Ok, so the whirlwind is over.
We know what he has, we know why he was so sick super fast.
We know what needs to happen and now we wait.
This is hard … for him, for me, for our girls, for anyone who knows and loves or cares about any of us.
We all want to do something. We all want to help. We all wish this was a bad dream.
This is where I am torn. I want to keep everyone up-to-date. I want everyone to pray. I want someone to be a perfect match for him so he can get better! But, I miss so much our normal life. I want it back.
This life isn’t normal for us at all. We are a family unit. We hang out all together a LOT. We are big on being at each other’s events, games, moments, etc. We always have each other’s backs. We are a family who all sit around our table and eat dinner together at night- whether that means 4pm or 8pm according to events happening that day.
We understand each other. Shyanna, Nikayta and I are introverted to the point that sometimes we just have to say, “ENOUGH. I don’t want to be around any people.” Tanise, Mark and Cadence seem to get energized from people. But, we all enjoy our space and the ability to live life the way we feel like living. I miss sitting in the sun absorbing as many rays as possible all alone in the quiet stillness. I’m sure the girls miss mom and dad being home.We miss our cuddles and movie times and the ability to look forward to the plans we had and have and feel happy and free.
The plans…. the celebration cruise we just cancelled. Thank God they are giving us our money back as Shyanna will need a car for her 4-5 hour road trip to college this fall. Graduation planning. Yeah, that’s still happening, but it isn’t looking quite the way we had planned. I want to be there and be excited for her… but it’s hard for her to be excited right now. I get it. But, I hate it. She was too tense to audition for the Commencement speech and you know what? It was a GREAT speech that she wrote! This makes me sad. As a parent, you don’t want your kids to be stressed.
And it isn’t just her…. it’s my other daughters, too. Going to school and trying to finish strong and keep their heads up while they worry and miss Mark and I …. And it’s Mark. Look at him laying in bed. I see him staying positive and making us all laugh and I think, “How is he able to keep this up?” Then I see the tears break way as he, too, is wishing he could be there. When he tells me he wants this event to be as normal as it can be. He doesn’t want them to bring up him having Leukemia and it is because, he, like me, wishes that our girls would be able to have what they are used to right now. He wishes they could have that normal, happy, celebrating life.
So many questions and concerns from everywhere and we are learning to live more in the moment. Our thoughts cannot really go beyond who is the match and let’s be in remission right now. It’s just too much and so far out of our control. The doctors keep saying, “Focus on what you can control.” And we are trying. Exercise, Food, Hygeine. I believe we also can control our attitudes but I would be lying if I said that sometimes, that is hard! It is a little harder I think when you are locked up all day and night within the walls of a hospital room and an oval hallway.
We continue to be thankful for love and support. Some of it is constant and unchanging which means so much- some of it is not as consistent and that is ok because we know everyone has their own life. Some people have been completely no where on the radar and you know they care- but it must be hard for all of you, too. Everyone handles everything in their own way. It is hard on everyone.
So, for now, I feel my job is to continue to be as “real” as possible. I have been crying almost all morning off and on. Now, I write. I will go run steps and do some pushups and that will help, I will get dressed and put on some make up and do my hair. That will help. But, the reality is that we are very helpless right now. We are relying on God and others. And, we are trying to control what we can and to make this time as normal as we can for our family…. but the truth is, we don’t even know what that is right now.
Living in the moment.
Remission/ Donor. We need both. Space and love. We need both. Hugs and prayers. We need both. Understanding and Wisdom. We need both.
This is me being real. This is how I feel today. I’m sorry if it upsets anyone. But, I was told to be real…. and that’s what I am trying to be.
PS- Mark wanted to make sure people knew that he is not allowed to have flowers (unless they are balloon flowers) because of the spores, etc. THANK YOU!