Letters to Mommy

This post is really for me… a visual reminder that will be here when I need it most. I want to read this over and over on those days when I just don’t know how much longer I can keep living in pain, for those days when I can’t seem to do anything right, or the nights when I feel like the farthest thing from a good mommy because I’ve barked at them all day, or the mornings when it seems like I could sleep for a year, but breakfast and backpacks need tending to, or when I just don’t have any fight left and for every moment in between when placing one foot in front of the other seems impossible –  these are the days I will need to revisit these words and remember. God has a plan and He is using this struggle for good in my life.  

Two precious letters scrawled out in the most beautiful handwriting I’ve ever seen… written just for me. Their words heal my soul right up. On a notebook full of medical jargon and my port “To Do” list, my girl writes words that sound like poetry in the midst of a nightstand filled with syringes and disease.

After a very hard day, my oldest leaves a letter on my desk when everyone is asleep. She asks forgiveness for her recent disobedience and whispers a healing prayer on paper that brings me to tears and changes my perspective when it was needed most. I have gained words to fuel my fight. Love notes from my girls to a mommy in need. A mommy that needs extra grace during a hard-fought battle… and they give it unreservedly to me. I have gained peace through the words of a 7 and 9-year-old who love with hearts so full I can’t even comprehend. 

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Thank you, God for my girls precious hearts and their beautiful words that keep me going.

Conscious Coupling

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So one of the “longest” marriages in Hollywood is over. Infidelity? Irreconcilable differences? Fighting? Nope. Nothing. There’s no reason. They are referring to it as “consciously uncoupling.”  I don’t know what that means but it sounds better than “divorce,” I guess. Gwyneth Paltrow and Chris Martin married the same year Ryan and I did (’03) and their children are the same ages as our girls (9 and 7). I thought it was awesome that they had stayed together so long in a culture that doesn’t value commitment. When I heard about the “reason” for their divorce it was upsetting. I don’t really care about celebrities and you will never catch me reading tabloids or US weekly, but I do love me some Coldplay :) and I respected this couple in a weird, celebrity sort of way.

I know it’s personal and no one really knows what went down. I’m not trying to be smug, but some articles quote them as saying they had “too many similarities.” So now I guess that’s a reason for divorce. They were too much alike?? Is that Hollywood code for “we got bored”? It just seems so wrong when I know couples who have fought through infidelity, major differences, trauma, disease, and deaths in the family and yet divorce was never an option. They stayed. They fought for their love and love won. Love won.

I was talking to a friend the other day about relationships. She was lamenting that her past relationships were a mess and if she and her fiancé ever came to the premarital group that Ryan and I lead, we would have our hands full. I told her we are all a mess, we are all broken, and it’s by the grace of God that anyone stays married. She remarked that my marriage looked so perfect, we couldn’t possibly have many issues. I am pretty sure I laughed out loud and cringed a little. I don’t want anyone to ever look at us and think we have it all together. Because I (we) don’t. In April, Ryan and I will be married 11 years. The first few were really difficult and the last few have been hard in different ways. When we mentor couples, we don’t sugarcoat it. Marriage is beautiful and wonderful, but it also takes a lot of WORK. Every. Single. Day.

Even the apostle Paul warned of the hardships of marriage. “Here is the problem: We Christians are facing great dangers to our lives at present. In times like these I think it is best for a person to remain unmarried. Of course, if you already are married, don’t separate because of this. But if you aren’t, don’t rush into it at this time. But if you men decide to go ahead anyway and get married now, it is all right; and if a girl gets married in times like these, it is no sin. However, marriage will bring extra problems that I wish you didn’t have to face right now. ”

Paul said marriage can be good, but it’s better to be single. Wow. Not quite an advocate for the bonds-o-marriage there, Paul. But he also says this, I am saying this to help you, not to try to keep you from marrying. I want you to do whatever will help you serve the Lord best, with as few other things as possible to distract your attention from him. But if anyone feels he ought to marry because he has trouble controlling his passions, it is all right; it is not a sin; let him marry. But if a man has the willpower not to marry and decides that he doesn’t need to and won’t, he has made a wise decision. So the person who marries does well, and the person who doesn’t marry does even better.” 1 Corinthians 7:26-28 & 7:35-38

Paul made sure to warn us that those who enter marriage will have it harder than those who choose to stay single. Doing life with someone everyday, sharing responsibilities, money, and children is definitely more complicated than devoting your life to one thing and living alone. (Though, I know the single life comes with many issues of its own.) Being selfless and putting someone else’s needs above your own is a virtue that is formed, tweaked and chiseled during marriage.

I know divorce is the only option in some situations. I’m not passing judgment on anyone who is divorced. I know things happen and people change. I get that. I’m sure Gwyneth and Chris worked on things as best they could. (I don’t know why I’m talking about them like they are my BFF’s…) But I truly hope they worked on their marriage before they let go. Here’s some face smacking honesty for you: I’ve been ready to bolt… more than once. And so has Ryan. We are broken, stubborn people. We can cut each other with our words faster than you can believe. That awful word “divorce” has even crept into my mind. Do you know why? It’s not only Satan’s best defense to keep families distracted and hurt, but it’s also his sickening way of letting us think it’s an easy out. He makes us believe that it’s the better, easier way to go. Not technically speaking – I know divorce is complicated and hard, but in the long run divorce is a clean break. No more working through the same old issues over and over that don’t ever seem to get worked out. No more dealing with the person who knows your sore spots better than anyone. No more hearing those trigger words that can make you lose your head. Life on the other side looks a whole lot simpler… and maybe it will be for a little while, but it won’t be perfect. All relationships are messed up, because we are all messed up people.

When you are known by someone deeply, it is lovely and sweet, but unfortunately that knowing goes both ways. They also know your faults, your hurts, your weaknesses, and your secrets. Because we are human, we use those things against each other when we argue or when we are hurting. Marriage is hard and sometimes it does sound appealing to leave and make a fresh start, but that will only cause more hurt, more scars, and more damage to more than just the two people involved.

Ryan and I are going through the “in sickness” part of our vows right now and I’m sure it won’t be the last time. When you share a life with another person, they must also share in every affliction, celebration and tragedy right along with you. After each struggle and every hard season we have fought through, we came out stronger, closer, and more understanding of one another. What we have worked through has been worth it. I don’t know where I’m going with this post, but maybe it was meant to  encourage those of you who are close to giving up on your marriage or are thinking about making a run for it.  Let me talk you down from the ledge. Don’t take that step. Don’t give up. God can restore any relationship. He can and He will. In the end, if we make a conscious effort, marriage wins.

Irony: Three Coldplay songs came on during the writing of this post, so I thought I would end with one of my faves. I wish the best for the consciously uncoupling… non-couple.

Grey Matters

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I don’t know how to explain the chronic diseased life. There are only so many words and I think I have used them all. When it comes to living a half-lived life, words fail. This type of disease is tricky. It is confusing since there is quite a bit of false information out there and then sufferers can be misunderstood. Even after all my research on the right treatment approach, the lines are blurred. There are no absolutes. It is the ultimate frustration for my husband, who has the mind of an engineer. He wants black and white, but Lyme Disease is a grey disease. He wants an end date, but doctors can’t give us one. No cure = no promises. It would be easier to know that if we do “A” and “B,” we will get “C” and “D.” Instead, it is constant trial and error.

“Most of my HIV patients used to die…now most don’t… Some still do, of course. My Lyme patients, the sickest ones, want to die but they can’t. That’s right, they want to die but they can’t. The most common cause of death in Lyme disease is suicide. In the current day, if one compares HIV/AIDS to Lyme Borreliosis Complex patients in issues of 1) access to care, 2) current level of science, and 3) the levels of acceptance by doctors and the public, patients suffering with advanced Lyme Borrleiosis Complex have an inferior quality of life compared to those with HIV/AIDS…”   –Dr. Joseph Jemsek, Infectious Disease Specialist; Lyme Borreliosis and Tick-Borne infection; HIV/AIDS

To put it simply, let’s say you have that awful flu you got last year, the one where you couldn’t leave your bed for days, only this time it never goes away and you don’t get relief… ever. You go to the doctor and he gives you a treatment plan and says, “do this for as long as you can stand it or as effectively as possible, then go off treatment and see if your symptoms return.” The symptoms return or you have new ones. Imagine this continuing for a few years. That’s kind of how it is, but add about another 30-40 symptoms, misdiagnosis issues in the beginning, doctors, friends, and family who don’t believe you and there you go. That’s what having a disease with no cure is like. It is a revolving door of madness.

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Ryan and I both want and yearn for my healing and full recovery, but we have to see it/get to it in different ways. And that’s okay. He needs to set an “end date.” I know we need the hope that setting a date brings, but I’ve been disappointed so many times in the past with promises of healing and treatments that could bring remission and when they came and went, I was the one left in the wake of the debilitating symptoms that continued and hopes that were dashed. I end up more frustrated and fragile than I was before. I have learned to stop thinking ahead and instead, focus on this day, this hour, this minute. I take each day as it comes. When I do, that’s when I can see the beauty of living even in the really awful days…the life I may have not appreciated otherwise. When I’m not pressuring it to do more than it is able, that’s when my body does it’s best healing.

Job 36.15

I have been on IV antibiotics for about two months now. I’ve had energy like my “old self” the past several days. I have smiled, loved, and laughed more than I have in a really long time. It felt amazing. I had my dearest desires – singing, writing, and creating come flooding back to my heart and my spirit. I didn’t realize how important the heart is when the body is in decay. It brings life to the body. It is everything. My personality is ripped from me when I spend day after day in a bedroom by myself with the curtains drawn. When you can’t do the things that make you who you were meant to be, you die a little. You lose “you.” I think the past six months or so, I had lost myself. It is a depressing hole that is almost impossible to get out of without bodily health. I couldn’t write. I couldn’t read. I couldn’t live. Life becomes pretty hollow.

I may not be able to accurately explain this disease very well, but I can describe what the good days are like after experiencing the absence of life. A fog is lifted and it is as if I am waking from a deep coma. Colors are brighter, music is achingly beautiful, food tastes better, every movement without pain is precious, each muscle feels lighter, ears that don’t ring make it easier to hear loved ones, every moment that is not distracted by pain or discomfort is cherished and valued more than ever before. I had forgotten what it was like to have the desire to do something and actually have the energy to do it. After living so long in dark grey, life feels like 3D Technicolor at an amusement park. 

I was loving on my little girl before bedtime one night last week. We were tickling and snuggling when she gently grabbed my face and held it in her hands for a moment before speaking. Then she said, “Mommy, I love your smile. It’s the most beautiful smile I’ve ever seen. I love to see you smile.” I realized that probably came from a place in her heart that had missed seeing her mama smile. It dawned on me that I have probably not smiled much in the past few months because of all that I have been dealing with. I have had tunnel vision to get well. Through clinched fists and grinding teeth, I have made it this far and it was a struggle every step of the way. I guess my face showed my pain and struggle more than I thought.

My hope is to continue this path of wellness without the tunnel vision. I want to live, heal, smile, and enjoy life with fists unclenched – even if that may mean a slower gallop to remission. I need to let my body heal on its own time. I have asked so much of my body. I have pushed it in more ways than I ever thought possible. It has walked (trudged) through physical, emotional, and mental trauma and yet I’m still here. I know people will continue to ask when I will be well or how long will I have the port, but I honestly don’t know. I can’t give anyone a timeline. All I do know for sure is that I need to give my body some grace.  I hope that others can do the same for me during this season of waiting.

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