February 2010 & Oprah

I meant to write a new update to bring in the new year last month but things seemed a bit hectic. Before filling you in with how we are let me tell you that I was beyond ready for this past year to come to an end and transition into a new one. Although I will always look back at 2009 as a year of tremendous growth for our family, I will never look back at it as a year of fond memories. Believe me, I am grateful for many things and every day, every moment, when I look at my daughters, especially Lena, I feel blessed that she is here. I know that there was the possibility she might not have been. Those aren't thoughts to dwell on but they are thoughts that deserve to be remembered. I have friends, and friends of friends, who have lost one their children over the past year. It's beyond my imagination how they manage to move forward and go on each day. They are truly amazing in their strength and resilience. So although I know each day was precious, I am happy that a new year has arrived and that one is gone. So long, farewell! Maybe it's just a sense of new hope and new beginnings. I want this year to be filled with love, joy and laughter. I want to hope and believe that each doctor visit brings us peace that the worst has passed. We aren't there yet. We seem to know this is more of a reprieve for a time rather than a conclusion but there is hope- always hope.

Most days we live with our "new normal" fairly well. There are still questions from the girls, still explanations about Lena's eye and her inability to open it on her own, still questions and discussions about her hair growing back and still questions about the numerous doctor visits that seem to always be on the horizon. But overall, we've adjusted, individually and collectively as a family. There was a day, not long ago, when I broke down and wondered how I had managed to go so long without these tears which had obviously been building up and preparing for a massive release. I occasionally watch Oprah shows that I've pre-recorded. I actually only watch about one for every 8 I delete so am not diehard watcher. However, there was one I recorded that had been sitting in my DVR waiting to be watched about Nate (Gosh, don't you love him!) and how he was going to work with the Billionair Matchmaker to set up a woman in her early 40s and help her figure out why she hadn't met "the one". Yes, I'm a hopeless romantic and enjoy these types of shows and do love me some Nate! So, I'm watching the show and this segment of the show ends with 40 minutes left for the show. Any Oprah watchers out there? Do you know what is about to happen?

So as this segment ends, Oprah introduces her next topic regarding how Nate is going to go help out a young boy, around 12 years old I think, write up a business plan to help with this cookie business he started. However, Nate realizes that the business plan isn't the 'real' topic. This young man lives with his parents and brother. However, he was actually born a twin and had another brother. You could tell by the story and pictures these two boys were close, loved and protected one another. One brother was diagnosed with a brain tumor when he was around 9. Okay, some of you can stop reading now if you want...

After being diagnosed, the boy had radiation. The tumor was not cancerous so they felt they had been successful in its removal. But no. The tumor regrew and this time it was malignant. Now, I didn't know a tumor could change from noncancerous to cancerous as it regrew. So now I am glued to the television although I know, I just KNOW KNOW KNOW, that I need to turn it off. I'm already crying and just have that feeling, in the pit of my stomach, that it's going to get so much worse. It did. I don't know what happened immediately after it was found out that the regrown tumor was malignant but only 3 months later, the boy passed away. So I lost it completely. I continued to watch the show and was having a complete crying meltdown.... tears, sniffling, red eyes.... When the show was over, I went into the bedroom where Britt was watching t.v. just crying, shaking, mumbling, "Did you know it could come back maignant? Did you know? Dd you know? What are we going to do????" I was obviously upset and terrified in a way I am not sure I had been even in the beginning when we were told Lena had a brain tumor. It was too much. My entire being was emotional without any rational thought at all. I wanted answers, I wanted reassurance, I wanted anything and anyone to tell me this would not happen to my baby.

Let me tell you, my heart is so filled with love for this family as well as hope for them. Although the journey is beyond difficult, you could tell that they are each finding their way to remember the joy and love of the son who died. The brother actually began the cookie business on a suggestion from his doctor to find something that mattered. He had fallen into a state of depression. When asked, he felt baking was something he enjoyed doing and something his brother would be proud of. What an amazing 12 year-old example of resilience! The other reason I love this family? Because they shared their story. They may not realize it but that night, hearing their story, watching their resilience, gave me strength. It might have seemed that it sapped me and knocked me down and that is true. It did. But each time you get knocked down and manage to pull yourself up, you come up stronger. As I said earlier, I don't want to forget , I don't want to dwell but I do want to always remember how precious each moment is. I want to remember how lucky I am that my daughter is still with me and that I am allowed to be loved by her and love her each day. She teaches me each and every day about the things that matter. Lena shows me what it really means to be resilient, strong and compassionate.

I was going to give a short medical update but as usual, what I thought I wanted to say and what I apparently needed to share were two different things. :)

So, to be brief, Lena is doing well. We recently had visits with her opthalmologist. She seems to be slowly losing her eyesight in her left eye but we're refocused on having her wear her glasses more often and patching up the other eye for at least 30 minutes-1 hour each day in hopes that we can strengthen the eye. A friend at work shared an article about some research being done with replacing nerves in this area of the brain so Britt and I think there is a possibility that maybe options will be available when she is older. Our job now is to help her not lose the eyesight and keep her healthy, physically and mentally, so if it does becomes an option, she will be ready to make that decision. Or if it doesn't, she remains the confident person she is right now.

In mid-April we will have our next rounds of MRIs, tests and doctor visits to analyze and discuss the tumor. I'll make sure to update then if not before. As always, thank you to those of you who keep Lena and our family in your thoughts and prayers. We love you. Hugs & Kisses... Holland