Lauren is coming up on her 13th birthday in March. She is also coming up on her first 3 month check. She has been doing well, but is still exhausted all the time. All in all, she seems to be back in school and back in her sports. It is hard to even think about all she has been through. Except for her neurological headaches and her chronic exhaustion, she is such a typical kid. She has had many successes to reflect back on. In addition to celebrating her birthday on the 7th, we will be celebrating "Taylor Came Day" or the holiday Lauren made up to commemorate the day she met Taylor Swift. She still loves her. We are trying to make her realize that although we also enjoy a good TS song, we are not the Swiftie fanatic that Lolo is. Jonathan just got his license last week. He has a car, but cannot drive it until his GPA is a certain level, and, yes, I have high expectations for him, but he is capable. But, to improve their relationship, I am letting him take his car to school if he takes his little sister out to breakfast first and then he can drop her off at school. I do need to come up with some safe topics for them since he only talks about skiing , lacrosse, or hanging out with his friends and she can't seem to bridge the gap in the conversation without throwing a TS fact in there. I figure they will get it under control. She will think it is cool to hang with her bro and he will get the car. It is a win, win situation. But, we will see how it goes.
Today, I saw a woman I haven't seen in a long time. We have many reasons our relationship came about, but one of them is that we both have daughters with cancer. She lost her daughter last year and has been unable to talk to me since. It is just too painful for her. She was deep in grief over the loss of her daughter, as I imagine I would be too. But, today she had a different bounce in her step and she came over and was ready to talk to me. One of the unexpected things about this journey our family has been on is that our situation is painful. It isn't just painful for us. It is just too much for some people. It isn't their fault, sometimes things are just too hard for people to accept and cope with. It is hard not to feel hurt that your presence causes other people emotional pain, especially when that is the last thing you would ever want to do. But, today she could talk to me. It was wonderful. I told her that I could tell she was doing well and that she had a lightness about her. It made her happy. She has still consistently prayed for Lauren. She understands the fears that can creep up with a child in remission.
After she left, I spent some time writing about the experience and one of the things that came out of it was desiring joy. This year it seems our life has fallen back into place. A lot of times after traumatic events, you maintain life while in the fight, but fall apart after. But, lately we are starting to have times that don't involve cancer.....at all. Some days are completely cancer free....thank GOD!!! Today I realized that that isn't even good enough. I thought about my friend and realized that she would give anything just to have one more day with her daughter. Although I was determined after Lolo got out of the hospital to live like that, I just couldn't. It was so hard. It was hard just getting her well and back on her feet again. It was a whole year of hard with broken arms and headaches and not being able to make it through her days. Now, I still feel the pain of what our family went through and sometimes I am worn out. I think most people that knew me before Lolo was sick used to say I had a lot of energy and was a lot of fun....ok, so I am reaching. But, I tried to have a lot of fun and was always up for enjoying my family and friends. I used to have a lot of fun with my kids, that is for sure. But, I think we have been so caught up in just getting back to the way things were, we have forgotten to have some fun. Even Lolo is stressed out a lot. She has such a hard time now keeping up in school and she wants so much to get her strength back in volleyball, so she is working incredibly hard at that. I don't even know the last time that she and I had one of our usual dance parties together. Now you know we have changed because she and I ALWAYS found some time to dance. We have reasons to dance too. If you haven't heard, the little giraffe at the zoo was named Lolo after our sweet girl. We have this fabulous house that we can finally call our home and has no remodeling going on. I am done with all my PT for my hip and am getting stronger everyday. Phil and Jonathan are doing awesome.....and so far, Lolo is STILL in remission. Praise God every day for her health!!!! We have another check up on March 4th. I do absolutely hate not having a check up once a month to get confirmation that she is still in remission. It is good for her, though, to have some space from the hospital.
I do keep up on reading about everyday ways to keep her healthy and increase the chances that her body is strong and can keep this awful AML at bay. I keep trying all kinds of new ideas like adding fresh berries at night and increasing her sleep or buying her smoothies to fuel her energy. I keep reading about how to change her diet and decrease any chances of free radicals in her body. We have been having salmon once a week and I sneak in some flax when I bake for her. I have been trying to buy grass fed beef. Most of all I pray consistently for the continued health and happiness for both my kids; I will never take that for granted ever again. But, after today, I am so thankful that my friend is doing ok and I am really thankful that she gave me a wake up call to choose joy each day.
Part of what has been hard lately is that Lolo is such a typical almost 13 year old. She hates me! She hates the way I smile at her. I don't spread the preserves on her toast the right way. My music is ridiculous, my hair is stupid and my voice grates on her nerves. The little girl that smiled so sweetly at me and relied on me to be about 5 feet from her at all times to help her fight cancer cannot stand my presence. Like all mothers of tweeny teens, this hurts my feelings. I do have some perspective and I don't get my feelings hurt when she won't let me hug her. Lolo feels safe enough to push me away. It is a right of passage and although I do correct her for being rude to me, I am thankful that she is making her own way in this world as a typical almost teenager. It is just so hard for me not to want to squeeze her and kiss her on the had all the time and tell her I am thankful every single day for her sweet little self. Please keep her in your prayers!!! Please continue to keep all of these sweet children in your prayers, especially my dear little friends that have had some bad news lately.....please, please, please, pray for Gigi and Sammy. On a positive note, our buddy, Ollie is close to being done with treatment. He is doing well and as fierce as ever. Cooper is going to be done with treatment in June. Both Cooper and Ollie are the same age (5) and will be considered cancer free when their treatment is over. I love their moms dearly, both Jenni and Anne are my fellow cancer mom warrior friends. These women and children are my heroes; the dads aren't too bad either! Lolo has found some online friends to help support her. There is a support network of other kids that have cancer. I think that helps her. It is also hard too as sometimes she doesn't receive good news about their outcomes. I wish with all my heart that I could find a way to erase that reality from her awareness. In the meantime I will be better at celebrating what we do have...which is each other.
I hope you find joy in your day. I am going to be dreaming and scheming of all the fun and joy that we are going to muster up as this stinky, cold weather in Omaha comes to an end. Thanks so much for your continued support and prayers! It would be easy to find joy if TS could send one little 13 year old in Omaha a birthday card....after all it is her 13th. I am sure all of you know that 13 is Taylor's favorite number!