I am so frustrated today! I had a long blog post written up and saved, but when I went to post it on Facebook this morning, I remembered something I was going to include in it. So I edited to add a paragraph and suddenly the whole thing highlighted and got deleted. I worked for about 2 hours on that blog! Then to lose it, I had already been having a unmotivated day, so the thought of doing it over was just so frustrating.
Last night I was up late, until about 2:30am at least. I have a hard time some nights with turning my mind off. I lay there and replay moments and memories. Ones which I wish I didn’t ever have to think about again. Last breaths, mouth sores, monitor beeps, his struggling face. His scream while ventilated that I will never know what was for. Was he just protesting? Did something hurt? Was he trying to tell me something? There are so many unanswered questions that no autopsy or anything will be able to tell me. I guess I’ll just have to wait and ask him myself.
Dawson has been having some trouble lately too. Each morning I get up when Gabriel cries and find Dawson sleeping on the couch. Sometimes his sippy is near him, he’s always covered up with a blanket like he meant to go sleep there. In the past he would wake up crying, but I’m not hearing anything like that anymore. I usually wake up easily and I haven’t heard him wake up at all. I asked him if he was sad or scared and he couldn’t tell me. It’s frustrating, not being able to know what he’s feeling or thinking and not being able to have a conversation about it.
Yesterday I was very unmotivated. I didn't want to get out of bed and after that I just moved to the couch. I finally decided to force myself to do something. It was too quiet in the house, so I decided to bring some of the kids over to play. So I went and got 3 of our "other kids" and they had fun. My energy and motivation returned some, but I was still a bit in a funk. I did get a couple things done, but definitely not as much as I had planned! Just a reminder that I still need to take one day at a time and be ok with having a down day. I got this from a grieving group on facebook and it's so true! Each day we start over. Yesterday I was at the bottom, but today I am already higher up with wanting to try.
I recently got all 3 birth certificates. I wanted Tyler’s since I have his death certificate, so I wanted his happier one as well! Well I was bummed to see that even his birth certificate is depressing, it now has “Deceased” right at the top.
Dawson has a new game of throwing all the pillows and comforters into the crib after Gabriel wakes up from his nap, then he climbs in and cuddles with him. Gabriel was not amused.
Gabriel loves having his buddy Alchemy over. After his nap, he found his buddy napping on the floor. I have tried to move him in the past and it just results in no nap, so I’d just left him! Gabriel thought this was time to wake up and play, so he laid there staring at him for a while, looking at me and wondering if he should do anything. Eventually he started poking at him too. I love how social Gabriel is, he loves having his friends over. When we come pick them up, Gabriel is all huge smiles when he sees the kids getting in the van.
I’m saddened to learn that our friends are moving across the country in August. We’re going to miss them so much! Dawson is always talking about them and wanting them over. Gabriel really enjoys them as well. It’s been great having someone to talk to and swap babysitting with. I’m not really sure how to tell Dawson, even though we have moved, he still has a hard time understanding it, and we only moved across town. I don’t think he understands distance. His only other loss was Tyler, but our friends are going to be ok, they are just moving. It’s a hard concept for a little guy. I have a feeling we’ll be explaining this one for a very long time as well.
We went to Lake George on Thursday as a family. We love walking around the small lake and going to the park.
Gabriel has a bit of a swollen upper lip. He split his frenulum (piece of skin under upper lip in the middle) and then re-split it the next evening. It’s tough being 1 and just learning how to walk and be steady. He got a bloody nose both times as well, the 2nd time wasn’t as bad.
They have a couple of nice landings overlooking the lake. Gabriel thought it was neat being right by the water.
Lots of memories there though, we last went there with Tyler and Gabriel, the night before the biopsy that confirmed his relapse. (Tyler, 4/11/2011)
Dawson loved climbing on all the rocks. I did get him to sit for a picture once though!
Lately Dawson loves climbing and has gained some good footing and balance. He was excited to make it to the landing in the middle of this rope climber.
I love Gabriel's face in this one! He was running off and getting Daddy to chase him. So much fun! You can click on the pic to make it bigger if needed.
After the luncheon I visited Children’s. I had told one of the moms that I was heading over there and she invited me to visit them in her daughter’s room. Since Siena’s mom was running errands when I got there, I visited Jane first. I haven’t been to the Oncology floor since before Tyler’s transplant when we spent 3 months there. I had heard it is very hard going back, so many memories and just the site of the kids and everything just floods back and is overwhelming. I’ve heard some parents come close to passing out or throwing up. I was nervous to go back but I thought the longer I stay away, the harder it might be. As I got closer I got shaky, but once in Jane’s room I calmed down and could breathe a bit easier. Her room is right across from Tyler’s old room. I couldn’t even look at it, knowing it wouldn’t be his name on the door. I saw the sweet bald girl laying there, curled up napping, looking so tired. It was a little weird being in someone else’s room, when you have a patient there, you avoid other rooms because of infection sharing between patients. Jane is 6 and was diagnosed with Leukemia in August last year. After chatting with her mom, I went down to the lounge to meet Siena’s mom. She was just diagnosed this spring with Infant Leukemia. www.caringbridge.org/visit/sienawolcyn She’s having a tough time and is getting mouth sores. It was nice chatting with her mom, answering questions and giving some insight. It feels good to help and talk with newer moms.
My Mother's Day card from Dan. He said he was going to find a blank one and just write in it, but then found this one. It was so sweet, I just had to share it. :)