A Year Later

May 21 will always be one of my least favorite days to think about. That’s the day my baby girl danced into heaven. I wouldn’t want to take her away from what she’s experiencing in heaven, but it hurts so much to miss her so badly every day. It’s now been over a year since I held her in my arms, since I got to feel that crazy curly hair and her silly giggles, and since she looked me in the eyes with a love she didn’t have to verbalize.

I continue to learn from my baby girl and I continue to cling to God to make it through. Over the past year I’ve learned how physical the pain from grief is. The week Addy died I literally couldn’t walk and had to have help because my legs and knees were so weak they couldn’t support me; it felt like I had run a full marathon and that recovery from it wasn’t coming (I could walk better in the days after a marathon than I could after Addy left me). My vocal cords have also taken a hit. I continue to have paralysis in my right vocal cord, but thankfully can still speak (just more scratchy sounding than normal-but I think it is my new normal). I live with a pretty constant lump in my throat, that feeling you get when you try to not cry. I’ve also found that frequent crying can lead to tear duct inflammation; I have inflamed and sore tear ducts about once a month, and it takes about a week for it to go away again. I’ve also found the human body can actually live on very limited sleep. Night time is still the hardest time, I struggle to fall asleep and stay asleep. Many days I’m functioning on 3-4 hours of sleep, it’s like having an infant but no baby to hold. The last thing that I ever thought grief would effect is my ability to have more children. Maybe it was happening anyway, but I’ll never know for sure. What I do know is I’m getting to enjoy some of the early symptoms of premature menopause, with my least favorite being night sweats (as if sleep wasn’t hard enough to come by as it is). I don’t share all these things for attention or pity. I Share them so that others will know how much it effects you on not just an emotional level, but it’s also a very physical level as well. Not that everyone will experience the same things I have, but regardless of what they experience, it isn’t just an emotional pain. The pain is also physical when your child dies. I’ve learned to navigate the emotional over the past year (to some degree it’s easier than managing the physical). I’ve had to harden myself so that I don’t cry at the drop of a hat, and I’ve also learned that I have to say “no” to a lot of things. It doesn’t take much for me to feel extremely overwhelmed by simple tasks, and start having panic attacks. The panic attacks are probably the hardest to navigate still. My heart starts racing and I just know in my gut that there’s something extremely important that I’m forgetting to do. It feels like it’s a life-altering thing that must be done and I must remember what it is. Once I finally convince myself there isn’t something life-altering that I’m forgetting, I can get control again. It’s pretty hard to convince myself sometimes, other times I can recognize what is happening and get through it quicker. With all the things that have changed in me over the past year, and all the daily struggles, I know it sounds like a pretty miserable life, but it’s not. Through all the pain and heartache that follows me everyday, and always will, there is also immense joy and laughter. My joy doesn’t come from anything this world can offer. My joy comes from the Lord and knowing that He understands my suffering, He has never left my side, even when I refused to talk to Him right after Addy died. He continued to pursue me and put people in my life that could help me navigate this new normal. He has restored my laughter and has given my life purpose outside of caring for Addy.

I was dreading the one year mark coming. I had two of my nephews spend the night the night before and I cleaned the house as the younger one followed me around leaving trails of food on my clean floors. Lol. We finished out the night with multiple games of Mouse Trap…which isn’t super fun when you have a 6 year old that’s an incredibly sore loser (but it’s not a game you can rig to make him win!!!!). We also talked about what Addy might be doing in heaven right now…we decided she’s not wearing a headband-her hair is wild and free, she might be flying around, she’s definitely running, she might be able to see us (or she might be so busy up there playing and praising God that she doesn’t, after all time is different in heaven) and she’s the same size she was when she left us. I think that was my favorite conversation with my youngest nephew ever. The next day I painted the shutters on our house (super random, but I needed our house to have a splash of color), we made chocolate chip muffins for breakfast, and my sister came over with the other nephew and niece. The plan was to give them the photo books I made for them (they have photos of just them and Addy), and then go do 18 acts of kindness for Trisomy 18. After we gave them the photo books things didn’t go as smoothly. It’s harder for kids to navigate their emotions and to know what to do with them. The youngest had made some paintings of Addy while I painted the shutters and was trying to finish them and tore a page. You would have thought it was the end of the world. He was so heartbroken over it and fixing the page didn’t make it better. Once he calmed down again we went out with the goal of 3 acts instead (for Addy’s age). We put a card with her picture (that was also the youngest’s idea) with $5 on a menu at Sonic and ordered some drinks, of course. After that we were driving to find our next spot and found in a neighborhood a “prayer post” in someone’s yard, so we put a Starbucks gift card with Addy’s card on it. Our last stop was the park where the kids played for a while and when we left we put another Starbucks gift card with Addy’s card on a park bench. What I loved about the final one was that it was a park that had been made for everyone, including those in a wheelchair. We finished out our day with dinner with the family and then a trip down the road to the cemetery. We put fresh flowers on Addalyn’s grave and had a balloon release for her. What was most surprising to me is that I only cried twice the whole day. I was expecting to be more emotional, but my focus was more on helping the kids get through the day. If I had spent it at home alone, which is what I wanted to do, I would have stayed in bed eating and watching Friends, and I’m sure there would have been a lot more tears. However, I was instructed that I must have a plan that didn’t involve lying around by myself. When I put the focus on helping others it makes it easier to navigate my way through my own grief. So, here I am on the other side of a year. We are now in the process of adopting and I can find joy and laughter in the small things again. I didn’t think I would ever be able to be joyful again. I was so angry with God, but through reminding myself of His promises and what I know about His character, I’ve grown closer to Him than ever before, and while I will never think any reason for Addy dying is a good one, I do know He is a good father. He is with me, He understands my pain, and He does have a plan for my life. While I’m here on earth I will continue to seek after His will for me until He calls me Home.

3 thoughts on “A Year Later”

  1. Wow!!!! What a testimony of who God is and how He can carry you through the worst year of your life and somehow make you stronger than ever before. I am in awe of the way you have embraced Him through this! You spur so many on, my friend!

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  2. What an excellent and painful share, you’re so strong to put this together. My wife’s best friend has a Trisomy 18 baby right now and she’s so precious.

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    1. Thank you. Our 26 months with our daughter were the most amazing months of my life. She taught us so much about love and treasuring every moment! If she needs any help finding doctors willing to help you can send her my way. I have a non profit called Hope for Trisomy.

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