Monday, December 8, 2014

But We Wear A Smile

I teased my husband yesterday that the city slogan for Modesto should be changed from "Water, Wealth, Contentment, Health." to "Modesto - You Are Here Because You Have To Be." All joking aside the Central Valley has a few things going for it, the culture is very Christian and loving, big cities are driving distance, and the weather is mild. Until this week. The perfect, predictable weather of the Central Valley and LA area is about to get crazy. Weather forecasters have predicted moderate weather for Monday - Wednesday, possible rain on Thursday but on Friday they urge you to build and ark and gather two of every animal. Flash back several months to our friends at ABC News asking us if they could send us to Disneyland this holiday season. We found a small two week pocket of time where Emma would be allowed to travel before the tickets expire. I turned to Brad and said, "Are we tempting fate trying to go to Disney in December?" We both laughed and said, "No, it is LA!". Flash forward again, RAIN, big rain. On the day we plan to go to Disneyland. Sigh...there is nothing we can do to change the weather besides a funky rain dance to try to bring it on early so we are packing rain coats and umbrellas. We are just going to go and try to last as long as possible.

This week Emma did not have chemo but she did have to go to the hospital for a check in. Her numbers were good and she was cleared to travel for Disneyland. We were also told that during RSV season Cora (her younger sister) will not be allowed in the clinic. RSV season lasts about 2-3 months and Cora is a very clingy breastfeeding baby. She is the type of child to scream if I leave her and make herself throw up. Even if I found someone to watch her near the clinic I would still need to leave Emma to go nurse Cora and when I leave I have to have a legal guardian with permission to treat with Emma. This was a huge problem. I called a meeting with the manager of the clinic and our social worker to try to figure out a solution. The manager was trying to brainstorm for me and asked, "Don't you have any family members who do not have young children who can come help you on chemo days?" I broke down
crying. It was not her fault, it was my lack of family. It touched a nerve. "No, just me. Sometimes my husband but he is out of sick and vacation days." I could see the pity in her face. I knew she felt bad, she was just the messenger.

When you look around a chemo clinic you will see a child with a pair of adults typically. Usually a grandparent, sometimes a second parent or an aunt / uncle. Rarely do parents go alone with their child and even more rare is what I do, I go with two children each week. It is not the path I chose but it is my reality, I make do each week trying to just take care of one day at a time. This RSV thing threw a wrench in my system. After a long talk and some tears I left to talk to my husband at his work. His boss was very loving and totally understood our dilemma. She is allowing Brad to leave for a half day once a week to help with Emma's chemo but those hours need to be made up elsewhere which means even longer days for Daddy. Most days he is gone before breakfast and home after the girls have had dinner. I hate to think how much longer his day will become.

I am sharing this with everyone because chemo moms wear a smile. I had a friend say recently, "But you always seem so upbeat and positive!" When you see us we are distracting our children with bubbles and songs. We carry everything on us to make it easy to give medications, do temperature checks, and paperwork for emergency trips to the ER. But we are human, we hurt, we put the kids to bed and throw tantrums in an empty room yelling to God, "WHY?". Most days I feel on the verge of a nervous breakdown. Cancer broke my heart and God is slowly putting the pieces back together. Being a chemo parent is so much harder then the other roles I have played as a NICU parent, twin mom, and mother of three kids under two years old. This sucks. I feel so alone most days, even when surrounded by church and friends. Being a chemo mom is lonely. For at least the next couple months I will not wear the chemo day burden by myself and I will have my husband at my side.

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