My thoughts and feelings. My life. It has changed. Dramatically.
I haven't written in so long. Years. Haven't gone back to read what I wrote before. Don't know if I will. Well, I will eventually. I may delete. I may not.
I wish life were that simple. You could just go back and change, delete even, the things you wish never happened. The things that hurt so incredibly bad, especially when the pain just won't.go.away.
A lot has changed since the last time I opened this little blog. My husband and I now live in the DC Metro area. We will have four candles on our anniversary cake this year--that is, if we celebrate with a cake. We purchased our first home in 2012 and two weeks later, we welcomed our baby girl into the world.
She is the absolute coolest person I have ever met. She's amazing. No, seriously.
Parenthood has changed everything. Everything. Our marriage, our outlook on life, our purpose.
Our girl has a genetic disease. She got a soft diagnosis at 2 months of age and we got the hard diagnosis at 9 months. That word--hard--doesn't even come close. The diagnosis should be said as
Neurofibromatosis. [Did you read it without pausing? No worries, we had to practice it a few times ourselves.] Type 1. It's more common than you'd think. 1 in every 3,000 or 4,000 births. Our girl is that 1. One. Uno. Un. By herself. Not like the rest. She will never "outgrow it" as some have suggested. Others try to say "it will be okay", but it isn't. It won't. Our girl is a statistic.
I have really struggled with this whole thing. I cry. A lot. More than a lot. I sob. The "ugly, can't catch my breath, wanna scream at God" sob. I cry for her. For the many things she has already endured and for the many, many more to come.
Last week, she had her first MRI. Most people go their entire life without one. She had her first at 20 months. I say first because there will be more. "Only yearly if everything is looking good." It's not.
It was traumatic for all of us. She locked eyes with me through her tears and screamed, "Mommy!"-- I just kept telling her I love her and we helped the nurses hold her down until the mask did it's job. It was the closest thing I could imagine to holding her as if she died in my arms. It was awful for her. She just didn't understand. [They give the kids gas to put them to sleep (so they lay still) and then they start the line for the anesthesia and dye.]
The MRI was on Tuesday. I got the call on Friday afternoon. We've only told our parents. I can't bring myself to talk to people. To answer questions. To live that call again. I could hear the words, but the screaming in my head would.not.stop. There is bad news and cause for concern news.
There is a glioma on her optic nerve. A tumor.
My daughter has a brain tumor.
There are also 3-4 spots on her frontal lobe.
We don't have much else.
Her routine, twice yearly appointment is today. In a few hours. I can't sleep. It just so happens that this all fell into a week's time. Now we know why.
We will ask questions. Hopefully, we will get some answers. Maybe, we will get a plan? We'll bring our list of observations/concerns since the last "team appointment." The team appointment is draining, but helpful. We will meet with all of her doctors (each department has a Pediatric, NF doctor), one at a time. Then, there will be x-rays taken and possibly, blood drawn. Oh, and anything else that can be crammed into the day that they need for her medical record.
I came back here, to my blog, to write. Just get it out. Type through the tears. Work through the emotions. Not get chastised if I digress. Won't get interrupted with questions. Not hear the typical "feel better" phrases.
We stay hopeful. We remain diligent. Our girl deserves it. All these babies/children/people do.
I think I'll be back, soon even.
Perfectly numb,
Danielle
