I began documenting our story in this blog, and today I shared it online with friends and family.
I share in hopes of supporting others going through the same thing. This is the kind of information I was hoping to find online & it's not really out there. I found bits & pieces in various forums, but I had such a hard time finding complete stories online, especially since so many women are pressured to terminate, that I wanted to share my story here, to give other infantile polycystic kidney disease moms an idea of what lies ahead.
I share because I have felt so comforted when others shared with me. I just had another mom from church over. She had 2 babies in a row (her first 2 pregnancies, actually) with another genetic disease & each died at around 22-24 weeks along. She shared her story with me and then also invited me to read her online journal which chronicled everything from start to finish. It was really comforting to hear her talk about it & to know that she fully understood what I am going through. To be completely honest, it was actually kind of hard to read the online journal, especially the ending where she discussed the labor & delivery & funeral, but even that was still strangely comforting, too.
My story is hard to write sometimes, and I imagine the end will be the most difficult to write. It may be hard to read. But that's ok, because this whole experience is hard, and I don't want to pretend that it's easy.
This blog is to share my story & share some of the more detailed information, like how much fluid I had, how far along I was, what baby's measurements are, how I shared the news, how the birth will go, what we'll do with baby's body afterwards...all those hard decisions nobody wants to ever have to encounter. If this is your reality, as it is mine, then these are the things that have to be thought about, talked about, decided upon, dealt with.
In all my online searching, I wanted to come across someone I could identify with. I wanted to know I wasn't alone on this road. I pray somebody would be able to identify with our story & feel comforted in that.
This is for my kids to see how Mommy dealt with this. They'll have a different perspective once they're adults. I want them to always remember this little brother/sister of theirs. I want them to read this when they are parents. Read and relive it and remember.
This is for me and Aaron. 20 years from now, I'm afraid my mind will be so full of other memories that I will forget portions of this one. If this diagnosis truly ends up being fatal, as is predicted, then we don't have a lot of time left making memories with this child of ours. I don't want to forget my baby.
This is for anyone whose baby has this disease & is looking for answers, or just looking for some sense of fellowship.
And lastly, this is also for anyone who wants to know how to minister to & pray for those going through a situation like this.