Thursday, February 17, 2011

Day 175

Tuesday February 8, 2011

This was the most awful night yet!!!! Nina was up every couple of hours sobbing and screaming. "I can't get comfy!" she shouted as she slapped me for the umpteenth time. She was too hot, she was too cold, she was starving, nothing tasted good, her toes hurt, the pillows weren't right, EVERY THING was WRONG!!! For hours, Sosie and I did everything we could to make her comfortable any happy!!! We literally were up for hours, trying everything in our capacity to find out what she wanted to eat, how to cool her off, how to calm her down. Nothing worked!!!!! Eventually around 4:00 am I could tell Sosie had reached her limit. As Nina started hitting me again and screaming, Sosie covered her head with the blanket. Enough was enough. I made Sosie get up and go to Nina's bedroom, where I tucked her in and told her to get some sleep.

I then made the decision to do a very hard thing. I returned to Nina and told her I loved her very much and that I understood she wasn't feeling good but that she couldn't scream any more. She hit me and told me I was stupid. I went to the kitchen and made her some butter toast. When I returned to her side I told her she needed to take a bite. She screamed and hit me. I tore a small piece and told her to eat it. She screamed, "NO!!!" I then explained that if she kept screaming and crying that I was going to have to take her to the hospital because otherwise she must not be feeling well. I hated doing this but I felt like I was stuck between a rock and a hard place. She then screamed, "You're the meanest mama in the world!!! I dont' love you any more!!!" I didn't say word, but gave her a piece of toast. She threw it across the room. I gave her another piece and told her to eat it or that I'd have to take her to the doctor. She put in her mouth and angrily ate it. I quietly gave her another piece and she threw it. I gave her yet another and this time she ate it and then....then she reached for another piece. After this piece, she ate the entire slice of toast and drank a cup of milk. Within another couple of minutes, she was passed out! Finally, she was asleep. Nina slept for the next 5 hours and so did Sosie!! Sometimes, a mama just has to be firm to help her cub through a hard time!

Once the girls were sound asleep, I showered and before long it was time to get Teddy to school. He is such a sweet boy!!!! He woke up in a great mood as I crawled up next to him, "Good morning love bug!" He just smiled the biggest smile! It melts my heart that something so simple as greeting him as love bug makes him so happy!!! He is my precious heart!

I realized after dropping off Teddy that I was exhausted!!! Danny and Grady came over shortly after the girls woke up! It was good to have his company. Nina thought Grady was "so cute" but was completely annoyed that sometimes he didn't respond to her. I explained that he wasn't even 2 years old and that sometimes small kids have a hard time consistently responding. Apparently this wasn't a good enough response. I just laughed! Nina had become one of the least consistent responders ever and here she was criticizing Grady :) My darling girl!!!

After getting her make-up done, Nina was ready to go have lunch at IHOP. Since waking up she was eager to do so. However, once we got into the car, she started screaming that she didn't want to go. Sosie tried to calm her down and lighten up her mood but Nina hit her! This was the first time Nina had hit her. I could tell Sosie was surprised even though she beautifully played it off. By the time we arrived at IHOP, Nina was in full throttle tantrum mode. I had Sosie join Danny and Grady in the restaurant while I tried to calm down Nina. I explained that I could order the food and take it home for us to eat, that we didn't need to stay at the restaurant. Then she started to tantrum that she wanted to go inside. I just commanded myself to breathe!!! My heart was racing and my mind flying all over the place trying to figure out how to help Nina. I felt so helpless!!!! I explained to her that I was just going to wait until she was calm. 5 minutes later, she stopped crying and told me that she was ready to go inside. As I picked her up to put her in the stroller, she clamped down on my shoulder and bit! She bit me hard, so hard that she actually tore the skin :( I put her down and firmly told her that she couldn't bit that it was mean and hurt mama!!! Immediately she started crying and pulled me in for a slobbery kiss, "I'm sorry mama!" My heart broke. She can't control herself!!! I kissed her back and reassured her that I loved her!! My heart and soul ached! I needed some coffee!!!!

The rest of our time at IHOP was great. Danny treated us to lunch so I told Nina to go all out and she did. She ordered pancakes, chicken strips, and mac-n-cheese :) SosieSosie and Teddy. We killed some time before picking up Teddy by driving around. Nina napped and Sosie and I talked!!! Spending time with Sosie was an absolute gift from Heaven!!! Helping her organize her school work, shopping, talking about life was such a good distraction. Time spent with Sosie made me feel normal again....albeit briefly!!!

Eventually we made our way to Nordstrom's (Nina's choice!) for some shoe shopping. Unfortunately her good mood did not last long and she screamed and hollered that none of the shoes worked. She even smacked Sosie again, and with me it was an all out beat down :( Thank God Sosie was there with her great fashion sense. Anything I picked up or suggested was immediately met with, "NO!!! that's ugly!" Finally, after the poor sales girl had gone through about 20 boxes, Sosie helped Nina find a beautiful pair of pink sandals!! With her new sandals and dresses in tow, Nina suggested ice cream!! We were all relieved that it was ice cream and not screaming!!!!!!

When we got home, Todd was already there. Nina was so happy to see him. Teddy took out his Star Wars guys and started to play. I then noticed that Sosie had disappeared. I looked around and found her in Nina's bedroom, laying across the bed. I knew what was happening. I walked in and shut the door behind me. I crawled up next to her and kissed the back of her left shoulder. I heard the soft sound of tears and sniffles. I looked over at her beautiful face and caressed her cheek and asked her to talk to me.

Talk she did!! We talked for over an hour. We talked and sobbed and talked and sobbed. In sum, Sosie realized Nina is dying right before her eyes and she was full of pain because all she wanted to do was make her happy and didn't know how to!!! I just held her and told her how much I loved her, how incredible she was, and how much joy and happiness she brought to Nina's life. Our conversation was long and profound. Sosie is suffering just like the rest of us, questioning how this could be happening to a small innocent little girl and doubting her ability to do anything to help the situation. She had lots of questions about how the tumor was causing Nina's illness, how it was killing her, how she would die, would she be in pain, what would happen to Teddy.

Then the really big questions came. She sobbed and asked why God wasn't healing Nina and why He had allowed this to happen. I explained that we shouldn't lose hope, that I will not lose hope for a miracle until Nina takes her very last breath. Until then, we must continue to hope. I also added that God did not cause this illness, it is simply part of the sadness that life can be sometimes, that on the contrary God's heart is breaking like ours and that He is crying right along with us. Sosie cried and asked why would something like this happen. This is the hardest question to answer because we are all burdened by it. I did my best to explain what I sincerely believe. I told her that we will more than likely never know the purpose of Nina having this tumor and that we can drive ourselves nuts trying to figure it out. I do believe that there is a purpose, however, we lack God's ability to see all of history and time. I explained that Nina had already transformed us all and that each transformation has now changed the course of history, making impacts that we may never see for generations. I told her that perhaps Nina's illness would transform her so profoundly that it would compel her in ways that she would have otherwise never been open to. For example, maybe because of her own journey with Nina, Sosie would decide to move to Santa Barbara or LA and pursue a career in fashion like she wants to, and maybe years later she'd met someone wonderful and marry him, having a child whose own child would someday find the cure to Nina's tumor. Without Nina transforming Sosie, these things may never happen. What is hardest, I explained, is that we have no answer the "purpose" question. It is simply an awful terrible and unjust thing that happened.

I also added that it is okay to be heartbroken and grief stricken, that if we lose Nina we will always live with a piece of our hearts missing. However, I also emphasized that we have two choice, letting this tragedy destroy us or owning our sadness and then stepping forward to create happiness and bless others. I explained that as Nina's mom this is the cruelest and most painful of roads, but that I refuse to be destroyed, that I will spend the rest of my life modeling to Teddy and her and her siblings what it means to have a grateful heart and strive to create some happiness in the midst of this terrible and sad world. Then Sosie said something to me that shook me to my core. She looked at me with those perfect blue eyes and told me she understood and that every time she spoke to me or read my blog she was amazed and inspired by me. I just started to sob and reached for her hand. She then said that she admired how strong and fierce I was about being positive and that she wanted to live her life the same way. I could not believe my ears. This rascal that I had helped potty train and spent so many hundred of hours praying for now admired me!!! I cried and cried and kissed her over and over again! It seemed like we cried for years but it was only an hour. We wiped our tears and eventually made our way back to the kitchen to start on her homework. I was so thankful for this time with Sosie. It was humbling in every way!!!!

Our day had started hard and it maintained it's difficulty until well past midnight. Teddy and Sosie completed their homework while Nina screamed at Todd for practically every reason. Danny returned at dinner time and brought everyone Panda Express! Although she was happy he brought Panda, the plate Todd put it on was totally wrong. SMACK she struck the plate almost sending it out of Todd's hand. I remembered why she was screaming and suggested that we put her food in the container. Nina does not want to be treated like a baby. She wants to be a big girl and eating food out of a tray is way cooler than on one of mom's plates!

Unfortunately the screaming did not subside :( The screaming and yelling was so bad that it kept poor Teddy up for 2 hours. During this time, he tossed and turned in his bed and I did everything (tickling, back massages) to help him relax. Downstairs I could hear Nina screaming at Todd, Danny and Sosie. "I'm starving!!!" she would yell and they would offer her a litany of choices but none were right!!! I could hear the desperation in their voices as they searched through every cabinet, nook and cranny. Once Teddy was asleep I went downstairs and spoke with Nina. I asked her if she wanted yogurt and she said no. Then I asked her if she wanted a banana and Taco Bell and she immediately stopped screaming and nodded affirmatively. Quickly Danny have her a banana and ran to Taco Bell. Later when he returned he told her he had literally been the very last costumer and that when he left the employees had locked the doors. Phew!!!! That was a close one!!

Danny returned with T-Bell and we all munched, no one happier than Nina. It took her another 1.5 hours before Nina finally fell asleep. During this time, Danny either discussed the moral and political implications of the Jersey Shore with Sosie or just sat in the kitchen and sent me ridiculous texts to make me laugh. Either way, it was a delight having his company. Danny is a friend we can count on and it was wonderful to have him here. Danny is also a friend who is a rascal and he was determined to take me out for some fun. Unfortunately, by the time Nina fell asleep everything in SB was shut down except for some really creepy bars that neither of us were eager to step foot in. So instead....he gave me a warm hug goodnight :) A warm hug goodnight from an old friend (literally and figuratively speaking!) was exactly what the doctor had ordered!!!!

1 comment:

  1. You can let Sosie know that Nina's illness has changed hundreds if not thousands of lives. I've been a Christian for most of my life, but my relationship with the Lord has been forever changed because of Nina. I've realized the power of prayer ~ not that God always does what we want, but that He always does what we need. I've seen time and time again through your posts how God has given you exactly what you needed when you needed it. And you're right, you may never know the purpose behind Nina's struggle here on earth, but people's lives are being transformed. I won't stop praying for a miracle.