One of the hardest things that we have had to adjust to is Nina's silence. You see, silent, had never been an adjective used to describe Nina...up until now. Prior to getting sick, Nina was the opposite of silent. She was loud, boisterous, talkative, engaging, inquisitive, articulate. The best way to describe Nina was verbose...just like her mama :) But now, verbosity had been replaced with silence.
Bottom line, it took a lot to get Nina to talk. Where we were used a constant stream of questions, comments, requests, we now had to use the very motivational procedures I used daily with kids with autism to get my precious girl to use her words. When our friends and family came to visit, aside from her blaring fatigue, her lack of speech was the first thing they would notice. Even Nina's friends were tuned into this change. I'd hear them say, "Nina doesn't want to talk to me?", "Nina doesn't like playing with me anymore." It broke our hearts. We longed to hear her voice and Sunday morning God nourished our spirit with a wonderful gift: Nina spoke, and spoke, and spoke.
Sunday morning started off like Saturday. All of us casually lounging in the living room, sipping coffee, eating pastries, just being together. After breakfast, Teddy and Kyle went outside for more adventures. Todd, Eileen, Bruno, Michelle and I hung out in the living room with Nina. Then out of the blue, Nina started whimpering. Immediately all of our minds went to the worst case scenario...something was terribly wrong. I asked her what was wrong, if something hurt. She answered with a confident, "No!" and proceeded to explain that she didn't want to get married!!! There was a collective Phew in the room followed by muffled laughs of delight. Over the next 30 minutes, Nina talked and talked. She asked questions, made comments, and plain ole chatted our ears off. None of us wanted to leave that living room and miss out on any precious word!
Not only did Nina not want to get married, she adamantly said she didn't want to have babies. When Uncle Bruno asked why, she whimpered "because it hurts!" She told us how worried she was about having babies and we all reassured her that she didn't have to have babies or get married! She could be a woman of independent means and conquer the world! It felt so good to talk to her this way. She insisted that she would never move out and we unanimously agreed! She even asked if it was going to be hard to learn to drive!! We were all amazed by the depth and range of her questions. It was as if she had been contemplating life's biggest milestones and wanted to get reassurance from her family that everything would be okay! What a gift!!!
Teddy and our nieces and nephews have all asked us these questions or made these comments in years past. However, we foolishly didn't relish in their sweetness and blessing at the time. Now, with Nina, each comment and question is bliss! Why is that adults are always in a hurry??? Our kids love to talk to us but we often fail to listen. How sad that we don't recognize how priceless these moments are! Once they are gone, they are gone forever more. I regret not videotaping more of our kids! I have a million photographs but so few videos. In fact, 1 week before Nina's deterioration, Todd, the kids, and I watched some old videos I had taken of them when Teddy was 5 and Nina was almost 3. The four of us sat in the living room laughing at how cute they were. It is eerie now to look back and see how blind we were! We had no idea of what was headed our way!
After our little chat, Nina proclaimed that she wanted to go to the beach. Teddy and Kyle had already left for Sands to see the surfers. Bruno and Michelle decided to go on a hike to the bluffs and take a picture on the spot where they had gotten engaged. Eileen volunteered to go to the beach with Todd so I decided to take a nap. In our quiet condo, I thanked God for the strength he had given my husband and son. In the beginning I had been more terrified about how this would impact Todd and Teddy. I ached for them as intensely as I ached for Nina's life. But our God is an awesome God and His hand has been on our hearts each and every step. What I feared for my husband and son, God soothed and anchored. What I longed for in my daughter, God gave us moments of bliss. I crawled onto Nina's bed and closed my eyes and I slept!!
The rest of our late morning and early afternoon was uneventful; but "uneventful" had become "magical" for us! So often we spend fortunes on fancy vacations, parties, and events. For some reason we expect that when tragedy strikes it is these moments in our lives that would stand out. However, for us, these moments are faded memories. The memories that standout are the "uneventful" ones, cuddling in bed, going for a hike to see butterflies, watching Nacho Libre for the hundredth time, taking bubble baths, and wrestle-fighting with daddy. Don't get me wrong, fancy vacations are great and we cherish each special trip we have taken as a family. But things have changed!
Initially after we first got the diagnosis, I had thought that I would want to take a ton of special vacations with Nina and our family. But as the days passed, it became very clear that all that Nina wanted to do was be home. Once again, my 5 year-old daughter was teaching me more through her innocence and sincerity than most scholars could ever accomplish. I began to recognize that what mattered most to Nina, and consequently to me, was to be together doing the things our family loved. Fancy or special was not a prerequisite! Together and comfortable was!
Shortly after dinner, Dan (aka Dr. Brennan- it was still weird to call him by his first name) came by with his son Josh. Teddy and Josh immediately hit it off and quickly disappeared upstairs. As we were all sitting around in the living room (again!) our friend Katie arrived with a very special surprise for Nina.....a kitten!! Just like wanting her own room, Nina had also been asking for a kitten since last Christmas. I love cats so I totally understood why she wanted one. Todd....let's just say he wasn't a cat kind of guy, so he didn't quiet understand her desire.
Anyhow, as soon as Katie arrived with the kitten, Nina's affect and enthusiasm exploded!!! To say she was delighted is not doing it justice! Nina was ecstatic, joyous, on cloud nine, happier than happier. Her language mirrored her enthusiasm! She kept saying, "He's the most perfect cat ever!", "I love him!", "He's so cute!". She immediately picked him up and kissed him over and over again. Every adult in that room, including her daddy, was moved! She named the cat, "Max!" and told him over and over how much she loved him.
Now, as Nina's enthusiasm climbed, Todd's caution and flat-out grumpiness increased. With perfect timing, Nina wrapped herself around her daddy's waist and thanked him for the kitty. Todd glared at me the Ohh you're a punk and I'm gonna getcha husbandly glare! The thing about that glare is that it's never worked! Todd loves me and his children way too much to ever really mean anything with his glares :)
Meaning or not, glare he did. Kyle and my brother especially got a kick out of his tantrum. However, the best part was that about an hour after the kitty arrived and the fanfare subsided, I found Todd sitting on the couch with none other than Max the kitty on his belly. Todd was petting and Max was purring!!! Life is full of surprises! The majority of our recent surprises had been really bad, cataclysmic ones! Max the kitty was a fabulous and happy surprise that made our honey-girl smile like her old self. None of us doubted that Todd would grow to love Max; we were just surprised that it only took one hour! Thank God for good surprises, hairballs and all!
|Introducing Todd the cat lover :)|
|Nina & Max are fast friends!|