Tuesday, September 10, 2013

What would you fix?

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!)

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