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.

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

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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

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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

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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

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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.

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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

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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.

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“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.

Pregnancy After a Loss

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It’s been an exciting spring in the Collins’ household as we prepare for the arrival of baby Carter Collins. After our successful transfer, we tackled many items on our to-do list. From nursery preparation, to tying up loose ends at work, to enjoying quiet date nights before the baby arrives – we have been busy! Although it is quite satisfying to check things off our baby prep list, it’s also been an emotional time for our family as well. We’ve experienced everything from happiness to fear, which I think is common after the loss of a child. Not to mention, my pregnancy with Graham was anything but normal! I think many women who experience miscarriage, stillbirth, or an infant loss share similar feelings. The pregnancy is welcomed, but our grief and worries often overshadow the excitement. When Brandon & I struggle with fears, we often pray. Philippians 4: 6-7 reminds us, “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” When worries creep in, I remind myself to stop, thank God for all that He has done, and pray for peace over my anxious heart. In those moments, I am reminded that Carter is a child of our Heavenly Father, and since he is in God’s hands, there is no need for me to worry. It’s not always easy given our past, but it does help knowing that Carter has the best brother and his Papa T looking out for him as well.

In the midst of our fears, we made sure to celebrate this sweet baby. We put together a pregnancy book, something I never did with Graham since he showed up so early. Brandon was able to capture countless bump pics to document our journey, we took a babymoon to New York, and our friends threw us the most thoughtful sprinkle. Baby Carter is loved by so many and for that, we are so thankful. I know many women who experience similar fears as us, let that dominate their experience, and if that is what they want to do, then that’s ok. But I wanted to make sure that this baby knows even when we were afraid, we were also so excited to meet him.

I have also struggled with the inevitable comparison of Carter to Graham. I am so excited for Carter to get here, but I do worry about comparing him to Graham, and vice versa. I know every parent probably shares a similar concern when expecting their second child, but in our case, I can’t help but feel it’s a little different. I want to make sure to balance how we honor our first born Graham, who we lost, without it affecting our second child Carter, who is alive, in a negative way. What I mean is, I don’t want Carter to feel like he can’t live up to this memory of Graham, and I don’t want Graham to feel left out or that Carter is a replacement by any means. I know these concerns might sound silly. As I type it out, I can’t help but think how absurd I sound, but I often find myself worrying about this. Carter will be able to do things Graham never did – he’ll run, talk, even hug and kiss us. And as he grows up, he’ll give us memories that Graham never can. But Carter will also be able to talk back, break rules, disappoint us even. He’ll behave like every other child and teenager, again something Graham never can. Even though they are both our children, the experience raising them will be vastly different. I pray that Graham and Carter know we appreciate their differences and love them both equally.

As you can see, these aren’t the typical fears and concerns most expecting moms face. But at the end of the day, all that matters is we are having a baby! Sometimes it’s hard to celebrate and shout out because of our past, but I remind myself, “Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland” (Isaiah 43:18-19). This is God’s new plan for us and we must rejoice in it. And as for our fears for the future, I know everything will fall into place as God continues to lead the way.

Our Journey to Have an Alpers’ Free Baby

Brandon & I are excited to announce we are expecting an Alpers’ free baby in June! We are beyond excited, and of course grateful for this new addition. It’s been a tough road to get here, and we know that Graham was with us every step of the way. As I researched our options and the process available, I tried to find people in similar situations which at times seemed impossible. And even when I did connect with a few women through social media, we all agreed that we felt like most people didn’t understand this process or what it was like for us. I decided to write a post about our experience to hopefully help others who might feel alone in their journey, but also to educate others who are simply unfamiliar with genetic testing and infertility treatments. I must warn you, this is a long post, but I think it’s worth sharing.

The conversation for future children began immediately after the doctors diagnosed Graham with a rare genetic disease. A genetic counselor met with us that day to explain our options for future family planning which seemed rather premature since it was the last thought on our mind as we grasped the reality and severity of Graham’s condition. But what she shared with us did become an important part of our new normal as carriers of a rare disease.

To keep it simple, this is what the genetic counselor explained to us. Brandon & I are carriers of two different variants in the POLG gene that caused Graham’s condition. These mutations cause Alpers’ disease. We know the life expectancy ranges from 3 months to about 10 years, and in our case, Graham passed away 10 weeks after his first symptom, which led doctors to believe the variants we carry are probably more progressive than others. These mutations are recessive, which means the likelihood of a child inheriting these affected genes from us is 25%. Even though 25% may not seem that high of a number, when you think of the severity of the disease we carry, couples like us, who conceive naturally, face a terrible risk.

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But there is one process that can reduce the risk to less than 2% called IVF-PGD. Preimplantation genetic diagnosis (PGD) is a procedure used prior to implantation to help identify genetic defects within embryos created through in vitro fertilization (IVF). This prevents certain diseases or disorders from being passed on to the child. IVF-PGD begins with the normal process of IVF that includes egg retrieval and fertilization in a laboratory. PGD involves removing one or two cells from the embryo, then the cells are evaluated to see if there is a problematic gene present in the embryo. Once the PGD procedure has been performed, the embryos free of genetic problems can now be used for a transfer. The optimal accuracy of PGD for a single gene disorder is 98%, which is pretty incredible if you ask me. After doing much research, we decided this was the best fit for our family and began our IVF journey.

I’ll be honest – before this process I knew nothing about IVF except it helped women who could not have children have children. I thought it always worked, I knew it was expensive, but assumed insurance covered it, and had no clue what toll it took on your body. I quickly learned how naïve I was.

We met with our IVF doctor in February of 2017. It was an informal meeting to explain to us the process, to complete the remaining blood work for genetic testing, and discuss the financial cost, which is probably the most overwhelming component, but it is definitely worth every penny if it can spare us the pain we experienced in January. We were told we were ideal candidates for IVF since we conceived Graham naturally without an issues. We left the appointment confident and determined to make this work for us.

The next step involved creating a probe specifically for the genetic mutation Brandon & I carry. Since we were able to send off my DNA, Brandon’s DNA, and even Graham’s DNA, the genetics group was able to create the most accurate test possible. The probe was completed in April and now we could move forward with the IVF process. At this point I discovered IVF treatment or preventative genetic procedures like PGD are not covered by my insurance. I was shocked. After doing more research and investigating, this isn’t unusual. Unfortunately many employers and our lawmakers do not understand the necessity of tests like this for families like ours which is why there is limited coverage. Most families who decide to move forward with IVF for infertility or even genetic purposes have to pay for the treatment out of pocket. I truly believe this is unfair and hope over time this changes. I did my best to educate my employer on the necessity for coverage and was somewhat successful in changing our policy to now provide partial coverage for anyone who wishes to go through infertility treatment, which is amazing! But I did not get coverage for the genetic component. As grateful as I am that some IVF coverage was awarded, I hope as more people like myself share and educate the public about the importance of preventive genetic procedures this changes.

Once coverage went into effect, we were now cleared to begin. June was a whirlwind of appointments, regulating what I ate to help ensure the best egg quality possible, and waiting for my body show it was ready for treatment. After several days of shots, pills, and patches, we were ready for the retrieval on July 4. Our doctor only retrieved 11 mature eggs, which I am thankful for, but we knew the odds were not in our favor in this process, so we hoped for more. As I lay there trying to process the news and in pain from the surgery, I overheard the doctor reveal to another couple who just entered the recovery room that he was able to retrieved 18 eggs from her. I remember feeling jealous and I also remember feeling like a failure. My body failed to produce the number of eggs we hoped for and I didn’t know why. I know it was not a rational thought, but that is the reality of IVF. Women put so much pressure on their bodies to produce a certain result, and when it doesn’t happen, you feel like you failed. It’s awful. To make things even worse, the retrieval hurt. Some women are back on their feet working the next day, but that was not possible for me. It took several days before I felt comfortable just walking around my house, but eventually I started to feel like myself again.

As I my body began to heal, we waited on the results. On July 5, we received the first of many phone calls with results on how many fertilized, if the embryos were growing, etc. My heart broke when I received that first update. Only 4 of our 11 eggs fertilized! We were devastated. We hoped for at least 10 embryos to make it since it would give us the best chance at having at least a few healthy embryos. I had a goal in mind from all my research as to what the best scenario would be and we did not meet it – in fact, we weren’t even close to it. I was also upset by the cost for such disappointing results and I was angry. I was still angry at my body, now I was mad at Brandon’s, and I was frustrated at the situation we were in. It just seemed so unfair. After that phone call, I realized I had two choices – let the darkness in and throw myself a pity party or turn it over to the one who knows my suffering, knows my pain, but also knows the joy in store for us. After a good cry, I chose to pray. I chose to pick myself up and research what our options were and what to do next while waited on the results. We truly needed a miracle for those four embryos to make it Day 5, to survive the biopsy and freeze, and then test chromosomally normal and Alpers’ free. As I’m writing this, I am reminded once again at how many obstacles these little embryos had to face. And what did God do? He showed us His abilities. All four of those embryos made it Day 5 and were rock stars! They all passed the PGS test, which checks for possible chromosome abnormalities. Given my age and the fact this is a rather unnatural process, many embryos that mature are not necessarily chromosomally viable. It was a miracle that all four were healthy! And when it came to last hurdle, the PGD test, we found out of the 4, 3 embryos were viable and 1 was inconclusive. We have 3 possible children! I know that these results were only possible because of God. If you look at science, statistics, or even speak with our doctor, given our Day 1 results, it did not look likely we would have any healthy embryos – let alone 3. We took this as yet another reminder, no matter how far science and technology advance, God plays a HUGE role in making all things possible. Without Him, it is not.

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It is now August. It took that long for my body to heal and that long for the results, so now faced the final phase of the IVF process – transferring one of our embryos. Once again I had to prepare my body for the process, eliminate sugar and stress as much as possible and wait for the perfect window to transfer. There were many shots and pills to help with the process, and on September 15 we transferred one perfectly healthy embryo. Despite all the advances and gains in medicine, when it comes to the transfer process it sometimes works, and sometimes it just doesn’t. Our doctor told us upfront for a woman my age, I should expect a 70% chance of a successful transfer. Once again we found ourselves in a situation out of our control. This was in God’s hands – not ours. While waited to see if the embryo “stuck” we tried every old wives tale like eating Brazil nuts, drinking Pom juice, and my favorite – eating french fries from McDonald’s right after the transfer.

We also prayed a lot. A friend shared a set of prayers for the two week wait, which was incredibly helpful. Most of the prayers reminded me to hope in the Lord, that He is for me, and nothing is impossible with God. These reminders were much needed over the next 10 days. On the morning of September 25, I went in for the first blood test to see if I was pregnant. That afternoon my doctor called and shared that my numbers were perfect! I was pregnant! As we celebrated this milestone, we realized we weren’t out of the woods yet. Your numbers must double over the next two days, for the next week, to indicate that it is a viable pregnancy. So every two days, I went back to the office for more blood work, and waited for the results. After another week of tests, we moved forward with an ultrasound to confirm the pregnancy. And then after that, we waited to see heart rate and determine viability. We finally “graduated” from our IVF practice on October 19 successfully pregnant with an Alpers’ free baby!

I share this story not for sympathy, or even praise of our strength. Honestly, I share it so others understand what it might be like for their friends, family, even acquaintances who embark on the IVF or IVF-PGD journey. We are lucky, so incredibly lucky that this worked out for us, but to be honest, it doesn’t always end that way. I did not understand this until I was in the thick of it myself. So I hope our story can educate more people on how beautiful, yet truly tough this process can be. I also share this story so that others who are like us, realize they are not alone. For those families who carry a genetic disease, I hope you realize there is a possibility to have a child who is healthy and free of that disease. And although the road may be difficult, it will be worth it. Once again, my faith is stronger because of experience. My relationship with my husband is deeper than ever. And most importantly, we are expecting an Alpers’ free baby! God is so good!