Day 185

Friday February 18, 2011

Teddy had the day off from school and slept in. I can see the growing sorrow in his eyes. On a daily basis he asks, "Are things bad?" I keep hoping that I wake up from this nightmare to find them both sleeping together on the bottom bunk. So much has changed since August 19th. Six months does not really sound like that long but my life has been turned upside down and tossed around so many times I've lost count. All I can do is hold onto my anchor and pray for strength.

Praying. I am so thankful thousands are praying for us. Sometimes I feel like I don't even know how to pray any more. Since Teddy and Nina were born, I have prayed a very specific prayer every night for them. I would always thank God for the gifts that they are and then ask that He send a battalion of angels to surround them and protect them from anyone and anything that would hurt them emotionally, psychologically, physically, that He would guard them from illness and help me to be the best mom possible. I have literally prayed this since the moment I found out that I was pregnant with Teddy.

I am grieved beyond all grief that God did not grant me my prayers. I have asked for so little in my life. I have endured misery upon misery myself, never letting it destroy but continuously picking up my cross and stepping forward, with a smile no less because that is what a believer does. Cognitively, I understand that God did not cause this, nor that this is something we brought upon ourselves. But emotionally, I feel so abandoned!!!!!! Until recently, God was the only being with full disclosure of my pain and suffering and yet all that I have already endured is not enough??????? Now I must lose my precious daughter!!!!!!! How much pain and suffering is enough?????? The worst part of all is that now Teddy must carry this pain and suffering. I am willing to carry all the pain and suffering that is dished out at me but to see my precious son be wounded like this is unbearable!!!!

I am so heartbroken!!! I know that we don't deserve our miracle more than any other family. We are all equal in God's eyes. But this is fucking bullshit!!!!!! Nina's illness and suffering if cruelty beyond cruelty. I write and try to document how I feel and what we experience and although I am able to capture an essence of our struggle, it remains that, an essence. Even those who spend time with us, have lived with us during this journey, aren't privy to the magnitude of the pain and sorrow that pounds through our veins with each breath we take. There are no words to describe that pain and sorrow. Only people who have gone through this kind of hell can truly understand. Hell it is!!!!!!!!!!

And even though I am shaken to my core, I have not lost faith! I am heartbroken and strained with God. This the truth and will probably remain my truth for a very long time!!!! I feel abandoned but I refuse to stop believing. Instead of losing myself to the heartbreak and strain I focus on the blessings I do have. I submit to that. I do not lose faith because I recognize that the mighty strength I have was given to me by God. God created me this way and in spite of me feeling destroyed by God's current plan I understand that I have also been built to stand any storm. God is the only one that can see time, beginning to end. I take comfort in knowing there is a purpose, one that I will not understand until I see Him face to face, but there is a purpose, just like there was a purpose in God giving me the spirit of a lion. People ask how I can keep doing what I do, how I can sob one second and smile the next. There is no rational explanation. I don't understand it other than this is how God made me and He made me this way for THIS purpose. For that I am thankful.....but I still feel abandoned!!!! I am still pissed off!!!! I am still heartbroken!!! God knows that even without me muttering a word. It is written in every drop of my blood. But God is God and He can handle me, in any form I come!!!!!!!!!!!!!

Speaking of blessings, Eileen's company is magnificent. Even when we are engulfed in darkness, together we can always find a way to breathe and laugh. Together we have always encouraged each other through our own struggles and as such have built an incredible bond. One gift from this journey is that I have discovered how truly hilarious Eileen can be. We have always loved laughing together. I LOVE laughter, it is one of life's greatest treasures! But it wasn't until now that I genuinely discovered my friend's irreverent and sarcastic sense of humor! The girl is a hoot!!!

Friday also marked the beginning of Nina's birthday weekend. Originally I had thought this was going to be an easy fun filled weekend. I know it will still be joyous but now it has turned into a sorrowful joy (what an oxymoron!!!) I know it was not coincidence that everyone we most love was planning on spending this weekend with us before Nina took a turn for the worst! The awful irony of it all is that it was part of the plan, just not my plan!!!! So, I spent the morning preparing for the arrivals. We all did some last minute tidying up. Teddy was beyond excited that Niels and his cousins were coming! I was so grateful for the relief I saw in his eyes when he talked about them!!!! At least in the midst of this fucking horrifying turn of events, Teddy would have the company and joy of his best buddies. At least they would have each other to have fun with.

While Eileen and I cleaned, Nina wanted her daddy. Again, I was thankful that he had this time with her both for his sake but also for mine. As Todd and Nina hung out and ate a smorgie of food, Teddy went with Mario to Kmart to buy some nerf guns. In spite of my extreme focus on Nina's illness and needs I have never lost sight of planning for Teddy's care. I knew that he felt a heavy burden and that he would be all torn up, filled with mixed emotions about his sister's birthday party. He needed a little something and nerf battles always help boys (My liberal friends hate me right now! Too bad!!!!). I gave the guys specific instructions. Buy each of the boys a cool nerf gun and don't spend more than $25 on each gun. I don't know why I didn't see this coming. I expected they'd buy some regular nerf guns, you know the small ones, but when they returned from the store I was greeted with massive Tommy guns that require batteries!!!!! Teddy was stoked so that was all that mattered. To make things even funnier, Mario bought himself the daddy of all Nerf guns!!! The thing was a monstrosity and Teddy was totally salivating over it but it cost more than I had allowed. He whispered to me, "I'm gonna save my allowance to get one of those!" I smiled and kissed his warm cheek.

Soon there after, the Marbans arrived. Teddy retreated to his lair to plan his attacks, Mario took care of Cristina, and we sat down with the Marbans to talk about Nina. It had been a week since Linda had last seen her and about a month since Eduardo had last seen her in person. Although the Marbans are world famous physicians and researchers they are first and foremost my friends so I was able to see the look of deep sadness in their eyes. They didn't need to say a word.

Nina had a good day today. She ate and swallowed decently. We just needed to watch her very closely. She slept in almost until the Marbans arrived and was responsive. She smiled and laughed at our silliness and got annoyed and angry if we did something that pissed her off. Most of all, she was eager for Sosie and Adelae to arrive. "When are the cousins coming?" she would ask, barely audible. The Marbans got to see how much she struggled with her speech first hand and I had to remind them that today was a good day for her communication. In fact, today was a good day for Nina's overall functioning in comparison to the rest of the week. At one point when I said that, I saw Linda flinch! I could imagine what she was thinking, This was a good day?? But true to form, Linda said well great....it's a good day! No wonder we are such amazing friends!!!

Not only had the Marbans come to spend the day with us, they brought Las Fuentes!!!! Over the best food in the world, the Marbans asked what I needed from them and I explained that I needed them to help me coordinate with our new nursing team and Dr. Greenfield a medical plan for Nina. This week had been a nightmare because I had no plan. All I had was my daughter going through hellish pain and misery. We did not want Nina to be in misery!!!! As such, I needed to have a concrete plan about which medications we were going to use and how and when we would take Nina to the hospital. There is nothing like planning the end of your child's life over Mexican food!!!!!!!! Actually, it probably couldn't have been better. I love Mexican food. It is comforting!!!! And eating comforting yummy food is incompatible with panic and distress over the most heinous of topics! Still......it is grim and sick!!!!!

Eduardo and Linda understood my needs. I called the supervisor of the new nursing team and Dr. Greenfield to make appointments that Eduardo could attend. At the beginning of this nightmare I had asked him to advise me as if Nina were his own precious daughter. Nina and Cristina are the exact same age so this makes it very, very real for Eduardo and Linda. Every step of the way, the Marbans have done exactly that!!!

Right after lunch, the Dawsons arrived!!! Teddy was elated to see his buddy Niels and they ran off. Yvonne just hugged me, trying to pour every ounce of strength into me! After a few hours of playing, they took Teddy and the boys to Zodo's for bowling and food. I was thankful, so thankful, to have someone I could trust to take care of Teddy. Yvonne had loved Teddy from the very moment of his birth. It was fitting she help me now!!!

We met with Susan, the supervising nurse and clarified what their role would. Starting Monday they would come daily for a couple of hours. Then we went and met Dr. Greenfield at the Starbucks in Vons. Todd came along as well. I was glad he did because he needed to participate, for his own sake. With Dr. Greenfield we discussed exactly (as much as these matters can be exactly planned) what the plan of action should be, which medications should be used, when medications should be administered and how we would decide to enter the palliative sedation phase. I made it clear that if Nina had to die from this awful monster we wanted her to stay at home, in the comfort of her home, as long as possible, and that we did not want to transport her to the hospital until she was permanently unconscious. We did not want to give her anything more to fear!!!!! Dr. Greenfield is a gentle and loving man. He has children the same age and he understood clearly what we needed. As such, he and Eduardo agreed that before transporting Nina we would snow her so severely with medication that she would never know what was happening. Todd sat and quietly cried. I reached for his hand and tried to provide him with some comfort. But what comfort is there when you are sitting at a table discussing how to help your precious daughter die peacefully!!!!

I left our meeting feeling secure. I hadn't felt secure all week but now I knew we had a plan. I understood that this plan could and would probably change but its existence helped me feel more secure, grounded. Seeing your child miserable in pain is the worst thing any human can ever go through. If having a plan of action helps then why the hell not!!!

The best piece of information I got from the meeting was that we could use morphine patches to give Nina narcotics. Since swallowing was becoming an issue by the day I wanted to have something on hand instantly. I knew I could learn how to access her port and add medication through an IV but I also wanted something more, I just didn't know what. After Dr. Greenfield mentioned the patches, I signed a huge sigh of relief.

We went to Rite-Aide to see if we could pick up the patches but Dr. Greenfield needed his triplicate so we agreed to get them from him tomorrow. I hugged Dr. Greenfield and thanked him for his support! Every one we have met has been such a blessing!

When we returned home, the company Life Solutions came and brought us a suction machine and oxygen tanks. They showed us how to use them. I listened but didn't think we would need to any time soon. Linda and Eileen cleared a corner to store them. I looked at them carry those things off and shook my head!! How could this be????? How can this be our life!!!!!!

Thankfully, my moments of sadness are short lived. It was dinner time and I had to focus because my sweet girl was hungry, "I'm starving mama!" Mario had taken Cristina to Chuck-E-Cheese, so when he returned the Marbans said goodnight. At that point, Mario asked if I had found his gun. Mysteriously his massive gun had disappeared :) When I had asked Teddy where it was he gave me a shocked (but guilty) look and said he couldn't believe I wouldn't trust him, that I was accusing him of taking Mario's gun!!! Mario and I looked around the condo and found his gun, all set up in the garage. My guilty son and his accomplice Niels had spent the afternoon building an arsenal in the garage. From the looks of things it was obvious they had planned to ambush Mario! We both laughed and Mario asked for a sheet of paper and pen. He then wrote the following note and left it on Teddy's bed:


A minute after Mario had finished his letter Joe and the kids arrived!!!!!! The kids were so happy to see Nina and gave us the biggest hugs!!! I grabbed my keys and Eileen and asked Todd to send us a Taco Bell order for the kids. We grabbed some grub and then picked up Teddy. The look of happiness on Teddy's face when he saw his cousins was priceless!! I reminded myself that above all, this was a birthday weekend!!!!

Holding hands with Sosie

Watching Pink Panther with Addie

Of course it had rained all day!!! All I hoped for was that it wouldn't rain on Sunday!!!!