Love is Patient. Love is Kind.

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

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

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

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

Mito What?


When the doctors at Children’s Healthcare of Atlanta started to discuss the possibility that Graham’s seizures and brain atrophy were caused by a mitochondrial disease, we were scared. We didn’t know much about mito, but from what we heard, the prognosis was grim. As more symptoms appeared and with a simple blood test, it was confirmed that Graham had Alpers’ disease, an incurable and deadly mito disorder. During this process, Brandon and I turned everything over to God. We consistently prayed and through His word, He spoke to us. “Everything that was written in the past was written to teach us. The Scriptures give us patience and encouragement so that we can have hope.” Romans 15:4 Hope is an incredible word. It turns darkness into light. It turns the impossible into possibilities. Graham’s disease is hopeless. It is incurable. But if you turn to the scriptures, if you have faith, this can change.

When I discuss Graham’s illness with others, the first question people ask is, “What is mitochondria?” I became accustomed to answering this question, along with a short explanation of Graham’s disease, and the importance of mitochondria to make sense of it all. When I returned to work, I decided it would be best to talk with my students about Graham and our experience. I teach high school students and they have been invested in Graham and his story since day one. I knew this would be a sensitive topic, but it would also be a teachable moment to share with them about life, sadness, joy, grief, and more importantly – an opportunity to educate them about rare diseases like mitochondrial disorders. I planned to start the conversation by asking them if they knew anything about mitochondria and I expected them respond to my question with, “Mito…what?” But they surprised me by actually answering my question and they even taught me about mitochondria. They told me that mitochondria are found in almost every cell of the body. They also knew that mitochondria are the “powerhouse of the cell”, which is also true. And they knew that mitochondria is essential to sustain life. I was amazed and encouraged by what they already knew! I also doubted my own intelligence because when the doctors explained mitochondria to me at the hospital, I felt like I was learning a foreign language, which I shared with my students and we had a good laugh. In all seriousness though, I started to wonder what happened. Why did I forget a term that one student described as “basic biology”? I think I forgot about it, along with everyone else who asks me about it, because it didn’t mean much to us at the time. Mitochondria was another term highlighted in our textbook, another definition we memorized and purged after a test – unless you loved science and wanted to study biology in college, you are the exception. But that wasn’t me and I forgot all about mitochondria. At the time it didn’t mean much to me, but now it does. Now, I will never forget it. Graham taught me that mitochondria isn’t just a term from a textbook, it impacts us every day.

Graham’s mitochondrial disease is called Alpers-Huttenlocher syndrome. This particular disorder is caused by genetic mutations in the POLG gene. The POLG gene is super important because it provides instructions to your cells to produce new DNA. Basically, it is the brains of your mitochondria. Each mitochondria contains a small amount of DNA for normal functions, and then it will replicate and create more cells. This is essential in creating energy. Well this disorder – Alpers’ disease – caused Graham’s mitochondria DNA to deplete, instead of replicate. And since his mitochondria could not duplicate, Graham’s body was essentially running out of energy. People often ask us if we had any idea he was sick, but we did not. We were blindsided by the onset of his disease. Like most mitochondrial diseases, Alpers’ is difficult to diagnose because symptoms are similar to other disorders. In Graham’s case, he had low muscle tone and GI issues, which are symptoms of Alpers’ disease, but these are also common in preemies, and since Graham was born at 24 weeks, we assumed it was related to his prematurity. When he started to have seizures, another symptom of Alpers’, doctors investigated epilepsy and neurological disorders, not mitochondrial disease because his symptoms did not scream mitochondrial disease. And this is very common for those with a mitochondrial disease. As I learn more about this disease, I realize how important is to educate others. With awareness and understanding, I hope mito disease is a term people recognize like cancer, heart disease, or diabetes. I hope it becomes easier for doctors to identify and treat. But in the meantime, I would simply encourage us to prevent it through genetic screening.

Mitochondrial diseases like Alpers’ are inherited. Graham received a defected POLG gene from Brandon and a different defected POLG gene from me. We are both carriers. The chance of us having another child with Alpers’ is 25%. What people do not realize is that everyone is a carrier for genetic disorders. Statistically, most individuals are carriers of 3 to 4 diseases. The odds of you and your partner carrying the same genetic disease is rare, but it is possible, as we have witnessed with Graham and other couples I have met along the way. There are tests available to screen for some of these diseases which I would encourage everyone to do! Tell your friends, your children, even your grandchildren about this option. I think if more couples knew how easy it was to get screened, they would do it to prevent any heartache like we experienced. Most often it is covered by insurance, and if isn’t covered, it is rather affordable. We negotiated our price with GeneVu who I highly recommend. And if you decide to get tested and find out that you and your partner are carriers of the same rare disease, it isn’t the end of the world. Believe it or not, there are other options like adoption or choosing IVF to screen embryos prior to implantation. It is incredible what possibilities exist! We love Graham and will forever cherish our memories together, but if I can spare one family the heartbreak of losing a child to an incurable, genetic disease, I would.

Revelation 21:4, “He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.” God promises a better world for us, and I know Graham is there waiting to see us again. In the meantime, we will continue on our journey, sharing our story with others. This is our experience with a rare disease and I hope my voice can lead to more conversations and greater awareness. This is our hope.

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.