Wednesday, February 3, 2010

And so it begins...

I am angry at the Universe. Angry at God. Angry at my husband, at the doctors, at myself, and at anyone around me who doesn't realize the sky is falling. This isn't about me, my anger is self centered and pointless. Right now I need to be the facade that shapes JT's perspective. The rock that teaches him resiliency. The lie that tells him everything is okay.

My son JT is the 5th person in my family to be born with NF2, and I had convinced myself that with technology advancing as rapidly as it has there would be some sort of treatment available before JT even grew a tumor. Everyone else in my family started growing tumors around their pre-teens. So why was my baby diagnosed with a brain tumor yesterday?

In November Tish and I both noticed JT's right eye was bulging. (If you are not up to date on why this is a problem you can catch up here) I fought to get him in immediately at Dr. Borchert's, and he was kind enough to squeeze us in after the rest of his appointments yesterday after 5. I sat quietly, assuming he would turn and tell me JT is fine and it was a case of over bearing motherhood. Instead he turned with a concerned look and asked when JT was going to have MRI's. He goes in the 25th of this month and the doctor said that is really good because.... JT has a tumor behind his eye in his brain. The doctor wrote, "[The tumor behind his right eye] swells when tired because blood vessels in the tumor drain slowly after lying down." He needs an MRI to find out the size and type of tumor. Tumors are named for the type of cell they originate from, and there are several different types of cells behind the eye. The doctor assured me that NF2 tumors behind the eye are generally benign and slow growing. I have been assured by doctors one too many times in my life to swallow his placations.

My concern is that there was a marked change in appearance in JT's eye from only November to New Year's Eve when Tish saw him and was immediately concerned. She hadn't seen him and the change was more apparent to her than to me, being that I see him every day. Until the 25th I have no real answers, and even then will most likely be advised to simply "watch and wait."

I am flooded with prayer promises and I cannot help but fleetingly think they are nothing but words to keep our empathy busy. How many prayers does it take to get an answer? Yet as I form the thought I pray for forgiveness for that weakness of faith. To this God whispers a hug, the God I know only loves us more when we are angry.

Now is not the time for childish suppositions of invincibility, now is the time for reality. Obviously JT has a complicated case of NF2. Developing tumors pre-pubescently generally means a person has a severe case, what does that mean for JT today? Absolutely nothing. What does it mean for him in a year? I cannot answer that. The worst part of NF2 is the idea that you are always broken but never really sick. He is not in pain nor is he going to have treatment any time soon. When faced with a challenge as a Mother I want to meet it head on, and instead I can do nothing but watch as my child grows more tumors and lives their consequences. I look at JT and I see his potential. He just scored in the 84th percentile state wide on the standard testings, he taught himself to spin like Michael Jackson on the ice in an hour his first time skating, he is ridiculously handsome and so amazingly special. I have a deep rooted and hopefully irrational fear that the Universe wants to claim him for itself, too bright a star to walk amongst us.

So I pray, and I feel that I am doing something, anything, rather than absolutely nothing.


Sawatzky family said...

Follow your blog but rarely comment..however I just wanted to let you know that I am praying for you and your son and your entire family, and I know God hears me and you, and your son, and He is mercy, and goodness and healing and love, and He is bigger than this battle of disease. And I encourage to read all you can on the power of our confessions (Bill Winston, Joyce Meyer sites) and the REAL power of praying out God's Word about healing over you and your son. I will be confessing healing and health for you both. I can share some wonderful sites and passages with you :)
His will is for you and your son to be healed. It has always been and will always be His will for you. He cherishs you above all others! You are the very best part of His day! You are always on His mind and heart!

Sheila said...

I LOVE you so much girl!! You know whatever you need, day or night! I will be here for you, Paul, my handsome nephew and my beautiful niece!! I will of course be praying for you all!! Sending lots of love your way girl!!

Michael John said...

I can't help but to draw tears. I have the utmost admiration for your strength. I thank God JT has you in his life. I am so greatful and honored to be your cousin.

Tammy Benson-O'Brien said...

I feel for you - I'm in the same position with my little 6yr old - just found out he now has an acoustic neuroma & his 2 meningiomas (one behind his right eye) have grown siginificantly in the past 6 months. I feel angry, scared & sad - my sweet little guy is beautiful & has so much potential - I don't want this to be what defines his life. Of coures, I can btt my head against the wall forever & only find solace in knowing that God is in charge and he knows best. Take Care!

Founder of Jog for Joubert Syndrome said...

i wanted to let you know your blog really inspires me, i awarded you with the sunshine blog award on my blog ( sorry you are going through such a rough time, will be praying for you.

Rebecca (Beck) said...

Can I see if we can post this on our NF2 blog? I think it is a good thing for visitors to read so they get an understanding of NF2 and also what parents go through when they have a child that is diagnosed. Your issues are things that I have not and do not have to deal with so people get more of a one sided perspective. I want to show all aspects of how this disorder can be disruptive in the lives of a variety of patients.

I hope you and JT are doing well! I met 3 more people at the NIH this visit and hope you guys get to connect with others too! Love ya! ;-)

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