Monica asked why I haven't written a blog entry for a long while. I am a very private person and have a "gift" of internalizing almost everything in life. I know how much this place of sharing means to Monica and has meant to so many of you, but I have trouble even reading here most days much less sharing my response to what is happening to us.
Our family is heading into another storm soon. If you haven't heard, Monica found out she has a pectus excavatum. This bone malformation of her chest wall coupled with her EDS is causing her heart and lungs to be crushed. She is seeing a surgeon in Cincinnati on Saturday morning. This time Monica is going for the trifecta surgery award for the 2011-2012 season. If you are keeping track at home she already has brain surgery and cervical fusion in November, 2011 and spinal surgery in March, 2012 on her "achievements" list for the year. Please do not forget all the prior endometriosis surgeries culminating in her hysterectomy in August 2010 and her bowel surgery in March, 2011. Still on the bubble, in my opinion, is hip replacement surgery. Last night I thought I heard Monica opening a bottle of champagne only to understand seconds later that it was her hip joint popping. Yes, it was that loud. No one as wise as I am has been around Monica for as long as I have so making light of the dire situation we face is the only coping mechanism left. Imagine your loved one losing consciousness in front of your eyes not to mention the same "passing out" in front of your children. Also imagine your significant other mentioning almost every hour her pain, headache, nausea, insomnia, lack of appetite, mold, the urgent need to move out of a basement "home," financial distress and, last but not least, talking about the end of her life. (This subject is not used as manipulation of any kind but because she is really that sick and scared.) Monica wrote as a recent Facebook status the simple fact no one could make this stuff up in a million years. Still, here we are surviving through it somehow. Blog readers seem to be in a state of shock managing "Praying" or "Thinking of you" as caring comments to these dark blog posts. I too am at a total lost of words. I have no direction. No answers. I am chained to the front seat of a roller coaster car. The car will not stop, and I already puked during the first ride. Sure, there's that brief moment in the beginning where you are at the highest point, it is all level, and you can enjoy the view after making it through one of the worst slow climbs, but that only lasts a few seconds until all the craziness begins again. This is how I feel everyday and those "first few seconds" are from the time I wake up until the time I leave for work while everyone else is still sleeping. This is the only time I can imagine my healthy family is lying in their comfortable beds and anticipating they will have a good day with laughter and love and no pain.
We've always known our road with Chiari would continue in some form for Danica, and that Monica would probably have some progressive health issues. I just want a break for us all, and I think the timeframe is a calendar year. I want a year free of the profanity in my head, the rage, mind blowing stress, dizzying confusion, broken apathy and yes, BLOG POSTS. I want to brag on Facebook about all the fun things we as a family have done the past 12 months. I want to eat three healthy meals a day and sleep in a bedroom with windows snuggling my wife without hurting her. I want to be the man of the house again. I want to get my hair cut when I want to and not have to ask Monica if we can afford it. I want to watch my wife enjoying her many passions in life. I want to catch my breath. Unfortunately hard life is our reality, and there is no immediate escape. There are no answers. I fall asleep at night walking through "miracle" scenarios hoping if I visualize a home, restored health, Monica's joy on a daily basis, it will in fact appear and then I will be able to really rest.
Don't let the "DNR" tattoo over my heart fool you. I'm a fighter. A survivor. I can take all the sympathy, the charity, the questions, the pain. Every time I walk into a weight room I have pain somewhere (a sign of my age). Pain during the workout. Pain afterward. Rest is critical when weight training. It is almost as important as proper diet. Monica mentioned through tears how badly she needed a vacation the other day. I believe she was referring to one of those 2-3 week vacations almost no one gets to take, most likely at the beach where one can truly rest. The beach holds a special place in our minds as it was the last real peaceful vacation we had as a family. Pictures and video from OBX show a baby Danica barely able to walk with her head so crooked and her face grimaced in pain. Monica looks healthy in those photos, really healthy, and although she was fighting so hard to get a diagnosis for Danica, I know she was happy then and hopeful. Delaney was in her glory searching for shells and taking an off road adventure to see wild horses. Monica and I had a date at her favorite restaurant in Duck. We stood together watching the sun set over the sound so oblivious to the tragedy just ahead. It is the images of 20 month old Danica I cannot bare to watch. They need to be replaced with Danica, Delaney and Monica splashing in the waves and building sand castles. We do need a vacation. I believe it would be almost like a reset button for the last three years.
I think everyone should choose a Bible passage or two as life verses. One of mine is II Corinthians 12:10, "For Christ’s sake I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
I don't actually have a "DNR" tattoo. I do think the above verse in what is called a "holy" font would be my first choice to finally get inked. It would be emblazed on my inner arm bicep area. The other arm would have "endure" in a simple, mechanical font. I have big strong arms and analogous to a stream cutting deep into a mountain, these arms have formed over a long period of time through dedication and perseverance. My arms are getting old and will eventually tire, but they'll always strive to support my family by the grace of my God who promises to take my weakness and make it into strength when I trust Him.
(Thank you to everyone who has been brave enough to ride this far with us. Monica is better with thank you notes and communication, but I am humbled and grateful.)
(Thank you to everyone who has been brave enough to ride this far with us. Monica is better with thank you notes and communication, but I am humbled and grateful.)
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