The lasts

Proceed with caution: Adult language ahead, sensitive discussion, possible trigger warnings.

When you're a new parent, you get to experience so many firsts with your newborn. The first time you hold them, the first time they roll over, the first time they sleep through the night, the first puree, the first smile, laugh, words, crawling, walking.. the first day of school... So many firsts. You have so much future ahead of you to look forward to. You get to see their personalities blossom, you get to see them make their first friend, first time driving.. so many things to look forward to. I think the moment I found out I was pregnant, I was filled with excitement for the all of the firsts.

We had some firsts with Greyson. He is our first child so everything was kind of scary at the beginning. I remember his first bath in the NICU. I was still emotional as hell after giving birth.. everything made me cry. EVERYTHING. The nurse asked if I wanted to do the bath by myself or if I wanted to I could help her but she said she could stay with me. I asked if I could help her because he was so tiny and I was so afraid of hurting him or going to slow and making him cold. They came in with a basin full of warm water and little blankets in the water to help keep him warm. He loved his bath, even then. After his first bath, we did skin to skin snuggles and it was the first time I had that "fresh baby bath" smell and I will never forget that moment. This is the photo after Greyson's first bath doing skin to skin with me in the NICU. In our own isolated room, with warmed blankets on us. I was so tired but so in love. I couldn't believe our son was here already and I was so thankful to just have him with me.

I have that photo framed in his bedroom. He was SO tiny but so peaceful. He slept a lot in the NICU but you could really see his personality starting to come through as we got closer to being discharged. He was growing, learning, and he LOVED being snuggled.

This is the first time I really captured his eyes wide open- just before Thanksgiving 2019.

His first tubby at home. He was so small- we used this infant bath and had it on our kitchen counter :)

First Meijer trip with Mama and Auntie Denise- he was NOT happy :)

First time he was EVER in his car seat.. this was during his car seat test in order to be discharged from the NICU

So many firsts.. but now, Tay-Sachs has robbed us of anymore typical "firsts". This morning I went to wake Greyson up and it hit me like a ton of bricks. We used to come in his room, open his curtains and say "goooooooood moooooorning!" And he would always smile so big at us. When we got the diagnosis, I remember feeling terrified for the day that would stop. Someone in our support group said, it just slowly fades. You don't realize it's the last time he will do it and it just kind of stops. They were right. I can't remember the last time he did it. But as I sit here thinking about that, it just breaks my heart. The last time he did it had to have been over a year ago now. When was the last time I gave him a bottle? When was the last time he helped me turn the pages in his books? Why are my baby boys milestones the "lasts" now? All the skills he had are now LOST. Not learned. The regressions are slow in the day-to-day.. but looking back now, he has lost so much this past year. His head control. His muscles. His ability to safely eat by mouth. His laughs, his smiles, some if not most of his eye sight. I will never understand how this happened to our son. How can this be? How the fuck can this be. How the actual fuck can this be real life? My son deserves more than this. These kids in our support group deserve more than this. My heart aches. Literally painfully aches imagining my life without Greyson here with me. I'm so angry. I'm so hurt. When will be his last time he makes his sweet noises? I honestly can't even think of how my life will be without them.

Prior to be in the hospital a few weeks ago, Greyson only used oxygen at night time. He was fine during the day. Then we went to Colorado and towards the end of the trip we noticed he was flaring his nostrils (which is a sign of low O2) and he was having more dips through out the day. When we got home is when he was sick, so we had him on more O2 than normal at night and then all throughout the day. Now, if he drops below 93 for his oxygen level, we get him oxygen. We are back down on volume but it's still different having to use O2 through out the day. I'm worried that this is our new normal and we have now had the last time we won't need to bring oxygen with us when we leave the house. Was that the last time he wouldn't need O2 during the day in Colorado? Is this the new norm?

Your brain plays nasty tricks on you. I'm getting better at staying in the moment, but there are these negative thoughts and feelings that pop in my head - like these "lasts" - and then it just feels all consuming. That grief wave comes and swallows me. I feel like as good as I can be doing and even on my strong days, sometimes it feels like I'm holding my breath. Waiting for the next grief wave to come and knock me off my feet. Waiting for my heart to just break all over again thinking of what is coming. It's hard to not be negative some times. Like how is this happening? I hate that feeling when someone asks me "do you have kids" and you simply say yes, I do. Then it becomes oh how old are they? 2.5years old. "ohh they must be getting into everything, hey? Talking up a storm all the time!" I wish. I would give anything to have him nonstop talking and making messes with his toys. He has a pair of cargo shorts we got him for this summer.. and I remember thinking these pockets would have been perfect for rocks, worms, or whatever other treasures he could've found- but that will never be a "first" for Greyson and I'm really pissed off about that. I'm pissed the fuck off to be honest. I want to hear his little feet running around on our kitchen floor asking for us to take him to the park 20x a day. I would give anything to hear him say Mama again. The only one I ever caught on tape was right before a nap and he was whining- I got it on tape, so I am thankful for that - but he used to say it when he wanted something. Now I don't even know if he can see me- or recognize me. I like to think he does but I honestly don't know.

This is the only video I have of him saying Mama.

I would give anything to have these tired giggles back.

I feel like a broken record. I wish I could take this away from him. I wish "God" or whatever, would just take me instead. He hasn't had a chance to experience life. He has always been such a happy boy and such a sweet boy. He's so loved. He's so WANTED. Being a Mom is the best thing I have ever done in this life and I just don't know how to do this. I completely understand that this diagnosis was out of our control at the time. We had NO idea Tay-Sachs was in our genes at all. We had no idea that we had anything to be concerned about. That doesn't make me feel any less guilt. Another nasty trick your brain plays on you. I just wish there was something we could do to keep him safe and healthy. That's your priority as a mother, protect your children. I can't protect him from Tay-Sachs. I can advocate for him and I can share his story, but I would trade anything and everything to give him a "normal" life.

I feel like I'm in this nightmare and I just need to wake up and everything will be fine. Like my son isn't currently on hospice. Like we don't have a funeral picked out for him. Like they WILL find a cure before his body fails him. I feel like I'm just struggling more lately. It comes in waves still but the water is choppy. I'm exhausted. I hate when people ask how I am.. I don't know how to answer. Sometimes I am ok, sometimes I'm not. Sometimes I'm annoyed for no reason and every little thing pisses me off. Sometimes I want alone time, but then I feel guilty for not being with Grey or helping Adam with Grey. Sometimes I just wish I could sleep without listening for Grey gasping, his pulse ox, or worrying that we might sleep through one of his centralized apnea episodes. He has been doing them a few times a day.. where he just stops breathing. His eyes roll back and he just stops. Sometimes he gets silly before it happens - giggles and he makes his noises. Sometimes they happen without a warning. We have had him hooked up to the pulse ox even during the day and his heart rate just drops during them. They have never been more than 10 seconds or so, but damn, they feel so much longer. He had a bad one the other day and his lips went a blueish color.. or at least they seemed blue to me. We hit the bottom of his feet, rub his sternum, gently smack his face, pick him up- whatever we need to do to snap him out of it. Our palliative doctor in Madison warned us, that may be the way Greyson dies. His body just forgets to breathe. I'm glad she was honest with us, but now that is in my head every time he has an episode. Is that the last time I'm going to see my son? The last time we try to snap him out of it and he just doesn't come back? God damnit, that just makes me so fucking scared. I know for myself I hope I pass peacefully in my sleep but I can't imagine the feeling of us trying to snap him out of it and it just not working. I get panicked when they don't happen fast enough as it is.

I just can't. I'm so tired and emotional. My heart hurts. My head hurts. I'm just sad. I am trying to be present today and stop worrying about what may or may not happen but it's the disgusting reality that may actually happen. The nasty part of my brain that reminds me of what my son's future looks like. The anticipatory grief and the loss of the new milestones. The new milestones replaced by the lasts. It shouldn't be this way.

xoxo,

Kim