I Feel Invigorated!!

So... my start to 2011 was, to quote Dr. Slomiany, "A mixed bag!"

After the kids went to bed, I felt great, thankful, joyful. Despite the fact that Nina had developed a headache (remediated quickly with Motrin), she had a lovely evening and went to bed in a good mood. She spent about 15 minutes ordering me to "tickle" here and "scratch" there. I tickled and scratched every inch of that bodacious body, while telling her all the things I love and admire about her. At one point, she was wiggling around a lot so I asked if she wanted me to stop talking (thinking my litany of all the ways I love her was bothering her). Through a yawn she said, "No, you can keep talking. Can you scratch right here.", pointing to a tiny spot between her two shoulder blades. Apparently, all the wiggling was because she didn't know how to reach her "itchy" spot :) Without much more ado, Nina fell asleep. Sweet honey-girl!

I went and checked on the boys and they were both passed out. It was 2am after all. I'd finally trapped them into showering earlier. What is it about little boys and bathing??? They seem to avoid it like the plague. I looked around and smiled, they had picked up their dirty clothes and put them away in the hamper. Good boys!!! I shut the curtains tightly so they could sleep in and took the cat downstairs so he wouldn't disturb them. Everyone was asleep, the house was peaceful.

I made myself a hot cup of coffee and proceeded to write my New Years blog entry. I wrote this entry with great enthusiasm and a sense of contentment. To put it simply, I was filled with immense gratitude for having my children safely in bed and for all the time we'd had with Nina. Every moment has been precious. Fairly quickly, I finished writing and adding the photos to the entry. Then I went to my YouTube site to copy over Nina's New Year message. As I looked through my videos I stumbled on one entitled "Cancer Prayers for Nina". I didn't recognize who had developed it but I clicked on it and then....my world came crashing.

The video is a compilation of photos of Nina and our family, beautifully put together with nice information about DIPG. However, watching this video (put together by a stranger), full of beautiful pictures of our honey-girl, seeing the progression of an "apparent" healthy, vivacious little girl to a child fighting for her life obliterated me from within!!!!!!!!!!!! I instantly started sobbing....not crying....sobbing, loud enough to where I had to cover my mouth with my scarf (yes it was cold and I had a scarf around my neck!). The video is only a few minutes long and I am thankful to whoever put it together but I must have sobbed for at least 20 minutes!!! I haven't cried that intensely and for that long for months!! I just sobbed and sobbed. I couldn't sleep so I edited a bunch of my posts. By the time I went to bed it was 5am, feeling decimated and outright heartbroken.

It shouldn't be a surprise that I didn't sleep well. Everyone slept in super late. By the time I rolled out of bed it was 11am. I went downstairs to the kitchen and what did I find....a smudged streak of shit on the floor, right next to the cat door!!! Perfect!! My new year was starting with SHIT!!! Great!!! Apparently Max (the cat) didn't quite make it to his kitty litter box. Maybe he got into the beer?!?! I called out to Max (wanting to smack him but restraining myself). He came to me from the living room and I started to laugh hysterically! He had Nina's ZuZu pet stuck to his tail!! He must have played with it an gotten the wheels tangled on his fur!! This is why the ZuZu pet comes with a warning to keep away from hair. Too bad Max can't read and follow directions. So after cleaning the shit off the ground and disinfecting the area, I proceeded to cut the ZuZu pet off of Max's tail. Now Max has a huge piece of black fur missing from his tail! Serves him right!!

I took a deep breath and decided to forget about the shit and just proceed with my original plan, make a huge breakfast and then take the kids to Campus Point for a hike. The kids gobbled up their pancakes with strawberries and whipped cream and bacon. Everyone was excited to go on a New Year's hike.

We went to Campus Point. It was slightly windy, but not terrible. Nothing was going to stop Teddy and Silas! They are like two energetic puppies. They just go and go and go!! The boys and Todd climbed up the bank to hike the trails while Nina and I stayed below searching for rocks and shells. After Todd and the boys were out of sight, Nina turned to me and said, "I want to go too Mama!" There is NO mountain too high or valley too low for this girl!!! I didn't hesitate a second! If she wanted to move that mountain then I'd be right there with her!!!

So....first I climbed up the steep hill with the stroller and left it at the top. Then I went back down for Nina. I asked if she wanted me to carry her and she said no. She wanted to walk it herself!!! Amazing will!!! I braced her from behind, holding her steady by bracing her under her armpits. Slowly but surely she climbed up that incline!! At the top, she looked behind her and said, "We did it!" Sweetness!!! She was so happy to have conquered that steep hill!!! I was so proud myself!!! The boys were shocked to see us! Ha!! Nina and I are the world's two most willful girls :)

Nina had an extraordinary time on the hike. The boys raced through the bluffs, crawling around like wild animals, trying to scare us. Periodically, we'd see Teddy's wild hair poking up through the brush....so funny...he looked like a baby porcupine! Once we climbed back down to the beach, we spent quite some time searching for shells and rocks. Teddy was so incredibly sweet to Nina; kept running up to her with beautiful rocks and shells he'd found. At one point, he spontaneously kissed her on the cheek. Nina beamed!!! I complimented him and he grinned from ear to ear, bursting with pride.

Searching for shells and rocks!

Found one!

"Here Nina, this one is pretty."

By the time we got back to the car, I felt invigorated! My first day of 2011 had started off rocky, incredibly, terribly rocky. But like I had posted earlier...happiness is something we choose to create. I just need to keep facing my mountains like Nina does, with sheer, unrelenting will and gumption!!!

Happy New Year: Happiness Is Something We Create

Tonight as I quickly ran to the store to pick up a Duraflame log and some matches, I heard a line from a country song that struck me like a bolt of lightening. Instantly I knew what my New Year's blog entry would be!

The line was "Happiness is something we create." This is so very true! God gives us this one life, full of opportunities. It's up to us to make it a good and meaningful one!!! Even in the middle of my own personal tsunami, I CHOOSE to create happiness, even if it only lasts a few seconds!!! Nina has blessed me with this realization and I hope and pray that she blesses everyone reading these words with the same gift!!! Happy 2011!!! May it be filled with love, blessings, gratitude, health, and may we all choose to create happiness in our own lives!!!

Rib dinner with Teddy, Silas, and Becchio Boys! Yum!!

After Dinner Siesta!

Smores!!!!

Newfound Energy!!! Thank You Smores!

Happy 2011 From Teddy & Silas!

A Happy New Year Message from Nina!

Day 115

Friday December 10, 2010

The kids woke up fervently excited....the Dawsons were coming....the Dawsons were coming!!! For them, the day couldn't pass by quickly enough....the Dawsons were coming and they could hardly contain their exubberance!

While Teddy was at school, my neighbor Sharon watched Nina for a couple of hours so that I could have lunch with my friend Pat. Pat and her husband had lost their daughter unexpectedly when she was 18 months old during heart surgery. At the time, their oldest was 6 years old. Pat and I cried over our lunches at Marmalade Cafe. We each shared the myriad of emotions that had and continue to occupy our minds and hearts. Pat listened and sweetly offered her experience and what they would do differently. No one knows how to go through these awful journeys. Bottom line, there is no guidebook! Of all the things that Pat said, the thing that struck me the most was her confessing that she had forgotten things about Elizabeth. She said that if Elizabeth had lived, she would be 23 years old today and then she explained that as hard as she tried, time wears on memories and things are forgotten. Tears just cascaded down my face. I don't want to forget a single thing about Nina!! After I hugged Pat goodbye, I sat in my car for a good long while....sobbing!!! What we are going through is awful, terrible, hideous....but forgetting my child....nothing could be worse. I DON'T want to forget a single thing! That is why I am obsessively documenting everything, taking a million photos and videos. I don't want to forget her smile, her laughter, her silliness, her sass, her tantrums, her tenacity!!! I don't want to forget her smell!!! Most of all, I don't want to forget her smell! I felt like Mt. Everest was on my chest!!! I couldn't breathe!!! I just sobbed. Then my alarm rang. It was time to pick up Teddy!! I wiped my tears and drove. I have no other option but to always wipe my tears!!!!

I picked up Teddy and the kids resumed their excitement about the Dawsons coming. The Dawsons were coming. The Dawsons were coming! In the meantime, Teddy gave Nina a gift he had bought her at school, a penguin drawing. He was so proud of himself. He had used 44 Checchio Bucks (money he earns in the classroom for good behavior) to purchase the prized drawing for his precious sister. He beamed! I was so proud of him. His love for her shined! What an incredible boy!



Promptly at 6:00pm, the Dawsons arrived! Happiness filled our home instantaneously!! Teddy took Niels upstairs to see his new room. Sander chatted Nina's ear off. Robert and Todd did their man thing...hello, shake hands, grab a beer. Yvonne and I hugged!! We hugged each other tightly, as if we hadn't seen each other in years. In many respects, it felt like light years since I had last seen Yvonne!!

With the kids playing and the father's sipping their beers, Yvonne and I went to pick up dinner at our mutually favorite Thai Restaurant, Your Place Thai Food. While we waited for our order, I confided in Yvonne the realization that I had experienced the previous night. I explained how we are so sad ourselves that we've lost sight that it is Nina who will get the shortest end of the stick! If she is not healed, then she will never excel in school, she will never form friendships that will stand the test of time, she will never go to 6th grade camp, she will never be an "ego-centric" junior higher, she will never PMS and have to learn to keep herself in check, she will never fall in love, she will never go to college, she will never get married, and she will never have her own children because all of these opportunities will be stolen from her!!! Yvonne concurred that this was the greatest tragedy of all, not our own pain of potentially having to live without her, but that she will not get to experience life herself!!! We cried. We held hands and we cried!!!! Then we returned home to a house full of happy children so we laughed, we smiled, and we were thankful!!

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.

Longing

December 31, 2010

I woke up this morning after dreaming about my niece Adelae. I don't remember much about the dream other than that we were shopping and couldn't find the "perfect" pair of boots. There was nothing particularly noteworthy about this dream. In fact, it was pretty much a summary of what we did yesterday. What jolted me about this dream was not the content but the emotions behind it. Longing!!! Longing!!! Longing!!!

Yesterday early afternoon, Nina, Addie, and I went shopping. Addie needed some new frames for her prescription glasses. Afterwards we went hunting for some boots for Adelae. Nina proclaimed that she also wanted shoes...she wanted "pretty ones"! The girl has an obsession with shoes and has more pairs than I do! I suppose I have happily fed this obsession over the years :) There is nothing quite like little girl's shoes. They are irresistible!!

Well, it turned out that we didn't quite find what we were looking for but we found some fun clothes for Adelae and Nina chose a new rainbow hair brush at Claire's. As I watched Adelae search the racks of clothing for something "cute" and try on boots, my heart started sinking and it began to pound to a sad beat of longing. I felt that altogether lump rise and seat itself in the hollow of my throat.

I found myself longing for all the things that I may lose if Nina has to go to Heaven. I longed for silly shopping with her, for her learning to read and write, for hearing all the stories she has to tell (she has a fabulous imagination). I found myself longing to see her fall in love for the first time and help her recuperate after her first heart-break. Would I get the opportunity to listen to depressing, post-break up Kelly Clarkson and Celine Dion music, pour heartache over a tub of ice-cream and redirect her emotions with a fabulous shopping trip? I found myself longing to see her flourish in her academics, see her find her passion in life, and get her first job. Most of all, I found myself longing to seeing Nina grow into a beautiful young woman who loves God and blesses all around her!

I studied Adelae closely, noticing her new pre-teen mannerisms. She is changing, growing intellectually and emotionally. Earlier in the day while she read her novel for an upcoming book report, Adeale came and asked me to explain a couple of paragraphs. I loved discussing the author's implications with Adelae and hearing her thought processes. Now, I found myself lamenting the fact that I may not have this opportunity with Nina!! Longing!!!! Longing!!!! Longing!!!!

So many times over the years, myself and others in our families have commented on the "nightmare" of adolescence and how we wished we could send our kids away during that period of development. Ohhh how I take those words back!! I would give anything to "deal" with Nina's PMS and "annoying" adolescent attitude. Longing!!!! Longing!!!! Longing!!!!

Day 113

Wednesday December 8, 2010

Nina had another tough night. She was up from 3-5am. It wasn't as bad as the previous nights, especially since she had fallen asleep at 7pm. Nonetheless, what concerned me the most was not the "being up" in the middle of the night but that her sleep issues were symptomatic of troubles with the tumor. Troubles with the tumor??!?! What a stupid, asinine thing to say. As if "trouble" is not synonymous with the word tumor!! The kinds of things our minds do and mouths say! Bottom line, my biggest concern was that these increased problems with sleep mirrored the pattern of symptoms in August. I had this looming feeling growing. I decided to shove it back into the basement for the time being.

The problem (there are many!!! obviously!!) of living with chronic pain like we are, is that sometimes you forget that others around you also have sorrows, burdens, struggles. Today I was reminded of that and my heart broke for my precious friend. The pain my friend echoed to me reminded me of how horrible it feels to be "helpless"!! Sometimes, there is absolutely nothing we can do or say to bring comfort to a loved one! Absolutely nothing!! That is a terrible, excruciating feeling!!! Before Nina's illness, I would have been frantically tyring to figure out how to make the "unfixable" fixable for bring "comfort" to a situation where there is no possible comfort. Now, because of what I am personally going through with Nina I realize that sometimes there is absolutely nothing we can do....other than be present and available. Just "being there" is comforting!! It may not feel like that to the person trying to comfort the hurting friend, but because of what I am living, I can honestly say that it is! It is all that can be done and it IS enough!

I spent the late afternoon with the Marbans. It was fun playing with Cristina, although I kept calling her Nina. Aghhh! I have done that since August!! Never had prior to, but now I do it all the time! Sweetie Cristina just smiles at me when I do :) Just like I had earlier struggled with comforting my friend, I know all of our family members and friends struggle with comforting us. With the Marbans, just getting their hugs is comforting!

Cristina and I hiding in the bath tub during a fun game of Hide-N-Seek!

By the time I got home, Nina was fast asleep but Teddy was wide awake :( He knew I wasn't happy!! I warned him about getting up in a grouchy mood the next day and then crawled up into his bed and tickled his back until he fell asleep. Sometimes....a good tickling from mama (versus a reprimand) is the most comforting thing in the world! Teddy reminded me of that tonight!

Day 112

Tuesday December 7, 2010

I think that I should help develop roller coaster rides. I'm serious! I need to be put into contact with the engineers that design roller coaster rides for Disney, Great America, Magic Mountain, etc. I have (without choice...totally forced!!) become an expert in roller coaster rides. Sometimes my days are one continuous mind-breaking roller coaster, the kind where you think you might not survive and barely do!!! I just feel that my new-found skills should be put to use!

Today's roller coaster was particularly treacherous because the peeks and valleys were so steep and happened so radically quickly. One second I was up, the next I was down!!

First, Nina and I went Christmas shopping. Yahoo!!! She picked a set of Sponge Bob mugs and cocoa for an early Christmas gift for Teddy. She was so thankful he had given her the dolphin pillow pet that she asked me immediately after breakfast if she could also buy him  a present :) Sweetness!!!

When I picked up Teddy from school the first thing he said when he climbed into the car was, "Mom...I have something that is going to astound you!" He then pulled out 3 Minute Math quizzes where had received a score of 100%. He was beaming!! He then added, "Miss Checchio said she noticed how I was working faster and doing a good job!". He looked at me for validation, glowing that his beloved teacher (whom he has a crush on!) had applauded his effort! "Mama....I guess you were right...tutoring does help!" I beamed myself! Sweetest boy!!! I leaned in and gave him the biggest hug and kiss. I told him I was sooo very proud and that he was astounding indeed. He smiled right back, mouth of full half grown-in adult teeth! Precious boy!

While Teddy rode his bike, I trimmed Nina's hair!!! She's been wanting to have her hair cut forever but refused to go to the salon or have Sean (my hairdresser) come over because she was too scared. She kept asking me to do it. Finally, I agreed. What was the worst that could happen??? Sean needing to come over to fix my choppy job :) Well...I did a great job if I may say so myself. I cut her hair in sections, and kept each lock that I trimmed tied, storing it carefully into a jewlery box I bought just for this moment. Nina was very happy and Teddy spontaneously complimented her on how cute she looked, causing her to blush ;)

Teddy loved his "early" Christmas present and the kids enjoyed a mug full of hot chocolate!
Nina beamed from making her brother happy and from her pretty new hair cut!

Being silly while mama took photos....but oh sooo precious!!

Promptly at 6:45, Mario arrived for tutoring. Teddy ran and jumped onto his back and shoved the quizzes into his face, "Look Mario!" Mario made a huge deal about Teddy doing such a good job. Teddy then proclaimed that his success warranted a hot chocolate and mini-stapler for his school desk ;) That boy knows how to work his mama!!! I agreed to the premise, but only after a night of successful tutoring.

As can be imagined, tutoring was a success. We had our hot chocolate from Starbucks and found a mini-stapler at Rite-Aide. Then came the sharp drop on the roller coaster!

As Teddy was getting ready for bed, I sat on his bean bag and worked on the blog. Teddy walked by and saw me clicking on a photo of Nina from July (prior to the diagnosis). He instantaneously started crying. I pulled him into my lap and kissed him. He proceeded to tell him that he missed the "old" Nina, that he was so sad because she wasn't the same. The following is a summary of our conversation:

R: I know you miss her honey. But we just need to love her.

T: I just miss my old sister.

R: Tell me what you miss..

T: She can't play with me like before, she can't run, or ride her bike, or climb like we used to...all she can do is sit because she is so tired

R: But she loves having fun with you. We just need to be happy to spend time together.

T: How can I be happy when she is so sick?

R: We have to be happy because when we are happy it makes her happy. Remember how motivated she is when the cousins are around, how much more she walks and plays?

T: Yes.

R: That's because everyone is happy. No one motivates her like you do and the cousins. You're doing everything right by loving her, being sweet, playing with her, making her laugh! She loves you so much!! You are her sunshine, ever since she was a baby.

T: (cries more into my chest! I rub his back).

T: Mom, is the medicine making her this way?

R: What do you mean honey?

T: You know, the chubby cheeks, the walking funny, the not being able to play, walk up the stairs. The medicine is causing it all, right?

R: No honey.

T: What do you mean (panic in voice increasing again)

R: The medicine is causing the chubby cheeks but the tumor in her brain is causing the rest. The medicine is trying to stop the tumor from growing.

T: And they can't take it out in an operation?

R: No sweetie.

T: Mama, is she going to make it?? I would do anything to save her life!

R: I know honey (kiss his forehead...heart aching for him!). We just need to keep loving her.

T: I just don't know how to help, what to do. I can't help the doctors...(pauses and looks out into the hallway)

R: You can help by doing what you have been doing all along, loving her, being sweet, making her laugh and praying

T: Mama....please tell me that the doctors have some hope.

R: Yes honey they do. We will just keep praying and loving her!

T: (hugs me)

R: Teddy, I am so proud of you!! This is exactly what we need to do. When you are sad you need to talk to me and daddy and let us know. We need to talk to each other, help each other. I am so proud of you at how amazing you are! Do you know that?

T: Yes

R: I love you (hug him tightly!!!)

T: I love you too!!

We sat for another minute, me tickling his back and reassuring him that we were doing everything possible. After a bit, he stood up and said, "I need a snack." He went down stairs and had some string cheese and crackers. I swallowed my tears, sent out a slew of texts asking for prayers of strength, and then cuddled up with Teddy once he returned from his snack. I read to him and he fell asleep!

I am so thankful for the incredible heart and mind that this little boy has!! I just pray that God pours all the strength and protection known to mankind into this little, precious Teddy!!! I tried to close my eyes and will my own personal roller coaster up by focusing on the incredible insight of my son! Most adults aren't capable of having conversations like this! And he is only 8. I focused on this for a long time, until the roller coaster stopped plummeting and started to climb back up steadily. My heart ached for Teddy but I also strangely felt peace. I suppose I felt peace because my sweet boy was talking to me, letting me know how he is feeling, and there is nothing better that we can do to support him, but listen, talk and love him! Nevertheless, this was not the kind of roller coaster ride I dreamed of as a child myself ;(