One year. One year without hearing her belly laugh. One year without watching her dance to Pentatonix and Home Free. One year without our favorite nurses and therapists in our home. One year without weekly trips to see Dr. Lemler and the cardiology clinic crew. One year of not filling med syringes. One year of not fighting insurance companies for what she needed. One year of not hearing the incessant beeping of multiple medical machines. One year of not listening to her FaceTime conversations with Grampa. One year of not hearing her beg to take Max to Sonic. One year without silly hand. One year of not singing “Your Special” song every night. One year of not watching her go super fast with daddy on her power wheels. One year of Emma not telling me that she loved me. One year without Emma and Oh what a year it’s been.
The year has gone by surprisingly fast. Some days it seems like years since I have heard her laugh. Scott and I get asked a lot how we are doing? Most of the time you will hear us say that we are doing fine. And truthfully, that’s the case most days. We find ourselves settling into the monotony of life. Over the course of the year, we have learned some things about grief, learned some things about ourselves, and learned even more how to cling to our hope. Here are some things we have learned:
Lesson 1: People continue to live their lives. The sun rises and the sun sets. People continue to get up and go to their jobs or take care of their children. As they should. While Scott and I were left to grapple with what our lives would look like, what our new normal would be. To be honest, that was harder for me than I thought. Scott went back to work and I was left at home. I was left in the quiet. That deafening quiet that you long for as a parent, but I can promise you that you hate when it becomes your daily reality. For a while I was busy with getting our new house settled, but when the dust settled from all of that, I struggled with finding my place. I tried subbing at some local schools but didn’t really connect like I hoped. You see, when your life is consumed with caring for an individual, in the ways that I cared for Emma for years, it was like having an essential part of my body removed when she passed away. There have been days that it hurts to breathe…..that physically getting out of bed is a struggle. There have been many days that I (and Scott) have put smiles on our faces and attended various events in the midst of our grief. However, through it all, I’m slowly finding where I belong, so to speak, and Scott is settling back in to his norm and well, the world is slowly starting to turn again.
Lesson 2: Scott and I were reminded about the importance of marriage. Let me delve into that. Growing up my parents always made it apparent to my brother and I that after their relationship with God, the second most important relationship they had was theirs. This is how God designed marriage and when it works this way, it is a beautiful thing. In all transparency and honesty, Scott and I struggled with this while taking care of Emma. Emma’s life and all of her medical problems created a situation in which her care had to become a top priority. While neither one of us ever regret the ways in which we cared for, there were times in which we did not take care of our marriage. I am thankful for my parents who forced us at times to step out of the hospital or take a vacation to create an environment where were able to reconnect and focus on each other. All of this became even more important after we lost Emma. You see, there is no one on this earth. I repeat no one who can begin to understand how I feel. The person who can come close is Scott. Through the loss of our child, we had to rely on one another, open up to one another, cry with one another, and laugh and reminisce. I can say that I am truly blessed to have Scott in my life for many reasons and I can’t even begin to imagine what my life would be like without his support. I would encourage all of my married friends and family to make your marriage a priority. Find time to cultivate your marriage, to strengthen your marriage, and to put your marriage in the place that it should be. I hope that you never have to experience the hardships and pain that Scott and I (and way too many other families) have had to face but I promise that if you do, having that partner makes a world of difference.
Lesson 3: Grief looks different for everyone. Some people need to cry. Some people need to become reclusive. Some people need to make frequent visits to the cemetery. Some people bottle everything up inside. Some people want to constantly talk about their loved one. Some people are a combination of these…..and guess what? It is all ok! We all have the right to grieve how we feel is best. We have had people concerned about the way Scott and I are grieving. Let me make something very clear, Scott and I have been grieving since before Emma was born. For six years Scott and I loved our child and we cherished the moments that we had with her but we also grieved her. And that may sound odd to some of you out there but it is what worked for us. We grieved the normal that we were not going to have. We grieved the fact that our child was not going to learn how to ride a bicycle, we grieved the fact that we might never hear her say our names. We grieved the fact that we wouldn’t get to take her to see all of these wonderful places that we hoped we could get to. We grieved the fact that she might never know what it was like to not experience frequent doctors’ visits, pokes, and hospital stays and yes we grieved the fact that we would probably never see her make it to her teenage years. You see, we are fairly private people when it comes to our grief. But the odds of you seeing Scott and I in tears over Emma is very small. That does not mean that we do not grieve or shed tears. You do not see the solo car trips in which tears flow as some of “our songs play on the radio.” You do not see the random days when a picture or a memory triggers a good cathartic cry. Please don’t EVER judge the grief of bereaved parents. You may think you understand, but your “advice” is not wanted or needed. I will tell you what you CAN do. You can offer support, a random card or text, telling them a favorite memory of the person, or literally just listening.
Lesson 4: God and HIS promises are enough. I can’t tell you how many times well-meaning and extremely kind people tell us that we are inspiring and strong. These words are uplifting and so very humbling and yet at our core Scott and I are not enough. We are not strong, we are not perfect, we are not inspiring but I can tell you with every fiber of my being who is. We serve a God who has carried us through our darkest moments. We serve a God who has been faithful when we are weak, who stays stays strong when I faulter and who has never left our side in this journey. We find our joy in HIM and HIS promises and we know without a shadow of a doubt that our sweet girl is finally whole because of him. That doesn’t mean that we haven’t been sad or angry or hurt, but it means that through it all we have a hope and that hope has carried us through. For Scott and I we relied heavily on our faith. We coveted prayers from people and we were comforted in the fact that we serve a God who has our best interest at heart even though that might look different than what we thought .That’s what worked for us that’s what helped us as we faced new daily challenges, embraced the hardships, and worked on focusing primarily on the blessings. And it’s OK to get angry. It’s OK to feel overwhelmed and lost and sad. That is so normal feel those things, so cry, scream, hit a punching bag, or whatever but don’t let it overcome you.
Lesson 5: It is so important for us to remain active in the CHD community. When Emma was diagnosed with a CHD, we joined a club that no one wants to join; however, that community became extremely important in our lives. The doctors, nurses, therapists, social workers, child life specialists, other hospital staff, and CHD families have become family to us over the last seven years. It is important to Scott and I that we stay active at the hospital and in the greater CHD community. We have opinions and advocacy to share, and support and encouragement to give.
“The death of a child is so painful, both emotionally and spiritually, that I truly wondered if my own heart and spirit would ever heal … I soon learned that I could help myself best by helping others …” Barbara Bush
Lastly, Scott and I want to send a big thank you to all of our family and friends who have stood beside us this past year. We are thankful for the prayers, encouraging texts/messages, and support. We continue to press forward, remembering to find JOY, share Emma’s story, and finding ways to give back. So, feel free to share your favorite Emma memory below. Those memories will bring us some much needed smiles and laughs.
God is good! All the Time! God is good!