Time races on

I've been having issues with the my blog site deleting half of what I write. I wrote a really long blog earlier last week after I had a really rough day. I was putting Greyson to bed and I just couldn't control my tears. I lost it. I was exhausted, sad, and just needed to vent. It deleted about 90% of what I wrote, but here is what was saved:

*Proceed with caution- inappropriate language ahead*

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May 21st:

I'm having one of those days where I just can't stop tearing up. I'm currently sitting in Greyson's bedroom, as we normally do, with the lights on his ceiling and him sleeping in his bed. The thought of this ending one day is breaking my heart. The thought of not having him here everyday with me is terrifying. The thought of my sweet boy not being home when I get home from work, or going to bed without giving him a good night kiss, is truly unimaginable.

This journey has taught me so many things. I've met so many AMAZING people. I've had to become stronger than I ever thought possible. But tonight my heart hurts. My "strength" is crumbling as I sit here. Greyson is currently snoring.. he's been sleeping with his mouth WIDE open, it's so damn cute. He seems like he's getting better and feeling better. Definitely less suction than last week. While I was suctioning I thought to myself how I wish I didn't have to do this anymore. But then the guilt came in and I realized when I won't need to do this anymore... Greyson won't be in my arms anymore either. How the hell am I going to survive losing my son? How am I going to move on with my life when the best part of my life is no longer with me? Greyson is the best thing I have ever done with my life and I just can't picture my life without him here. I've wanted to be a Mommy my entire life. I've always wanted children. I always pictured taking them to the park, pushing them in the swings, going to the zoo, taking them swimming, and them running into my open arms. I never got to see my son walk. I will never watch him walk. I will never hear him say Mama again. He has never even played at a park.

I'm trying to stay positive, I am. I still have Grey. He's relatively healthy right now. His seizures are under control. I still get to hear his little snores and coos. We had a wonderful afternoon today and just hung out outside in the beautiful weather. But those negative thoughts come in. My son is dying. I have a funeral home picked out for MY SON. What the actual fuck. Excuse my language, but seriously. What the hell is wrong with this world that this happens to innocent children. We aren't alone in this.. there are families all over the world with children who have Tay-Sachs or one of the other allied diseases. While I may be stronger than I ever imagined.. I am also stressed more than I have ever been. I carry my stress and clench my jaw. I grind my teeth at night. I get restless and either can't sleep or need extra sleep. I get exhausted where things get left undone.. and then everything builds up and stresses me out more. A vicious cycle of trying to find the energy and just giving in. I've been clenching my jaw so much I wear a mouth guard at night. I've been using the over the counter ones that you just make at home.. but I've clenched THROUGH them. The plastic gets worn away from the pressure and grinding. I've gone through 3 this year so far.. and this one I have now has pretty large dents where my bottom teeth hit the underside of the top piece.

Adam and I tell each other almost daily how perfect Greyson is. His features are just perfect. His long eyelashes. His button nose. His dimple chin. He's so perfect. He makes the sweetest noises. His yawns are so dramatic. He has the best laugh. He sighs when he's tired but I swear he does when he's annoyed too. He's always had perfect comedic timing. Even as an infant!

This was how we spent our afternoon after I got off work.

He's so handsome. I can't get over how perfect his features are. It was a beautiful afternoon and we were able to clean out our cars and just hang out!

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May 26th-

I am hoping that this blog doesn't get deleted. I can't remember everything else I wrote about but I was having a really difficult night. Nothing special triggered it but I had a few nights in a row where I would just sit in Greyson's room and just cry. I felt ok until bedtime. The world is quiet, my son is sleeping safely and peacefully in the house Adam and I bought for him, my mind is quiet and nothing left on the to-do list. Just be.

We have been doing a lot of snuggling lately. Greyson seems to be more tired than usual the past few days. We can wake him but I feel almost guilty making him wake up. He needs the rest too and he sleeps through the night. He's been doing pretty well at night too- which means Adam and I are getting some sleep too.

I've been trying to make more time for my crafting. I made some decals for our cars last weekend. That first one is a QR code that if you scan it with your phone it will bring you to our main page for Greyson! The second is the NTSAD logo, and then of course, the UP! Then the last one is our newest resident at the Rudness household! A mama robin decided to make her nest in our bush right outside our front door. We had no idea she was in there until our hospice nurse came to give Greyson a massage and she dive bombed her! She flew right into our glass door. I went out later to check on her eggs. She had 3 but one fell out and broke so I wasn't able to help save it. She's been hanging out around our yard whenever she's not in the nest. If we get close to the nest she will watch us pretty closely. I wish I could ease her worry- don't worry Mama, you're safe with us!

Here are some videos from this past week!

This was taken on Monday night. Adam went golfing and we had a Mama Grey night. Grey was SO tired so I figured we would just spend his nap snuggling :) He was so snuggly and just wanted to snuggle. We spent the evening like this and doing his stretches.

I also had something done today! I had two Greyson tattoos on my left arm done. The one on the top of my shoulder is his birth flower- chrysanthemum. I took his heartbeat from an EEG we had done and she copied that on my forearm with his initials. I just reached back out to her to go on her waitlist to add a little more with the flower- maybe another flower and some leaves. She did such a great job- I'm so happy with how they turned out!

Greyson has been doing better than he was- still has his moments of being gunky but it seems better than last week. Adam is on break from school after wrapping up his 1st semester in the nursing program. He got an A in his class- of course! Smart Dada.

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May 27th-

Grey had a pretty good night last night. I ended up taking him overnight so Adam could get some sleep. I figured it would be easier for me to sleep in the recliner in his room since I usually sleep on my side and on the side with my new tattoo. I didn't want to rub it or anything so sleepover in Greyson's room. It's kind of silly but I think Grey and I both sleep better when we are in the same room. I don't know if he knows I'm there, but I sleep better knowing if he needs me- I'm RIGHT there. Not that our bedroom is far from his, but I just can hear him better and be there faster. I ended up picking him up around 4am this morning. I think he might have seasonal allergies. His nose has been pretty stuffy and runny and the secretions we are suctioning are clear but it's almost like some post-nasal drip. His O2 levels and his heart rate were fine but I figured he's more comfortable on our chest when he's coughing so I picked him up. We snuggled until his 8am meds. I was thinking of staying awake but decided to head back to sleep and let myself sleep in a little bit. Well, a little bit turned into 10:45am this morning! I woke up to Adam's alarm- he ended up coming back into bed too and apparently we both needed some sleep. We woke up and quickly cleaned the house a bit because we met with the Make-A-Wish volunteers today! We had Julie and Mandy from MAW come to our house to talk about what kind of wish Greyson would want. We are hoping to give him something he would enjoy and something we could do together. We are thinking of a swim spa or hot tub for our house so that we can do therapy at home. It would be really nice to let him be in the warm water right in our backyard. We gave them our top ideas and they bring that to the MAW team of Wisconsin.

It was nice talking with the volunteers about Greyson's favorite things but it also made me emotional. They asked what his favorite color was.. and he never had the chance to tell us. He never had the opportunity to have a favorite color. We just said blue because we have a lot of blue things for him. They asked what kind of music he likes.. and it was the same thing. He never had the opportunity to have a favorite. We listen to a lot of Luke Combs and some children songs but those are Mama's choices, not Greyson's. I listened to Luke Combs on repeat when I was pregnant and we would listen to him whenever Grey was in his highchair, but that's because I wanted to listen to him. I sing songs to Grey that I think he likes, but he never had the chance to tell me if he did or didn't. What is his favorite cartoon? Same thing. He didn't have the opportunity to have a favorite. We watched Bluey a lot when he was little but again- that was my choice. I liked watching Bluey with him because it's adorable and so sweet. It was never Greyson's favorite things- it's what we chose for him. He never got the chance to make his own choices. It's the same with dinosaurs.. we made that choice for his big boy room. He didn't. That was harder on my Mama heart that I thought it was going to be. I held it together and we talked about Greyson and shared our story. We shared about Tiny Superheros and Lightz of Hope. We shared about NTSAD and the support we've received. Then we talked about the diagnosis.

I held it together until Adam started sharing how the anticipatory grief shook us. We've been grieving for our baby for over a year now. He talked about how we had all these plans for Grey when we found out I was pregnant. How we couldn't wait to watch him crawl, take his first steps, run into our arms when we got home from work, beg us to go to the park, to pick up ice cream on our way home. We had plans. We couldn't wait for the first day of school, when his backpack would be the same size as he would be. How he would come home with art projects for the fridge and rocks or worms in his pockets. We had plans. Coming over with his buddies after school, getting his drivers license, prom, and graduation. College. Marriage. Career. May his own family one day. We. Had. Plans. Tay-Sachs robbed us of our plans. Robbed us of our dreams for our son.

That is when the tears started flowing. I do what I always do and I apologized for crying, even though I know I don't need to. It's been a year of grieving and I still struggle. I know there isn't a time frame and I honestly don't know if I'll ever not tear up talking about Greyson. I just wish I could take this disease out of him. Give him my brain and allow him to live a long, full, and happy life. He's the sweetest boy and I wish I was able to give him a life and watch him grow. Watch what kind of man he would have become. But Tay-sachs robbed us of that too. I am thankful to be Greyson's Mama and so thankful for every day we have with him. I'm thankful for the support we have. I'm thankful for the little moments with him and hearing him "talk" and laugh with us, but there is that nagging voice in the back of my head that is just.. honestly.. pissed the fuck off. His giggles should be filling our house from the moment he wakes up until bedtime. He should be awake more than he sleeps. He should be making a mess in my living room with all his toys and books, not the medical equipment, tubes, and wires. I'm just angry and frustrated. The nagging voice that reminds me it was MY genes that did this to him. Despite the fact Adam and I had NO idea and I understand it's irrational to feel guilty over that, but I do. I feel guilty that it's our faulty genes that decided his fate.

After they left our hospice nurse Karen came to give Grey his massage. He loves his massage with her! He always gives her some good coos, especially when she does his back. He has lunch after, then a nap. Adam and I are hoping to get outside this warm weekend too! I am off this upcoming week and hoping I can get some crafting and relaxing in. Spend some time with my boys and just take a mental health break.

Well Grey is waking up from his afternoon nap and needs a new diaper. I hope you have a wonderful Memorial Day weekend!

xoxo,

Kim