Sept. 9, 2016 125pm (Sara)
I have started to feel the fog lifting a bit. It’s been just about 7 months since Maya’s diagnosis and our lives have changed in unbelievable ways but today… It actually feels a little normal now. Maybe when they say “it gets easier” they don’t mean the meds get easier to handle or the side effects subside…they mean we adapt. We accept. We grow as a family. We move beyond grieving and into a new normal. All the cleaning and isolation once seemed so daunting. It now is just a thing we do.
Today we are hanging out at the clinic – it’s just a thing we do now. We always arrive to friendly faces. They are our new friends here at the clinic and with each visit we all get to know each other more. In fact, even Dr. Salo is easier to talk to. It doesn’t feel so frightening to ask questions or her opinion. Dr. Salo’s schedule is slower today so we actually got a chance to chat with her about things that didn’t necessarily surround Maya entirely. It felt like a grown up conversation.
It’s the little things that make our lives feel “normal”. We now know what to expect with most of our visits. We know exactly where the great breakfast burritos are in the Sierra tower cafe. We know what time “the animals wake up” down at the gift shop (Maya eagerly waits for the giant stuffed animals to be placed out around 9am). We know where the snacks are in the nutrition room. Maya has her favorite chair that she often chooses to sit in while getting accessed. Today, I was so impressed with Maya…she sat in her own chair (all by herself) while Denise accessed her…and she didn’t even need to hold my hand. What a surreal feeling.
I look back at the last several weeks and what we have been able to do: amazing visits with family, birthdays, trips to farmers markets, bike rides, lake trips, new friends, growing, learning, laughing, loving. 7 months ago, I anticipated more days like the first couple months. But really we have been able to enjoy. Our lives are changed. We are changed…but we are far from broken.
The support our friends and family continue to share is incredible. All the turmoil in our country and world is tangible yet we continue to be on people’s minds, in their hearts and prayers. Thank you from the bottom of our hearts. We truly can’t wait to be Out In The Wild more often so we can share our gratitude with you all. Please know there isn’t a day that goes by that we don’t feel the love and support. If only there was something we can do to let you all know how much you mean to us.
Maya’s ANC is 1874 today. Normal liver and kidney function. Her platelets and hemoglobin are with in normal range and she is truly just perfect. A day at the lake is in order.
Love is life.