Grief Support – #growgrahamgrow

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

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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.

The Truth Behind a Loss

Since Graham’s passing, I feel different. Things that once mattered to me or I was passionate about, just don’t seem to bring the same excitement. The path I envisioned for myself doesn’t feel right anymore. And I’m sure I am not alone. After any loss, whether it’s a parent, grandparent, friend, or child, you are forever different. You are a part of a club you never envisioned and it can impact you in big or small ways. This “loss” could even be an idea – an idea of a pregnancy or an idea of a future child you desperately want; a loss might not be death, but rather a breakup in a relationship. Those who experience a breakup or divorce lose the idea of a future with their spouse or significant other. I feel like we all can relate to this in some shape or form and understand that when something life changing happens, no matter how big or small, it changes you.

A loss, no matter what it is, is tough. Adapting and changing after the loss, is even harder. Some days, when the struggle is more than I can bear, I must remind myself I am not alone. “Be strong and courageous. Do not be afraid or terrified of them, for the Lord your God goes with you. He will never leave you nor forsake you.” (Deuteronomy 31:6) He is with me every step of the way. Even with His strength and the comfort knowing God is with me, does not change the reality that transformation and attempt at healing after a loss is a great challenge. For me, this process is a struggle between who I once was, and this new person I’m trying to understand. After losing a child, it’s a struggle to move forward with life while still remembering Graham and keeping his spirit with me. I notice this most in what excites me now. Not everything is different. Brandon and I love quite date nights at home, and I look forward to chance to catch up with friends over dinner. I still find joy in encouraging my students and trying to get them excited about learning. And, yes, one of the highlights of each week is getting a Chai Tea at the Starbucks during my Target run. Those things are still there, but there are now new things that also bring excitement and in my opinion, bring a greater purpose to my life more than before. For example, educating strangers about rare diseases and the importance of genetic testing brings such joy to me. Sharing a story about how medical research is improving and impacting families like mine is thrilling. Connecting with another mother who understands loss, frustration, pain, and hope is rewarding. As much as I want to hold on to my old interests, my old self, I am without a doubt a new person. Brandon’s a new person. Our family is forever different and we are okay with that.

One of the things I’m realizing is the new me is often talking about rare diseases. As uncomfortable as it may be, it’s a calling I cannot ignore. And thankfully, there are plenty of ways to educate others about rare diseases, including something happening in February. Last year we participated in a Jeans 4 Genes Day on World Rare Disease Day & I’m very excited to announce we plan to do it again! MitoAction, an organization dedicated to improving quality of life for those who are affected by mitochondrial disease, is partnering up with Global Genes, one of the leading rare disease patient advocacy organizations in the world. On February 28, 2018 we ask that you too participate in a Jeans 4 Genes Day. Ask co-workers, teachers, students, friends, family, etc. to donate $5 to wear jeans in honor of World Rare Disease Day. For more information about organizing an event please visit http://www.mitoaction.org/jeans-4-genes. It may sound silly to wear jeans and post on social media about the day, but it’s so much more than that. I truly believe when we talk about rare genetic diseases, we are educating the world about genetic testing and prevention, which makes a difference!

I’ll get off my soap box now. But as you can see, this is what matters to me now. This is what happens after a loss. You are different. You aren’t afraid to use your voice to show the world what truly matters now. As I try and adapt to this new path, I continue to trust in the Lord. “Trust in the Lord with all your heart. Never rely on what you think you know. Remember the Lord in everything you do, and he will show you the right way.” (Proverbs 3:5-6) Once again, I can’t say it enough, God is good. He provides hope and strength when we need it most. He provides us with direction when we feel lost and guides us through these changes we face after a loss.

Finding Peace Within

God's In Charge

Have you ever felt exhausted or stressed from trying to make sure everything is just right? I know I have been guilty of this. There have been many times where I would try to control a situation and fix it all by myself. Sometimes, I could get by and make it work, but I often felt anxious throughout the process and drained afterwards. However, since Graham’s illness, I find myself releasing that control. It’s definitely not easy, but I try my best to just trust God and let Him do His job.

When Graham was hospitalized I asked the doctors countless questions. I meticulously watched the nurses as they cared for Graham so I could learn what I needed to do. I spent hours researching Graham’s symptoms, ways to care for a child with special needs, exercises to help with Graham’s physical therapy, etc. I was tired and I wasn’t finding an answer “to fix” Graham. It wasn’t something I could do on my own. At that moment, as I released my control, I finally found peace within. When I let go of the desire to be in charge, I let God in. And with that I was finally okay not knowing what would happen next. I was okay not understanding why this was happening. Instead I knew that I needed to let God do His job and take care of everything else. And I did my job – obeying Him & being Graham’s mom. With this realization, I finally was able to just sit with Graham and snuggle. I finally smiled as I would sing Snuggle Puppy to him and every day we took silly selfies using every filter on Snapchat.

But more importantly, I finally found contentment as I held Graham and prayed. Now don’t get me wrong, I still asked questions and did everything that a mom could do for her son, but instead of relying on myself, and only myself to help Graham, I realized God was in charge, and I was just his Earthly helper.

Psalm 37:5 states, “Commit your way to the LORD; trust in Him, and He will act.” It is so simple! If you commit to the Lord, and really trust Him, He will take charge – not you! When my controlling nature tries to interfere, I try my best to release that urge and instead pray. If I commit to Him, He will show me the way. Knowing He’s in charge instead of me, is such a relief! I find comfort knowing I am not alone, and that my problems are in His hands.

Since Graham’s passing, so many people ask us how are we doing. I know every day is different, but truthfully we are okay. And I think we are okay because my husband and I live this verse. We have turned our lives over to Him, trusting Him, and we believe He will act for us. To me, this simple verse, and living it by releasing control has been our secret to finding peace within. It is difficult to let go, but I think you’ll find it gets easier and you’ll be happier when you let Him in.

Our Journey

Four months ago, on January 24, 2017 our son Graham entered his forever home. Graham was diagnosed with an incurable rare disease – Alpers-Huttenlocher syndrome and the prognosis is poor. The disease caused Graham to have uncontrollable seizures, brain atrophy, and liver impairment which caused his liver to fail. Alpers’ disease is caused by an underlying mitochondrial metabolic defect of POLG. Prior to his diagnosis, we were naive to mitochondrial disease, epilepsy, and other rare diseases. Now, these terms are a part of our permanent vocabulary and our lives are forever changed.

After four months, our hearts are still broken, but we are healing. I will always be Graham’s mom and he will always be a part of our family. This is why our life will never be like it once was, but we will find a new normal for us. We know that whatever this new normal looks like, Graham will always be a part of it, just in a different way than we originally planned. When thinking about God’s plans for us, I know God chose us to be Graham’s parents. He gave us the most perfect son, who was also very, very sick. God chose us to care for Graham and to love on him. And when Graham became sick, and it became clear that God’s plans differed from our vision, we had a choice. Do we blame God and turn against Him? Do we doubt God’s plan for us and ask, “Why?” Or do we praise Him and trust Him? Do we pray and ask for Him to show us a meaningful purpose to His plan?

Every day we face this choice. And every day is different. There are days when we feel God’s presence with us and know everything will be okay. But then there are days filled with tears and questions. On those days, it is a difficult to remind ourselves that God is good when the unthinkable happened to us. It is a struggle to see His goodness because we are flawed. Our human flesh is weak and it can prevent us from accepting God’s plans. On those days, I remind myself of God’s grace. “Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow.” (James 1:17) God gave us the most perfect gift – Graham. And even though our time on earth with him was short, we will be reunited one day. And God will continue to shower us with gifts of His love. His love for us is everlasting and it will strengthen us when we need it.

When Graham was hospitalized I started a Caring Bridge page to communicate with family and friends about Graham’s condition. When Graham passed away, I stopped writing. Since my last post on Caring Bridge, many people have asked me to continue writing posts. I never envisioned I would create a blog, or share my story so publicly, but it’s been on my heart these last few weeks. I do not know what God’s plan is with this “blog” but once again, who am I to question Him? I will continue to trust Him to lead us on our journey. I must warn you, I am not a writer, and I am definitely not a expert on anything, but this is my attempt to keep Graham’s memory alive and to provide hope for others who need it most.

I envision this blog as an outlet to share our grief, but also our hope for a brighter future. I see it as an opportunity to raise awareness about rare diseases, but also as a way to keep Graham’s spirit with us every day. As his mother and his #1 fan, I want Graham’s memory to grow & impact as many people as possible, hence our title #growgrahamgrow.