Friday, September 13, 2013
If you've been reading here long you know by now about the amazing group of dedicated people in our little community who actively make change in lives by believing in and being the good. They are The Canton chapter of The Foundation for Community Betterment. Twice they have adopted our family as recipients for their annual fundraiser Rocktoberfest. Three years ago it was heading into Danica's decompression and fusion and last year it was for me and the extreme financial burden my surgeries and health concerns had added to our world.
In just two weeks, On Saturday, September 28th, we will be celebrating the 6th annual Rocktoberfest event being held at Hoover Park. It's not too late to plan to attend. You can buy tickets here and get all the details. If for any reason you cannot attend but want to donate to the deserving recipients for this year you can also do so on the site. The money you donate is tax deductible and goes directly to help with these causes.
One of the three recipients is a new friend of mine, Halle Land. Halle suffers from Ehlers-Danlos Syndrome just like Danica and I do. We did not know one another until recently, and I had no idea she was being nominated for help from Betterment while our friendship was growing. I had heard from a friend about a year ago about a young woman who spoke at an event at Malone about the grief of suffering a chronic and "invisible" illness. She was shocked to hear her talk about EDS and even more intrigued to hear her mention a neurosurgeon in Maryland who had done a lower spinal surgery on her. The very next day I was at a birthday party and met a woman who also knew Halle. She suggested we try to connect. Over the next week or so we found one another on facebook and wrote a little back and forth. It wasn't until Halle was headed for her upper spinal surgery with dear Dr. H earlier this year that I knew I had to meet her face to face. I took one of my dearest Kelly Rae Roberts angels given to me during Danica's surgery and made a care package around it and drove it over to her house.
In a moment our lives and hearts were entwined by so many things almost no one else in the world could understand. Although we face our own unique comorbid conditions related to our EDS and different surgical needs and treatment our daily lives are very much the same as far as pain and how we relate to God, ourselves, those we love and the outside world because of this suffering. Knowing her, getting to know her best friend, Kelsey, who lives with Halle and her husband and helps with her care and later meeting another dear EDS friend from Canton but now living far away, Sarrah, has been such gift. And there is another thing too. Halle's mom is the stranger who took me to the airport that morning I had to fly to Maryland by myself. In the dark this woman I had never met showed up in my driveway to take me. She had a bag packed and was ready to even buy a ticket on the spot and go with me. Who does that? She knows all too well what this life is like. She has seen her daughter walk, stumble and crawl through trips like the one I was taking. Everything in her heart told her not to get involved. She had too much in her own life to deal with. Still, she showed up.
I found out on that trip I needed my hardware removed from my skull base and neck. I came home Friday to have a major abdominal and pelvic surgery at Cleveland Clinic on Monday. Four weeks later I was back in Maryland for my hardware removal. Can you guess who the woman was that came so Dan could go back to Ohio to work? I wrote about her a few posts back. She became the good. Just like that. Days off from her regular life. Her own physical challenges of driving that far. Her own gas money and miles on her van. Her uncertainty about what my condition would be like or how staying in a hotel room with someone who was so sick and really a stranger would affect her. She just followed her heart and became this gift of person to me and to my family.
This is what Betterment is about. Yes, we raise money to meet monetary and physical needs of recipients. For Halle and her husband Mike the money raised will help move the laundry facilities upstairs so Halle will be able to do laundry without being completely dependent on Kelsey and Mike to do this for her. Remember when I couldn't do laundry at all at my parent's house because of the stairs? I know first hand what a gift this is. They long to become adoptive parents of foster children someday. This will make an impact for a long time on Halle's ability to help care for her own home and family despite disability and pain.
Aside from all the physical and tangible good Betterment is mostly about what John Lennon said, getting by with a little help from your friends. The above picture is Kelsey, Halle, Sarrah and I on my couch in zebra jammies. Those girls showed up on my doorstep on a night when I was suffering and so discouraged with my recovery. (In case you don't know the zebra is the mascot for Ehlers-Danlos patients.) Both Halle and Sarrah were headed with Kelsey as their guide back to Maryland that week for scans and visits with Dr. H. Sitting there together felt like we were four strong instead of one weak and broken. This is what Betterment is doing not just in this big event but every day by living out reminders of how we must continue to care for each other in kindness. None of us should be alone. We aren't alone.
Dan, Delaney, Danica and I have only survived because of the grace of God and the love shown from near and far . . . over and over again. As I face this jugular compression issue and my desire to seek healing outside of traditional medicine I know I will be back here on my knees praying to God and asking you humbly to help us financially. This used to be one of the hardest parts of our long journey. It is now the most heart changing thing I can share. You entering in to seek my healing and the best life for me so I can serve is a miracle. I never knew people could care this much or love this much or be this faithful for this long.
PLEASE take a moment to get to know Halle on her blog. Consider what you might do to contribute to Rocktoberfest or if you could attend. Perhaps you have felt called to be involved in some way out in our community. I encourage you to consider attending one of Betterment's meetings and finding out the other great things they are accomplishing in our town. We get by with a little help from our friends. Be one of the friends. You never know how quickly your life could change and you might need the very same love.
Posted by Monica Kaye at 12:13 PM
Tuesday, September 10, 2013
This picture represents Danica's completely autonomous answer to a question asked for a homework assignment for Kindergarten. If she could fix anything at all in the whole world she would choose my neck. I love so many things about the picture she drew, but I think the most telling is she is seeing me smiling more since my latest surgery. My eyes are happier. She sees me healing. This shows her hope for me, and it gives me hope.
Dan and I have talked about how the past two months my two newest major surgeries have affected so many parts of our lives . . . AGAIN. One of the good things shining through is the kids are alright. During new crises we have family meetings to discuss how one another are feeling. Both girls express genuine concern for my well being but for the most part all this traveling and leaving and hospital and doctor and surgery stuff is just part of their normal. For over six years now Delaney has been dealing with it. She knows if I leave for the emergency room I might end up admitted and not come home. She knows I probably can't attend most of her school events. She laughs when I've taken my night time pills and then comes in to talk to me. I kept asking her about soccer the other night when she plays volleyball. They both know there are periods I need to be left alone with my door shut because the pain is so bad I cannot be kind. It takes everything in me to suffer. They know this is not their "real mom" but a person I so desperately don't want to be. I can hear Delaney's answer when I apologize for being short tempered, "It's okay, mom. I get it." Danica especially knows when I am needing someone to softly snuggle next to me and remind me I still count. She lets me know in no uncertain terms I am still her world, and I matter. She sticks up for me and fights for me in a way Delaney and Dan don't understand because neither of them have hurt this badly for this long.
As a mom who is rarely out in public with your children it's hard not to wonder what they are like in the real world without you. What kind of people are they becoming? How do they represent what we try to teach and practice at home? God has brought some beautiful confirmation lately about their character and kindness. I received a handwritten note from someone at church telling me they met Delaney and what a personable and lovely young lady she was. (Wow. If you're impressed with someone's child do this thoughtful thing for their parents. It was such a blessing.) Delaney's school sends emails for behavior issues. The first one I got this year I felt a lump form in my throat. Delaney has never had even one tag turned. The email was actually about something good. She had finished a project not due until September 24th and presented it to the class. The message was this:
Delaney did a great job on her Bag-A-Ball player book report. She delivered her presentation confidently and selected original visual aids to tell Yogi Berra's story. I was impressed with the details she shared about his life. Very interesting story! I'm so glad Delaney presented her report early so that her classmates could learn from her excellent example! Way to go, Delaney!
And then yesterday I received another that made me even happier:
A friend and Delaney picked to study England for International Fair. When seeing some of their fellow classmates being disappointed about not being able to also pick England, both girls told the teacher that they would pick another country and allow their friends to study England instead. I am so proud of both girls and their Christ-like behavior. They put others wants above their own and were amazing examples of Christ's love.
I worry about my girls. I know the "last notice" from an attorney about another medical bill I got this week will most likely turn into a certified letter. I know we are still in many ways depending on the love of others to survive. The shame and guilt of not fully being able to give your children things hurts because of pride. Delaney and Danica are both smart and motivated. We don't have a penny saved for college. We have no 401K. We have no savings account. If something happened to me, and I didn't have my disability payment, we would lose our home . . . the home they ask at least once a week if we can stay in forever. We can't take them to the beach or throw a big birthday party or go to Playhouse Square for Lion King. In big and small ways we feel like we are letting them down. We ask them to deal with very adult things a lot of the time. We ask them to sacrifice childhood things all of the time in exchange for another surgery for mom or another trip to Maryland for mom's doctors or more medicine for mom. I am afraid of what Delaney's memoir might read like someday. Will she resent me? Will she blame me? Will she write about how differently she wanted all this to be?
I realized my dear girls really just want me to be okay. They say funny things reminding me how much they do care. On Sunday Danica asked me, "Mom, why do you have clothes on?" I laughed and explained I was doing better so I would probably be getting dressed every day now. Pants don't hurt my belly anymore, and I'm hoping to be going outside and doing things. She replied simply, "Ohhhhh, Cool!" Sunday night I felt up to driving with Dan and the girls to drop them off at a church function. Delaney commented on how I wasn't biting my cheeks. "I guess that means you're not in pain, right?" When I was in my worst pain I would always suck my cheeks in and bite them until they would bleed. It was a way for me to remind myself not to talk about how bad things were because no one wants to hear that broken record. It would also help me focus on something else besides the original hurt. "Yes, Laney, I'm really doing well today!" I could honestly reply. Just riding in the car with my family was a really big deal for all of us.
I thought about Danica's assignment above. I wondered what the other kids her age were thinking about fixing. I wondered what my answer would be. Honestly I would have probably focused on something other than my broken body. I would have asked God to fix our debt so we could start over. I am still so focused on the overwhelming task of managing day to day to survive. I wonder how much this stress keeps me from fully healing. I want my sick friends to be fixed. I want their pain to be taken away and their impossible knots untangled. I want to fix so many things. But would I have been so bold to ask for a real repair of my neck? I realize how little I ask God to heal me.
I found out Friday night on a phone call with my neurosurgeon that my pressure incidents, the last big painful health hurdle I am facing that has been especially affecting my eye sight, is due to right sided jugular compression. This is most likely from an extrinsic source. I will have to travel back to Maryland soon to have a venogram and talk about possible treatment options. As weak as I am I need this to happen in 2013 because of deductibles. Still, we have no money to travel. We have really no physical or mental or spiritual strength to address what is a very new discovery of sorts in our community. There is no real protocol for treatment. As fall and winter close in my days will get worse. I know this. With all the amazing relief I have from the last two surgeries I am terrified to end up with my head back under the covers waiting for my head to explode or to go blind. So, yes, I would ask God to fix this. Please, will you ask Him too?
I'm blessed beyond measure because of the love from all of you. Thank you for feeding us and visiting and praying. So much real change is happening. I feel better than I have in years. Truly, I do. I am continuing with my treatment for PANDAS. I know this has made a huge difference in my health and mental well being in addition to removing all the endo and removing the hardware and bone spur in my neck. I feel stronger every day. I believe my adrenals are stable and my POTS is back to a manageable place. Now I need to control the ever changing pressure in my spinal cord and brain and find a way to keep proper blood flowing no matter what position my head or neck is in. Please pray the doctors working on this treatment would have wisdom and move in a time that might make it even possible for me to get real help.
I'm so grateful to all of you who are helping Dan and I raise our girls. They are thriving in the midst of very difficult things because they are living in the shelter of the love and kindness of all of you. How could they not want to show compassion and empathy and reach out doing their very best? All the rest really falls away doesn't it? When you come to the place in a long journey when asking "Why?" seems silly because it doesn't matter. When you feel so sure God is doing big things with hearts you can truly say with Job, "Though you slay me, I will praise You." God, just take these girls and use their lives to fix things that matter most. Help me to trust You with the rest.
(It's no secret I have lived in the book of Job for years now. This song by Shane and Shane ending with John Piper has been on repeat over here. This is where I am. When Dr. H told me I would need more intervention for my jugular I didn't feel even one heart beat increase. He is allowing this, not causing it. I will praise Him. My flesh and my heart fail, but my eyes are open and I can SEE. Do not lose heart. Our hope remains!)
Posted by Monica Kaye at 10:49 AM