A heart that's broke is a heart that's been loved

Today was another hard day. Actually, this week has been a hard week.

COVID has become such a source of anxiety for me. It's definitely gotten worse as our numbers jump up again. I'm so afraid of bringing it home to my family. I have to be out at work with the public but I have to go home to Adam and Grey.. both are high risk. I had a close contact Monday and Tuesday and my mind had been running a mile a minute. How could I quarantine? Should I stay at a hotel? Should I just assume I'm ok because I'm vaccinated and boosted? But what if I give it to Grey? Can his body fight it off? What if I am the reason he gets hospitalized? What if he died and I'm the reason behind the illness?

I ended up deciding to just wear a mask at home until I can get a test on day 5, which would be Friday. I'm trying to not snuggle Grey too much and it's been so hard. I worked all day Monday and Tuesday and not having him in my lap after work has been really difficult. I was off yesterday and was supposed to be off today but I was asked to help cover since we have 3 people out right now. Today was an emotional day. It was just one of those days where I wake up and there are constantly tears welling up behind my eyes. All. Freaking. Day. Nothing specific happened, nothing disastrous, but I just had to work extra hard to control my emotions today. Between losing my Grandma, followed by my Aunt, and seeing Greyson struggle has been just heavy on my shoulders. Greyson got his shake vest this week, and watching him shake in it was harder than I thought it was going to be. Then the COVID anxiety is just overwhelming. It's been 4 days of wearing a mask in my own house and it's been hard.

The shake vest was hard to watch for me, which I didn't think it was going to be. It was one of those: I'm so glad this exists to help my son but he I wish he didn't even need this to begin with. His tiny body wrapped in a blue vest that looks like a life jacket and it shakes him to help break the gunk up in his lungs so that he can cough it out or we can help him suction it up. Seeing him shake like that is what hurt my heart. His little cheeks just bouncing. I know it's not hurting him but it's that why is this happening type feeling. Why does he have to go through this? Having this close contact and not being able to snuggle him has really affected me. It's been so hard and lonely. I sleep in the extra room, I can't kiss my husband or son. Its crazy how it's been 4 days and it's already taking a toll on me. Well I got off work today and I'm feeling ok so I asked Adam how he felt if I snuggled Grey while we fed him lunch. I left my mask on and finally held my son. This Mama heart NEEDED that so bad. I ended up falling asleep and taking a little nap with Grey.

Right now we are in the middle of a 72 hour EEG with Greyson. They came in our home on Wednesday to hook him up. It's so many little electrodes on his head. We also have a camera recording him at all times to try and capture the seizures on film, They tested out his photo sensitivity first with a strobe light.

It hasn't been too bad but it's a lot of equipment to move when we need to move Grey. The camera is attached to a laptop that needs to remain open at all times and plugged in to the wall. Grey has the electrodes covered with all the wires coming off his head into a little machine which is in a fanny pack. The wires would tug his head/hair if we didn't move the fanny pack with him. We also met with a hospice nurse today. She was at the house when I got off work and I was already emotional from work and today.. and she brought up the DNR form again. The Do Not Resuscitate form. Adam and I have not signed the form yet- we aren't ready to. She was trying to explain to us that if we are a full code they will do everything to try and save Grey if needed. Including CPR (which would break ribs and bruise organs, including his heart, and possible tubes down his throat to help him breathe) and she also said typically if it got to that point, it's his body's way of shutting down and we would just be delaying it. I was trying so hard to not lose it with her here. She's doing her job and I totally understand and I appreciate the information, but I wanted to be like today is just not the day. This week has been too hard and I'm done with it. I have a few hours of work tomorrow and then I am off for the weekend. I need to just be done and hopefully test for COVID tomorrow and pray it's negative. I need to get this mask off my face at home and be able to snuggle my baby again and sleep in my own bed next to my husband again.

As long as everything is negative, we are going to have my sister, my niece, and brother-in-law over for pizza tomorrow. They do pizza night every Friday and I thought it would be fun to join in this week! They're coming here because with Grey's EEG we're not supposed to take him out of the house and it would be way too hard with all this equipment. Plus, Ella's puppy, Nalle, is in the chewing phase and LOVES to bite things. We don't need her biting any of the cords or wires :) but my goodness she's cute!

This was last week- she was tuckered out from playing!

My sister also got these adorable slippers for Grey for Christmas... they are SO cute and keep his feet nice and warm.

We just put Grey to bed and I think being in his room while he is sleeping just kind of resets my soul. I was singing our version of You Are My Sunshine and the tears just came pouring out again. This week has been a hard week, but I have faith that next week will be better. I am hoping I will test negative for COVID and I can take some time this weekend to be with my family.

I need a little bit of happiness on this post- so here are some older videos of Grey :)

Good night :) xoxo

Kim