Our Friday started very early....12:13am to be precise. That was when Nina woke up complaining that her belly hurt. Eileen and I were sleeping with her on a mattress in the living room. Since Monday, our dearest friends the Tourniers and Sweeneys had been performing an "extreme home make-over" on Nina's room. It was nearly complete and looking amazing! Nonetheless, the renovation meant that we were camping out in the living room. We didn't mind at all, especially when Nina started crying about her belly because our location in the living room gave us the quickest access to the restroom.
Quick access to the restroom was unequivocally necessary for two reasons: 1) We didn't want to risk a poopie accident half-way to the potty and 2) given how frequently she sat up and requested a jaunt to the potty, a short and non-circuitous route prevented even more fatigue or angst! The toilet tango must have occurred at least 15 different times before we had a success. With victory came slumber, however, by the time this happened it was already 4:15 am. Dang it!!! Why is it that when you most desperately need sleep your mind won't quiet down??? What a cruel joke!
Despite the exhausting night, we were thankful Nina had another bowel movement. Hopefully this would regulate her again and minimize her pain. The fact was that Nina had issues with constipation since birth. It just wasn't fair that these issues had to reoccur right now. By the time 8am rolled around, Eileen and I were exhausted, Teddy and Todd were off to school, and Nina was starving again! The bright side (if you can call it that) was that we didn't need to stress about parking. You see, when you are given the cancer sentence, you get a special "T" parking permit which allows you to park right outside of the cancer center. No need to drive through the parking structure, tediously searching for that great spot. One is reserved for you right out front. How many years of our lives do we waste in search of a great parking spot??? Far too many if you ask me now! This was one parking permit that I would gladly give up; I would rather park 100 miles away from my destination and have to walk barefoot on searing gravel than have this permit! But have it I did!
My somber mood was quickly evaporated when after we parked Nina started crying. By now, she had figured out that car drives downtown didn't mean shopping at Paseo Neuvo, but more scary people in scrubs. Her crying instantaneously cured me of any self-pity or sadness. I had a job, the most important job of my life...to bring brightness to my daughter's life. My sadness, grief, stress, pain, heartbreak did NOT matter!! All that mattered was her smile, her comfort, her kisses, her happiness, her peace! I asked God to help me pull my crap together and He answered! We walked into the cancer center and were greeted by the most delightful of smells...fresh popcorn and butter. Nina stopped crying!!
Inside the cancer center, we found our Cindy waiting for us, with her warm and gentle smile. Today was a special day! It was popcorn day at the cancer center. As soon as Nina got a whiff of the freshly popped perfection she stopped crying and started complaining that she wanted "Popcorn!" I love complaining. Three weeks ago I would have laughed at that statement! I hated complaining then. Now...her complaining was music to my ears!
Today we had a new anesthesiologist. I felt like such a jerk; before the poor man could even tell me his name I cut him off and explained that he should not even look at Nina, lest he wanted to freak her out and traumatize her any further. He gave me the "holy crap you're a scary mom" look for a split second then smiled the most loving of smiles. Miraculously he wasn't offended! He patted my shoulder and said, "Sounds good!" The treatment lasted about 8 minutes and then she was back in the room. Unfortunately, the recovery took nearly an hour.
She was so tired from multiple sleepless nights battling BMs that the added sedatives made it practically impossible to wake her up. When she did finally come to, she was an angry cobra!!! She was furious...furiously pissed off about us not having her popcorn ready. I tried to get her to take a sip of water per Cindy's instructions but she referred repeatedly. Then on the fifth press (more like begging) she reached for the cup of water. A spark of joy began to spread across my face. She was going to comply. HA!!! As if!!
She wasn't about to comply! She simply reached for the plastic cup in my hand and began to squeeze the living smoke out of it!!!! What a turd! She looked at me with such fury I actually didn't know what to do for a split second; I simply starred at her and the water rising to the rim of the dang plastic up. Finally, my senses returned and I shouted for Cindy's assistance. Before Cindy figured out what the Tasmanian devil was up to, I pryed her hand off the cup and prevented the water from spilling out. Cindy and I then looked at each other and started laughing! I knew the girl had nerve, but this....this was something different all together and we LOVED it! Cindy went and got her the darn popcorn, she shoved some in her precious mouth and then gladly accepted the water to wash it down with :) Harmony was restored to our universe!
Cindy and I learned a valuable lesson that day. Have what the girl wants ready! This makes recovery much more enjoyable for ALL of us! Nina has always been a girl that knows what she wants. This characteristic has never been truer than now! Instead of looking at this as a weakness we decided to take a strength-based approach with her treatments. Listen and be prepared with what the girl wants!
By the time we got home it was almost 1:30pm. We were exhausted but excited about two things. First, Uncle Bruno and Auntie Michelle were coming into town (my brother and sister-in law). We couldn't wait to see them! Second, Nina's room was done and we could move back in! She hadn't seen the final product yet and while were were engaging in WWIII over popcorn and water, Angel (the designer extraordinaire) and Kelly (my friend extraordinaire) were busily assembling Nina's room.
When we arrived back home, Nina's room was something out of a magazine. Angel had lived up to everything his name connotes. He was an angel indeed! For the last year, Nina had wanted to move into the bedroom downstairs. Prior to this week, Nina and Teddy had shared a bedroom upstairs in our condo. In the spring, after months of requesting her own room, we had decided that she'd get her own room on her 6th birthday. While we had been at Cedars I realized that it would probably be a good idea to have the kids get separate rooms immediately.
It had occurred to me that we could make them getting separate rooms a fun-filled family activity where they'd get to pick paint colors, furniture, etc. This way they'd transition into independent rooms prior to Nina's illness becoming more severe. I thought that this transition would be especially important for Teddy if his sister did end up going to Heaven. This way, the transition would happen when both of them were happy and he wouldn't get stuck in a room that had been his and his sisters. When I told my friends my idea, they kind of looked at me puzzled for a few seconds. It wasn't as if they disagreed. In fact, they all thought it was a great idea but....it was as if they questioned my ability to think of this during the worst tsunami of my life. My thinking this way didn't make me detached....I just work this way...always looking for the worst case scenario and tyring to prepare for it, minimize the damage if possible. I had two children and I needed to prepare! That was it!
Nina had been very clear for months about how she wanted her room: pink and purple stripes with rainbow polka-dots. Angel had made her vision a reality. Her room was a living candy shop! The Piece-De-Resistance was the ceiling. Our friend Kim had suggested that Angel paint a sky on the vaulted ceilings. Not only did Angel paint a sky, but he had made some of the clouds into animal figures (elephant, fish, butterflies). Her room was every little girl's dream come true. When I saw what he had done, my heart lept for joy!!! What a gift!!
As if Angel's brilliance wasn't enough, my friend Kelly had adorned the room with every perfect accessory!! I turned to my husband and explained that although I loved him dearly, I thought we might need to now embrace the sacred traditions of European royalty where the King and Queen had separate chambers :) The catch was that I wanted to room with Nina in her candy shop! Todd smiled and kissed me sweetly. I don't think he understood that I was serious!
Eileen and I proceeded to put all of Nina's clothes and toys into her new room. We hugged Angel and Kelly and texted Kim and Nathalie our endless gratitude. During this process, Teddy and I started chatting about his room. The night before, he and Todd had looked at some furniture on-line and looked at paint swatches. I asked Teddy what color he wanted to paint his room and he replied, "White!" I explained that he could choose any color, but he declined and explained that he preferred plain white. Hmmm! I then asked if he wanted a sky like in Nina's room. Without skipping a beat he informed me that a sky was for "girls!" Hmmm! As he was going up the stairs, he looked down at me and with the most beautiful face asked me if he could have any piece of furniture he wanted. The rest of this conversation went like this:
Rosy: Sure, as long as it's within reason.
Teddy: Can I have a night stand?
Rosy: Sure.
Teddy: Can I have a mini-fridge (totally serious)?
Rosy: (laughing) A mini-fridge. Why do you want a mini-fridge?
Teddy: (totally serious) Well...when my friends are over and we get a little thirsty or need a little snack, we could just go to the mini-fridge.
Rosy: (laughing even more) What kind of snacks are we talking about?
Teddy: (smiling a bit now) Well...like juice boxes or chocolate milk and baby carrots and apples.
Todd: (chiming in from our bedroom) The kid is brilliant! If I can have shelf then I think we're in business.
Rosy: (laughing even more) What would you have on your shelf Daddy?
Todd: (laughing and no response!)
Teddy: (smiling even more) So can I have one?
Rosy: I don't know buddy (thinking the kid was indeed brilliant!)
Uncle Bruno and Auntie Michelle arrived shortly after dinner. The kids were delighted to see them. Nina even smiled and reached for hugs. It felt so good to have my brother hug me!! Although he was 4 1/2 years younger he had long been bigger than me for years. He squeezed me tight and unlike previous times, didn't let go right away. He just hugged me!! My heart cried out; would Teddy and Nina be denied these moments as adults?? I didn't want to think about sad things. I just wanted to be happy!
Eileen and Michelle helped me organize Nina's clothes and toys. Then we got a special surprise. Kyle (our adoptive nephew) arrived. Teddy was ecstatic! Kyle had lived with us for almost two years. During that time, he and Teddy had many adventures. Upon his arrival, Teddy enthusiastically told him about all the new things he could do, his motorcycle, and all the ways he was brave. Poor Kyle didn't even have a chance to sit down before he and Teddy were off on a night hike :)
As the boys went on outdoor adventures, the girls finished putting together Nina's pastel paradise. Before we could proclaim perfection, Nina walked across the living room, climbed into her king-size bed, and tucked herself underneath her butterfly comforter. Michelle, Eileen and I stood in the doorway and smiled, the happiest of smiles, as we watched our sweet Nina enjoy the bliss of her new room! Everything she had ever wanted in her room was there! What a miracle to have so many blessed people in our lives who wanted to bring happiness to our little girl.
That night, after adventures were complete and cookies eaten, Nina, Eileen and I crawled into Nina's new bed. We cuddled up with our girl and starred up into a heavenly indoor sky! Life was good and we thanked God for it!
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| Nina's Princess Bedroom |
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