Last Christmas Lily was suppose to be opening up presents with Weston but instead the boys were in my belly.
This year, we are so excited she will open up presents with Cooper and Wyatt. It doesn’t change the fact that our little boy won’t be sitting in the living room with us. It doesn’t change our sadness or longing to have him here.
I’m trying my best to navigate my grief of not having Weston here for the holidays and allowing myself to feel excited to have two more babes joining us. It can be debilitating.
The first Christmas without Weston I was numb. It was only a month after he passed and I was barely keeping my head above water. Last year was still hard but we were looking forward to meeting the boys and saying how Lily would soon have brothers to share presents with.
The time is now. October, Weston’s birth month. November, Weston’s anniversary month. Then Christmas. It’s suppose to be a happy time. Celebrating for many reasons and yet I still don’t feel ready for it. I’m being pulled back into the pain of it all.
I reread the card the NICU team sent us after Weston passed. I remember all of their faces. I remember the windowless conference room we sat in where major decisions were made. I remember the four different spots his crib was moved to in the NICU. I remember the nurses that tried hard to connect with us. The ones that treated us like family. The ones that loved Weston like their own. The doctors that let us call any hour of the day to check in and not get frustrated. I remember it all and I relive it often. At random moments of each day there’s a reminder of the pain.
Lily and I made homemade cards to send to family. I cut, glued and scribed. She decorated and narrated what she wanted to have me write inside. When I asked how we should sign it, (Love the Olson’s, xoxo the Olson’s) Lily decided she wanted me to write out each of our names, including Weston.
I was so happy she wanted to include him but got an overwhelmingly uncomfortable feeling. How would this make other people feel reading it? Would they think I wanted to write his name? Is it weird? Should I not do it?
I wrote it. I was proud of Lily. I decided it wasn’t worth worrying because that’s what Lily wanted and she’s keeping his memory alive.
I’m so sad the boys will only know what we tell them about Weston. Never being able to hug or kiss him. I’m worried they won’t understand for a long time. I’m worried as the boys get older and able to talk and play, Lily won’t talk about Weston as much.
I’ve been trying to come up with ways to incorporate him in everyday life but especially the holidays. I follow a mom on Instagram who also lost a child. She recently posted that she will have all her children write a letter to their angel sibling and on Christmas Eve when Santa brings them presents, he will take the cards and bring them to heaven.
I love the idea. I want to try and do something similar. We don’t celebrate Santa at the moment though. Maybe because Lily already knows Weston is always around we can say he’ll visit Christmas Eve and we can leave the cards for him to read.
I’ve felt defeated lately. Constant migraines and extremely tired. Being stuck inside and staying up wayyyy past my bedtime definitely aren’t helping. I’ve felt so much emotion the last few months it’s finally catching up to me.
I often think about what if. What if we knew his diagnosis before he passed. Would anything have changed or we would just have an answer so we could stop poking and prodding him trying to get more blood for further testing. What if we knew this was the outcome while I was pregnant. Would we have had longer to “prepare”. This makes me wonder if I never truly grieved. Did I ever actually process the loss of my son or did I turn to survival mode because I have other people/children counting on me.
I mentioned in one of the first couple posts about an old friend reaching out. She said she had worked with children who also had the KCNT1 gene mutation like Weston. A few nights ago after the kids were in bed, I was at another low. I fought the idea for hours of reaching out to her. Then I finally did. I wanted to know what the quality of life was like for those children.
We were given the option to take Weston home. He would be on a G-tube and we were told he’d never meet any milestone. We thought about what that would look like for his quality of life, Lily’s and ours. It seemed selfish to keep him alive when he wouldn’t even know what was going on. We would keep him alive by feeding him and that would pretty much be the only reason. This showed to be true when we decided to take out his feeding tube. Not even 24hrs later he died.
My old friend explained these children don’t have much of a life. She said one kiddo doesn’t open his eyes, or move. He’s fed thru a g tube and had a port placed because he’s hospitalized so much. She explained he had countless procedures to aid in his ailments. They use Botox to numb his salivary glands because he was choking on his secretions too much. She said he’s on constant monitoring at home because his muscles are weak and he can’t support his diaphragm. He’s on the keto diet (the legit one not the fad one) along with 6 antiepileptics and he still seizes. Which the same thing happened for Wes. No matter how many or what medications he was on his brain was still seizing. She said he’s at high risk of sudden death of epilepsy. They have a private duty nurse around the clock and he’s in a special wheelchair. She said he can’t talk, walk, eat, or turn over.
I’m not sure the age of the kiddo but nothing about that would make me personally feel okay. Every family is different. Not that I need approval from anyone to say we did or didn’t make the right choice but this. This made me proud of my family. Proud we came together in such an awful time. Proud knowing what the outcome would be and putting our own feelings aside. Proud that we love a child so much we would rather him not suffer than keep him alive so we could snuggle and kiss him daily.
Her message was exactly what I needed to continue forward. I kept feeling myself fall deeper in a hole. Did we make the right choices? Should we have gotten pregnant again? What do other people think of us? Do they think we should have brought him home?
Again, the message was very clear. If we brought him home it would be for our benefit not his. It would have been very hard on the family. Personally, I think it would have been harder to keep him alive than it has been missing him. The worry of when he would suddenly die. Would lily be there? Would she truly know what was happening? Would she be traumatized more than she maybe already is?
Thank you old friend for bringing me back to my reality. Thank you for sharing and helping me have my confidence back. Thank you for making me feel like I can do this. I can grieve and be happy knowing I have three beautiful children on earth and a precious angel always watching us.
I may need this reminder multiple times throughout my life. For now, this reminder was exactly what I needed a week before Christmas.