I was supposed to write this post several days ago to share The Allo Hope Foundation’s very first fundraiser ever, “Lucy’s Stocking.” Of course I put it off until the last minute. Today is Giving Tuesday and Facebook will match any donation sent to the Allo Hope Foundation on Facebook. But instead of focusing on asking for your donations, I just need to write about the incredible support I have been shown today.
I have actually been in tears on and off all day for two very different reasons. The first reason is that so many friends, family members, antibody moms and even strangers have shared our fundraiser and contributed to “Lucy’s Stocking.” It encourages me to tears because so much of this journey over the past few years has felt so isolating. Going through my pregnancy with Lucy and trying to learn how to advocate for her on my own was extremely difficult and isolating. The hard work of grieving a lost child is also something only I can do myself. Neither Josh nor my friends/family can do it for me. The loneliness of missing her in all the quiet moments that nobody else notices is overwhelming sometimes. It feels like nobody else sees the empty places where she should be.
Maternal alloimmunization is a disorder that is often overlooked and rarely noticed by the medical community, as many of you already know. There is a relative lack of funding and research compared to more well-known medical conditions. Even our babies who are attacked by our antibodies and struggling with HDFN are literally out of sight while battling for their lives in utero. And it feels like our babies aren’t always “seen” by our doctors either, especially when we have to convince them to provide the right medical treatment for our children.
Trying to help other families struggling with alloimmunization and HDFN can also feel isolating. Of course there are many other women who are helping too, but it’s devastating when I try my best to help another woman keep her baby safe and her baby dies. I grieve for her baby mostly behind the scenes as I go about my day, cooking dinner, wiping messy faces, preparing an English lesson but still mourning for this little life that has been cut short. So, in many ways this journey has felt like an isolating one, and sometimes the process of starting this nonprofit organization has felt like an uphill battle. Time and time again I have thought, “I am not equipped for this, I have too many faults, I am inadequate.”
But today I have seen the flood of support from so many people through our first fundraiser and it feels like I’m not actually isolated at all. I’m supported, I’m encouraged and I’m not alone in this fight for better medical care. Maybe our babies really are seen and the value of their lives is not missed. Thank you to everyone who has shown up for us and reminded us that we are not alone. We are not isolated or overlooked.
The other reason I have been crying on and off today is because I got yet another message this morning from someone I care deeply about that said, “There was no heartbeat on the ultrasound today.” Devastated. Flooded with grief for this family. Still in disbelief. Motivated to keep working and growing The Allo Hope Foundation so this doesn’t happen again.
If you would like to read about Lucy’s Stocking, you can find our fundraiser on Facebook at: https://www.facebook.com/AlloHopeFoundation/posts/123222952468227 or if you aren’t on Facebook you can read about our fundraiser on Mighty Cause here: https://givingtuesday.mightycause.com/story/Allohope
Or if you want to donate directly you can do that here: