Six Weeks Out

Today is the last day of July, which is Bereaved Parents Awareness Month. It also happens to be exactly six weeks since Milo left us. 

Grief is not linear. In fact, it feels like riding a rollercoaster with a blindfold on. Some days, we are at the peak. Others, we are at the valleys. The rest are a mix between climbing out of the trenches or plummeting to the depths. 

I'm grateful for all the resources our family has had access to: counseling, meal trains, books on grief, time off, family time, and more. These things have been absolutely necessary in these past six weeks, which I firmly believe is why we are starting to find our new 'normal.' 

In these past six weeks, I have had to do things I would never imagine. From sitting at a funeral home picking out a casket at 5 days postpartum amidst baby blues, to explaining over and over again to a 3.5 year old why her brother will never come home, to sitting in a monument shop picking out which headstone we want for Milo for eternity. These gut-wrenching things have been some of the hardest things we've had to do, but we are continuing to show up and do it. 

On a lighter side, we have also been trying to use our experience to help others. Since I was discharged from the hospital on June 20th, I have not heard from the hospital besides for a postpartum call on the 24th. Since then, I got a letter from them that had an opening paragraph of "Congratulations on the birth of your baby." and the letter continued to say they would love our feedback. Last Friday, Josh, Sarah Jean (our doula), and I met with the patient advocate to offer suggestions. I came home from the hospital with the standard postpartum folder filled with the infant screener pamphlets, the postpartum care book for mom AND BABY, the Postpartum Depression Screener that you're supposed to fill out each week that say "Weeks Pregnant/Baby's Age____" on the top. I went through the folder with sticky notes, and a highlighter offering many suggestions for changes to prevent another momma of an angel baby from going through this. I also found many resources to support nurses/doctors as well as recommendations for checking in with postpartum moms of loss more frequently. As Sarah Jean mentioned in our meeting, these steps could quite literally save lives. I'm so grateful that because we knew this was a potential outcome for our family, we were in a place to have this meeting and speak up about some of these unintentionally insensitive practices. 

I still have things I want to do to continue Milo's legacy. His ripples have only just started, but I have some thinking to do yet. Some of the things I'm playing around with are a Memorial Tree at Bukolt Park; potentially a fundraiser (down the line) for the SOFT Organization, Now I Lay Me Down to Sleep, or the Born Abel Organization; and more. I also plan to reach out to some hospitals as well and share the NEW AAP recommendations for caring for infants/children with Trisomy 13 and 18. You can read them here. I will admit, having these guidelines come out is HUGE for our trisomy community, however, I selfishly wish they would've came out a few months prior so we wouldn't have had to push so hard for doctors to see Milo's case as an individual. 

To any parents of loss, whether it's the loss of the hope for a pregnancy, a pregnancy, an infant, a child, or an adult child, I see you. Your pain is real, and nothing can truly take away that hurt. Do what you need to each day to survive, because some days truly don't feel like that's possible, but it is. Honor your baby however feels best for you. For us, it's through our Build-a-Bears, the octopuses he "gave" his siblings, looking at pictures of him, and visiting his gravesite. Remember they are with you always, even when it doesn't feel like it. Carry on their legacy. They deserve to be known, and celebrated. 

Thank you to our village as we've navigated this heartbreak. I truly cannot imagine how much more difficult this journey would be without you. We love and appreciate each and every one of you more than you know.