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.

This slideshow requires JavaScript.

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.

No Parent Alone

friends quote

Over the past few months I have been able to connect with other parents whose children also suffer from mitochondrial disorders or have passed away like Graham. Our stories are often quite similar – healthy, happy baby and then out of no where, child begins to seize or developmental regressions occur, doctors then struggle to diagnose, and when a diagnosis is finally determined, the outlook is grim. Despite these awful circumstances that affected our babies, we cling to hope and are dedicated to raising awareness and fighting for our children.

Personally, it is helpful to connect with other parents who can comprehend what it is like to spend weeks in hospitals working with doctors to determine a diagnosis for their child’s condition. These parents know what it is like to watch your previously healthy baby no longer be able to sit, or even eat on his own. These parents know what it is like to fight for their child when doctors tell you there is no hope. It is a club that I hope you never join, but if you find yourself in a similar situation, know you are not alone.

I can’t help but feel God’s impact on forming this community for me. When I toyed with the idea of creating a blog with the intention of connecting with other families who wanted to see firsthand what it was like to lose a child, I was torn over whether or not I should actually do it. There were many questions and reasons why I shouldn’t do this, such as, do I have the time for this? I am a history teacher, not a writer. There are so many other bloggers out there, what makes my voice any different? The list went on and on, but I decided to do it for Graham. God pushed me to step out of my comfort zone to create a space where I can keep his memory alive. And through this, I actually connected with other moms whose children also suffer from Alpers! I also decided to make my Instagram account public to help with promoting the blog, and through that outlet, I also met other mito moms. I even had the chance to run into one of those moms while waiting in line at Michael’s the other day. After we met, I started to think of all the things that had to align for us to meet and it just blew me away. For example, we met on a Wednesday, during the work day. The only reason why I was able to go to Michael’s during the work day was because I wasn’t working. I wasn’t working because Carter was “sick.” I use quotes, because he really wasn’t sick, but he was sent home from school for a mild fever day before. I took him to the doctor to make sure he was okay, and he was.  The doctor believed there was an error in how the school took his temperature, but I decided to err on the side of caution and keep him home. By that afternoon it was clear, he was fine. He was laughing and playing and we enjoyed the extra time together. Since he wasn’t sick, I decided we should run a quick errand to return an item to Michael’s and avoid the weekend traffic. When we got there, the line was pretty long, and as we were waiting, the woman in front of me asked about Carter. As we talked about his age, his chubby cheeks, her grandbabies, what it was like meeting Santa, etc. the woman in front of her turns to me and asks me my name. Long story short, she’s another mito mom who found me on Instagram. What are the odds? I can’t help but feel God’s hand in that exchange. And He keeps doing it. He keeps connecting me with other mito families. Why? I think it’s because He knows we need each other. He knows what is in our hearts before we even realize it. He knows what will feed our soul and keep us healthy as we overcome these tragedies. I know this, because this is what I need the most.

I love all my parent friends. Anyone who is a parent knows what it is like to care and love a child with all your heart. You understand the happiness, the stress, the anxiety, the excitement, the worry, and the joy. It is easy to find a community of other parents who truly get it. And as parents, we always encourage each other and build each other up, which I appreciate daily. But as a parent who has lost a child, or to be a parent of a child who is living with any type of disease or sickness, we stand out a little. Each of us has our own story, yet we relate to one another. Our journey has been messy and complicated, which is why need each other. We get it, when sometimes it feels like no one else does.

It’s the Most Wonderful Time of the Year

Print

As we kick off the holiday season, I am conflicted with various emotions. I am excited to gather with friends and family and I am so eager to create new traditions with Carter. But I also dread another holiday without Graham. I think it is especially difficult for us, because this time of year not only reminds us of what we lost, but it is also a reminder of when things drastically changed in our lives.

Graham entered this world very early on November 17, which meant his first Thanksgiving and Christmas were spent in Northside’s NICU. The following year, as much as we hoped to celebrate a holiday at home, Graham was hospitalized on November 22, which meant we spent another Thanksgiving and Christmas in a hospital. When I look at this month on a calendar, I am flooded with memories of uncomfortable hospital chairs, monitors beeping, and worry. I am overwhelmed with sadness as I think back on those days.

And I know we are not alone. I am confident if you asked another person who experienced a loss, they too have a time of year, a month, or even a day, they dread. A moment when their entire world turned upside down. Ours just happens to be during the season we often describe as the most wonderful time of the year. And even though our hearts still ache as we remember those days, I am noticing a little excitement as we enter the holiday season and it is because of Carter.

Carter continues to bring so much light and hope into our lives. I am thankful for him and the chance to make new memories with him at home. But I want you to understand this – anyone who loses a child or a loved one, that hole from the loss never closes. For that reason, when you enter our home during the holidays, you will notice a holiday craft the NICU nurses made with his hand print; there is a stocking on our mantle for Graham, and within our holiday photos displayed, there is a photo of Santa visiting with Graham in his hospital bed. Even though our memories are in hospital rooms and very different from the typical family traditions, they are still the memories we have, and for that, we are still lucky.

But I do cherish the opportunity to take family pictures not in a hospital, and I look forward to making cookies with Carter, or having Carter cry when he meets Santa, and I am especially excited to wake up in our home on Christmas, with our little family under one roof making new memories together. Although our life looks very different from what we imagined, it is our story. But more importantly, it is God’s plan for us. He chose us to be Graham and Carter’s parents. He picked us to not only demonstrate God’s love for us, but to also show His goodness despite tragedy. He is using us to make a difference.

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

In the spirit of the holidays this year, we ask for your help. Help us honor Graham and fight for other children like him who are affected by rare diseases. By rallying together and fundraising for prevention and ultimately a cure, we can make a difference. Share our story. Tell others about God’s grace and goodness. Or, if you’d rather, support our cause. Donate to Graham’s fundraiser page, or better yet, give to our event. For more information, check out “Our Mission” page and find out how you can help us with our goal.

Brew & ‘Cue for Mito

brew-&-cue-for-mito-savethedate

We are so excited to announce our next fundraiser for the United Mitochondrial Disease Foundation and our Graham Collins Research Fund – Brew & ‘Cue for Mito. This event will take place February 10, 2019 from 1:00 – 3:00 at Monday Night Garage. Tickets will include a variety of beers from Monday Night Brewing, barbecue from Southern Fried Hospitality, and access to an amazing raffle and silent auction. All proceeds will help benefit our mission to further research to help doctors identify, treat, and ultimately prevent diseases like Alpers-Huttenlocher Syndrome and other mitochondrial diseases. We hope to see you there!

Tickets will be available January 1, but in the meantime, we are accepting donations for our raffle and silent auction. Similar to last year’s Mimosas for Mito, we hope to auction off gift certificates for family photography sessions, golf, restaurants, salon services, shopping, tickets to sporting events, vacation rentals, and other items like beauty products, clothing, jewelry, sports memorabilia, or anything else that you think will help us raise money. Please contact me at lauren.tristani@gmail.com if you have a donation or would like to volunteer in another capacity. We could never do this alone and are so grateful for all the love and support we continue to receive.

We are so excited to put on another great event that not only honors Graham, but also allows us to socialize with new and old friends and raise money to help in the research to one day prevent terrible diseases like Alpers’. By working together, raising awareness, and fundraising to help with diagnosis and treatment, we can make a difference. We can’t wait to see you in February!

Welcoming a Baby After a Loss

On May 30th, Carter Bennett Collins made his grand debut and we could not be more in love. Carter quickly settled into our world. He has met so many of our friends and family, he is accustomed to our routines like evening walks around our neighborhood, and he thinks his fur brother Franco is just the goofiest. Every day we thank God for this blessing and promise to do our best as his parents.

This slideshow requires JavaScript.

“Every good and perfect gift is from above.” James 1:17

But something is very different in our home. Even though he is the only child living under our roof, he isn’t our first baby. The firsts with Carter, were not our firsts as parents. When we left the hospital with only one baby in tow, and no other children at home to greet us, it would appear that we were clueless new parents who were about to be broken in by this bundle of joy. But we weren’t. We have been down this path before. The first time we gave him a bath, bottle, or watched him break out of his swaddle, were firsts with Carter, but not our firsts as parents. This isn’t the first baby to sit in our puppy swing, or the first to play in the nature activity gym. Carter isn’t the first baby to sit up in our frog chair. In fact, watching Carter sit in the frog chair for the first time, brought tears of joy, but also sadness because his brother Graham sat in that chair first.

Moments like this remind me, that Carter is loved in a very different home than most of the people we know. It is a home full of love, but also blended with happiness, sadness, excitement, and also grief. As I watch Carter in the frog chair, I imagine what it would have been if Graham were there. I imagine Graham helping Carter play with the butterfly toy, and watching the two of them laugh when Carter discovers the crinkle noise it makes. This is when I miss Graham the most. I wish Graham could kiss Carter, or I even wish for a moment where Graham becomes jealous of the attention a new baby takes from him. I wish Graham was here to make our life twice as messy, twice as crazy, twice as loud, and twice as happy. But he isn’t. And that is the reality of the world Carter is in. As a mom, I don’t want this hurt Carter. I do not want the differences in our home to make Carter feel any less loved, because that is not the case at all. But the reality is, with joy, there will always be a bit of sadness in our hearts.

Although this battle between happiness and loss is ever present in our home, one thing that is constant is our faith. When grief strikes, we are reminded to turn to God and ask for His help when we are struggling. When we look at Carter and our hearts feel as if they will explode, we thank God for this blessing He has given us. The scripture, “Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing praise,” could not be truer in our home. Carter’s smile melts my heart every day and I know we have a healthy son because of our Heavenly Father. But there are days when my heart hurts and prayer is the healing medicine I need. When I notice the grief weighing on my heart, I also use it as an opportunity to talk to Carter about his brother. We still have many photos of Graham in our house, and we chose to keep many of Graham’s toys, clothes, even some of the artwork and décor from his room. At first it was tough to see Carter in “Graham’s stuff” or playing with “Graham’s toys” or even looking at a room that looked similar to Graham’s, but we realize these “things” are great avenues for Carter to get to know his brother. It’s a way for us to talk to him about Graham and for us to share how special he was to us. These moments where we can talk to Carter about Graham are more special than anyone can know. But as much as we love sharing our Graham memories with Carter, we love watching Carter become his own silly self, making his own stories for us to share.

That is the next adventure for our family and it is one that I am so excited to take on. God chose us to be Graham and Carter’s parents and I am forever grateful for that. I know this journey of motherhood will be complex, but with God’s help, I will do my best for both my boys.