A Reason To Smile

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I have been MIA on social media and here on my blog for the past month because I have been living again and it feels SO good. The past year, while I was trying to kick the worst of late stage Lyme and Babesia, I did IV antibiotics round the clock, so I was home bound. I spent most of my days confined to my bedroom, under the covers in my bed or on the couch. And while that may sound quite enticing, believe me… it’s not the charmed life you may expect. It was pretty awful. Actually, I hated it. I am a very “Type A” person and to be bed bound with this disease is already bad enough, but then to have a port and be attached to an IV pole a few times a day that takes hours to infuse was just torture. Sometimes the treatments made me sicker than my symptoms. To say the least, it was just a very hard year. There were days that I really didn’t know if it was worth it and I questioned what I was doing. It was a lonely and depressing time for me, but it was also a healing time of rest. I loved the quiet, introspective moments that home treatment provided. The time was good for my soul and my body.

I have hesitated writing a “post IV” blog update, because I wanted to make sure these past few weeks have been real. It’s been so wonderful. There have been moments when Ryan and I have caught each other’s glance when we are somewhere with the girls and we immediately know what the other is thinking. It’s usually something like,  ”I can’t remember the last time I have been able to do this.” I was at a party last weekend where I played volleyball and ran around and played with my girls. It felt amazing. Then I came home and still had energy to clean the house. I have had good weeks and even full months in the past where I felt pretty good, but then relapsed really bad. This disease is already confusing enough, so I don’t want to give conflicting updates. For now I’m going to say that I am thankful I was able to do IV antibiotics for as long as I did and I definitely think it was the right choice for me. I am very pleased with the results. We haven’t seen changes this good in my energy levels, pain and neurological issues in over three years. I truly believe we have turned a corner. I am hoping this is the remission we have been praying for.

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I know that I have a long road ahead of me to get my body back to full functionality. I have been fighting a parasitic and bacterial infection for many years, so there’s no way to know if we got “everything,” but I hope it was enough that this new health I’m experiencing will last a long time. I have still been getting my tremors and MS like symptoms. I continue to get fatigued pretty easily, but I am trying to find a new normal and be as balanced as possible so that my immune system will continue to grow stronger. I’m also working on losing my “treatment weight” and gain back some of the muscle mass that I lost from being bed ridden when I was at my lowest point. It has already started coming off because of how active I am lately and for that I am grateful. Again, I’m taking each day as it comes and I’m just ecstatic that the treatment killed the bacteria off enough that I get a taste of what life used to be like for our family.  I hope it lasts forever.

Oh, how I have missed this living thing!

I don’t want to lecture you today, but please don’t take one day of your life for granted. I know it has become cliché to say. We plaster it all over Pinterest with our cutesy little quotes in the most adorable font, but hear me out: I don’t care if you are just running errands or picking up dog poop in your yard. If you are able to walk without pain, wake up without migraines, play with your children without having to take a nap, have a conversation without fear of forgetting words, or go have coffee with a friend without having to cancel because of exhaustion – REJOICE. You are ALIVE. You are HERE. You are WELL.  Please let that give you a reason to smile. 

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Happy Fall from my neighborhood to yours! 

Chasing Childhood

I wrote this a few weeks ago, but never found the right way to finish it. After a sad milestone moment for my baby girl this week, I was able to finish my thoughts.

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Tonight Cammie ate 7 hot wings and the rest of Chloe’s leftovers. She went to a playdate this afternoon where her best friend since Kindergarten talked about getting married someday and having three children together all while he pushed her on the swing. She will turn 8 in a month. I guess maybe that is why I let her splash in the rain puddles in the restaurant parking lot. I guess that is why the dirty floors and dusty furniture don’t bother me that much tonight. It’s also why I let her wear pajama pants to school this week.

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Chloe has developed a love for music and singing, so we gave her a guitar for her 10th birthday. Along with the guitar, I passed down some of my special guitar picks. I remember holding one of these picks while my cousin showed me how to play a bar chord for the first time while on a family vacation when I was 15. In high school, I held a clear pink one between my nervous, shaking fingers while I played a song I wrote for a few boys in a garage – hoping they would let me into their band. (They did.) The following years of playing gigs and making music together are some of my happiest memories from adolescence. I used my favorite blue pick during college while playing guitar with my boyfriend at the time in a drafty room in an old loft apartment – the same room where he would take his last breaths just a few months later. Many cherished memories that seem like yesterday, only a little faded around the edges… like an old photograph. Clear and focused in the center, but dim and slightly blurry if you look too closely.

My fairy believing baby grew up too much over the weekend. She finally figured out that I was her tooth fairy. She sobbed and got upset. I’m not sure her melancholy was merely for the revelation of the non-existence of fairies, but I saw in her eyes a sadness in the understanding that she was growing up. It was hard seeing my 7 year-old facing the hard truths of life. Her lips quivered when she lamented that she wished she hadn’t found out until she was 18. I don’t know if I could have kept up with it that long, but I would have tried my best…because I’m a mama and I don’t want my girls to grow up just yet. I’m actually hanging on for dear life.

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It was brutal being hit with the reality that we are passing through the elementary years at a frightening pace. I’m not ready for the “baby” and “little girl” years to be through. I had just gotten the hang of that part, now it is almost over and we are thrown head first into the shaky ground of tween angst and the beginnings of hormonal drama. I, too am sad for the reality of a home no longer enveloped in the certain type of magic and mystery that is only present when little children are living there. I will desperately miss the gleeful shouts upon discovering fairy dust and hand written notes left under pillows. I cried right along with her.

Sometimes I can’t breathe, it hurts so bad this stuff of being mortal, of growing up, and passing on. We are a quick blink in time, a tiny dot on the historical radar screen. We are all fading to specks of dust. Sorry for sounding like Debbie Downer, but thinking about this lately has made me even more determined to get well and live fully. I want to squeeze every ounce out of each day. Life is just so short.

I don’t know what those without the One True Hope do when thoughts of growing old take root in their brain, but I cannot fathom the darkness without knowing of His light. We have a beautiful life to live here, and an even better one waiting for us in the future…one that hopefully includes clouds you can eat, fairies, mermaids, and other magical creatures and of course, our beloved pets. I’m not an expert on heaven, but I’m almost certain these will be there simply because children exist.

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In the meantime, I’m relishing the sweet parts of their childhood that are left because there are many more memories yet  to be enjoyed. So, I’ll just be over here telling my girls to keep believing in fairies and unicorns and chasing down their childhood, begging it to stay.

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Through the Lens of Love

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I often think in terms of loss with this disease. I feel robbed of  what was supposed to be the best years of my life. Stolen days, remnants of a social life, distant dreams, and goals that have taken a backseat to my health. My purpose,  passions, ambitions – all  vanished. I will never get the time back that Lyme disease has ripped from my life and it haunts me daily how much time was “wasted.”

But the Lord continually reminds me that while there may be some loss, so much has been gained through this journey. Not only did I discover a strength of will and courage inside myself that I didn’t know existed, but I found a brave girl buried beneath the one who often lived in fear of the world. I am no longer living in fear. I am brave. I have become courageous.

Brave. Courageous. Strong. I never would have used those words to describe myself a few years ago. Now I hear many loved ones in my life who encourage me and tell me that I am all of those things. I think I am slowly starting to believe it. Maybe. But it has only been because of HIS strength that I am here at all. Jesus is my courage.

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Throughout this journey, I have learned to lean into my Father as I have never had to do before. Debilitating health brings you to your knees like nothing else will. I have cried, shouted, and yelled at God many times over the last few years of pain, frustration, and agony. I have repeated scriptures to myself in the wee hours of the morning and He came in close and stayed with me in the pain. I have heard Jesus along the way, reminding me that He is with me. He isn’t going anywhere and that is more than even family can promise when things get too hard. He understands the loneliness. He gets the ache. It’s more than I can bear, but not more than He can bear. So, I hoist this burden of sickness off my back and he takes it – freely, lovingly, without hesitation. He knows. He sees. He is there. I have prayed loud, bold prayers for healing and have whispered quiet, two-word prayers in the dark – begging Him to take a tiny bit of the pain from my body so I could sleep. And He has. He will never leave me or forsake me. He is here in the mess with me and promises to give me a way to endure.

“No trial has overtaken you that is not faced by others. And God is faithful: He will not let you be tried beyond what you are able to bear, but with the trial will also provide a way out so that you may be able to endure it.” 1 Corinthians 10:13 (GNT)

God has brought people into my life that I would have never met if not for Lyme disease. Many nurses, fellow patients and sufferers, loving and concerned doctors who truly fought for me and wanted me well and so many beautiful people who pray for me daily. Letters, emails, calls and messages from strangers have shown me that my battle has not been in vain. Many have a correct diagnosis, are getting treatment, or have prevented themselves or their loved ones from getting Lyme disease because of my story.

A nurse came with me to Bible study when I was beginning my natural treatment journey years ago. We knelt in front of a cross, hand in hand and I had the honor of praying with her as she dedicated her life to Jesus and asked for His peace in her life. Our paths would not have crossed if I had been well.

God has a purpose that is far above my own. Where I may only see an obstacle that needs to be removed, He sees through the struggle and makes beauty out of the ashes of this diseased life. I’m beginning to realize that even in the pain and trials, the struggles and heartache – God creates a plan, a way, a hope. He moves – in spite of me, and in spite of Lyme disease.

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I guess it also goes without saying that living with a disease for so many years has given me a profound love and empathy for sufferers of chronic illness. My heart is moved and opened to the sick and hurting in a way that only personal experience can bring. I am drawn to help others who are sick or suffering in any way I can and I’m excited to see how God will use this season to help the hurting.

Through it all, I am reminded every day that I am not alone. God has brought immeasurable good through this journey. I can’t look at my disease through the lens of loss anymore. I now see beloved faces, hear familiar voices, and have many “total God thing” stories to tell about the faithfulness and love of God.

I can honestly say that, even though it may have taken years –  I now see my disease through the lens of love.

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