Tuesday, September 21, 2010

Day 28

Waiting for the anesthesiologist with the Pebbles hairdo!

Tuesday September 14, 2010

Our honey-girl is so brave!! Her brother is completely right. She has adapted so well to this nightmare. For the second day in a row she didn't cry in the morning when we arrived at the Cancer Center. In fact, she actually asked to go to the doctor's appointment first thing this morning. Of course, she's doing this all on the calculation that the quicker she gets the doctor's appointment over with the quicker she'll have access to food. I think the girl should get an honorary Ph.D.!

It never ceases to amaze me how resilient we humans can be. Less than a month ago I was consumed by the same routine I'd had for almost 8 years. Then, disaster struck and we have now become a family about medication schedules, radiation treatments, clinical trial considerations, unpronounceable medical terminology, insurance calls, and most important of all, gratitude. On August 20th this seemed unmanageable. Today, it is our life.

The changes in our day to day life have also made me think a lot about the families I have had the privilege of working with. I have always considered myself an empathetic person, but Nina's illness has completely changed me professionally speaking as well. The reason I went into the field I went into was because I genuinely love helping others. For almost 15 years I have had the pleasure of helping individuals with autism and their families. These families long ago taught me what resilience, gratitude, perseverance, and hope was in the big sense of things. Little did I know they were also preparing me for how to apply it with my own child. There have been countless of times during this month long journey where I have been in a situation that  reminded me of a specific family and how we had collaboratively worked through an obstacle or responded to a judgemental stare or used a specific motivational trick (e.g., Hannah Montana phrases, silly songs) to pull their child out of a slump. Now I use all of these with Nina.

The behavioral interventions I have used professionally have been my parenting style all along but I had never relied on so many specific things I did with families until now. I am humbled! Here I was thinking I was teaching them something, but God in His infinite wisdom was shaping me, building my strength and heart through these families! You know who you are...THANK YOU!!!

After radiation, Nina proclaimed she wanted to return to Panda Express but this time she wanted to eat at the restaurant. I was down for Panda! So off we went. Nina ate her usual  kid's meal of orange chicken and half noodles and half white rice. I got a side of broccoli beef because she loves the broccoli in it! If I had allowed her to, she would have eaten the entire kid's meal plus the side of broccoli beef. But I didn't. The hospice nurses had explained that we needed to closely monitor her food intake so that she wouldn't put on more weight and subsequent complications from side-effects. I had already noticed a difference in her breathing at night; it was more labored.  The last thing I wanted to do was create more complications! Nina's body was already stressed to the max. I did not want to press my luck with anything else. All we wanted to was to keep Nina as happy as possible for as long as possible, all the while reaching for our miracle from heaven.

After lunch at Panda today, Nina decided it was time to go home. No shopping today. She wanted to go home and watch Scooby Doo!

Since Nina's birth, I have come to admire many things about my daughter. Perhaps the trait I most admire is her ability to know exactly what she wants and to not have any fear about letting it be known. I do not operate that way at all!! Perhaps that is why I so admire it in Nina! It's not like this is a personality trait of Todd's either. This is all Nina Fredeen, uniquely her! Don't get me wrong, I know exactly what I want (95% of the time) but I normally am bound by fear of disappointing others, that it's not the best thing to do according to convention, or fear of failing that I don't even try. Watching Nina deal with her own illness is teaching me so much about how I should live! She does not hesitate to seize the day.

I want to be like Nina!!! I think we should all be like Nina!!! 
We should all do the following to be like Nina: 

1.) Love God with all our hearts!

2.) Love our family and friends with all our hearts! 

3.) Laugh whenever possible and as much as possible! 

4.) Have happy, helpful hearts in whatever we are doing!
5.) Seize the day!

I have a Ph.D., worked with some of the world's most brilliant minds, traveled across the globe, read scholarly material...yet it is my 5 year old daughter who is teaching me how to live better with each beat of her precious heart, with each melody of her contagious laugh and smile, with each perfect kiss from her gorgeous lips, and with each hilarious, angry, insightful, touching and brilliant word out of her tiny mouth. Nina Dolores Fredeen is already our miracle and we praise God for every moment we have with her!!!!!

Happy treatment, happy breakfast, happy belly!

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