Tuesday October 5, 2010
Today I went to LA to meet with the Marbans. Todd took Nina to treatment, with Eileen there to help. My nature is to take care of everyone, to be the "fixer", to plan and organize. Normally, this is how I always operate and most people in my life are happy to have me take the lead (although I do get my fair share of "bossy" comments....Todd and his brother love to call me the "Ph.D. of the World".....I remind them that sometimes we laugh not because things are funny but because they are true!)
Early on I recognized that it was going to be very important for Todd to also participate in the treatment process. We could have easily just had me take a lead on the treatment while he continued to work. However, Todd has always been a hands on daddy and more than ever Nina needs her father's strength, humor, love, and support. Furthermore, it is essential for both of us to go through every aspect of this journey, not just for our ability to process the current information but for future healing. As such, we have strategically been responsible for certain treatments independently, as well as collaboratively.
Unfortunately, Nina was a bit rough this morning. Todd texted me saying that she had tantrummed violently when it had been time to leave for Cindy's. She'd hit him and screamed bloody murder when he tried to put her in the car. Poor girl! It was not personal...she was just done with the exhaustion of treatment. I could tell Todd was pretty stressed and my heart broke for him! Each time she cried, I could see it tear away a part of him. Nothing about this is easy. Even when she is happy, it really isn't easy....that dark cloud is still looming.
It was so good to see the Marbans again and to brainstorm the next steps to take with Nina. I am continuously in awe of how present God is in each in every aspect of our lives. God knew before I was even born that I would need the Marbans in my life. Their love and guidance has become life-sustaining for me and I thank God for them ceaselessly!
After meeting with the Marbans, I picked up Mario, a co-worker of mine, from UCLA. Mario has been working with me through the Koegel program for a couple of years now and is a rare talent. His parents immigrated to the U.S. as young adults from Mexico and Mario grew up in Bakersfield, which is not the easiest place to succeed. He is 23 years old and the majority of his "friends" back home are either in jail or have babies. Currently, Mario is applying to graduate programs. Clearly, he is a success story!
Years ago when I was young, I had a number of key adults in my life that saw something special in me and went out of their way to encourage me to strive for more and work tirelessly to make a difference in the world. I have never forgotten how my elementary school principal Mrs. Kyte, my high school English teacher Mrs. Prusack, my high school French teacher Madame Verhauselt, my high school History teacher Mr. Hinds, and my undergraduate advisers and mentors Jane Howard, Colleen Sparkman, and Gary Novak inspired me to believe that I could do something great when the thought had never crossed my mind. As a kid and young student I often felt confused by their encouragement...wondered what they saw...but their encouragement worked and it fueled a desire in me to make an impact. Now as an adult I value their generosity and guidance to a whole other level. I understand how important it is to help shape the younger generation. More importantly, I understand the significance of finding a diamond in the rough and helping it learn to shine...it is an honor and a privilege. As such, whenever I have an opportunity to help an up and coming star...I try to seize it. It is a way to pay it forward, to honor my mentors, and hopefully inspire the next generation to do the same. If we all did this, I bet more and more kids would graduate from school and bless their communities with their talents.
Luckily Mario and I didn't hit an ounce of traffic leaving Beverly Hills and the 405. Before long we arrived at Las Fuentes to pick up some arroz con pollo for Queen Nina. Although I was tired and eager to get home, I would not dare be in LA and not pick up my sweetheart's favorite food. So...we went to Las Fuentes and stocked up on arroz con pollo. Over dinner, Mario proclaimed that he could make a mean Mexican rice himself. I smiled and said that I could too and that Nina loved my rice. Apparently, Mario took this simple comment as an invitation to challenge my cooking, which I take GREAT pride in. He proceeded to proclaim that his arroz would beat mine any day of the week. Ohh the follies of youth!!! What I should have done at this point was just smile and I should have finished my enchilada but ...I didn't. One of my weaknesses is that I am ferociously competitive and....I took Mario's bait! Consequently, we agreed to have Nina do a taste test (blind of course...couldn't have him crying that she chose my arroz because she knew it was mama's...although my daughter would never do that....in fact she might just willfully proclaim him the winner just to spite me and make us all laugh :-)) The thing is....I know for a fact that Mario is extremely nervous that the Portuguese immigrant is going to beat the Mexican star in the "Ultimate Arroz Battle"! I can't blame him for being nervous!!! I would be too if I were in his shoes! I will have to video the results and share my victory with the world :)
Once I got home, I found Todd and the kids watching a video in the living room. Nina immediately informed me that Eileen had crashed early (jet lag) and that it was now two times that Eileen had fallen asleep before she did. Nina was very proud of this :) I kissed her, inhaling the sweet smell of clean hair. Then I crawled across the couch and scooped up Teddy who was in the "TV-zone glaze". He had just come out of the shower and his hair was still moist. There is nothing like clean little boys!!! Within a second of me placing him in my lap, he had his skinny little legs wrapped around me. I kissed his neck and he reached over and gently ran his right hand through my hair. Todd and I love our boy so much!!! We love both of our children equally. They are both Heavenly treasures! But our love for Teddy is changing because of Nina's illness. We will be better parents because of Nina, irrespective of the outcome! That in itself is a small miracle...one that most parents don't ever experience. I hugged my Teddy bear tightly. When the cartoon was over he asked me to carry him upstairs. I laughed and obeyed with my heart singing a happy song!
Sunday, October 17, 2010
Saturday, October 16, 2010
Day 48
Monday October 4, 2010
Sometimes what we need is just a simple day with nothing to do but lounge, hang out, eat, and watch iCarly! That is what we did today but not without Nina first screaming bloody murder.
After Todd took Teddy to school, Eileen and I got ready and told Nina it was time to go see Cindy. Well...the girl went ballistic!! As I tried to buckle her into the car seat, she literally slapped me in the face 3 times. Eileen just looked away, half horrified, half trying not to break into hysterics. I couldn't get mad at her...it did suck! What was more, Dr. Weisenberger (her radiation doctor) had once told her to not let anyone control her emotions, that they were hers and she should own them. His words had really resonated with me and I reminded myself of them frequently...especially when she trantrummed bloody murder.
Once Nina was buckled, we drove off. Before we had actually reached the freeway, Nina had stopped screaming and crying. She was still shooting me the stink eye thru the rear-view mirror but I'd take that over shrieks any day :) Poor baby!!! Unfortunately, as soon as well pulled up to the Cancer Center she started screaming again. Eileen had to steady the stroller so I could get her in. She actually tried to jump out of the stroller, fortunately for me the weight gain had slowed her down substantially so she didn't actually get very far. All the way down the sidewalk she screamed. All of Mission Street heard her screams....frankly probably most of Santa Barbara did! When we rolled into the lobby my friend Larisa was waiting for us. As Nina screamed Larisa just gave me the sweetest look, her heart poured for us. Larisa and I smiled at each other and she took over for Eileen. It is such a blessing to have the love of great friends!!!
We walked into our treatment room where Cindy joined us. Nina was still screaming. Cindy and I went about our business, catching up, periodically testing the waters with Miss Nina to see if she was de-escalating. After about another 2 minutes she stopped...the ferocity just subsided. I looked at Larisa, whose eyes were welling up. She just shook her head and told me what a marvel Nina was...that her sheer strength was something amazing to behold! We both wanted to just hug her but knew she wasn't quite ready! Larisa was totally right....Nina willed herself to be brave! Nina's strength with all of this left everyone in awe! The rest of treatment was perfect. From how well she did the rest of the time, no one could have ever imagined that minutes earlier had been Linda Blair from the Exorcist.
Eileen quickly dropped of Dave back at the airport (his flight yesterday had been canceled because of weather) and then joined us back at the cancer center. The actual treatment went without a hitch! Thank God! After that, the day was impeccably calm...just hanging out! I have never really been able to just "hang out" without doing something. Nina is teaching me how cool it is to just "hang out"! It is growing on me :)
Sometimes what we need is just a simple day with nothing to do but lounge, hang out, eat, and watch iCarly! That is what we did today but not without Nina first screaming bloody murder.
After Todd took Teddy to school, Eileen and I got ready and told Nina it was time to go see Cindy. Well...the girl went ballistic!! As I tried to buckle her into the car seat, she literally slapped me in the face 3 times. Eileen just looked away, half horrified, half trying not to break into hysterics. I couldn't get mad at her...it did suck! What was more, Dr. Weisenberger (her radiation doctor) had once told her to not let anyone control her emotions, that they were hers and she should own them. His words had really resonated with me and I reminded myself of them frequently...especially when she trantrummed bloody murder.
Once Nina was buckled, we drove off. Before we had actually reached the freeway, Nina had stopped screaming and crying. She was still shooting me the stink eye thru the rear-view mirror but I'd take that over shrieks any day :) Poor baby!!! Unfortunately, as soon as well pulled up to the Cancer Center she started screaming again. Eileen had to steady the stroller so I could get her in. She actually tried to jump out of the stroller, fortunately for me the weight gain had slowed her down substantially so she didn't actually get very far. All the way down the sidewalk she screamed. All of Mission Street heard her screams....frankly probably most of Santa Barbara did! When we rolled into the lobby my friend Larisa was waiting for us. As Nina screamed Larisa just gave me the sweetest look, her heart poured for us. Larisa and I smiled at each other and she took over for Eileen. It is such a blessing to have the love of great friends!!!
We walked into our treatment room where Cindy joined us. Nina was still screaming. Cindy and I went about our business, catching up, periodically testing the waters with Miss Nina to see if she was de-escalating. After about another 2 minutes she stopped...the ferocity just subsided. I looked at Larisa, whose eyes were welling up. She just shook her head and told me what a marvel Nina was...that her sheer strength was something amazing to behold! We both wanted to just hug her but knew she wasn't quite ready! Larisa was totally right....Nina willed herself to be brave! Nina's strength with all of this left everyone in awe! The rest of treatment was perfect. From how well she did the rest of the time, no one could have ever imagined that minutes earlier had been Linda Blair from the Exorcist.
Eileen quickly dropped of Dave back at the airport (his flight yesterday had been canceled because of weather) and then joined us back at the cancer center. The actual treatment went without a hitch! Thank God! After that, the day was impeccably calm...just hanging out! I have never really been able to just "hang out" without doing something. Nina is teaching me how cool it is to just "hang out"! It is growing on me :)
 |
| Funny Girl! |
Day 47
Sunday October 3, 2010
We were all exhausted today!!! Yesterday had been an unbelievably beautiful day...in all aspects. Eileen had been a gorgeous bride, Dave a handsome groom, Teddy a darling ring man, and Nina a most precious flower girl! Eileen and Dave had given us the most astounding gift ever! For the rest of our lives, we would be grateful. Because of their fervent love for us and their generous hearts we got see our honey-girl smile with pure delight!
Now...today...we were all feeling the aftermath of the great party. We slept in, lounged around. Our friends Kyle and Ellie had been in town for another wedding and dropped by. Teddy adores Kyle and it was wonderful that they could spend a little time together. I watched my brother as he attentively cared for Nina and his "Preggers" wife, as he affectionately calls her...not sure Michelle completely loves that term of endearment :) I find it better than what my friend Danny called me when I was pregnant with Nina..."Pooch"! Who in their right mind calls a pregnant woman that??? Only my dear friend Danny...and he is still so proud of himself :)
After breakfast, Eileen took Dave to the airport and then went to her bridal shower with friends from Santa Barbara. Then came the moment I had feared most...Adelae leaving. I had woken up with a terrible sense of dread! Reality was sweeter for us since Addie had come into town. Now, she was leaving and I worried about how Nina would respond, how Teddy would respond, how I would respond!! Well...there was lots of fanfare and the kids definitely let Adelae know they loved her and were going to miss her. At one point, they both latched onto her legs and said they were refusing to let her go. Eventually, they hugged her one more time and said goodbye. Then Nina went into her bedroom. I followed her. Her lip quivered. I asked her what was wrong and she told me, "I miss Adelae!" I hugged her and she let me hold her for a long time. I told her I was sad too and that it was okay. We then climbed into her bed and turned on iCarly!
As soon as Nina was settled, I raced outside. Bruno and Michelle were still loading a few things into the car. I ran up to Addie and hugged her tightly. I did not want to let go for so many different reasons!!! But alas, I had to. I enveloped her perfect face with my hands and told her she was a miracle sent to us by God above and that we loved her with all of our hearts!! I then told her I was forever grateful for the love she had shown Nina during her visit and that I promised I would spend the rest of my life thanking her. As I said these words, tears welled in Addie's eyes. She knew I meant every word!! I kissed her one last time and then let her climb into the car. I waved goodbye at her and at my brother and sweet sister-in-law.
I then felt it!! I walked into the house and checked on Nina. She was napping. I grabbed the car keys and without saying a word to anyone drove off. I pulled out of our complex before I was overcome by sadness! My precious 11-year old niece had blessed us so deeply and now she was gone. My heart ached!! As adults we tell ourselves we are the ones that take care of and teach our children. This week, Addie had taken care of me and taught me to love without limitations, to not give into fear, and most of all to bless others without expecting anything in return! Precious Adelae, I thank God for you constantly!!
I drove for a long time then decided since I was already driving I might as well drive downtown and pick up some new clothes for Nina. Since starting the steroids she had put on almost 10 pounds and had outgrown most of her clothes. I went to a children's store and stocked up on leggings and lose cotton shirts so that she could be cozy and comfortable. As I was leaving the store back to the parking garage, I passed by a t-shirt souvenir shop and found Todd's birthday gift!! It was a t-shirt with George Costanza on it. I had seen students at UCSB with this t-shirt before and had known that Todd would love it but none of the little punks ever seemed to know where they had purchased it! Now I had found it and knew Todd would get a kick out of it! As always, when I'm down...God throws me a little something to help me get back up. This time it was George...almost in the buff...and boy did it ever help me back up!!! Hysterics all the way back to the car!
We were all exhausted today!!! Yesterday had been an unbelievably beautiful day...in all aspects. Eileen had been a gorgeous bride, Dave a handsome groom, Teddy a darling ring man, and Nina a most precious flower girl! Eileen and Dave had given us the most astounding gift ever! For the rest of our lives, we would be grateful. Because of their fervent love for us and their generous hearts we got see our honey-girl smile with pure delight!
Now...today...we were all feeling the aftermath of the great party. We slept in, lounged around. Our friends Kyle and Ellie had been in town for another wedding and dropped by. Teddy adores Kyle and it was wonderful that they could spend a little time together. I watched my brother as he attentively cared for Nina and his "Preggers" wife, as he affectionately calls her...not sure Michelle completely loves that term of endearment :) I find it better than what my friend Danny called me when I was pregnant with Nina..."Pooch"! Who in their right mind calls a pregnant woman that??? Only my dear friend Danny...and he is still so proud of himself :)
After breakfast, Eileen took Dave to the airport and then went to her bridal shower with friends from Santa Barbara. Then came the moment I had feared most...Adelae leaving. I had woken up with a terrible sense of dread! Reality was sweeter for us since Addie had come into town. Now, she was leaving and I worried about how Nina would respond, how Teddy would respond, how I would respond!! Well...there was lots of fanfare and the kids definitely let Adelae know they loved her and were going to miss her. At one point, they both latched onto her legs and said they were refusing to let her go. Eventually, they hugged her one more time and said goodbye. Then Nina went into her bedroom. I followed her. Her lip quivered. I asked her what was wrong and she told me, "I miss Adelae!" I hugged her and she let me hold her for a long time. I told her I was sad too and that it was okay. We then climbed into her bed and turned on iCarly!
As soon as Nina was settled, I raced outside. Bruno and Michelle were still loading a few things into the car. I ran up to Addie and hugged her tightly. I did not want to let go for so many different reasons!!! But alas, I had to. I enveloped her perfect face with my hands and told her she was a miracle sent to us by God above and that we loved her with all of our hearts!! I then told her I was forever grateful for the love she had shown Nina during her visit and that I promised I would spend the rest of my life thanking her. As I said these words, tears welled in Addie's eyes. She knew I meant every word!! I kissed her one last time and then let her climb into the car. I waved goodbye at her and at my brother and sweet sister-in-law.
I then felt it!! I walked into the house and checked on Nina. She was napping. I grabbed the car keys and without saying a word to anyone drove off. I pulled out of our complex before I was overcome by sadness! My precious 11-year old niece had blessed us so deeply and now she was gone. My heart ached!! As adults we tell ourselves we are the ones that take care of and teach our children. This week, Addie had taken care of me and taught me to love without limitations, to not give into fear, and most of all to bless others without expecting anything in return! Precious Adelae, I thank God for you constantly!!
I drove for a long time then decided since I was already driving I might as well drive downtown and pick up some new clothes for Nina. Since starting the steroids she had put on almost 10 pounds and had outgrown most of her clothes. I went to a children's store and stocked up on leggings and lose cotton shirts so that she could be cozy and comfortable. As I was leaving the store back to the parking garage, I passed by a t-shirt souvenir shop and found Todd's birthday gift!! It was a t-shirt with George Costanza on it. I had seen students at UCSB with this t-shirt before and had known that Todd would love it but none of the little punks ever seemed to know where they had purchased it! Now I had found it and knew Todd would get a kick out of it! As always, when I'm down...God throws me a little something to help me get back up. This time it was George...almost in the buff...and boy did it ever help me back up!!! Hysterics all the way back to the car!
Seriously???? Fine!!! Bring it!!!!
October 15, 2010
I woke up at about 5am....madly itching!!! My legs and stomach were killing me they itched so badly. I crawled out of the bedroom and into the bathroom only to find my entire body (with the exception of my neck and face) covered in a gigantic rash. I had hives!!! I'm sure it is stress induced! I've had hives on my ankles before but never across most of my body!! I just started to laugh!! I actually started laughing so hard, I had to cover my mouth, fearing I'd wake up one of the kids.
I crawled back into bed, trying to not itch, but it was psychotically impossible not to. I lay there laughing. Of course I had a major, uncomfortable, annoying as hell rash across my entire body on the one weekend we had dared to get away. For weeks, Nina has been asking to go to the beach house. Todd's Uncle Wally and Aunt Bonnie have this incredible house in Pajaro Dunes (near Santa Cruz) that they generously allow the family to use for vacations. Whenever we have all taken a family vacation with Todd's family and mine it has always been at the beach house. All of the kids adore coming here. Some of their favorite memories have been made here. So...with Nina's persistent requesting and given her strength and stability, we decided to bite the bullet and come. Eduardo alleviated my fears by ensuring us that he had contacts at Standford that could easily help us if need be. So, yesterday afternoon around 2pm we left Santa Barbara. Nina was beside herself with joy...we all were to varying degrees.
So... it is fitting that the one weekend we decide to get away and do something fun as an entire family....I get hives!!!
After a few minutes of laughing and mocking myself, the humor began to dissipate and became replaced by grief. Everything around me was being demolished!! Every aspect of my life was being ripped away from me, with the most precious and important one being my daughter!! Grief began to turn into despair!! How could this be happening to me??? It is not fair!!!!! I began to feel dizzy and that damn blasted heat began to race back to my head. Then the tears came...slowly but then gushing! I hate it when I can't control my own crying!!! It is as if my sobs take over my body and I am just a passenger, helplessly hanging on.
I knew what was coming so I grabbed my jacket and shoes and snuck out of the room before I woke up Adelae and Nina. I grabbed a second coat from the downstairs closet and quietly opened the front door. I needed to escape. I couldn't be in the house and be quiet. The crying was building up and it was going to be bad...I could tell it was going to be terrible!!
I made it to the beach within a minute. The morning air was crisp and misty. The waves pounded the shore, repetitively. I began to walk fast then I began to run. I ran and ran and ran. Then I stopped and screamed and screamed and screamed. I had denied this for a very long time but something is working against me!!!
As soon as everything started unraveling in August, I've felt like something (some kind of force....trust me I've struggled severely with this!!!) keeps pushing me to the brink, wanting desperately to snap me, worst of all...pushing me with unholy force to hate God!!! I have been angry at this situation repeatedly, who wouldn't... but I have never been angry at God for any of this...heartbroken only, pleading for mercy constantly...but never angry! Over the last couple of weeks I have struggled with something that was brewing, pushing me there but I have refused. I have found myself being shoved to this precipice repeatedly, and the frequency and intensity of this battle has increased. Internally, I have been battling a turmoil that is bigger than my pain over Nina....I have felt like the entire universe has been pushing me to the edge, waiting for me to curse God above and then swallow me up! I cannot explain how terrifying this is!! The thoughts that have been racing through my mind have been simply insane and I have been so overwhelmed because I have been fighting but feeling like it was a losing battle.
Then this morning, this stupid rash was the straw that broke the camel's back! I finally recognized that there is something going on here, that it is not my imagination, but like my friends have said...that I am living through my very own personal plague of biblical proportions...that in essence I am like JOB, having everything most precious to me being taken away. Weeks ago Todd had tried to read to me from Job but I had become furious when he tried to draw the comparison. I vividly remember saying that unlike Job, I would break!!! I was so fearful!!! But this morning, when I stood alone on that beach, listening to the crashing waves, trying to not scratch my itchy body, something changed! Unlike previous times during the past 6 weeks, I was no longer fearful! I found myself thinking So What!!! Everything I love is being destroyed...just when I don't think it can get worse....it does! But instead of snapping, God has held my heart fiercely!!! I have never felt the presence of God as securely as when these thoughts raced thru my head!
What I realized this morning is that God's love for me is constant...it is incandescent in spite of whatever I say, do, think!!! It does not matter!! I can drop as many F-bombs as I want and God will still love me! I can think the most vile thoughts and God will still love me! I can want to run away ten thousand times and God will still love me! Nothing I fear matters!!! I am the daughter of the Most High God, Creator of Heaven and Earth, and I have NOTHING to fear!! As I stood there on the sand, these thoughts pouring through my mind, I felt an immense amount of relief come over me. Most of all... I did not feel alone anymore!
Let's be honest now...the worst case scenario in my life right now, and probably for the rest of my life, is that I will have to give my daughter back to Heaven, knowing that someday I will see her there again! That is the WORST case scenario!! But as painful as that is (and will ALWAYS be) it is still WONDERFUL because my precious child will spend Eternity with her Heavenly Father, watching over us, our very own angel.....if this is what our journey is suppose to be, although I pray constantly for the healing we need! If the absolute worst is still at it's core something wonderful, something glorious, something majestic, then what do I have left to fear....NOTHING!!! Sure I will continue to be sad, feel empty, and some days it will feel like it is too much to bare, but that is why God gives us family and friends to walk with us, to love us, to help us find joy...most of all that is why God never ceases to hold us tightly and carry us!!
Last April in a conversation with my father-in-law, I had said that I believed that because I had walked the straight-and-arrow, sacrificed myself in many ways, that my life had been shielded from extreme pain and sorrow...like I had extra cushioning protecting me!!! I have come to roux the day I said that...it was as if I challenged something. But now, I realize that it does not matter!!! I do not need to fear a thing!!!
Today, as I stood there on the empty beach, with the morning sun trying to break through the heavy embankment, I seized my life from the grasp of fear.
After lunch, my father-in-law and I went on a long walk where he shared with me a verse he had recently memorized. It was Psalm 139. I just re-read it and all I can say is that God is good! We will all be transformed by this, one way or another, irrespective of the outcome! My prayer is that we all fervently try to let God soften our hearts. For me it was by calming my fears. I am thankful and I shout out (because I have a
I woke up at about 5am....madly itching!!! My legs and stomach were killing me they itched so badly. I crawled out of the bedroom and into the bathroom only to find my entire body (with the exception of my neck and face) covered in a gigantic rash. I had hives!!! I'm sure it is stress induced! I've had hives on my ankles before but never across most of my body!! I just started to laugh!! I actually started laughing so hard, I had to cover my mouth, fearing I'd wake up one of the kids.
I crawled back into bed, trying to not itch, but it was psychotically impossible not to. I lay there laughing. Of course I had a major, uncomfortable, annoying as hell rash across my entire body on the one weekend we had dared to get away. For weeks, Nina has been asking to go to the beach house. Todd's Uncle Wally and Aunt Bonnie have this incredible house in Pajaro Dunes (near Santa Cruz) that they generously allow the family to use for vacations. Whenever we have all taken a family vacation with Todd's family and mine it has always been at the beach house. All of the kids adore coming here. Some of their favorite memories have been made here. So...with Nina's persistent requesting and given her strength and stability, we decided to bite the bullet and come. Eduardo alleviated my fears by ensuring us that he had contacts at Standford that could easily help us if need be. So, yesterday afternoon around 2pm we left Santa Barbara. Nina was beside herself with joy...we all were to varying degrees.
So... it is fitting that the one weekend we decide to get away and do something fun as an entire family....I get hives!!!
After a few minutes of laughing and mocking myself, the humor began to dissipate and became replaced by grief. Everything around me was being demolished!! Every aspect of my life was being ripped away from me, with the most precious and important one being my daughter!! Grief began to turn into despair!! How could this be happening to me??? It is not fair!!!!! I began to feel dizzy and that damn blasted heat began to race back to my head. Then the tears came...slowly but then gushing! I hate it when I can't control my own crying!!! It is as if my sobs take over my body and I am just a passenger, helplessly hanging on.
I knew what was coming so I grabbed my jacket and shoes and snuck out of the room before I woke up Adelae and Nina. I grabbed a second coat from the downstairs closet and quietly opened the front door. I needed to escape. I couldn't be in the house and be quiet. The crying was building up and it was going to be bad...I could tell it was going to be terrible!!
I made it to the beach within a minute. The morning air was crisp and misty. The waves pounded the shore, repetitively. I began to walk fast then I began to run. I ran and ran and ran. Then I stopped and screamed and screamed and screamed. I had denied this for a very long time but something is working against me!!!
As soon as everything started unraveling in August, I've felt like something (some kind of force....trust me I've struggled severely with this!!!) keeps pushing me to the brink, wanting desperately to snap me, worst of all...pushing me with unholy force to hate God!!! I have been angry at this situation repeatedly, who wouldn't... but I have never been angry at God for any of this...heartbroken only, pleading for mercy constantly...but never angry! Over the last couple of weeks I have struggled with something that was brewing, pushing me there but I have refused. I have found myself being shoved to this precipice repeatedly, and the frequency and intensity of this battle has increased. Internally, I have been battling a turmoil that is bigger than my pain over Nina....I have felt like the entire universe has been pushing me to the edge, waiting for me to curse God above and then swallow me up! I cannot explain how terrifying this is!! The thoughts that have been racing through my mind have been simply insane and I have been so overwhelmed because I have been fighting but feeling like it was a losing battle.
Then this morning, this stupid rash was the straw that broke the camel's back! I finally recognized that there is something going on here, that it is not my imagination, but like my friends have said...that I am living through my very own personal plague of biblical proportions...that in essence I am like JOB, having everything most precious to me being taken away. Weeks ago Todd had tried to read to me from Job but I had become furious when he tried to draw the comparison. I vividly remember saying that unlike Job, I would break!!! I was so fearful!!! But this morning, when I stood alone on that beach, listening to the crashing waves, trying to not scratch my itchy body, something changed! Unlike previous times during the past 6 weeks, I was no longer fearful! I found myself thinking So What!!! Everything I love is being destroyed...just when I don't think it can get worse....it does! But instead of snapping, God has held my heart fiercely!!! I have never felt the presence of God as securely as when these thoughts raced thru my head!
What I realized this morning is that God's love for me is constant...it is incandescent in spite of whatever I say, do, think!!! It does not matter!! I can drop as many F-bombs as I want and God will still love me! I can think the most vile thoughts and God will still love me! I can want to run away ten thousand times and God will still love me! Nothing I fear matters!!! I am the daughter of the Most High God, Creator of Heaven and Earth, and I have NOTHING to fear!! As I stood there on the sand, these thoughts pouring through my mind, I felt an immense amount of relief come over me. Most of all... I did not feel alone anymore!
Let's be honest now...the worst case scenario in my life right now, and probably for the rest of my life, is that I will have to give my daughter back to Heaven, knowing that someday I will see her there again! That is the WORST case scenario!! But as painful as that is (and will ALWAYS be) it is still WONDERFUL because my precious child will spend Eternity with her Heavenly Father, watching over us, our very own angel.....if this is what our journey is suppose to be, although I pray constantly for the healing we need! If the absolute worst is still at it's core something wonderful, something glorious, something majestic, then what do I have left to fear....NOTHING!!! Sure I will continue to be sad, feel empty, and some days it will feel like it is too much to bare, but that is why God gives us family and friends to walk with us, to love us, to help us find joy...most of all that is why God never ceases to hold us tightly and carry us!!
Last April in a conversation with my father-in-law, I had said that I believed that because I had walked the straight-and-arrow, sacrificed myself in many ways, that my life had been shielded from extreme pain and sorrow...like I had extra cushioning protecting me!!! I have come to roux the day I said that...it was as if I challenged something. But now, I realize that it does not matter!!! I do not need to fear a thing!!!
Today, as I stood there on the empty beach, with the morning sun trying to break through the heavy embankment, I seized my life from the grasp of fear.
So...you fucking beasts....bring it!!! I will NOT be consumed by fear. I will stand my ground because my Heavenly Father stands guard over me!!! Yes my heart is broken, my soul is in pain, I do not know what to do....but what do I have to fear????
NOTHING!!!!
After lunch, my father-in-law and I went on a long walk where he shared with me a verse he had recently memorized. It was Psalm 139. I just re-read it and all I can say is that God is good! We will all be transformed by this, one way or another, irrespective of the outcome! My prayer is that we all fervently try to let God soften our hearts. For me it was by calming my fears. I am thankful and I shout out (because I have a
terrible singing voice :))praises!
Friday, October 15, 2010
Day 46
Saturday October 2, 2010
I didn't sleep much last night. I was overwhelmed by my feelings of happiness, joy, and gratitude for Eileen and Dave. Because of their love for our family and generosity, Nina was going to happily participate in their most sacred day. But then again...I was equally overwhelmed by my feelings of sadness and longing for all the things that Nina may never get to experience and subsequently that I may never get to experience. It is astounding how such polar emotions can co-exist, simultaneously pounding in my heart.
My brother Bruno and Michelle had arrived late last night. They, along with Larisa, were going to help us with the wedding today. All three of them were on photo patrol, with Larisa taking the lead. Larisa is an incredibly gifted photographer! She has captured some of the most amazing photos of my family during the past couple of months. I hope to repay her someday!!
Before breakfast, Eileen and I ran to the farmer's market and bought some incredible orchids and roses. When we returned, we had a lovely breakfast and proceeded to get ready. Adelae did all of our hair. The girl is beyond incredible. Not only does she get amazing grades, is incredibly gentle with her little cousin, is caring and giving, she is also a brilliant talent at doing hair! There is nothing this kiddo can't do!! Initially, Eileen had been a bit skeptical about my suggestion of having Addie do our hair but once she saw what she had done to mine, she knew she'd be in good hands. Sure enough, all three of us had gorgeous hair dos...then she turned around and did a spectacular number on herself! She is a rare talent indeed!
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| The girls with their pretty hair-dos preparing the flowers for Nina's basket. |
Then the moment we had all been waiting for came....we got dressed. When Eileen pulled out her dress to show Nina, Nina's mouth practically hit the ground. She was speechless....Eileen's dress matched her flower girl dress! At the beginning of the week, Eileen had called me elated because she had found a second wedding dress at David's Bridal for $99 that matched Nina's. She had immediately bought it because she knew Nina would be ecstatic and also because it prevented her from having to shlep her lace wedding gown across the country a week before their formal wedding in Boston (10-10-10). Nina couldn't believe her luck and exclaimed, "We are twins!"
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| Beautiful, Happy Girls with Matching Dresses! |
That's when the storm hit me. It was almost as if I had an out of body experience. I stood there watching myself with my daughter, helping her get into a gorgeous satin white gown, lifting her hair out of the way so I could fasten a flawless silver necklace. It was simultaneously a wonderful gift but also a curse. As I squatted down to help Nina put on her ballet slippers, I became completely overcome by a flood of emotions. This should not be my only opportunity to dress my daughter in a bridal gown and bridal shoes. I felt dizzy...and hot...oh so hot! I looked up at Nina, willfully commanding myself to not cry and told her she was spectacular...the most beautiful girl in the world. Then I excused myself. Quietly and quickly I walked up to the upstairs bathroom and closed the door behind me. I was distraught...no other word can describe what I was feeling. I have always understood from a clinical perspective why people cut themselves but I had never understood it from a human perspective...that is until that very moment. I stood there, drenched in so much pain that I actually opened a counter drawer and put my hand in it. I hurt so badly!! I finally understood why people hurt themselves...they just want to displace the pain somewhere else. That is what I wanted...I wanted the pain in my heart and soul to go somewhere else...my hand. I stood there quietly for about a minute, actually contemplating slamming the drawer onto my hand. In the end, I am too big of a weenie in terms of physical pain and did not want to have to spend the rest of the day with a wounded hand. I instead prayed for unyielding strength. I did not want to lose it in front of the kid or Eileen. This was Eileen and Dave's amazing day and gift to us and I wanted to make sure I only gave her my very best.
I composed myself and went back downstairs. I found Todd hugging Nina. He had the same deep sadness in his eyes as he told her she was beautiful. I knew what he was feeling...I was feeling it! We were both lost in the heartbreak of possibly never seeing our honey-girl fall in love and marry. For us, this could be as close as we would ever get to that day. Although we were humbled and so grateful for the opportunity, we were also demolished! There is just nothing we can do about it!
The wedding was incredible. We went to Hendry's Beach. Teddy had inquired if it was just the 10 of us and I can confirmed. He said he could totally handle that and be the ring man. What I failed to mention was that it was just the 10 of us at the actually ceremony...but we would be accompanied by at least 500 onlookers sitting at the adjacent restaurant or lounging on the warm sand :) Once we got there he said, "Hey...mom said it was just going to be the 10 of us." Todd and Bruno laughed. Oops!
Todd was suppose to officiate. I had a gnawing feeling that it was going to be incredibly difficult for him to do so, so I prepared a back up plan. Todd opened the ceremony in prayer. Nina was standing right by his side. She leaned on him and he brushed her long hair to the side as he began to talk about marriage. I could tell that he was overcome by his love for Nina and the significance of this day...not just for Eileen and Dave, but for all of us. Nina looked up at him. He was her first true love and he knew it! His lips were the first boy's lips she had kissed, his hand was the first boy's hand she'd held, she sought his approval for her beauty, he was her first dance at a New Year's party, and his were the first strong pair of arms she'd fallen asleep in. She smiled at him and he...he began to cry. It is excruciatingly painful to see your husband cry. I rubbed his back and tried to help anchor him. I continued, reading the words and vows I had prepared the night before. Todd and Nina held hands. When I announced Dave and Eileen as husband and wife and proclaimed that Dave could now kiss his bride, Nina shyly hid her face in her father's shirt. It was all completely priceless!!
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| Shy honey-girl! |
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| It wouldn't be a complete Santa Barbara beach wedding without the cute surfer! |
The rest of the day and evening was spent in bliss...I bossed everyone around with photos (Dave had the audacity to question some of my demands :) I knew he was golden...he can even keep up with my craziness and Todd's! Welcome to the insane family Dave! Now it's too late to run!), we had Palazzio cater dinner, Eileen and I danced in a ridiculous attempt to get Nina to boogie, we laughed, ate cake, drank champagne, and Teddy ran around saying, "You may now not kiss the bride!" to which Dave and Eileen kissed each time. Each time they kissed, Teddy would get a wicked little smile across his face before he scurried off into another room, returning mere minutes later to taunt the new Mr. and Mrs. Feldman for another PDA! Silly boy!!
Love is a grand thing....sometimes it takes a very long time to find...but if we are blessed enough to find it....we should never let go....we should only praise God for it!
Day 45
Friday October 1, 2010
The first words out of Nina’s mouth this morning were, “I’m so excited about Eileen’s wedding!” For months Nina has been eagerly anticipating Eileen’s wedding. Originally, Eileen and Dave were going to get married in St. Thomas but after Nina’s illness they decided to change their plans. They were arriving this afternoon in Santa Barbara and having a small ceremony with just us so that Nina could still be the flower girl. Just thinking about this makes me want to cry. The generosity and love that they are showing us is unfathomable…the stuff that really only exists in literature.
For months, Nina had talked about being the flower girl and Teddy being the ring man. We’ d look at photos of flower girl dresses and she’d give us her infamous thumbs-up or thumbs-down. When Eileen had last been here, she and Nina had ordered a gorgeous white satin gown with a blue sash, just like Nina had insisted from the beginning that she wanted to wear. Nina has more fashion sense in her tiny 5 year-old pinky then I do in my entire 33-year old body J When her dress had arrive last month, Nina had beamed! It was obvious that she felt beautiful in it!
It never ceases to amaze me how one second Nina can be delighted and full of excitement about the wedding and the next she is screaming bloody murder. The house was filled with a thunderous scream when she found out that Addie was going to stay at the house and hang out with Teddy while we went to the treatment center. She literally screamed so loudly that I thought for sure she had hurt herself. It was awful!! She cried and screamed and grabbed onto the kitchen furniture as I tried to escort her to the car. Poor Adelae!! She just stood there, trying to calm down Nina by gently stroking her hair and explaining that she was just going to spend a bit of time with Teddy since she really hadn’t been able to do so. But nothing was going to pacify Nina! She was torn. Her lifeline was being taken away from her and she was going to let everyone know how horrendous it felt. I had never seen her this upset! She screamed that she was not going to go and I wanted to cry myself. Addie just looked at me, torn herself. On one hand she really wanted to spend some one-on-one time with Teddy and go bowling, but on the other hand she adored Nina as much as her own siblings. Within a few seconds, Addie turned to me and said that she would go with us and asked if I could take them bowling afterwards. I bit my cheek as hard as I could to try to hold back the tears. I thanked Adelae and the three of us jumped into the car. We were going to be late.
I called Cindy to inform her that we had barely averted a disaster and as such were going to be a tad late. By the time we got onto the freeway, Nina had stopped crying. I blasted the radio and then silently cried. I knew what Nina was feeling. Having Adelae here this week was the best thing that had ever happened, as therapeutic as radiation, arguably more!! With Addie around we were all more joyous, all happier, more like the family we had always envisioned ourselves being. As the week had progressed a growing pang had started to emerge. I was secretly cursing the day that Addie would have to leave. I did not want to think about it, but then constantly found myself saddened by the anticipation of having to say goodbye, fearing how Nina would respond, fearing the emptiness I would feel. I looked at Adelae through the rear-view mirror. She was talking to Nina. I cried, constantly wiping away the tears so that the girls would not notice, and thanked God for her. This beautiful 11-year old angel had an unbelievable capacity to love, greater than most adults I had ever met. She had wanted to stay with Teddy but recognized that the joy and peace she brought her little cousin was right now more important than anything else. Most adults are not able to make that type of decision in hours, albeit seconds. I have always been committed to supporting my nieces and nephews in whatever manner they needed. I love them as if they were my own flesh and blood. But right there and then, as I saw Addie pour herself into her scared little cousin I made God a promise that I would spend the rest of my life blessing Addie. In less than a week, Adelae had transformed Nina’s life and our lives. She had given me pure oxygen to breath. There is no way that I can ever fully repay that type of love, but I will try and try and try!!!
As we drove to the Cancer Center, Adelae reminded Nina how today we got to go to the Zoo for a behind-the-scenes tour. We were going to get to pet a penguin and see other animals up close. The girls talked about how cool it was going to be and whether the penguin was going to feel soft or hard. Again, how can an 11-year know to redirect another child and distract them from their sadness??? I kept praying for a miracle…God had given me one already…her name was Adelae!
Given how atrocious our morning had been, the actual treatment went without a hitch. Once Nina was sedated, Addie and I ran to IHOP to get some breakfast. Addie ordered pancakes and we got Nina a waffle with strawberries and whipped cream. I felt like I had been through the wringer, so I splurged and got myself toast and hash browns….ooh the warm yumminess of hash browns just makes the soul smile…and I needed my soul to smile! By now the sweet IHOP cashier knew who we were and had our phone order ready to go in a jiffy. When we returned to the Cancer Center we were pleasantly surprised by Todd’s visit. Apparently, he had told Nina he’d bring her some rootbeer for popcorn Friday. Sure enough…he kept his promise…he is such a good Dada! Addie ate her breakfast and Nina got rolled in a few minutes later. Although her weight gain had made it difficult to close the mask, the radiation team was making it work. I was so thankful!
Before Nina woke up, my friend Katie came and picked up Addie. She took her to Zodo’s Bowling and Beyond, where she joined Teddy and our cousin Lindsey. Nina woke up to her daddy’s voice, which is always a good thing J Todd decided to play hooky from SBJH for a little while longer and helped Nina with her IHOP breakfast. I just sat back and relished in the beauty of their love for each other. Todd has an impeccable sense of humor…well okay impeccable is probably not the correct adjective….more like wicked and very irreverent. With the kids he keeps it in check and they live for it…they love that their dad is funny!! Most of the time, I sit nervously, praying that he doesn’t say anything too outrageous that will offend half of the population. I honestly believe that he is as outrageous as he is at times just to torture me…to get me riled up. I am very predictable (although I fervently try to deny this!!) and 99% of the time get riled up! Anyhow, this morning, Todd was his impeccable funny daddy self and Nina loved it! The video below illustrates this mutual love affair the best!
After Dada was done being the stand-up comic, Nina and I joined Teddy, Addie and Lindsey at the bowling ally. Teddy and Addie had been able to have some one-on-one time and won some fun prizes in the arcade. Nina was happy to bowl, she was a natural bowler and more often than not she beat all of the older kids. This was a significant source of pride for Nina! We started bowling and half way through our game, Eileen called to say that she and Dave had arrived at the airport. We decided that they’d take a cab to our place and that we’d join them as soon as the kids finished their game. Per usual, Nina won! She was so happy….Teddy who normally struggles with his little sister beating him was even happy for her.
It was so good to see my friend Eileen. I was so happy to see her in love. It had been a long journey to Dave but how sweet it was now! At 2pm Larisa arrived and we made our way to the SB Zoo. What transpired next was something best described as magical. We got to hang out with Pigloo the Penguin, pet her and learn all about her. We even had a poop-disaster, but thankfully Pigloo missed us all by mere millimeters J Of course, little did we know that this near miss would be Nina’s favorite part of the Zoo tour! Figures!
Once we got down the stairs, we had to be super quiet because we were suppose to pass the Gorilla's bedrooms. Apparently, the two gorillas (who are brothers) had a tough day with each other and consequently were in their "quiet" quarters. As we passed by, one of the brothers hollered a terrifying sound and shook his cage!! Let me tell you...those are some mighty creatures and we were all terrified! Once we got passed the gorillas and into the giraffe chamber, Nina turned to me and said, "Boy that was scary!" I love that girl...it was scary!! Awesomely scary!
Feeding the giraffes was incredible. They are beautiful, albeit awkward creatures. We were all so delighted to see how strong Nina was, how she did not succumb to fear, but got right in there just like Teddy and Adelae. It was breathtaking to watch. We finished our zoo tour with a private meeting with a red-tail hawk. He was a spectacular animal and I believe the adults were just as excited to learn about him as the kids :)
All in all, what started off as a terribly rocky day ended in an amazing adventure...but then again isn't that life?
We also want to send a special thank you to the Dreier family who made this most magical of days and the Zoo Party a reality for our Nina!!! Thank you from the bottom of our hearts!!
Thursday, October 14, 2010
Avoidance
I feel like I am stuck...like my body wants to move forward, take a step, reach for the door handle, but my mind won't send the signal to make things work. It is a very confusing feeling...I envision myself typing, think about what I'm going write down, but it is as if the neurons aren't firing correctly and therefore my fingers won't work.
Ever since Friday October 1st, I have been avoiding writing in this blog....talking to people....owning my emotions. Nina is doing well so one would think I would be doing well. In many ways I am doing well. I am so thankful for her new found energy, sassiness, and happiness. As I've noted before, it is as if we have returned to some semblance of normalcy...but it is all a mirage.
I suppose that the root of my avoidance has been the joy we have all been experiencing with our friend's wedding. Eileen and Dave are the salt of the earth. They are the kind of friends you read about in novels, see in movies, are forever captured in epic tales. Yet they are not fictional or historical characters stuck in the pages of dusty books or film reels; they are very much alive and they are own precious friends. We have been humbled by the magnitude of their love for us...but on the same token, their love for each other and their wedding preparations has caused great longing in my own heart. My weak mind easily slips into scenarios that I may never experience with Nina...like shopping for her wedding dress, seeing her find deep and profound love.
Consequently, I find myself here....avoiding. I don't like avoiding! Avoidance just prolongs some pending doom, making the entire experience worse. I just don't know how to get unstuck!!
Ever since Friday October 1st, I have been avoiding writing in this blog....talking to people....owning my emotions. Nina is doing well so one would think I would be doing well. In many ways I am doing well. I am so thankful for her new found energy, sassiness, and happiness. As I've noted before, it is as if we have returned to some semblance of normalcy...but it is all a mirage.
I suppose that the root of my avoidance has been the joy we have all been experiencing with our friend's wedding. Eileen and Dave are the salt of the earth. They are the kind of friends you read about in novels, see in movies, are forever captured in epic tales. Yet they are not fictional or historical characters stuck in the pages of dusty books or film reels; they are very much alive and they are own precious friends. We have been humbled by the magnitude of their love for us...but on the same token, their love for each other and their wedding preparations has caused great longing in my own heart. My weak mind easily slips into scenarios that I may never experience with Nina...like shopping for her wedding dress, seeing her find deep and profound love.
Consequently, I find myself here....avoiding. I don't like avoiding! Avoidance just prolongs some pending doom, making the entire experience worse. I just don't know how to get unstuck!!
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