Tuesday, July 9, 2013
You are loved (A Dan Post)
"What once seemed such a curse has become a blessing. All the agony that threatened to destroy my life now seems like the fertile ground for greater trust, stronger hope, and deeper love." Henri M. Nouwen
I bought a nice Kenmore vacuum when Delaney was two years of age. I loved the canister style as it did a nice job handling the dirty interior of vehicles with special little attachments as well as bigger general duties around the house. Even before Monica was diagnosed with EDS she had so much pain, especially in her shoulders. The "chore" of floors easily became mine. I find pleasure in the ritual, the whirring sound of the motor and the results. The old "sweeper" devoured everything from dust bunnies to little bits of crayons. It was a faithful work horse until I decided to vacuum out water from our refrigerator's drip pan when it needed repairs. A Shop-Vac it was not. The years and years of service was evident even though we tried to cover up most of the scars with Disney Princess stickers, duct tape and the girl's names spelled out in stickers. I was so fond of this old broken down girl. Even after it quit on me I kept it sitting in the garage, because I couldn't quite seem to let go.
Our budget is always almost impossible. Monica has had so many continuing health issues this year. Her out of pocket expenses, prescriptions and copays are never ending. She juggles all this. I know the stress adds to her already overloaded mind and body. I admire how dedicated she is to trying to keep us afloat. When anything special comes up like needing a vacuum the money is just not there. We don't have credit cards. We live on a very fixed income that is quite simply not enough sometimes. We had been cleaning our floors with a dust buster type vacuum and on our hands and knees the past few weeks. The trip Monica had to take to Maryland last week was another road block to saving enough to buy a new vacuum.
Less than a week after I tossed the Kenmore in the trash I took the girls out to look at new vacuums and compare. I'm not sure if Monica had mentioned offhandedly to anyone about my silly vacuum biting the dust, but I am sure people would have noticed the girls and I testing out vacuums at Best Buy, Lowes and Sears this past Saturday. Nothing in our limited $100 range even came close to my old Kenmore. Later that night a box showed up on our porch with sticker letters that read, "YOU ARE LOVED." As most know, the Dyson vacuums are pieces of art, well engineered, very highly rated, and expensive. I especially was drawn to the Dyson "Ball" vacuum, but I wouldn't even let Delaney try it out because it was way out of our reach. I was shocked to find in the "care package" a Dyson Ball vacuum for me. Someone gave it to us as a "random" act of kindness showing support for Monica and our family as we find ourselves yet again dealing with medical emergencies and the financial part we simply cannot bear alone. I was blown away. No matter how much love is given to us I still cannot believe the hearts of people around us and the love they give.
Monica just got back home from the abdominal and pelvic surgery she had Monday at Cleveland Clinic She has five small incisions on her abdomen that are very uncomfortable, but the "knifing pain" in her belly is gone. Her post-surgery demeanor reminded me of her Henderson surgery in Maryland where she awoke stating how great she was feeling. "No more black floaties" was one of her first statements. If you know Monica, you know she doesn't go to the hospital unless the pain is unbearable, and she lives at a five on a scale from one to ten. She found out last week in Maryland the pain she is having in her neck is her fusion hardware, and it needs to be removed. This is scheduled for just a month away on Monday, August 12th. Her fusion is beautiful which makes the hardware unnecessary. You can actually feel it poking and rubbing on the outside of her neck. We have no idea how we will afford the $3000 upfront deposit for this surgery (less than the $5,000 for her last surgery because it is not going into the brain but merely opening up her neck and head. I will have to take time off. There is gas. We will have to borrow Monica's parent's car since neither of ours are safe for distances. There are hotel stays and food. There are more prescriptions. It seems impossible. But we have been here before. We have always walked out of our tent and found manna. Even before Monica's trip last week God supplied in the nick of time things she needed to actually go. She made plans all along believing the provision would come. We move forward in hope and faith to this next challenge.
I am very hopeful Monica will be feeling much better after she heals from her surgery this week and gets the hardware out next month. My wish for her would be that she could walk around our beautiful neighborhood this fall while the kids ride their bikes. My wife looks great with short hair and wearing athletic clothes. She misses her freedom to walk or run or drive. I know she feels much like a prisoner in the shell she lives with day after day. As her husband I feel helpless. Monica is also beginning six months of treatment for a hidden immunologic issue which could explain and possibly heal her body of constant infections, flares of depression and manic behavior. She could feel so much better. Tonight she was on the phone fighting to get insurance to cover the injections, but they won't. We could try to cash pay, but realistically we can't. I know she paid a pharmacy in Georgetown $65 today for a scrip they compound for her neurosurgeon. It keeps adding up. I am quiet much of the time about how all this affects me. The bottom line is I just want this woman I desperately love to be happy and healthy. I want her to be able to focus on something else than this struggle to survive.
When I write on this blog, which isn't very often, I always try to come up with an analogy, so I'll use the old Kenmore and the new Dyson to represent the old and new Monica I'm hopeful for. As aforementioned, the old Kenmore never gave up after all the abuse it took much like Monica and all the pain and suffering her body has been through over the years. She has moments of despair, but I have never met anyone who fights as hard as she does to do all she can to live and love. We are blessed beyond measure with our new Dyson vacuum and the love it represents. We are stepping out in faith that Monica can get back to a level of pain that does not restrict her life so greatly. This may be a silly analogy, comparing a "sweeper" to my wife, but when I look at her tonight with her swollen belly covered in bandages, her lap full of papers and scrips, while she is talking on the phone making new appointments, getting new treatment arranged and already planning the details of this next tough surgery on her neck I couldn't be more proud or more in love. Everything that continues to threaten our lives is really fertile ground God's faithfulness. We live in this hope moment by moment.
Thank you from the bottom of my heart to whoever thought of a gift so special. I treasure it!
Posted by Monica Kaye at 9:37 PM