A New Normal

As I write this, Andrew is sound asleep in his pack and play in our room. That is the one of many changes that has taken place over the last few weeks. As a parent before the children are born you make lots of statements about how you will raise your kids and things they will never do. My child will not watch tv until age 5. My child will not have soda or stay up past 8pm. My child will sleep through the night by 8 months and not end up back in our room. Well, over the past few weeks all of those statements have blown away in the wind. We are giving Andrew anything to boost his weight gain and give him energy, including M & M's for breakfast or ginger ale in his sippy cup. We have allowed him to watch movies with us until 10pm when he is scared in the stark hospital room. And his pack and play now resides in our bedroom right beside mommy and daddy. We decided it would be easier if he needed us in the middle of the night. So Andrew is now sound asleep in his crib with his Mickey Mouse.
 The last two days have been interesting. I have tried during many parts of the day to wrap my arms around a new schedule or daily plan. There must be some consistency or regular behaviors. However, as many of you know with kids alone, plans change. With a little guy with cancer things change CONSTANTLY. Andrew seems to have great mornings full of food and Candyland game playing. Today we even took him out to Target. He is on day 10 of his chemo cycle and the doctors thought this would be his lowest time. So far he still seems to keep going. Part of me is wondering if we haven't reached this low point and another part of me smiles because I think it is your prayers. Andrew had a pillow fight with Rick, read books with his Nanny, and enjoyed playing Little People in the playroom. It has been a good day. A day that might urge my actions and thoughts to return to "normal." Maybe this isn't that bad I think. I can handle this. I can clean my own house. I can make my own meals. I can be a mother of 4, right? However, after thinking those thoughts confidently a large part of me sinks. I still have a little boy with cancer. It isn't gone.  The road is hopeful, but not over. If this afternoon is like yesterday it might be filled with crying from all parties here at home, stress, and discouragement. Our battle is not won yet and the cancer is not gone. I love schedule and routine. I am seeing how much of every part of my day is planned. I know when I will do chores, make phone calls, bathe babies, snuggle and have couple time with Rick. But now, I have no idea what the next hour holds. I try to enjoy each minute while at the same time feeling anxious about what is about to come. Will I be able to handle it? Is it okay that I am not "up to par?" Am I am burden to those that so willingly want to serve us? It is hard and the struggle is real.
 I think some of the hardest things to get used to in this new normal are the feelings of numbness. Shock that this is happening. I am numb with gifts that are given. I am numb with great periods of time we have as a family. I am numb about what is in the future. I want to be elated or joyful or hopeful but the weight of this experience can just numb me. Sometimes I even appreciate the sadness and fear that remind me I am still living and walking through this.
 We are doing okay. We are on day 10 of this chemo round. So far Andrew hasn't gotten sick and needed to go back to the hospital. We have had amazing help from family and friends with meals, cleaning, childcare, and love. Each day brings its own challenges and needs and I am learning and that is just the way it will be for a while. I will be needy and weak and not able to pull myself back up. I will need people to carry me and remind me often that we are not alone and there is help. I will need others to remind me in the darkness that God is still in control and not disappointed in me because I can't help Madi with her speech therapy or spend hours each day with each child. It is a very new place for an extraverted, organized, type A personality to be. But the Lord is showing me that this is where He wants me to be and possibly remain. Our lives are not our own. He alone plans each day and can change all of our schedules if He so chooses. I am learning to hold my hands loosely around my family, friends, time, pleasures, and each moment. This is our new normal.