Stages of Grief - proceed with caution.

*Adult language ahead- I apologize in advance*

I know there are different stages to grief.. and I know that you can feel them in different order or even at the same time. Right now, I think I'm mostly stuck on anger, shock, and depression.

I knew when we got pregnant we were going to have challenges. I knew that we would have temper tantrums and we would have public meltdowns. I was nervous for the day he would start to walk and get into everything. Now.. that seems so silly. I would give ANYTHING to have him walking around making a mess in my living room. Instead he is losing his muscle tone and having a hard time with holding his head up. How is this fair? How is this ok?

Tay-sachs is rare.. really rare. I read somewhere 16 babies are born in the US each year with tay-sachs. 16. Out of how many babies each year? Greyson is one of those 16. And that honestly pisses me the fuck off. How is this his reality? HOW is this happening to my child? That means Adam and I both carry the dominant and recessive gene for tay-sachs and we BOTH passed the recessive gene to Greyson. If we ever were to have any other children- they have a 25% chance of also having tay-sachs as well. 50% chance of becoming a carrier. I don't like those odds.

We are also incredibly frustrated with the process of getting help. We need help with medical bills, palliative care, adaptive equipment, and getting things in process. There is no healing this.. and things are only going to get worse. I want things in place so that when things get worse, they are ready to go, and we aren't scrambling for help then. Medical professionals keep asking us "what help are you looking for?"... uh, everything? I don't know, what can you help us with? We are starting at square fucking one right now.. like what do we do? Where do we go? How do we do this? It's been a whole lot of hurry up and wait.

One positive light- and it's a huge light- is we found a support group on facebook from the NTSAD (National Tay-sachs and Allied Diseases). The families on there are in our exact shoes - from all over. I made a post on there and immediately I had so many people reach out and offer support, help, advice, and just their own personal words of wisdom. It was overwhelming and just amazing. These families understand EXACTLY what we are going through and how we are feeling. It was nice to hear from them on what steps they did first and what worked or didn't work for them. It was the best thing we've done so far.

Anyway, long winded rant, and that's not even half of it- I had to delete some paragraphs because I'm not ready to share my entire anger yet :) but maybe one day.

xoxo,

Kim