The Truth Behind a Loss

IMG_7902

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.

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 2nd or 3rd? 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.

Mimosas for Mito

mimosas-for-mito-facebook-2_02

I have teamed up with United Mitochondrial Disease Foundation (UMDF) and organized an event to raise awareness and funding for mitochondrial diseases – Mimosas for Mito. As I learn more about mitochondrial disease, I am understanding mitochondrial disease isn’t as “rare” as I once thought. Instead people are simply unfamiliar with it. The type of mitochondrial disorder Graham had – Alpers’ disease is rare, but approximately 1 in 2,500-5,000, adults, teens and children are affected by mitochondrial disease, making it more common than childhood cancers. Yet, many people know nothing about mitochondrial diseases! I hope to change this. Mimosas for Mito will not only raise money to help UMDF’s mission to promote research & education for the diagnosis, treatment, and cure for mitochondrial disorders like the one which impacted our family’s life, it will also get people talking about mitochondrial disease! With greater awareness, there will be more funding for research, and ultimately there will be a cure. So come out to The Ivy Buckhead on Sunday, August 6th, have a mimosa with us, and support this wonderful cause!

You can find more information, and even more important, you can purchase tickets here: https://www.xorbia.com/events/mimosasformito/2017 

Since this is our first event, spread the word and invite as many people as you can. We are also looking for items for the silent auction. If you have any items that you would like to donate, please email me at lauren.tristani@gmail.com. Together, we can make this an annual tradition to eat, drink, and raise money for a great cause!!

 

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.