I think I have written this post a thousand times in my mind but I haven't been able to bring myself to actually write the words down. The last post 3 months ago is about our sweet little Abigail's first hospital visit in Orlando. She was there for several days and eventually on oxygen with the RSV when I started to see signs of distress. I kept pointing out increasing oxygen needs and high heart rates out to my nurse. I am sure she is trained to be calm and act like everything was under control, but it was starting to annoy me that Abigail seemed sicker and no one else was starting to panic like I was--and I am not too high strung with my girls anymore. Finally, after a long afternoon of lethargy and respiratory distress, my nurse brought in the charge nurse and they discussed calling an ICU doctor to come look at her. At this point I felt validated...and alone.
I was on the phone when the doctor came in. I was desperately trying to find someone to come watch my other 6 kids so Josh could come up to the hospital as I anticipated a move to the ICU. I really needed him. It was so hard not to have the ready support of friends, neighbors and family that we had in Utah. We were just too new. Finally, the father of my daughters' friend (we called EVERYONE) came over for a while followed by our then new friends Mckenzie and Ben (it was Ben's only night off that week--so kind).
If I had been panicked by the thought of finding adequate babysitting, it paled in comparison to the panic that gave way when the doctor was finished. He explained to me that Abigail was doing very poorly and would wear out soon. Her little body was starting to give up due to exhaustion and that a plan to help her would need to be put in place. His plan was to transfer her ASAP to the Intensive Care Unit where she would be put on a BiPAP machine. It would breathe for her and allow her partially closed lungs to (hopefully) open up. She would be watched for a few hours on BiPAP and then, depending on how she was doing, he expected her to need to be sedated and intubated for possibly a week or more. I have no doubt my face registered the shock I felt. Abigail has been on "forced oxygen" in the ICU before but it looks about the same as regular oxygen therapy because it comes through a nasal cannula.
By the time that Josh got to the hospital we had just been moved up to the ICU and they were getting ready to hook her up to the machine. I was so glad to have him with me. Having the medical advances to save Abigail's life is truly a blessing, but seeing your child like this:
was just a little too scary. She was given a 50/50 chance of survival by the doctor upon her transfer to the ICU. At this point she had no immunity left. Her body had nothing to fight with anymore because all of her body's natural defenses against illness were gone. We called family to let them know and asked for prayers on Facebook. Now we had a huge dilemma--who would go home to be with the kids for the night? To complicate things, it was our daughter's 10th birthday the next day. She had been struggling with feeling forgotten and overshadowed for months. How could we not follow through with our birthday traditions and her party that had been planned for Friday night? Josh insisted on staying the night so that I could prepare for the birthday. It was so hard to leave her, and I struggled with guilt all night for not being there for my little girl. My amazing friend Mandi dropped everything she had going that weekend and drove 3 1/2 hours to be my hero. She and my friend McKenzie saved the day. They helped bake an amazing cake, cleaned my house, and took care of my other children. The party focused around a trip to epcot. I was worried about being miserable and wanting to be with Abigail. Luckily, we had a miracle that Friday.
When the nurses went to clean and change out all the BiPAP equipment that second day, Abigail was left without the machine for a minute or 2 and her oxygen stats stayed high enough that they decided to leave the BiPAP off for a while to see what would happen. She never had to use the BiPAP machine again! The prayers of our family and friends had become her immunity and allowed her little lungs to open up enough to work correctly again in such a short time period. She had to go back to oxygen and they kept her in the ICU for a few more days, but she made an amazing recovery. We feel so grateful to all those who took the time to petition on behalf of Abigail. I believe it made all the difference! We had more than our fair share of angels at our home as well. Mandi, McKenzie & Ben made sure my home & kids stayed in tact while our friend Morgan showed up at the hospital with Josh's favorite take-out and they goofed around like little boys until 3 am. The sweet ladies my mom works with took over her shifts for a week and a half so she could fly across the country to help at our home. That proved to be a tremendous blessing. Abigail was finally released about a week after she entered the ICU.
I was so excited to bring Abigail home so she could see her siblings again. Sadly, Natasha hadn't been feeling well for several days and we ended up taking her to the same hospital a whopping 6 hours after her sister came home. She was admitted that evening and ended up spending several days in the hospital herself with a virus that was not RSV. It was seriously crazy! Natasha's stay included oxygen but she never needed high levels, or ICU time, so we felt like her stay was a piece of cake. I did have to post this picture:
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.
