When waves come crashing

*Adult language ahead and sensitive topics. Proceed with caution*

The best way I can describe grief is a wave. When you picture a wave there is a crest- a peak- where you are ok. You're surviving.. maybe even happy. Then there is a slope where you end up in trough- the bottom- the lowest part of the wave. Where you are just incredibly sad, broken-hearted, and just full of misery. Today I'm in that trough.

Monday I worked and Adam took Greyson to his speech therapy appointment and then to see the surgeon for a follow-up. The surgeon said everything looks great and he is healing wonderfully. That was the crest for us. We were so glad to hear everything was healing and he seems like he's not as sore as he was. He's still a little sleepier than normal but he's also getting his seizure medications and still recovering. We've just been letting him take more naps if needed and getting in extra snuggles.

Then today was the trough. Greyson had 2 more appointments today. The first was with the eye doctor. Adam took him so that I could get the house cleaned. I spent the afternoon dusting, vacuuming, putting dishes away, doing Greyson's dishes, and folding laundry. When they got back Adam went and put Greyson down for a little nap before our next appointment. Adam shared with me that the eye doctor said his eyes have gotten worse since our last appointment which was 6months ago. 6 months ago we did not have Grey's diagnosis yet but they knew he had a little bit of nearsightedness. We had the follow up today to see if things had progressed or stayed the same. Well, they have gotten worse. Part of tay-sachs is children often lose their sight.. and that seems to be the way things are going for our son. To say that news hit me hard is an understatement. We knew this was a possibility, We knew that down the line, it was something we may hear from a doctor. Down. The. Line. The thing that is killing me is everything that is "down the line" keeps coming out of nowhere and slapping us in the face. First it was the lack of muscle control, then losing his ability to hold his own head up. He stopped playing with his toys, stopped reaching for them, stopped holding them in his hands, stopped rolling over, stopped splashing in his tubby. When we got the diagnosis we knew we would never hear him say "mama' or "dada" again. We knew he would never crawl and I wouldn't get to film his first steps while we cheer him on. That doesn't make it not happening any easier. Now our son is on seizure medication and a vitamin to protect his little liver from the seizure medication. He has a g-tube placed in his sweet little tummy. And now.. he's losing his eyesight. He doesn't track things anymore. It breaks my heart. It feels like I have a hole in my chest when I think about it. We knew these things were going to be our reality but they felt far away. The felt "down the road" but now we just got punched in the face with medication, g-tube and nissen surgery, now this, I'm tired of getting bad news. We haven't had a chance to even process one thing before we get more thrown at us. It feels like what is next? What is going to happen to our son next. I'm tired. Adam is tired. Greyson is tired. Give us a fucking break. I'm so angry. How is this our son's reality.

*SENSITIVE TOPIC AHEAD*

I'm angry. I'm broken. It's still really raw. I am mourning- my child, his future, our future together, and my little family Adam and I created together. I have been holding back posting about some sensitive topics because I really don't want to offend anyone, But right now, tonight, I am just at a loss. When Adam and I first started dating and figuring each other out, we both knew we wanted kids. We wanted a family. After our wedding we decided to start trying. I mean, the day after our wedding I got off my birth control and started tracking my ovulation cycles. I have always wanted to be a Mom. It took Adam and I 8 months of trying before I got frustrated with my PCOS and I went to see a specialist in Green Bay. She helped us get pregnant. I prayed every night for help with our family. Asked God and our loved ones who passed away to please help Adam and I start our family. Then finally, we were pregnant! Then a month or so into my pregnancy I thought I had a miscarriage. I prayed through tears in the ER asking to please keep our baby safe. We prayed the next two times I thought I miscarried. We prayed the night I went into labor early at 33 weeks. Please, please God, keep our child safe. This child is so loved and wanted, please let him be ok. And we thought he was. He hit milestones. He was smiley and has the best laugh! He makes the cutest squeal when he's excited. He smirks with the cutest little grin. His eyes are a deep blue color, and he has the cutest toes ever. When we started down the road of the diagnosis- I prayed every single night in his room with him. Please God, please let our son be ok. I asked for help from our loved ones who passed again- please just watch over him and keep him safe. We prayed that his delay was something simple we could work on and help him overcome. Guide us to what we need to do to let our son be ok. Well where is God now? Where are our loved ones now? No where. They aren't helping him. They aren't doing anything. God isn't doing anything to protect our son. What kind of God damns a child before his life even begins? What kind of God puts children through something like this? Or childhood cancer? Or every other bad thing in this world.. especially to children. I have articles that pop up on my facebook often that talk about parents who killed their child, or left their child, How could God let this happen? I have never really been super religious by any means, but I had my faith. Now, I'm not sure anymore. How could God do this?

I keep seeing the saying "What doesn't kill you makes you stronger" and to be honest, that's a load of shit. I am not stronger because of this experience. Maybe one day I'll feel stronger, but I definitely not right now. You do what you need to do for the ones you love- and I would do anything for my kid. I wish I could take this disorder for him, I would in a heartbeat. I wish I could protect him from this. Since God clearly isn't protecting him, I wish I could. I know that people have their own beliefs and I don't want to offend anyone but I honestly can't figure out how there could be a God that would do this.

Today is the bottom of the wave and I honestly feel like I'm just being swallowed up in the water. It's crashing down around me and I can't find the surface today. The grief wave can happen in a single day or maybe over a few days, but today.. I am just angry. I'm incredibly sad. I don't know how I have tears left after today. Hopefully tomorrow will be a better day.

xoxo,

Kim