are allowed to be sad. It’s okay to not be okay. It’s okay to feel whatever you want to feel right now. But, as you find yourself swimming through these emotions, you must ask for help. In fact, we all could use a life preserver right about now to avoid drowning in these circumstances. We might be fortunate enough to turn towards friends and family to help us navigate through these waters, but we must also look to our Heavenly Father. When I’m feeling lost or sad, I always open my heart to God, because I know He will not only heal my pain, but He will also leave me overflowing with peace.

Besides prayer, scripture is another raft we need to use when we are struggling to stay afloat. There are many stories in the Bible and verses that help me find a new perspective when dealing with life’s losses. Look at the story of Job. Job lost virtually everything he had – his wealth, his children, even his health. His first reaction was to rise up, tear off his clothes and shave his head, and fall to the ground and worship. He went through the process of searching for answers as to why this happened to him. Job’s wife told him to curse God; his friends came to comfort him, but when he did not get over his grief quickly, they added to his pain. But Job continued to praise God. He never denied his pain or suffering, but he chose to praise God. Job was never ashamed to grieve, but he always praised God. And in the end, the suffering he experienced, was a result of God’s love. And because of this, he was greatly blessed by God. Imagine the blessings God has in store for us as we recognize the greatest gifts in our suffering. By praising God when we are grieving we end up experiencing His best gift for us – that He is always with us. And once we do this, the sadness or the feeling of defeat disappears. We are left with peace, a full heart, and a feeling that we are never alone. If we continue to sing His praises, He will bless us and reward us. He will give us peace when we need it most.

When you turn your life over to Him, and thank Him for our losses and our blessings, your heart will reflect God’s love for you. And in the midst of chaos, you will carry a peace with you that everyone will notice. I hope that as we enter into 2021, we recognize that the change of the calendar will not erase the pains of our past; nor will it be a magical solution for our future. Instead, we must embrace where we are. Thank God for our joys and our sufferings. Lean on Him, and He will get us through whatever comes our way. Continue to praise Him, and you will be amazed at how He rewards you.

Living with Grief

blog-pull-quotes

I have always loved the excitement and hope associated with a new year. I love the traditions of a New Years day meal, creating resolutions, and planning for a better, brighter year. But January is also a month I associate with grief, hospitals, and ultimately loss. My father passed away January 25, 2011 and our son Graham gained his angel wings on January 24, 2017. When I reflect on those time periods, I am flooded with images of sickness, hospitals, and death. These recollections are sad and they contradict the anticipation of a new year we associate with January. And even though these events happened years ago, the memories often feel so present.

My Dad and me in 1988

Graham and me in 2016

When scrolling through Instagram, I came across a quote by John Piper. “When sadness makes life heavy with tears, don’t stop doing your work. Own the pain, believe a promise, take a step in faith.” Whenever grief strikes and feels as if it consumes my thoughts, I try to remind myself to take this moment in. Feel the sadness, recognize the pain, but do not stop doing what God has called me to do. Although I’m still not sure what that looks like, I know He wants me to be a wonderful wife, a strong mother, a great friend, and good teacher. To be the person He has created me to be, I must live with my grief. And the key word is “live.”

The LORD is close to the brokenhearted and saves those who are crushed in spirit. Psalm 34:18

Grief does not fade away over time. It is always a part of us, even when the rest of world believes you have moved on. But it cannot consume you. Living with grief does not mean you cannot experience joy and hope, and we should not feel guilty for those feelings. But living with grief is a constant battle of those emotions. If you know someone who has experienced a loss or trauma, remember to recognize their loss and the emptiness they carry with them on a daily basis. Take time to say the name of the person they lost, or share a memory of their person. It truly lifts them up because in your simple gesture you are saying, “I still remember and am here for you.” It’s never easy to juggle the joy of the future with the reality your loved one will never be a part of it. But when someone acknowledges this challenge, it makes a world of difference.

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Even though I lost two amazing men in January, those memories do not define this time of year. I also have images of hope when I think back to January 2016. When Graham was born prematurely at 24 weeks, the doctors were not sure if he would survive. And if he did, the statistics indicated he would face countless obstacles. But Graham surpassed every challenge and survived. He was a miracle! Not only did Graham show us that he was a fighter, he also reminded us God’s power. Our Lord can help us achieve anything! When I think back to those NICU days in January, I remember how Graham surprised us each and every day. He showed us how strong he was and how good our God is. Even though we might struggle outwardly, like Graham did, God is lifting us up each and every day. Graham tackled each challenge and rose above the obstacles stacked against him. These NICU memories remind me that despite temporary troubles and setbacks, God is with us. He renews us each and every day, so that we can achieve a greater glory.

I will always associate January with sadness and pain. After all, no matter how much God loves us, the loss of my father and son is very real and very present. And even though my grief is a part of me, it does not define me. I am able to live with grief because of God’s love for us and His promises for us. During this January season, I am also reminded of Graham’s strength and God’s ability to help us rise above the challenges we face. God is good and He is faithful. His love for us endures forever. As I look forward to 2020, I am full of joy and hope.

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.

Thank You

I am beyond grateful to share that Brew and ‘Cue was a HUGE success. We had 140 guests attend, which helped us raise so much awareness for mitochondrial diseases. Not only did we enjoy such amazing fellowship with new and old friends, we also raised a lot of money for our research fund! In the final count, we raised a little over $12,000 for the Graham Collins Research Fund, which is incredible! God is so good! Words truly cannot express how grateful we are for everyone who continues to help us honor Graham. But I will do my best and sincerely thank each and everyone. You mean so much to us.

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Since the event, I have been working with the United Mitochondrial Disease Foundation (UMDF) to find a program that we can support. I even managed to get in touch with a doctor leading one of the research programs to hear from her about their goals, plan, and what she needs most. She is leading a study to help make the diagnosis of mitochondrial disorders easier. Because mitochondrial diseases affect multiple organ systems and produce many different symptoms, they are so difficult to diagnose. This adds to the challenge of diagnosing, as well as treating mitochondrial disorders, and also slows down the clinical research needed to discover new therapies. While genetic testing is increasingly used for diagnosis, it is very expensive, which we know all too well. So this research team hopes to use cells from a simple blood draw in conditions that stress mitochondria to test how well mitochondria are functioning. If successful, she hopes to provide a simple and relatively quick test to guide the diagnosis and medical decision process, AND it would be less expensive than genetic testing. Wouldn’t that be incredible?

This summer the UMDF will announce a few more research programs they are supporting at their annual conference in June. Brandon and I hope to attend the conference which would allow us to meet with other families, doctors, and the UMDF team and learn more about the different research opportunities. Since there are many possibilities to help with the research of mitochondrial disorders, we are going turn this over to God. In times like these, it’s best to pray about what weighs on our hearts and trust God to lead us. We know He will lead us to the best study that will have the greatest impact on so many other families. We will keep you posted on how things turn out. In the meantime, we’ll keep sharing Graham’s story with others, snuggling with our miracle baby Carter, and living a life that will make our Graham proud.

Brew & ‘Cue

brew-&-cue-for-mito-savethedate

Why not start the new year off by supporting a great cause and enjoying some tasty barbecue and brews at the same time? Tickets are now on sale for our Brew & ‘Cue event and can be purchased here.

Besides encouraging you to buy a ticket to our event, I also want to take a moment to thank everyone who continues to support our #growgrahamgrow mission. I am very excited to announce we are making progress in securing items for our silent auction. Right now we have:

An assortment of gift certificates for tasty treats like cookies, pies, and jams
Various wine and cocktail baskets
Gorgeous art pieces from local artists
Beautiful lamps from Circa Lighting
Family photography sessions
Beauty products from Beauty Counter and Rodan and Fields, even a gift certificate for an elite medical spa – Sculpted Contours Luxury Medical Aesthetics
Hawks tickets and signed sports memorabilia
Cooler and other outdoor gear
Travel, including a cabin rental in Bryson City

Follow @brewandcue4mito for more information about items as we secure additional donations.

We are still in need of items, so if there is anything you would like to donate, you can contact me at lauren.tristani@gmail.com. And if you receive an email or DM asking for a donation, please know this is never easy to ask for help, but until there is no one suffering from mitochondrial diseases like Alpers, we must do what we can to make a difference.

We are so grateful for everyone who keeps getting in our boat to help us honor Graham. Sharing his story and raising money for mitochondrial disease research is important to us. It leaves us with hope after the loss of Graham. We hope to see you, your neighbor, your brother, and all your friends at our event on February 10 at Monday Night Garage.