Fun but Tough Week

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 2^nd 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.

 I need to crop these still, but I was playing with angles and this tree.

 Gabriel is such a happy little guy!

 He climbed this whole thing by himself!

 My van, we had to take out the seat behind the driver's seat to haul a chair away, so we can see the backseat. Dawson loves having the choice of where to sit sometimes. I have all the seats in for when we get the other kids, so we can take them places and get them whenever needed. :)

 I got to babysit their little Toby the other day too while they went on a movie date! He's so cute. 3 weeks old here, with Gabriel.

 I love baby faces :)

 The other day I went to a Momcologist luncheon and spa day. They did massage, nails, makeup, hair, feet. They put my hair up and told me it would just "fall right out" when I took it out. After taking 20 bobby pins out of my hair, this is what it looked like. The only thing falling was my patience! It was totally knotted. Thankfully after a break and just running my fingers through it for quite a while, it eventually came out.

 It was still a mess for a while though!

 These are a small handful of my fellow Momcologists (what the cancer moms call themselves). Most are still in treatment, but a few have passed or are done with treatment.

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. :)

I really like this one! Lately I have felt scatterbrained, forgetful and it's driving me nuts! This does make sense though and makes me feel a bit better. :)

Donations and Happenings

Lots has happened since my last post! Thus why I haven't had time to write one. Overall we're doing pretty well. Gabriel has been teething molars and has been a bit miserable and waking up in the middle of the night with a low fever and mouth pain. Hopefully they will be through soon! He has 2 almost through and he has 2 molars and 4 other teeth that are working on coming in as well. Gabriel also split his frenulum this evening. It's that piece of skin connecting your upper lip and your gums. It's a common injury around a year old. My other boys did that around this time as well. It really bleeds a lot. Dawson was taking a bath and Gabriel walked into the bathroom. The floor was wet and he fell, right on his face. He got a bloody nose with it too. Dawson just said "oh mommy, Gabriel is bleeding". He wasn't worried, just pointing out the obvious. Tyler often bled out the mouth, so it was no new sight for Dawson. Sad what kids get used to. Blood should not be considered a common sight!

Dawson has been doing amazing. Between the Autism Center therapists and the suppliments, he has really opened up. The words are coming so fast, his sentences are even fuller. He came up to me this evening and said ROAR! I reacted and then he got all serious and said "oh sorry mommy, did I scare you?" and he gave me a hug. Today he also stopped at the kitchen where I was making supper and said "mom, I'm gonna go potty, then go watch movie and eat strawberries. Ok? Ok mommy?" he waited for my response before smiling and happily running off to the bathroom, pleased that I was ok with his plan. Before he didn't care what I thought, he just did his own thing. He still does sometimes, but he has been asking for more things lately.

Dawson has also been more social. He gives everyone hugs and kisses. We were at Pizza Ranch the other day and he went over to the booth behind us and said "hi! how are you doing?" and was standing nearly leaning on the lady. Thankfully she was very nice and got a kick out of him. I told him he needs to come sit down and he looked at me funny and said "mom, they friends!" (like, duh mom!) He proceeded to point and span his arm to the whole restaurant and said "allll friends!". They call it socially inappropriate, but maybe the world needs to see things that way sometimes. Viewing the world in a positive light, where everyone is viewed as a friend. :)

Those toys we gathered in honor of Tyler's birthday were finally donated. It kept getting put off because of illness and busy schedules. I also contacted HopeKids, an organization that provides free activities for children with cancer and other long term illnesses and their families. They now visit the hospital twice a month to bring gifts to their kids, so I asked if I could donate toys. They haven't gotten any toy donations before, so they were very excited to get some help with the project. In all there were 63 toys. I gave 41 to Children's and 22 to Hopekids. I also unpacked my stash of cancer books, I have no use for them and thought they would make a good addition to the parent lounge for resources. So they have 16 new books as well. I also contacted Blair's Tree of Hope and donated a large bag of blankets that we never used, so they will go back to the Oncology floor. Feels so good to give back to the kids after recieving those services and toys for the last couple years!

On Sat, May 19th I'm walking a 5k for Blair's Tree of Hope. They give grants, gift cards, blankets and other things to Childhood Cancer families. She lost her daughter to cancer at 16 and she has been so supportive to us. She even sat with me during that last week and it was nice to have some understanding company to pass the time with. If you are interested in walking with us, we'd love to have your company and support! It's $30, we're walking as Team Tyler. The event info is here http://www.active.com/5k-race/rockford-mn/blairs-tree-of-hope-5k-run-walk-2012

Gabriel has been really walking all over the place! He's getting fast too. I put him on the couch after he was trying to "help" unload the dishwasher. I walked back and about 5 seconds later he had already caught up! Yikes.

 Dawson has been liking this monkey lately. I think it's a comforting/security thing. He doesn't like it used as a harness, but just likes having the buddy on him.

 My sister and I, we dyed our hair at mom's house. It was fun! It's nice covering up all those grays.

 Gabriel sleeping. I love sleepy babies, they look so sweet and cuddly.

 My newest shirt. Unfortunately I ordered a large and it's more like the size of a medium. :(  Hopefully I'll shrink into it some day!

 My sweet boys

 My friend Heather came over on Sunday. Was so excited to see her and the kids again. I met her in the cities and she helped me by bringing Dawson home from the Autism Center each day. Her little guy is Gabriel's age and her daughter is Tyler's age.

 It was fun seeing how big her little boy got, but everytime I see a child Tyler's age I just have to wonder how big he would be now. She's so adorable though!

 Dawson was taking pics

 He even got a pic of Heather and I

 The boys look very lost in conversation! They really enjoyed eachother's company. :)

They are so adorable!!

The rest of this week will be fun. Tomorrow morning is our last MOPS, then a friend is coming over. We don't see eachother as much as we need to! Saturday is an event for cancer parents, past and present. It's a lunch and spa day. Very much looking forward to relaxing with those ladies again! We just had a supper gathering last week. I really miss seeing them all! I feel so disconnected sometimes, inbetween the cancer world and the regular world. We don't quite fit in with either, but both are very comforting to have and we are working on settling in and figuring things out. My mind is very forgetful these days. It's very frustrating. I thought "pregnancy brain" was bad, but grieving mommy brain" is much worse! The routine stuff I'm usually ok with, but the odd stuff I often forget. Like I accidentally double-booked my friends on sunday! I felt so bad. I had to cancel one at the last minute. Hopefully I won't be so scatterbrained for long, but the moms who have been grieving for much longer than I say that it doesn't really go away. I guess it's just another thing I get to learn to deal with.