One morning "Nurse Minnie" came to visit Natasha. She brought her a bag with some fun little toys and a stuffed "Dori." To this day, Natasha still tells everyone she can about the visit. It was such a special, personal thing that nurse Minnie would stop by just for her. She showed everyone who came over for weeks her snapshot of them together. You would think she was showing vacation photos. She is now Minnie's biggest fan.
We celebrated their release from the hospital by attending "Families R.O.C.K." weekend at Universal Studios put on by the American Cancer Society. It was an educational retreat for families of children with cancer, but it was also very emotionally draining. It ended on a Sunday and we checked out of the hotel ready for church. I took the big kids and Josh took the little ones home. (We didn't feel that the twins were safe to face the germs that come with public places yet). That morning as I combed Natasha's hair, it started to fall out in chunks. Again! I thought that we were past the part where the hair falls out. It had started to grow back and was a couple inches long again. This shouldn't be happening--but it was. I spent half of church sobbing in my car in the parking lot. I'm not sure what was so upsetting. She was pretty cute bald and cancer stuff was such a "normal" part of our lives. I knew I was over-reacting but the thought of facing that highly painful 'hair loss' part of cancer again was so overwhelming to me.
This started a downward spiral for me and for my husband. We were like zombies just putting one foot in front of the other hoping that someday we could even HOPE again. There were more tears shed in those months than in our nearly 13 years of marriage combined. He was feeling the pressure of husband, father, & provider of a large family with children who would always be so expensive (worth it, but let's face it--expensive all the same) and wondering how to grow his law practice to cover the strain. I was feeling similar pressures and started longing for my days without responsibility. All I could think of was how much easier life was when I was single. It was so easy when my world revolved around me. There were no crying kids, dirty diapers or toy-filled family rooms. For a while it was like a scene in Stephanie Myers book "The Host" where an alien entered my brain and took over my body. I was totally nuts! I just wanted to leave and make it all go away. It was like the time I decided I would have my 4th child naturally and then labor got really intense. I was in so much pain that I hallucinated and really believed that the pain would stop if I could just get off that bed. (You should have seen Josh's face when I tried to climb over the bed rail!) In both circumstances, it was agonizing! On top of that, Josh and I hurt for each other and the pain we could see our spouse going through. Josh was scared that I actually would leave. We stopped sleeping more than a few hours at a time and would often cry together at 3 a.m. We felt like big failures. We could not see why so many hard things had happened to us in a short period of time. We felt overwhelmed and "picked on" so to speak. We would hardly even talk to friends or family. For all our education and training we just couldn't get our lives to work--like we were doing this "living" thing all wrong. I won't speak for Josh, but I know that I personally felt cloaked in abandonment and loneliness. It was like being in a dark tunnel with no light at the end. I wanted to bust out the side.
I knew I had to find a way out of this funk, but it was so hard when all my motivation was swallowed up in resentment, self pity and "what ifs". I just couldn't see our silver lining because there were too many dark clouds looming around me. The usual compelling forces were gone. I even became numb toward my kids. I know that this really doesn't adequately describe how I felt, but I think anyone who has had a truly desolate moment in their life will be able to relate to my attempt at explaining. Before we moved to Orlando, I belonged to a facebook group for Utah moms who had kids with cancer. They had recently kicked me off because of my move, but I remembered them talking about PTSD (Post-traumatic Stress Disorder). Bless, bless, BLESS the Internet for being a wealth of information on this subject relating to parents of cancer patients! As soon as we realized what we were struggling with and how common it was, we were finally able to start the healing process. It has taken a couple of months, but we finally feel better than normal again.
Looking back, I hurt most for our children. They had no idea why laundry was piling up and dinner was cold cereal every other night. Their parents were grumpy, inattentive and dismissive. Children are never as oblivious to our situations as we try to tell ourselves they are. As always, the Lord sends heroes to save the day. Josh's sisters Sally and Betsy (Liz) were ours. Christmas was the farthest thing from our minds and something I am not sure we would have even been capable of at that time. We feel so blessed for all those who so kindly contributed to our family's holiday. I know that Sally spent hours putting together a Christmas that we will never forget. Words are not adequate to describe our gratitude to those who have been so good to us throughout all our challenges. It was an immense relief to have the stress of preparing Christmas alleviated from our lives at that time.
In our journey, we saw a counselor. After hearing our story and the many things we had been dealing with (in addition to the cancer) she told us that we "wrote the book on dealing with stress". We left with an invitation to return, but only if we wanted to. We had worked so much out already. Although she was just joking around, her words did solidify an idea I had been toying with. I am going to write our whole, huge, "you can't make this stuff up" story for my kids. I hope that one day when they are adults dealing with some of the scars that come out of having the experiences they have with their sisters' cancer I can hand it to them and say, "Here, see another perspective too. We all went through hard things." I hope it will help them to see that it wasn't easy for any of us. What I hope to be able to communicate to them is what I have learned from all of this--that 'difficult isn't always bad'. Sometimes it's an opportunity to change into the person we wished we had known how to be before. Compassion, selflessness, patience, and love are learned incrementally through experiences that we are privileged to have. Each frustrating experience and challenging day brings us to a crossroad that will shape who we can become.
Yep, this blog post is really personal and it's not all happy. But, sadness is a part of our voyage with cancer and I won't leave it out. We lost our silver lining for a while, but I can accept that as a part of the journey. We have come out the other side of the sadness and depression. The world is just a little more vivid now. My kids are more loved than ever and getting a little bit spoiled. We've been organizing, crafting, and playing and getting along in ways we haven't for such a long time. In short, we are all happier. It's a good thing too, because tomorrow both girls are heading to the hospital for lumbar punctures (removing and checking spinal fluid for cancer and replacing it with chemo) and different but still more
chemo elixir from heaven. Followed by a week of heavy, painful steroids. Ahhhh....going to be a really long week.