Day 4

Saturday, August 21st
3:30am

By the time I went to bed it was midnight. I was overwhelmed by so many things. I was worried about how Nina would do with taking her meds in the middle of the night. Right before bed, it dawned on me that we could put the pills in a teaspoon of applesauce and by the time she would have to take them they'd be pretty soft. I prayed that my grand scheme would work and that she would comply. This would be essential to our ability to go home.

I was also overwhelmed by an idea my friend Linda had suggested. She had mentioned creating a "Wish List" on the blog, outlining things that people could do to bless our family. I understood what she was saying and in the few days that had already gone by we had received an outpouring of love. The fact of the matter was that I was worried about how people would take such a thing. I was concerned that it might look greedy or even creepy. Of course my friends had discounted my concerns saying that anyone wanting to help would know our hearts...nonetheless I was torn.

Then, at 12:15 in the morning I got a text from our friends Danny and Erika. They said that since they couldn't be there in person with us they wanted to send us their love and had paid for our suite. My mouth dropped. Just as I was contemplating Linda's suggestion, I got my answer from the dearest of friends. I recognized that everyone who loved us was heartbroken and grief-stricken and wanted to, perhaps even needed to, have a helping role. I prayed that God would ease my heart and help me learn to humbly allow others to help. Those of you who know me personally, know that I am slightly controlling and prefer to do things myself. Yet, God was teaching me through this situation that allowing others to help was not a sign of weakness, but perhaps strength. I really wanted to accept this but it was hard!

I don't think either Yvonne, Eileen or I really slept between midnight and 3am. We were all so worried. When my alarm rang at 3am, I practically jumped out of bed. My heart started racing. I went to the bathroom and grabbed the teaspoon of applesauce with the decadron. Eileen helped me prop up Nina and we asked her to take the applesauce. To say she was pissed off is to say it mildly. She looked right at me, gave me the stink eye, and said "NO!" "I want to go to sleep" she cried as she tried to find a spot to lie her head down. I told her she could go back to sleep as soon as she ate the applesauce. She looked at me again, opened her mouth, swallowed, and then crashed back onto the bed! What an angel! Eileen and I looked at each other and both released two huge sighs of relief! This was the little encouragement we needed.

Although Nina easily went back to sleep, I didn't. My mind kept racing. So much had happened in such a short period of time. I found myself praying again and again for a miracle. Not just for a miracle but for THE MIRACLE, for Nina's healing. As I sat in the dark of that hotel room, my heart was stirred and I began to see how our prayers for miracles were already being answered.

First, God had poured strength into my husband and I. Of course we were devastated but we were ready to go home and be in each other's arms. I had been so worried about my husband, but God reminded me that in our weakness there is no fear because His strength is overflowing. My husband's strength was heaven sent and I praised God for it!

Second, even though I was literally walking through the valley of the shadow of death, I was still surrounded by opportunities for happiness and laughter, like my daughter's smile and sassiness. This too was a miracle. Just a few hours ago, I spent time with 5 amazing women as my baby slept in the middle, and we laughed about the absurdities that had happened the last couple of days. How healing the feeling of laughter is! Who could have imagined laughter occurring in the ugliest place on earth! Praise God! 

Third, as I felt the heaviness of creating a wish list I got a text message from our friends Danny and Erika, saying they had paid for our suite! Miracle! I realized that a wish list was not wrong but a vehicle for those who love us to help and participate in the grieving process.

Fourth, I was completely stressed about Nina taking her medication but she had taken it beautifully! Miracle!

Fifth and final, I realized how many people had entered our lives and had blessed us profoundly. My heart swelled with love for my friends, the Marbans, and Dr. Brennan who had all stopped their lives to help us through this disaster. In a world swallowed by so much cruelty, it was nothing less than a miracle that I would have crossed paths with so many living angels! Miracle!

I thank God for each and everyone of these miracles! I am just sad that it took a catastrophe like this to open my eyes!

Saturday, August 21st
9pm

I was finally able to get back to sleep around 5am. We all slept deeply. I woke up again around 8 and met with my friend Jimmy while Nina continued to sleep. In an attempt to delegate some of my tasks and get help, I had asked Jimmy to brainstorm with me ways to support Teddy and the other kids in Nina's life that were going to be deeply impacted by this situation. The reality was that this situation was going to transform Teddy, Nina's cousins, and the children of our family friends who had grown up with Nina. There existed no doubt about that. What doubt did exist, pertained to how best to help the kids through this journey. Jimmy listened. Sometimes that is the best medicine in the world!

After Nina woke up, Eileen and Yvonne took her shopping where she bought some gorgeous purple and white polka-dotted shoes. Nina has always loved shoes! In fact, she has more shoes than I do! What is especially great is that Nina doesn't just love ordinary shoes...she loves wild and funky shoes. Her fashion style is impeccable, edgy, and so much fun. I wish I could take credit for her flair and style but if anyone deserves credit it is both of her grandmothers! They are the fashionistas and she gets her jazz from them:)

Then, while Eileen and Yvonne packed up our stuff, Jimmy and I took Nina to get a smoothie. At this point, Nina was still very ataxic and the steroids caused her to have behavioral ups and downs. When she was "up" she was hyper active. When she was "down" she was sleepy. As we strolled her through the streets of LA it was painfully obvious that to strangers, she was different...something was wrong. Their eyes said it all.

Then as we tried to have her drink her smoothie and eat her Pirate's Booty without incident, I began to feel the stares of pity coming from the strangers walking past us. My heart sank. For the first time in my adult life, I actually understood what if felt like for complete strangers to look at you with pity...and I didn't like it! I don't want pity for my child or for my family. I want love, kindness, and prayer. I have spent the greater part of almost fifteen years working with families who have children with special needs. I consider myself very empathetic and loving but that 15 minute outing at Jamba Juice has taught me more than any classroom, research study, book, or clinical experience ever has. It taught me humility and how powerful the giving heart of another person can be.

As we sat there with Nina literally spasming around, people starring left and right, my face burning with contempt for others pitying my child, I looked at my friend Jimmy. He did not say a word. He didn't need to. His dark brown eyes were simultaneously full of sadness and heartbreak for us, as well as more importantly, full of encouragement and love. In the face of hardship and pain, perfect words aren't necessary. All that is is necessary is encouragement and love!

Since we had arrived at Cedars all Nina had asked for was to 1) go home, 2) donut holes, and 3) scooter. We were on our way home (she was ecstatic!), she had eaten donut holes (bottomless pit!), and about every 30 seconds she would turn to either me, Yvonne or Eileen and in the sweetest voice say, "Scooter!" It was  very clearly a request and she was relentless :) For the past three months she had been talking about how she wanted to "earn" a pink scooter for getting stars (we use token systems with our kids to encourage cooperative and appropriate behavior). Sometimes she'd change her story and say she wanted the scooter from Santa for Christmas (the kid is smart!! she figured it would be easier to get the dang thing from jolly saint nick than to earn 500 stinking stars). I asked my husband to find a location where we could pick up her pink scooter and we found one.

As we made our way through Toys-R-Us, Nina's requests for "scooter" became more frequent and giddy! We hadn't seen her this animated in days. Then she saw it...the holy grail of girl motorized vehicles. It was perfectly pink and so Nina! She climbed on and beamed!!! Then the stock boy ruined my moment by saying that it looked like there was only one left in inventory, which meant it was probably non-existent. I said that I'd be fine with the display, to which he explained that was against the rules! Normally, I'm a very agreeable and amiable kind of person. But the events of the last 72 hours had transformed me. I took a deep breath (did not want to be too harsh) and politely asked if I could speak to him in private. We found a nook in the skateboard aisle and I pulled out the big guns...I explained that my daughter had an inoperable train tumor and had 3-6 months to live. I told him I needed him to find me that scooter or sell me the display. The poor kid went pale!!! He muttered something unintelligible and then said he was going to find the manager :)

The manager came and gave me most managerial of smiles. He was in charge. I repeated my request and he very confidently said that it was against company policy to sell the display model. Now I was getting pissed off! They were going to sell me that damn scooter! I took a second deep breath and told him that my daughter was dying and I needed that scooter, otherwise I needed him to go tell her that it was against company policy to sell her the display, and crush all of her dreams. The manager went pale. Within a few minutes they had miraculously found the last new one in the inventory room. I hated pulling out the mother of all cards, but a mama's gotta do what a mama's gotta do! I should also mention that before we left, we picked up Teddy the most rocking green motorcycle. I was determined that he would not be left out and things would be equal.

I really wish I would have recorded Nina's facial expression when we pulled into our driveway. She was glowing! And her glow seemed to bloom to new heights when she saw her daddy! As soon as she heard his voice, "My honey-girl!" she ran into his arms! Todd was precious. His entire body seemed to relax as soon as he picked up his little girl. I knew at that very moment that we had done the right thing by coming home!! Teddy came barrelling down the road on his bike and gave us all hugs. When he saw the enormous motorcycle box in the back of Yvonne's van we went ballistic! I wish I could have bottled the happiness we all felt at that moment.

Happy in her daddy's arms!

The rest of our late afternoon and evening was like something out of a dream. We were so thankful to be together that it didn't matter what we did. Our amazing neighbors, the Vinealls, helped us assemble the scooter and motorcycle, and within hours the kids were riding their new toys throughout the neighborhood. Nina was so proud. Teddy was showing off. Todd was relieved to have us back home. And I was able to breath better with my family at my side.