Saturday, January 1, 2011

Day 114

Thursday December 9, 2010

Again, Nina had insomnia...this time 2-4am. At least it's predictable:)

What wasn't predictable was how happy Teddy was when he woke up! I was convinced he was going to wake up a beast because he had gone to bed so late! But when I woke him up, peanut butter toast on hand, he sat straight up (craziest bed head ever!!! I love it!!!) and said in the cheeriest of voices, "Good morning Mama!" I totally laughed because I was caught so off guard. I had been bracing myself for WWIII as I walked up the stairs! Instead of an armada, I met a sweet, peaceful boy! My day was starting off great! Thank God!!

As we drove to school, Teddy and I made plans for the Dawsons upcoming visit. Teddy was elated about his best buddy Niels coming to visit. I knew he'd have specific things he'd want to do. Consequently,  I wanted advance notice so we could prepare. Mainly, he wanted to go on adventures with Niels and asked if he and Niels could go on a hike to the "fort" (this abandoned club house in a field near our home) by themselves. Lately, Teddy has wanted to do more things on his own and Yvonne tells me that Niels is going through the same thing. It's totally developmentally appropriate, but for us "moms" it is still sad :( We are no longer the center of the universe for our boys, we are no longer the most beautiful girls they know, and we are no longer who the want to be with the most. When you're a child, these "clingy" parental moments are annoying. But as an adult and parent yourself, you lament having been annoyed at your own parent because now you understand that longing and tinge of sadness.

Once out of the car, Teddy took my hand. All of last year he refused to hold my hand or hug me when I dropped him off. Since November, he has been increasingly affectionate with me in public. He has held my hand almost every morning and will hug me for sure. I love it! I am so grateful for these moments! This feeling of gratitude then overcame me. I started thinking about how I've raced through most of my adult life, really without being genuinely thankful for the moments I have with everyone around me. I thought about Nina and how I am grateful for each additional minute we've been given with her. Each smile, laugh, stink eye, smack, sass, comment, question has been a blessing. I just don't understand why I get so caught up in the stupid things that I can't see that beauty in every interaction with my children, even when they are tantrumming for flat out being butt heads!

After dropping off Teddy, Holly and I did our usual morning check in. I told her what I had been thinking about, how grateful I was for Nina and how if I had to do it all over again, I would! I would still marry Todd and have Teddy and Nina because a world without Teddy and Nina would not be complete. Most importantly, I would still have Nina even knowing that I'd go through this inhumane, torturous pain. I would sign up for this pain every single day just for the opportunity to hug her. Holly hugged me tightly, tears welling in her beautiful big blue eyes, and agreed with me. She said that in spite of all of the pain, we are lucky, we are blessed for having had Nina. Nina is already our miracle!!! That much everyone can agree on. We just need to see each and every one of our children in that light!!! Nina is teaching me that on a daily basis!

When I returned home, Nina declared we needed "new" food. This has become her catch phrase as of late. Whenever she is craving something to eat but doesn't really know what, she commands that we form a search party and go gallivanting through exotic countries in search of the perfect morsel. And so....off we went to Vons (so much for exotic lands....although Vons does important foods from exotic lands....like Texas....good ole El Paso Salsa :).....okay just joking....I apologize to anyone from Texas and the people from El Paso Salsa company! I'm overloaded on caffeine!). Anyway, we went to Vons and what tidbit did my Queen pick.....cereal! She was delighted! That is all that matters to me!



I do have to confess that a large bowl of sweet cereal and cold milk at noon is a lovely lunch! Nina, per usual, nailed it! She was very proud of herself until she spilled some milk on her clothes and threw a fit because I had put too much cereal in bowl :) Go figure! Fortunately, she recovered quickly and I changed her into a comfy Tinkerbell nightgown. She looked darling. I took advantage of her regained cheerful mood and took a few more photos of her with "Teddy gifts". My favorite one so far is the one below. We found this piece of artwork at a local store called Imagine (which is amazing...my mother-in-law is addicted and spends half of her visit with us inside :)....just joking....it's more like a third!). I love everything about this photo: how happy Nina is talking about her brother, that she is holding a Wii remote controller, that she is wearing a Tinkerbell nightgown and that the art work says Every day I love you! That sentiment is sooo true! Nina has loved her brother every day since the moment she was born!



As I took the photos and then restarted the Wii Play video game for Nina, I found myself getting really sad. I quietly redirected myself by tidying the living room. I have become quite the expert at redirecting myself when necessary.

Before long, it was time to pick up Teddy. I arrived "on-time", which to Teddy means 1-3 minutes before the bell rings, so technically it means that I'm there "early". To my delight, he greeted me with a tremendous smile. He then proceeded to ask if he could walk home. He's been asking me to do this for weeks now. I compromised and said he could walk half way home and that I'd follow with the car. I wasn't sure if he'd go for it but he did. He was sooo proud of himself! I was proud of him too!! He is trying to become more independent and this is good for him and his anxiety!




Around 3:45pm, Crystal came over to hang out with the kids while I joined Todd at a bereavement counseling session at the Santa Barbara Hospice Center. I was so thankful that Todd had made the appointment. Bottom line, like I have told Todd and everyone else in our lives, I don't pretend to think that the way I am coping is the right way for everyone else. All I know is that every single adult that is involved in this journey needs to be preparing not just for Nina's healing but the potential that she may go to Heaven instead. As adults, we need to seek guidance, support, and make sure that we are coping in a "healthy" manner. It is awful.... but it is what it is!

In summary, the counseling session went great! We discussed our fears about Teddy and how to help him cope. Todd's biggest concern is that Teddy's heart will harden towards God. I completely understand why he is concerned. Teddy has been praying for Nina the entire time and if she is not healed he may lose all faith in God. I explained that although I have a similar fear, I think what will impact Teddy the most in this area will be how we help him re-frame the situation. In other, if we have to lose Nina then I believe the focus should be on how Nina was our miracle, that knowing her and having had her in our lives was the greatest of blessings! For me, this is truth not just something I say to make myself feel better. It is an excruciatingly painful truth but it is the truth nonetheless!! The counselor thought we were on track with Teddy and suggested that we continue doing what we've been doing. Furthermore, he added that reframing was going to be essential for Teddy. Bottom line....reframing is going to be essential for EVERYONE!!!

We returned home to find tutoring up and going. Crystal joined us for dinner and it was nice to spend a few minutes catching up with her, having an adult conversation that did not pertain to treatment, prognosis, hope, and/or sadness. That night, after I tucked Teddy into bed, I went and lay next to Nina who was sleeping sweetly, cuddled up next to her Dada. I watched her breath peacefully. Then it hit me like lightening!!!!! I have been so consumed by my own grief and the grief of those around me that I failed to recognize that who looses out the most here is Nina!!! If she is not healed, it is she who looses out on life, not us!!! I could hardly breathe!! I gently crawled out of bed and sat outside for a few minutes, trying to regain composure. All this time, I had been so wrapped up by my own pain and my fear that I failed to see the blinding truth! I am not the one who is sick, it is Nina! I am not the one who is dying, it is Nina!!! I am not the one whose life may be tragically cut short, it is Nina!! I am not the one who will miss out on living, it is Nina!!!! I was so overcome that I didn't even have the energy to cry or move! I just sat. Frozen. Heartbroken. Aware for the first time! Sure, if there isn't healing, Nina gets to go to Heaven and spend eternity with God but she will miss out on all the blessings (and sadness) of this life!!! I sat quietly. Frozen. Heartbroken.

1 comment:

  1. Dearest Rosy, I am so sorry for everything that is racing through your thoughts all of the time. (Though totally understandable) I still wish there was something that could be done to help the pain that all of you are feeling.

    On another note... I have to tell you that Nina's journey has me looking at every moment with my kids sooooo differently and I am learning to embrace every moment as one never knows what each day will bring us.

    Something else Nina has caused...is that ever since I read the first blog about the "New Food", it is embedded in my brain and now whenever I think that I have to go to Vons, the first thing that comes to mind is... "I need to go to Vons, we need New Food" and when this thought occurs I laugh inside and smile on the outside! It cracks me up. I have not yet out wordly said it...like to my husband or kids..that is probably only a matter of time! But none the less it pops into my head! I will always and forever be saying that to myself now! ~:)

    As many precious and important things Nina is teaching me, she is also teaching me "funny" things that breaks up my mundane thinking into inner laughter!

    Thank you Nina! And, thank you Rosy for posting and for helping to spread Nina's teachings to all of us that she has touched!

    Love, Prayers and Laughter always!
    ~Amy

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