Wednesday, December 15, 2010

Day 88

Saturday November 13, 2010

I woke up feeling completely rested. Then...I raced to Target :) That is who I am. I rest then I race!

I went to Target because Nina had outgrown most of her clothes. She has put on so much weight. At the start of this she weighted 44 pounds. Now she weighs 60 pounds. She is so self-conscious! I see how she looks at pains me....I wish I could take it away!!

I found some sweet clothes and then raced back to Santa Barbara. My parents were coming into town for the weekend. Teddy's new bed (thank you, thank you Serenas!!!) had arrived on Wednesday. Teddy was beyond excited about its arrival. He practically came unglued from enthusiasm when I told him Vovo and Vava were coming to visit just to help assemble his bed. "They are sooo sweet!" he exclaimed as he bounced up and down on the couch!

When I arrived at home, I could tell that everyone needed a change of scenery. I suggested that we go to Kid's World Park but the kids both protested. I then suggested we go to the pier again since it was such a big hit. Nina complained that she was too tired and just wanted to stay home. Teddy wanted to go so he could visit the candy store again :) I had noticed that sometimes it took a little prodding to get her going. It wasn't that she didn't want to go out; it was that she didn't like people starring. We had all noticed how people starred at her and it bothered all of us!! Again, we understood that people weren't outright trying to be malicious but it hurt her and it hurt us! Bottom line, to strangers she just looked like an overweight little girl in a stroller and people judged what they thought was inappropriate without truly knowing the sadness sitting in that seat. Pain! Awful pain!!

With a bit of protesting from Nina and a few dirty looks from Teddy, Eileen and I loaded up the car and headed for Sterns Wharf. The day was absolute gorgeous. Perfect blue sky accompanied by a tiny cool breeze, all wrapped up in the amber beauty of the sun. I love this time of year in Santa Barbara. Eileen and I didn't say a word to each other; we watched and listened to the kids as they asked questions about the buoys in the water, the man making sand sculptures, the hippie tight-rope walkers, all of the colorful people that compose Santa Barbara. After picking a few treats at the candy shop, including popcorn, we found our way to the skate park. We hung out for a long while. I love how Teddy runs all over the grass, like a puppy, rolling up and down, just being a crazy boy. Nina loves this too and cracks up at her brother's antics. That is how their relationship can be defined. Teddy does goofy things and Nina laughs. Teddy is the music in Nina's life! She adores her big brother, always has!!!!

Around 4pm, Todd called me to say that my parents had arrived. We came home to a feast of tri-tip, rice, and all of the fixings!! My parents are wonderful and it felt great to have their company. The kids were delighted to see them and Nina loved eating their fresh bread and butter. Nina and Teddy love the bread my parents make. There is nothing like fresh Portuguese bread smothered in butter! Yummy!!

After dinner, we all sat around the living room. My parents and the kids played a game, opened presents, and laughed at Teddy's dancing. I looked over and saw sadness growing in Todd. I knew what he was thinking. I was thinking it too. Eileen was thinking it. Each adult in that room was thinking it! Every time we do something it is hard to not think about whether or not this will be the last time! Quietly, he eventually left and headed upstairs for the rest of the evening. With Eileen and my folks entertaining the kids, I went and checked on Todd. The pain of this nightmare is undeniably wounding us all. The challenge is how to survive in spite of wishing otherwise!

Sadly, all good times come to an end. At 8pm I helped Eileen gather all of her belongings and took her to airport. I hugged her tightly, not wanting to let go. My kindred spirit has helped my spirit stay strong!! I watched her walk into the terminal and that all together familiar lump in my throat reared its ugly head :(

Back home, I found Teddy curled on my dad's lap. He has always been an affectionate little boy. We have called him our love-bug from the beginning. Of course we have also called him our whiner (I still believe he has colic!) but more importantly he is our love-bug!! He is the one that has always loved being cuddled and held and would sleep glued to you all night if allowed to :) I have noticed that Teddy is becoming more affectionate. I hope this remains the case throughout this journey and throughout the remainder of his life!! Affection is so vital in life! I just pray he chooses a wife that is going to take full advantage of all that affection....would be such as shame for his cuddling to go to waste :)


  1. I hurt for you and your family. But I must tell you, you can still boost your daughter's self esteem during medical weight gain.

    My own daughter, who is now 25, started gaining weight at the age of 3. It's a hereditary thing, no matter how much exercise and good diet she got, she only lost so much. But I told her every day that her beauty wasnt just on the outside, it was on the inside too, and if people didnt like it - that was their problem. She is now a confident adult. Your family can be confident too. Who cares if other people make snide remarks! They dont have a seriously ill child! You are being a wonderful mother to your kids, so dont let the outside world ruin your good attitudes.

    Hugs to you and the family!

  2. Rosy... all I see when I see Nina is warmth. I can't explain it very well. But when I look at her I see her spirit,her heart, her smile, her beautiful skin, hair and eyes...all I see is a warm precious little girl. Actually, a warm precious girl that anyone would love to cuddle up to and "tickle". I could just smother her in hugs.

    Forever Prayers for all of you!
    Luv and Hugs!