This story is not over

This is the blog I never ever wanted to write. I knew it would come eventually, but I never thought it would be this soon.

We lost our sweet Greyson Tuesday morning at 2:43am in our arms, surrounded by our family.

Adam and I are heartbroken and not sure how we will ever be ok again, but we are trying to find comfort that our boy is no longer suffering and is at peace.

I don't like the wording of he lost his battle- because you can't lose a fight that un-winable. It sounds like he failed. He didn't fail, his body failed him. He didn't lose the battle at all. He was so strong and brave. He fought and he won, he left on his terms when he was ready. We are so blessed to be his Mama and Dada. We love you so incredibly much Greyson Kent 💙 I kept telling him Monday how lucky I AM to be his Mama. Not how lucky I was - because I will always be his Mama. Always.

A part of us died with Greyson and it feels like I have a hole in my chest. Simple things trigger the tears. Seeing his equipment sitting tucked together, his ppod empty, his empty room, his unused Hulk diapers, everything. Everything triggers the tears. Our daily routine has been completely uprooted. We have had so much focus on Grey and his needs. We had meds/breakfast at 8am, then shake vest, nebulizer, and cough assist, then he'd nap. Then some days we would do a bath after. We would snuggle, do his stretches, read his books or sign songs, change a diaper, then get ready for lunch/meds/and respiratory treatments again. Then repeat. More meds at 8, more meds at noon. Our day was filled with Grey, his care, loving him, and snuggles. We had his hospice nurses weekly appointments, which we called his "dates". His LPN would come twice a week for his massage, and his RN and social worker once a week to do his check-ups. We would get him ready for bed and most nights I would take Greyson. I would sit in the recliner and listen to his sweet noises as he fell asleep while his lights danced on his ceiling. I would drift off to sleep in his room, snuggling with his dino blanket. He needed us a lot more the past few months- helping him suction. He slept on our chest a lot the past few weeks. He was really struggling with his secretions.

After Denver, he was hospitalized with pneumonia for 6 days (that was July) and we are pretty positive he had a second round or the 1st never fully healed. Then Monday he woke up with super thick secretions again. We thought maybe round 3 or again, just never healed fully. Adam and I both woke up and said the day felt different. Something was just different. It was Labor Day so we figured his hospice nurses would be off, so we held off on calling the office.

I don't want to go into details, but Greyson passed in Adam and my arms at home at 2:43am. It was a very long day before that. Our family was over and was there to support us. We had a different hospice nurse with us and she was wonderful. She was so kind and caring. Before Grey left us, I was able to read him his favorite books and sang our songs. We let Grey know it was ok to let go. He fought long enough and now it's our turn to carry the fight for him. These photos are from our last day together. He is absolutely perfect.

We are.. eh. Doing ok, struggling, sad, angry, and exhausted. Adam and I are both not feeling well, I'm assuming from lack of sleep and high stress. It's hard to sleep, but we know we need it. Everything is hard. We don't know what to do with ourselves. The house is so quiet without his equipment, without his noises.. it's deafening. It's paralyzing. We keep looking for him and waiting for our alarms to go off to remind him to give him his meds.

We are trying to navigate this new normal. Another new normal. I hate it. I love that he's at peace.. his body is free...but selfishly I want him with me. Where I know he's safe and warm. I have a feeling he's up there with his Grandma Laurie, Atticus, Finnegan, and the other Tay-Sachs kids that have gone before him. He's finally taking his first steps, running, playing, getting dirty. Being a kid. But it still hurts like hell. One of the other mom's shared with me that grief exists because love exists. And we love our children so deeply.. so the grief feel is just as deep. I honestly haven't felt this amount of grief.. ever. We've been grieving for 533 days. The day we received our diagnosis is when we began grieving. We began the process of trying to figure out our son's diagnosis, what equipment we would need, what medical specialties we would need on board. It was overwhelming and absolutely terrifying. Now it's all of that, without our sweet boy in our arms. This journey has been so staggering. It's been lonely - even with all the support we have received. It's been heartbreaking. It's been cataclysmic.

Never in our wildest dreams did we think this would be our life. If Grey had been healthy, I would've wanted a second baby by now and our family would be complete. Maybe adding a dog in to the mix. But instead, I'm planning a funeral for my baby boy. Well, strike that.. I'm planning a celebration of life, not a typical funeral. He deserves something fun and happy. We plan on having a party for our boy. We want balloons, dinos, lights, music, cuddly blankets, and just everything that made him happy.

Last week, the electrician and concrete team were scheduled to come work on Greyson's hot tub from Make-A-Wish Tuesday morning. Grey passed Tuesday morning and I got maybe an hour of sleep. If I'm being generous..it probably wasn't an hour. My Father-in-law met the workers outside that morning to let them know Grey passed to make sure how they wanted to proceed. They called Make-A-Wish and the director said to proceed as normal. They poured the concrete today so we had to go add some of our boy today.

I honestly don't know how to function. I don't have energy. I don't have any motivation to get anything done. My mom did our laundry for us Monday and everything is still in the baskets, except Greyson's things. I put all of his things away. It's oddly comforting to be in his room. Be surrounded by his things. His smells. His space.

I keep looking for signs of him. We have had these birds in the tree right outside our bedroom. They woke me up this morning and it's oddly comforting thinking it's him out there letting me know he's ok. There has been 3 birds playing all day - I have a feeling it's Atticus, Finnegan, and Grey. Atticus and Finnegan are two other Tay-Sachs boys who passed and their parents have been so kind to us this entire journey. They are showing Greyson the ropes and causing a ruckus. Julia (Finnegan's Mama) sent me this. She lit a candle for Grey surrounded by Finnegan's things.

Right now we are just taking time to be with family and friends, to give ourselves some time, to be kind with ourselves. We've been doing one task a day and more if we feel ok to do it. We've been watching videos of Grey and looking at photos, running errands, and yesterday - Adam and I went on a date together for the first time since 2020. We haven't been out because of COVID, not just Grey. It was bizarre. Our house is just so quiet. I miss his little noises... His equipment is off. It's just.. empty. We went from having all our focus on Grey and his care and now we have all this unwanted freedom. We don't have a focus like we did and that's so hard. Our day was so structured with meds, feeds, respiratory treatments, stretches, and snuggles. We had appointments, nurse visits, and things to clean for the next round of everything.

Adam's Uncle sent us this crystal of Grey, Julia made this felt stegosaurus, and then one of the birds who kept hanging out at our house.

And these are two of the 3 birds in our tree outside our bedroom

The third one is hidden by the base of the heart. I truly think it's the boys letting me know they're ok. It's comforting. They have been in this tree since Tuesday -coming and going- but spending a lot of time there. We've been woken up by their songs the past few days and I feel like it's Greyson telling me he's ok.

The blog is going to change and shift now- just like our lives - but I plan on continuing the blog. Adam and I are still navigating this life and we still have more to share. I have so many videos and photos of our handsome boy. I will continue to post about Grey, Adam, myself, our family and continue to fight for change the world for our boy. I am taking some time off work to grieve, to heal, to research ways to change the world, and just let my mental health recover. I'm looking into foundations/nonprofits or something. I'm also planning on doing a fundraiser for our family with shirts and other swag. I'll post more when I can. I also want to get back into crafting and looking to do a craft show for the holidays. We aren't done with Greyson's story. Greyson's story is anything but done.

People keep asking what we need or how to help. Right now, we need help sharing Greyson's story. Please share- please help talk about expanded genetic screening BEFORE families start a family.

We still have our gofundme if you'd like to help us: https://gofund.me/f6801998

We also have venmo: @kimrudness or cashapp: $kimrudness or paypal: rudnessfamily --> all of which will go to helping Adam and I stay afloat and pay for Greyson's celebration of life and funeral services.

We also have a mealtrain set up which is on our facebook page. If you'd like the link to that, please feel free to contact me directly. A few have reached out for our address- and if you would like that too, please contact me too.

Thank you from the bottom of our hearts for loving our son. Thank you for reading, sharing, and helping us through this. I promise Greyson's story will continue.

xoxo.

Kim

I uploaded some videos and photos here and also under the look at this cute kid page:)

This was Greyson's water dance - he LOVED water