Wednesday, September 8, 2010

Day 11

Saturday, August 28, 2010

Today was a great day! Unlike so many other days during the past 2 weeks, I got to sleep. It is amazing how much the human body can endure. For the past 10 days, I had slept on average 3 hours per night. Today, with a multitude of adults to help and support Todd and the kids, Eileen and I got to sleep in! Funny thing about getting more sleep is that you actually feel more fatigued afterwards. Why is that?

We spent the day leisurely playing outside, tidying up, laughing, eating, eating some more, and just being together. Nina was in good spirits, especially in comparison to the beginning of the week when we had been at the hospital. Unlike then, she was now telling us exactly what she wanted and when she wanted it. There were no difficulties with intelligibility or articulation. Even her ataxia had improved; we didn't have to hold her from both armpits in order for her to walk. She found this particularly liberating!

Uncle Bruno, Auntie Michelle, and Kyle enjoyed watching Nina ride her Barbie scooter. They were amazed at her eye-hand coordination and her ability to maneuver through winding sidewalks, driving forward when possible and going in reverse when necessary. Of course, Teddy would not be out done:) He flew through the cul-de-sac on his motorcycle. We laughed about how tentatively he had first ridden the bike, however, within an hour of getting on it, he had turned into Evil Knievel! He showed off for Uncle Bruno and Kyle. Daddy tried to show off too; he actually got on the motorcycle and rode it about 100 feet. Laughter erupted throughout the neighborhood at the vision of Todd tooting along on a miniature motorcycle; all he needed was a big red clown nose :) As always, Todd knew exactly what to do to to make everyone laugh and the kids loved it!!

In the afternoon, the Marbans came for a visit. It had seemed like an eternity since I had last seen them in LA. My perspective on time was completely decimated. I never knew what day it was. My day was organized around doctor's appointments, radiation appointments, and medication. Todd was particularly eager to meet the Marbans. For almost two weeks he had heard nothing but me speak about how generous and loving the Marbans had been with me and Nina. They were like relatives living far, far away that you tell your spouse wonderful stories about. Every one is eager to finally meet them!

Todd's own generosity came shining through as he insisted on preparing his famous carne asada tacos with all of our favorite homemade salsas and guacamole. Initially, I tried to convince him to order carry-out but within seconds I recognized that he needed to do this. Bottom line was that he was the Papa Bear of our family and for two horrific days the Marbans had taken care of his girls. Making dinner was a way to say thank you and I loved Todd for it!

I also had wanted the Marbans to meet the other half of the Fredeens: Todd and Teddy. Although I had known the Marbans for almost 6 months they had not met Todd and the kids. How I wish they could have known Nina before she got sick. For months I had told them stories about our children. How Teddy had worked vigorously to develop coping skills and conquer elements of his anxiety. How he was an observer, a collector, and a thinker. One of our favorite Teddy sayings when he was younger was, "I thunk, and thunk, and thunk about it." He often gave us this response when we asked him how he had come up with something. With Nina, I had told them endless stories about her boldness, her confidence, her giving spirit, and her adventurous heart. Sadly, they had never met that Nina. I desperately needed them to know Teddy for who he was. Interestingly, this hadn't dawned on me until they arrived.

We spent the afternoon and early evening together. No formalities. It was as if we had known each other all of our lives. Linda and Eduardo were encouraged with Nina's progress in such a short time. We ate, we laughed, we reminisced,  and we watched Teddy and Cristina play outside. I felt sad that Nina could not join Teddy and Cristina. If she had been healthy, the two girls would have been best friends. They shared so many interests. Unfortunately, she wasn't healthy...she lay on the couch, tired and drained, but our honey-girl nonetheless.

By the time 7:30 rolled around Nina was done. In so many aspects our 5 year old Nina was back or was coming back. However, behaviorally she was stunted around 18 months. Her impulse control and ability to regulate were practically nonexistent. I found this overwhelming. I had to frequently remind myself that her behavior wasn't her fault or out of just was! Being a controlling person this was VERY hard for me! Nina had always been my easy child, the one with easy regulation and perfect coping skills. The majority of my efforts in this department had been dedicated to Teddy. But now...their roles were reversed. It hurt!

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