The Reality Is You Will Grieve Forever.

Now that we are home and back to "real life", I have been trying to do things other than work and class. I want to try and enjoy summer in Wisconsin and get out to experience things locally. It's hard some days. There are days where I still don't want to leave my bed. My heart hurts and the tears come easily. Other days, it's not as paralyzing. I've shared that before in previous blogs, but with this journey, I've really come to understand that grief is something I will have for the rest of my life, because I will love Greyson for the rest of my life. As long as there is air in my lungs, I will love my son. Grief is love with nowhere to go.

My therapist mentioned to me awhile ago in one of our beginning sessions, if Greyson was here and his body would have let him be a kid, what would he want you to do with him? He would have wanted to get out and explore, play, and be outside. He would have been ok with some snuggle days but he would have wanted to get out. She said, think if he could see us know- he'd want us to do things and live life we have.

Easier said than done some days, but I replay those words in my head often. Especially when I sign up to do something and the day comes and I regret signing up. I've been forcing myself to just shut up and do it. I knew the conference this year was going to be draining. I knew that it was going to be so difficult without Greyson here. One of the other Mom's made a comment that it's pretty cool being known as our child's Mom there. I will always be "Greyson's Mom" there. I love that. Being Greyson's Mom is the best title I have ever earned in my entire life. He made me a mom, he gave me my voice, he helped me find my passion in life and Tay-Sachs can't take that away.

My youngest niece E graduated HS this past Monday. Her sister, my brother-in-law P, and his Mom are in town from Finland. My middle sister and her husband came to town Friday night and we had a little graduation celebration for E at my parents house Saturday. We decided while the family was in town to visit the Beyond Van Gogh exhibit here in Wisconsin. It was so beautiful!

I love this photo of E enjoying the paintings

It was very captivating. I didn't know much about Van Gogh ahead of time to be honest, but the immersive paintings were so cool to "be a part of". After the exhibit we went to Lambeau field and ate at 1919 there. Work has been a little slower than normal so I started studying for my summer class to try and get ahead of things.

I'm only taking one course this summer but I will officially start the RN program in the fall semester with 3 courses right away. I'm taking Advanced Anatomy and Physiology this summer. I'm a little nervous considering my first time taking Anatomy was like 14 years ago.. but I'm hoping I have enough stored in my brain that Advanced won't be too difficult. It's hard to study when it's beautiful outside! We've been taking Millie on more walks too and it's hard not to play with her outside when she gives you the eyes! :) Greyson would have loved her so much. She would have been such a good snuggler for him.

After we got back from the conference, I was excited to finally have my *coffee* machine back with my fancy kcups (I love the toasted marshmallow mocha!) and creamer. I used my Cayden mug. Cayden is the little boy I was snuggling in the conference photos on the previous blog. He was the other little during the conference with Denver and we instantly fell in love with him and his parents. They did a fundraiser for Day of Hope and I bought this mug for our house. The middle photo was Millie snuggling with me the morning after we got back. She was SO close to me.

Millie has been my snuggle buddy lately too. I think she knows I need them. I bought myself a kindle paperwhite for Mother's Day. It's waterproof so I can read in the hot tub but I've been reading a really interesting book. I grabbed Greyson's dinosaur blanket and she hopped right up and napped on my lap and we both eventually fell asleep.

Saturday was my niece's graduation party. It was supposed to rain but thankfully the rain held off for her entire party until the very end. She had a good amount of friends come and it was really nice to meet them and see her have fun with them. We were able to snag some family photos.

Grief is such a weird emotion. I know it's normal, and I know that it's valid. I see signs often (not often enough!) that Greyson is with me, but I wish he was still with us. I want to do things with him. I want to take him to a park and let him run around and watch him learn and play. Sunday morning I was getting ready to go with my sister and her husband for breakfast when a chickadee landed on the tree right outside my bedroom window. He stayed there for awhile - looking right into my window. It was only one I could see, but he stayed there for awhile and I have a feeling it was Grey saying Hi. He knew I needed to see him. I struggled with E's party just knowing that Grey would never get a graduation party. I would never see him walk across the stage to get his diploma or hear what college he wanted to go to. What dream job he wanted to do. It was bitter sweet. I was able to see E walk across the stage and she really beat the odds against her with moving countries in the middle of her Junior year and she still excelled and graduated high school.

It's hard knowing that I will always grieve Greyson and I will always wonder about the "what if's" and "what should have been". We are grieving our son and the experiences we thought we were going to have with him. I know that you have to keep on living and Grey would want us to, but some days it's just so hard to remember that. I just want to curl up with his blanket, his stuffed animals, his clothes.. anything of his. I'm exhausted most of the time, but it's an exhaustion that sleep doesn't fix. I can't just nap and feel better.. my soul is tired, my bones are tired. I posted this in our bereaved parents facebook page and another Tay-Sachs Mama made a really good point.. it's like the adrenaline that has kept me alive and awake during Greyson's diagnosis came to a crashing halt when he passed. You need that adrenaline to care for a terminally ill child and your mind is always on. You're hypervigilant while your child is alive so that you can be there to take care of any need that arises at a moments notice. You have a strict schedule and you're on overdrive trying to protect them and keep them safe for as long as you can. When that ends.. it catches up to you. Not only that but you're grieving. It makes so much sense why I'm feeling this way. I am thankful I'm in school and back to work, but sometimes I wonder if I rushed into things after we lost Grey. I don't think any time would have been "good" to get back to "real life" but I don't know. It feels like you're treading water. Some days are ok, you are able to keep your head above the surface of the water, you're breathing, and you're ok. Other days it's rough waters, your legs are tired and you're losing strength. You keep dipping under the surface trying to find your way back out. I've been feeling more like that latter the past few weeks. I'm trying. I'm kicking and swimming, but I am drained.

I've been trying to find things to do FOR me and that make me happy. With my class starting up this past Monday, I'll be busy again but making time for me too. I've been reading on my kindle and we are building Greyson's Oasis in our backyard. We decided to make a retaining wall around his hot tub. I've had a few people ask about it and how they can help so I put together a little Amazon Wishlist for his Oasis if you'd like to donate something to his garden. Please do not feel obligated by any means. We also still have Greyson's account set up which I plan on using when we finish creating his foundation. I am trying to figure out a fundraiser idea- like t-shirts, waterbottles, keychains, etc. If you have any ideas or something you'd like with Greyson's logo or photo or something on, please let me know! You can comment on here or email me at greysons.brave.story@gmail.com

Amazon list: https://www.amazon.com/hz/wishlist/ls/1JIREKTO2A1JL?ref_=wl_share

xoxo,

Kim