Tag: god

How has it been eight years? 

It’s hard to believe it’s been eight years since we last kissed our Graham. Eight years since we watched him take his last breath. Eight years since we said goodbye for now. Eight years living and surviving with our grief. Eight years.

Anniversaries like today stir so many emotions for me. And when I’m overwhelmed, I sometimes like to disconnect and slip away, which we will do later today. I also find it therapeutic to write out what I’m feeling. When I shared with Brandon what I wrote, he encouraged me to turn it into a post, so here we are.

What have I learned? 

I like to think these last few years have made me wiser. Here are few takeaways:

Grief comes in waves. Sometimes it’s a wave that truly sucks you under and you are fighting against a raging rip current to get up. Other times, it’s a small splash that you easily jump over. My advice to anyone experiencing their own grief is to take it day by day, and feel whatever it is you are feeling. And when you are knocked down, there will always be someone throwing you a lifeline when you need it. Always.

No matter how many days, months, or years pass, you will never get over this grief. Give yourself grace as you accept that things will always be different. Different isn’t necessarily bad, it simply means the life you have after your loss will never be the same as before. And that’s ok. 

It’s also ok to not be ok. For me, it’s easier to be strong and help others, and I’m slowly learning that if I don’t take the time to refill my own cup, I won’t survive. It’s ok to tell someone you are struggling, it’s ok to decline a dinner invite and spend the evening recharging. It’s ok to be selfish and do what you need to do so you can find a way back to being “ok”.

Love big, worry less. The most important change I have experienced is a new outlook on life. I try to appreciate even the littlest moments and never take them for granted. Life is a gift, and every second we have together is precious. We need to appreciate those moments and forget about the stress. Some days this perspective is a struggle, and when I find myself consumed with worry, fear, and sadness, I try to find gratitude. And when all else fails and the darkness is creeping in, I pray. 

Where am I now?

I’m living life to the fullest in our post-Graham world. I have learned to describe my life in two parts – my life before Graham passed, and the years after Graham. Losing him isn’t anything you get over. It’s not like a bad breakup where time and therapy help you recover. Instead, with a loss, you simply change. And you still need that therapy! It helps tremendously. But if I’m completely honest, I still carry a lot of trauma from our hospital stay. I wrote a post about this. It’s a long one. And it’s heavy, more so than what I like to publish, and it’s real. It’s a large part of who I am today, for better or worse.

I am incredibly lucky to have two healthy, silly and sweet boys who are my whole world. I do not take this for granted, and never will. I have also learned to not to worry about every little thing. You’d think after losing our first son, we might be those helicopter parents who try to control each and every piece of their lives, but I’m not. If anything I learned I cannot control what happens to my children. I can take care of their daily needs; I can help them learn; I can take them on trips and buy them all the stuffies, legos, and Pokemon cards; I can do so many things for them, but I cannot shield them from things out of my control like sickness, accidents, and tragedies. I can help them learn to trust God and to pray when life is hard. I can teach them to love big and to be kind. I can give them my whole heart.

We talk about Graham, loss, and heaven in our house. There are photos of all our boys in our home; there are Christmas stockings for all of us in our house, including Graham. The boys know when they see a red bird that it’s their big brother checking in on them. They know when things are tough, we pray to God and ask their guardian angels to watch over them. I might not shout this to the world, but it’s something I carry with me every day. I am a mother to 3 sweet and silly boys, always and forever.

What are my hopes for the future?

I simply hope to love big and show how good God can be. Our world is often divided; there is so much conflict, tension, and bitterness when you open up social media or turn on the news. It can be very dark. And I want to see the light. I want to see the joy in our world; to see the excitement and the good in our lives. I want my children, my friends, the people I work with, and anyone I interact with to see the possibilities when we look for the good. Let’s stop and smell the roses. Let us focus on what matters most – our families, friends, and God. Truly that’s all that matters.

I’d love to envision a world without sickness or death; without mothers losing their children; a world where a brother doesn’t grow up never meeting his other brother. I am also a realist. I know that life will always include tragedies. There are fires, cancers, hurricanes, and unimaginable loss. It’s not because of God. This world was never perfect. Regardless of how dark it can be, God told us if we see the light in Him, we will always have a bright future. I believe in miracles and I know there will be death, hardships, and loss. What matters is how we handle those moments and how we find God in the day-to-day.

Lastly, I hope Graham knows I love him dearly; I hope he’s proud of us. My final words are to Graham. You are never forgotten and always missed. I love you forever and we will see you again.

Trust God, especially when remembering the harder days

Bear with me, as this has been the hardest post to write and might be difficult to read. I wanted to write my memories of these difficult days we experienced with Graham. Even in the darkest of hours, God is always with us. He is the light to help us find our way.

Eight years ago, we were discharged from Children’s Hospital of Atlanta on January 24. Since November 22, we spent every night in a small hospital room, taking turns on a very uncomfortable couch attempting to sleep, trying to quiet our busy and scared brains, and simply getting lost in our prayers for our Graham. I am a positive person by nature. I see the best in everyone and everything, and this was a horrible time in my life. Even as the years pass, these dates still trigger deep memories.

What started as an ordinary Tuesday in November, quickly turned into a nightmare. We celebrated Graham’s first birthday a few days earlier on November 17. He was born prematurely at 24 weeks, and spent 105 days in the NICU, yet he was perfectly healthy despite his early arrival. A true miracle! We simply had to adjust his age and work with a few specialists to ensure he continued to grow and reach his developmental milestones. Given his history, we were always cautious when it came to his health, which is why on the morning of November 22,  when I noticed something wasn’t right, we decided it was best to stop by the ER on our way to a follow up appointment. I truly thought once he was examined they would discharge us and we’d all laugh at my silly panic. That quickly changed. Once he was admitted, Graham experienced a severe seizure that did not stop. Doctors, nurses, and all the other sounds in that hospital room screamed to us that this is not ok. Brandon & I were rushed outside and told to wait. We knew this was not ok. After this, everything is a blur. We let our friends and family know what was going on and to pray. I felt completely and utterly helpless. We had no clue what the day would bring. And this is how we spent the next two months.

Graham never recovered from these seizures. He continued to have unrelenting seizures which forced his doctors to place him in a medical coma. He was never the same after this. Yes, his eyes were open, but they were glazed over and lacked understanding. I never saw him smile again; I never saw the joy in those eyes again; I was never able to feed him again; I never heard him laugh again. We never played again; he never held my finger again. In many ways we lost Graham on November 22. Now we had to prepare for what’s next. Problem was, no one knew what that would be. 

Countless tests, diets, treatments, and services were provided. We left one ER and headed to an outpatient program at a different hospital with the hope we could build up his strength and head home. In this program, due to a new medication they gave him for his seizures, he worsened and we had to move him into the ICU as his body continued to deteriorate. 

We spent Graham’s first Christmas at Northside NICU where we knew he was growing and his body was getting stronger every day. Sure he was only 2 lbs, but he was thriving for a micropreemie. We were overjoyed. It broke my heart that we could not spend the night with him at Christmas since they did not allow families to spend the night in the NICU, and I was ok that this would be our only Christmas apart. Now it’s the present day, and this is Graham’s second Christmas and we are once again forced to leave him at the hospital alone because they did not allow parents to sleep in the pediatric ICU. To put it bluntly, my momma’s heart was crushed. It was the first night I slept in a bed since November 21st, which was needed for my exhausted body. Mentally I was distraught. Unlike the year before, the hope and optimism for our future was bleak. I couldn’t  wait until we were allowed back to see him again and see if he was ok. Eventually he recovered from a critical state and moved to a pediatric room where we once again waited to see what was next. Shortly after the new year, we finally had an answer for his condition, an awful mitochondrial disorder that caused his liver to fail. They needed us to change hospitals once again to monitor his liver and assess what’s next. 

After 2 months in various hospitals, waiting to understand what is wrong with our Graham, we had an answer and needed to prepare for the inevitable; Graham was in liver failure due to a genetic disease which has no cure. It progressed to the extent where all we could do is make him comfortable. We spoke with hospice to learn how we can take care of him at home and how best to make him comfortable. We might have days, weeks, maybe months. No one knows.

In my heart, I knew he was declining quickly and all I wanted was to go home as a family and spend what time we had left with him. To take him home to see Franco. To get away from the sounds and the smells of the hospital. As we were getting ready to leave, Graham’s oxygen levels continued to decline. To be honest, I wasn’t even sure if they would let us leave, and thankfully they did. Everyone knew it was only a matter of time and they wanted us to have this moment to ourselves, not surrounded in the sterile hospital environment. 

Once home, hospice met us again, explaining how to give Graham his feeds, how to administer his medicine and more. She told me she’d be back in the morning, and she gave me a look that shared things are progressing quickly. We made the most of this horrible reality. We cuddled in our bed and held Graham for as long as possible. Graham’s grandparents said goodbye and gave him kisses. Franco laid right by his side without getting up for food, treats, or any of the other silly things he’d jump around for. Franco understood where he was needed. Brandon & I held Graham as we watched him take his last breath. 

I’d like to say no one prepares you for this moment. However the hospice nurse actually did share some practical advice. She told me once he passed there would be blood in his body and it might come out, and sure enough it did. I only say this because no one talks about these little details. And this is such a vivid memory of mine. I was so upset when I saw it, not out of fear rather a ridiculous concern that I did not want the blood on his clothes. You’re probably thinking why does that matter, so let me explain.

Shortly after he passed, my mom helped me change Graham into this gorgeous white outfit I purchased at Bloomingdales earlier in the week. Yes, I went to the mall to buy an outfit to bury my son in when other parents are picking out regular church clothes. The sweet lady asked if I was looking for anything special, and I’m just browsing. How could I tell her the truth? That’s the reality I often face. I can never explain details like this because I end up comforting a stranger over my loss, which is silly right? When the blood came, I wasn’t scared, I simply wanted to protect Graham’s clothes, which symbolized how pure and holy he was. Because that’s the truth. In this moment it mattered to me what he wore. Graham was an incredible angel baby and I needed to do what I could to protect him at this moment. 

Looking back, I think it was also my attempt to control something where I felt so lost. We sat in our bed, holding Graham and waited for the funeral home to arrive. They took Graham’s body away, and then we collapsed. We were still in our home and no one outside these walls knew what just happened. I can’t even begin to describe how isolating and devastating it was. I also felt a giant sense of relief. I feel horrible admitting this, and it’s true. I was relieved. For the last two months, I watched Graham decline. I watched him endure horrific and useless tests and procedures; I watched him slowly die every day, and now he was gone. His body was not suffering; his body was no longer sick. He was finally healed and in Heaven. It continues to break my heart that through loss he was finally saved. I prayed for a miracle. I bargained with God and I did everything in my control to help Graham, yet nothing worked. I also prayed for peace and on that night in January, I finally felt an overwhelming sense of peace. God filled my heart with an understanding that Graham is ok. 

For the last eight years, I have continued to pray for strength and peace as this is an unimaginable loss. Every date whether it’s November 17, November 22, December 25, January 24 matters. I cannot ignore them because my life changed drastically on these significant dates. I think I’ll always need to ask God for help because what we experienced is not something you ever forget, nor should we. God continues to show us we are loved; that we are ok. He continues to bless our family as we welcomed Graham’s little brothers over the years. We have new days to celebrate like March 24, May 30 or other days we can always look forward to like June 28 or December 28. I will always be grateful for the joy we continue to find after our loss. I will never understand why this happened to us, and I cannot dwell on this question. I can look ahead and trust that God’s plans are always bigger and better than mine.