Why? Because Ruby is at Camp Hobe (up Settlement Canyon) for the day enjoying the day being a kid with other kids and their siblings who are just like her. A port, central line, meds, fuzzy hair, no hair, so many needles...cancer has brought us into a compassionate connecting realm of life that can unite parents and kids in a unique way. We're all parents, they're all kids. We all want to have joy and safety and health. I'm so grateful for all the volunteers, time, and money that make Camp Hobe happen. Siri and Jane will take their turn but get to stay and sleepover all week-perhaps a bigger deal for me than for them! They've never done anything like this and I love that they are so excited to go.
We carpooled with two sisters we met through cancer and live in Sandy. The one Ruby's age has had cancer almost her entire life, multiple relapses. As she and Ruby chat, take each other by the hand to skip off and look at rocks together my heart melts. They are alive and happy. They have deeply empathetic and understanding hearts. I found myself lingering, wanting to keep walking behind them, watching them as I experienced these few moments through their eyes. I was so drawn to them, I want to be like them.
Kids are awesome. And amazing.
Ruby had another scan last week. GREAT NEWS! We had gotten the impression the tumors had hit of plateau. Stable is good, its better than growth, but I had hoped for more. Dr. Whipple was gone so we saw another doc, which was fine but more generic conversation. Dr Whipple called a couple days after and said that there is only one visible tumor, and that yes, its is smaller. Wooooowwww! There are spaces in her lungs that on the scan seem like empty space because of where tumors once were. And this last tumor may still be active, but its getting so small its tricky to measure.
So we'll just keep on keeping on. Med once a day, next scan will be August or Sept. Ruby sprained her ankle on the trampoline Memorial Day so it was convenient to get an xray just before the chest CT. It still has swelling but doesn't hurt and the bruising is fading.
We saw Dr.Schiffman and Dr Wendy at Huntsman in May. Kind of a check in and do a little more testing to see if they could find anymore answers. Out of 83 genes tested only one had a mutation-Ruby has a BLM germ line (meaning every cell of her body not just the tumors that came from either Mark or I) but it would never matter unless whomever she has kids with one day had it too...two copies of the mutation result in Bloom Syndrome. Science and the study of genetics is a huge world I feel like is just being cracked open. Some people would prefer to know, or not know findings like this. As of now, I like to know.
Ruby graduated preschool, is jonesing for Kindergarten to start already.
Mark and I celebrated 13 years since being married Thursday May 26, 2005. We got two babysitters for the evening, thankful for Cheryl and Liz who watched the girls no charge :)
We saw Dr.Schiffman and Dr Wendy at Huntsman in May. Kind of a check in and do a little more testing to see if they could find anymore answers. Out of 83 genes tested only one had a mutation-Ruby has a BLM germ line (meaning every cell of her body not just the tumors that came from either Mark or I) but it would never matter unless whomever she has kids with one day had it too...two copies of the mutation result in Bloom Syndrome. Science and the study of genetics is a huge world I feel like is just being cracked open. Some people would prefer to know, or not know findings like this. As of now, I like to know.
Ruby graduated preschool, is jonesing for Kindergarten to start already.
Mark and I celebrated 13 years since being married Thursday May 26, 2005. We got two babysitters for the evening, thankful for Cheryl and Liz who watched the girls no charge :)
My bike ride was zeebessst. Perfect weather and great company. Cousin Megan and I drove up Friday to Logan and stayed with cousin Erin in her beautiful new house and cute girls strewn about. I loved seeing her real life and being in her home. I think us moms often discount how influential we are. We got up early Saturday and joined the ranks of amazing women. We biked just a little bit more than we ate and socialized :) I felt great riding but definitely could have slept or rested in bed late into the next morning if life permitted.
While I was away Mark took the girls to Dream Night at the Zoo. A new event for us, its a night where the zoo is open only to families of kids with cancer, disability, similar situations. Chik fil a provided free dinner, there was face painting and they loved it.
The Fetzer cabin (my moms side of the family) has been opened for the summer so the girls and I went to family dinner in Kamas last Sunday, slept over at my Mom and John's, then went up to the cabin for the day Monday. The girls opted to cabin instead of roast in the heat at the school Field DAy. We soaked in the time at my moms more than normal I think since their house is going up for sale soon. Sometimes you have to do the necessary. I was a tired mom by time we got home Monday late afternoon but well worth it.
Jane ran her heart out at the schools Jog a Thon and I was psyched to see Siri also clipping along at a great pace to beat a couple boys from her class :) Jane scored all 3 of her teams goals at her last game and I often find her kicking any ball around the house/outside she can find. Siri chopped her hair for the summer! I love that she has thick long hair that novice hair braiding mom like me can do, but I may love even more that now she can easily brush it herself and jumping on the trampoline with her hair down isn't an instant rats nest. Siri and Jane loved their teachers this year and will miss them. Thank you teachers for all you do and all you see and believe in the kids you're umbrella is over.
Annie. Annie's top hairs fit in a little piggy these days, making her even more adorable. That fact does not make her diapers any less gross though. We often find her on the kitchen table, piano, bunk beds or wrecking anything on/around my computer desk area. Outside is still her thing, where she seems happiest. Her face, as does the rest of ours, beams when Mark walks in the door. She's also finally surpassed 20#. I do love that she's still light enough to carry and swing and snuggle in our arms.
I was looking at Mark yesterday evening across the table as we had company over, chatting on the back patio. His face looked experienced to me-more lines, freckles, compassion...usually I see him the same as when I saw him in high school but last night I could see all that he's done and become and becoming. It just made my heart and face literally smile observing that my dreams are real-doing this life with him. I was obsessively in love with him when we were teenagers, before we got married. We'd spend as much time as we could together and I'd think of him when we weren't together. Now we are often ships passing in the night, taking care of kids and work and church service and and and. So I see him, but we often don't feel like we are really with each other except for snippets of the early morning or late night. even when we're both home together. We are certainly more worn out and tired in this phase of life than we used to be. And I don't have to be physically with him all the time. I feel like he is literally part of me. What I am, what I want, how I think, what I do, is part of him. Really hoping he feels the same because this is a sure long paragraph of heart spilling ;)
Life is good.
Hmm...which reminds me. I deleted Instagram off my phone. President Nelson, the prophet of The Church of Jesus Christ of Latter Day Saints, advised the youth to do a 7 day fast from social media. I'd debated taking a break, but that advice made it a cinch in my mind and heart to delete it. And I don't feel like I often compare myself to others or am following accounts that don't improve my life. But its the addiction, the buffer, the time spent posting and checking, that I recognized I needed a break from. I appreciate this blog to write my thoughts, and people can check it if/when they want.
I also went to a parent education night at Brighton High School a week or two ago with Collin Kartchner who gathered a panel of professionals to have a conversation and educate us about kids, parents, phones, and social media. Long story short-literally hold/hug, talk with, be with our kids more. More night games, less screens. More educating them about a responsible digital footprint, more empathy, less pressure and criticizing.
A few moms in my neighborhood/church group gathered at the park and we talked more about it. Its a village effort and I appreciate the open conversation so that we can feel like we're looking out for each other and our kids.
I am always loving conversation on improving life so weather you're a step ahead of me or a step behind, reach out to me and lets chat on the patio while the kids play. I'm starting a 7 day house cleaning, aka detox, of my body/liver/cells tomorrow, Sunday through Saturday. I'm wanting to create a better chore and meal planning system and thinking how to go about creating a family creed so that as we have an overarching theme I can work backwards so that we have more tangible goals and guide lines to get there. Advice welcome :)
While I was away Mark took the girls to Dream Night at the Zoo. A new event for us, its a night where the zoo is open only to families of kids with cancer, disability, similar situations. Chik fil a provided free dinner, there was face painting and they loved it.
The Fetzer cabin (my moms side of the family) has been opened for the summer so the girls and I went to family dinner in Kamas last Sunday, slept over at my Mom and John's, then went up to the cabin for the day Monday. The girls opted to cabin instead of roast in the heat at the school Field DAy. We soaked in the time at my moms more than normal I think since their house is going up for sale soon. Sometimes you have to do the necessary. I was a tired mom by time we got home Monday late afternoon but well worth it.
Jane ran her heart out at the schools Jog a Thon and I was psyched to see Siri also clipping along at a great pace to beat a couple boys from her class :) Jane scored all 3 of her teams goals at her last game and I often find her kicking any ball around the house/outside she can find. Siri chopped her hair for the summer! I love that she has thick long hair that novice hair braiding mom like me can do, but I may love even more that now she can easily brush it herself and jumping on the trampoline with her hair down isn't an instant rats nest. Siri and Jane loved their teachers this year and will miss them. Thank you teachers for all you do and all you see and believe in the kids you're umbrella is over.
Annie. Annie's top hairs fit in a little piggy these days, making her even more adorable. That fact does not make her diapers any less gross though. We often find her on the kitchen table, piano, bunk beds or wrecking anything on/around my computer desk area. Outside is still her thing, where she seems happiest. Her face, as does the rest of ours, beams when Mark walks in the door. She's also finally surpassed 20#. I do love that she's still light enough to carry and swing and snuggle in our arms.
I was looking at Mark yesterday evening across the table as we had company over, chatting on the back patio. His face looked experienced to me-more lines, freckles, compassion...usually I see him the same as when I saw him in high school but last night I could see all that he's done and become and becoming. It just made my heart and face literally smile observing that my dreams are real-doing this life with him. I was obsessively in love with him when we were teenagers, before we got married. We'd spend as much time as we could together and I'd think of him when we weren't together. Now we are often ships passing in the night, taking care of kids and work and church service and and and. So I see him, but we often don't feel like we are really with each other except for snippets of the early morning or late night. even when we're both home together. We are certainly more worn out and tired in this phase of life than we used to be. And I don't have to be physically with him all the time. I feel like he is literally part of me. What I am, what I want, how I think, what I do, is part of him. Really hoping he feels the same because this is a sure long paragraph of heart spilling ;)
Life is good.
Hmm...which reminds me. I deleted Instagram off my phone. President Nelson, the prophet of The Church of Jesus Christ of Latter Day Saints, advised the youth to do a 7 day fast from social media. I'd debated taking a break, but that advice made it a cinch in my mind and heart to delete it. And I don't feel like I often compare myself to others or am following accounts that don't improve my life. But its the addiction, the buffer, the time spent posting and checking, that I recognized I needed a break from. I appreciate this blog to write my thoughts, and people can check it if/when they want.
I also went to a parent education night at Brighton High School a week or two ago with Collin Kartchner who gathered a panel of professionals to have a conversation and educate us about kids, parents, phones, and social media. Long story short-literally hold/hug, talk with, be with our kids more. More night games, less screens. More educating them about a responsible digital footprint, more empathy, less pressure and criticizing.
A few moms in my neighborhood/church group gathered at the park and we talked more about it. Its a village effort and I appreciate the open conversation so that we can feel like we're looking out for each other and our kids.
I am always loving conversation on improving life so weather you're a step ahead of me or a step behind, reach out to me and lets chat on the patio while the kids play. I'm starting a 7 day house cleaning, aka detox, of my body/liver/cells tomorrow, Sunday through Saturday. I'm wanting to create a better chore and meal planning system and thinking how to go about creating a family creed so that as we have an overarching theme I can work backwards so that we have more tangible goals and guide lines to get there. Advice welcome :)
last day of school June 7, finally!
Siri's face cracks me up and Jane's style makes me proud
that she is confident in doing her own thing
after Ruby's last hospital day we went to Protein Foundry for lunch, per her request.
She asked to go to "the smoothie place where we went with Alexis"
had to throw in this oldie of my fam, before I was born,
up at The Meadow near the Fetzer cabin
Mothers Day this year was sincerely awesome.
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