(Just as the title suggests, this is going to be a pretty deep blog on the topic of child death and what comes of it as life moves forward.)
For those newer to my blog or who haven't heard my story yet, I had two sons, Luke and Isaiah. Both of them had a genetic disease known as GM1 Gangliosidosis Type 2 that destroyed their bodies from the inside out, ultimately killing them both in 2018 four months apart from each other. They were 10 1/2 and 8. Life doesn't stop for anyone and our family (My husband, daughter and I) had to keep living in spite our tragedy.
My husband and I had to accept the fact that we were now a one child household. Much to our surprise, I found out I was pregnant February of 2022. It wasn't planned but a very welcomed gift. June Marie Ackerman was born September 24th, 2022, bringing our family count up to two children here and two in heaven. It was a bit of a rough start for June due to her being on the small side when she was born and having jaundice.
The thing to know about rare disease mothering and rare disease life is even after your child passes, it will forever be apart of your life. Those years of trauma and survival come back in ways you wouldn't expect. When June's jaundice was only getting worse, the Dr made a judgement call to have her in the hospital for a night under the Mikey Light. I was fine with it at first until it came time to leave, then a switch went off in my brain. When one of my boys were in the hospital, I was usually in there alone due to my husband's work being out of town or one of us having to stay home with the other kiddos. The night time was the worst with dropping stats and Drs and nurses running in and out. I remember standing by or holding them down so they could do tests or emergency procedures to keep them stable. All of those feelings of hopelessness and fear came rushing back in years later and I started to panick.
I started crying and clinging to my husband, begging him not to leave me alone in the hospital overnight. The very thought was unbearable and in that moment, I knew I couldn't get through a night alone watching my baby under a light and not being able to touch or hold her. My husband agreed to go with me and calmed me down enough to be presentable to the staff at the hospital for check in. The hospital stay was stressful, but I wasn't on edge the whole time like I used to be.
After that, anytime June would get sick or have a slight issue, my mind went straight back to overthinking and trying to do anything and everything for my boys' survival. All of the instincts came flooding back and the worrying. When she didn't crawl when other babies around her were, my mind was gripped with the thought of maybe I doomed my baby to the same fate as her brothers. Every little thing brought the debilitating thoughts of doom and death to the surface.
I figured there would be some things that would come up, but I didn't know I would be reliving the trauma over and over again each time June got the sniffles or when she cried at night. My mind knows she's beautiful and healthy little girl, but my heart plunged me back to the days of little to no sleep and questioning everything that's happening. It's enough to drive a person mad, and some days, it does.
Watching my 10 month old daughter army crawling around our living room now, it's an incredible feeling but it's also such a mixed bag of emotions. It's a relief but I also look back to her brothers and regret that my boys can't be here for her. Getting through days isn't as easy as mind over matter but I have to decide to wake up everyday and embrace the fact that God gave me a miracle to love while my boys wait in heaven for us. The trauma comes whether you like it or not, but we have to decide not to let it steal away from the moments of today. This takes a lot of will power, courage, and prayer: some days I do great and other times I fail. All I can do is try to keep myself in the present with my girls while still loving my boys and their memory.
That's it from me this week. Thank you for reading and I'll see you next time.