Share Your Story

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I walked 2 miles on Tuesday last week. TWO whole miles. For my amazing running friends who run 40 miles a day, do 500,000 mile marathons, triathlons, and run-15-hours-through-mud-athons every weekend, I know this sounds like the warm-up before your warm-up. But for me… it has been years since I could do it. Years. In the past, I have pushed myself to walk around the block, I try to do yoga or light exercise since being debilitated by this disease, but after a long active day, it usually does not happen. To feel that extra energy “urge” and be able to walk that long was HUGE. It was 2 miles without joint pain or muscle fatigue. I felt like doing it and I was able to keep doing it.  And that’s just for starters! I was able to get out of bed early the next day, get ready, and go full steam like my old self of 4 years ago. Oh, how I’ve missed that self! I didn’t have the energy to wash my hair (this is why I love long hair, top knot it is!) and I almost had to crawl to the shower. BUT, I got ready and spent the day at the zoo with the girls. It hurt later and my body was angry with me for the rest of the week, but I enjoyed the day and was not totally distracted by pain and fatigue.

This week has been a little different. After a few busy weeks in a row, my body has shut down on me a bit. I have had kidney pain and exhaustion, but I have been able to keep up with life, for the most part minus some “sleep half the day away” days. Thankfully, it’s summer and the girls have been ok with lazy days and staying in our jammies.

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I have also had a crazy “Lyme awareness” summer. I have written articles, had two different newspaper write ups about my journey (thanks to a sweet friend who writes for a newspaper) and was interviewed by KMOX for a quick story about the personal aspects of this disease. I was also asked to record a podcast for a friend who has a women’s ministry. Her new series is called “A Call to Courage.” Monday I will be going to a recording studio to talk about my struggle and how God has been my comfort and my peace throughout this never-ending battle. (Prayers appreciated for this!)

But, to be honest with you I have to admit that I get really tired of talking about this disease. I get weary of how Lyme seems to take over my life. I even get bored with the words used to describe this disease.  Chronic.  Late Stage.  Severe.  Neurological.  Remission.  It gets very old, very worn, and very depressing. There are times when I retreat to my room, turn off my phone, put on some Brandi Carlile (not Belinda), pull the curtains tight and push my head as far under the covers as I can.

Some days, I don’t want this to be my story. I didn’t ask for this. I don’t have to talk about it… right?

Wrong.

Yesterday, I was minding my own business, worrying about next week. I was feeling apprehensive about having my voice recorded – sounding vulnerable and small, as I’m sure it will. I was praying about it, but fearing it a little bit, too. Then I opened up my little white mailbox and pulled out junk mail along with some bills, and a simple white envelope with unfamiliar handwriting, addressed to me.

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I wasn’t ready for what was written inside of the little blue lighthouse card. Words written to me, words that reduced me to a humble puddle of tears while I stood barefoot on my porch. I was taken back by the magnitude and simplicity of a beautiful, personal hand-written letter. A woman thanked me for sharing my experience with Lyme in the May issue of the West magazine. Her daughter has been sick for over two years and they have gone to many doctors trying to find the cause of her health problems, to no avail. After reading my story, they asked their doctor to test for Lyme and although he was apprehensive, he tested her anyway and she was positive for Lyme disease. Her words just knocked me over, “I know the Lord meant for me to read your article and I appreciate so much that you shared your story. Ellen now has HOPE because of you, DeAnne.”

Typing that sentence out just made me a mess of tears all over again. I called Annette today and we chatted for a while. It was good for my soul. I gave her the name of my Lyme doctor and we talked about God’s provision and his goodness. I was thankful for her card and she was grateful for my story. We agreed that this was all meant to be. Blessed.

Ellen has HOPE because of how God moved through my story. He is the one who should receive the glory. I’m just thankful my God still uses the broken, the messed up, and those of us who are still in process to help others and bring Him praise. I’m humbled. (And I might still be crying…)

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A friend posted the days excerpt from “My Utmost For His Highest” and I was again reminded that God uses our stories here and now… not later or when the “miracle” or success comes. He uses what we may think is the “just getting through it” part of our lives more than any success or victory. His purpose is in the process. Oh, how I needed to read this! He can walk on the storms of my life right now…

“We tend to think that if Jesus Christ compels us to do something and we are obedient to Him, He will lead us to great success. We should never have the thought that our dreams of success are God’s purpose for us. In fact, His purpose may be exactly the opposite. We have the idea that God is leading us toward a particular end or a desired goal, but He is not. The question of whether or not we arrive at a particular goal is of little importance, and reaching it becomes merely an episode along the way. What we see as only the process of reaching a particular end, God sees as the goal itself. What is my vision of God’s purpose for me? Whatever it may be, His purpose is for me to depend on Him and on His power now. If I can stay calm, faithful, and unconfused while in the middle of the turmoil of life, the goal of the purpose of God is being accomplished in me. God is not working toward a particular finish— His purpose is the process itself. What He desires for me is that I see “Him walking on the sea” with no shore, no success, nor goal in sight, but simply having the absolute certainty that everything is all right because I see “Him walking on the sea” (Mark 6:49). It is the process, not the outcome, that is glorifying to God.

God’s training is for now, not later. His purpose is for this very minute, not for sometime in the future. We have nothing to do with what will follow our obedience, and we are wrong to concern ourselves with it. What people call preparation, God sees as the goal itself. God’s purpose is to enable me to see that He can walk on the storms of my life right now. If we have a further goal in mind, we are not paying enough attention to the present time. However, if we realize that moment-by-moment obedience is the goal, then each moment as it comes is precious.”  -Oswald Chambers 

These words and the words on the little blue card quieted my doubts and confirmed my suspicions… I simply can’t stop telling my story. I must continue to be vulnerable and honest, even when it’s uncomfortable, even when it’s inconvenient and even when my emotions get in the way. I can’t stop spreading awareness and education about Lyme disease. It’s important, it matters and it’s making a difference. Annette and Ellen are proof that our stories matter and we must continue to tell them, even when it hurts. If my story can help one person, it’s worth the hours, the research, the writing, the interviews, and my energy. It’s worth every single minute.

Give hope. Give life. Share your story. It just may be what someone needs to hear today.

The Fairy Dance

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I’m not sure when it all began, but sometime around the “age of losing teeth” for my oldest, I had an idea to write notes from the tooth fairy along with the usual dollar or trinkets she received for each tooth. Ryan became Chloe’s fairy somehow, even though we took turns many nights for the sheer fact of, I don’t know because - parenting. It is so hard sometimes, and I guess I like to make it harder for some reason. The night of a lost tooth would find us scrambling up late at night writing left-handed notes on torn scraps of paper, sprinkling fairy dust or digging through drawers of old jewelry looking for something interesting the fairy could leave behind. Thus began our little fairy “dance” with our girls. (And this was pre-Pinterest!)

I’m not sure if Chloe ever believed the notes were from a real fairy. She has always been my highly intelligent, practical, rational, never-even-believed-in-Santa kind of child. She loves fairy tales, fables and whimsy, but she knows that in the end, it is just a story after-all. From the time she could talk (which was pretty much always) she knew Santa, the tooth fairy, and the Easter Bunny was really Ryan and I. She played along for a few years because it was fun, but that was all it ever was to her – a game.

In walks (runs), Girl #2 who cartwheels to the beat of an entirely different drummer, and I don’t even think there is technically a band. She makes her own music, in her own way. I am constantly amazed at the creativity, stubbornness, and love for life this girl has. She waited as patiently as a 4-year-old can wait while she watched her big sister lose many teeth, then receive gifts and hand written notes from her very own fairy. Cammie cried for hours one night because she added up the years she had left before she would lose a tooth and have a fairy. It was a few years too many, in her opinion and she let us have it. I obviously didn’t think through this whole “personal fairy thing” very well. Mom of the year award.

So, obviously I had to come up with something. Around this time, Cammie was having serious issues going to sleep, staying in her bed, and staying asleep. She was up and down all night and we woke up with her in our bed more often than not. I decided to be her “Sleeping Fairy.” If Cammie stayed in her bed all night or went to sleep without incident, then the sleeping fairy would visit her and write her notes of encouragement, bring candy, or leave her a small toy.

This was the holy grail for my spunky girl. She believes whole-heartedly in Santa and even more so in fairies. It didn’t always help the sleeping issues, but it got her on the right track and definitely created a bond between her and her fairy (me). While some 4th grade boys were trash talking the existence of Santa and the tooth fairy, my tiny 6 year-old (at the time) defended them with gusto. C.S. Lewis would be so proud. I’m sure she fully expected full-fledged fairy applause to erupt behind her when she finished her speech about the books she has read that prove their existence. (aka: fairy tales and pop-up fairy books.)

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Tonight, after tucking Cammie in I reached under her pillow, feeling my hands around slowly as usual. My fingers touched something cold and I pulled out the treasures she left for her friend. I can’t remember the last time she got in our bed or woke up during the night, so these days I’m no longer her sleeping fairy. Sadly, her tooth fairy doesn’t visit as often, but we continue this dance that has captivated her heart for so many years. She will be turning 8 in November, and I have a feeling these fairy days are numbered. Part of me suspects that she just has to know by now that I am the one doing all of these things. I wonder if she has thought my writing looks strangely similar to her fairy’s Sanscrit (try as I may to make it look like a tiny creature attempting to write with a pen bigger than herself), which is not as easy as it sounds. Does she guess that I am her “Twinkles,” but just wants to feel the magic a little longer? I know it’s silly, but I just can’t let it end quite yet. Thankfully, for now I don’t have that problem because she leaves me something almost every night.

I don’t profess to know all that much about parenting. I may be totally setting her up for a future that will require countless therapy sessions about fairies visiting her in the night.  All I know is that for the past four years when she finds “fairy dust” on her blankets and her little hands reach under her Wonder Woman pillow to find beaded “fairy” bracelets, a glass bottle stopper, and scrawled, misspelled notes, she jumps out of bed and runs to show her sister, her eyes lighting up with wonder and awe. She talks so fast in her excitement that we can hardly understand her endless fairy conjecture about Twinkles being a moon fairy, if she likes fireworks, how big she is, or how fast she can fly.

In these moments, when her gifts and love notes have been gracefully received and the love has been sweetly reciprocated, she knows she is loved, cherished, and her heart is being pursued. Someone took the time to show her how much she is treasured and that means everything. One of these days, when she’s fighting teenage angst or thinks her parents are crazy, I hope she will remember our fairy dance. Maybe the same childlike wonder and joy will flow back to her heart, knowing she had a mommy and daddy who loved her dearly and valued her enough to spend time doing things that made her heart so happy.

As my girls grow up, my prayer for them is that they will remember these sweet moments and be reminded not only of a parents deep love, but more importantly of their loving Savior who loves and adores them even more than all the fairies, centaurs or mermaids in the land. I want them to know that our God is a God who calls them His beloved, pursues them with a beautiful abandon and knows their every breath. The One, the Rescuer, the Grace-giver wants to live and love in the same kind of dance with them as the ones they knew from their childhood, the magical dance that started with love notes and fairy dust.

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You are the best. The middle of the ring is as blue as the sky, and the coin is as shiny as a… Fairy!

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Cammie’s gifts to Twinkles

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Thank you for my treasures. I love the ring. The blue is the color of my eyes. I like the coin, too! Are you having a good summer? Love, Twinkles

The Thief of Joy

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A snapshot. A moment. A day of digging for roly-polies and frogs coming to a close. Her little hand opened inside of mine, holding a caterpillar. Dirt under her nails, wispy blond hair falling in her eyes, the smell of sunshine on her face. An excited sister holding a box of dirt and bugs behind her. Their voices intermingling so much that I can’t tell one voice from the other. My loves enjoying each other and the beautiful day. This is what I will remember about Mother’s Day. Not the flowers, balloons, or cards. Not the lunch or chocolates. I am fond of these things, but I don’t want my real blessings to get lost when Facebook and Instagram begs me to compare my life with everyone else’s.
Mamas, I challenge you to not miss the moments by letting social media take your joy.
It’s your time, your moment. Don’t lose that gift.
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I know how you think. I am also a self-conscious woman who analyzes everything. We see a beautiful family picture of a friend and tend to focus on her perfectly dressed children in outfits you can’t afford. Or how it hurt a little that you saw that the neighbor kid made breakfast in bed for his mom and you barely had time to make your cup of coffee before things were demanded of you. Or you see your friends getting amazing gifts, jewelry, and vacations you can only dream about. You cringe at your waistline when you see a picture of you holding your baby. The same body that gave life and sustains life everyday, all day long – in ways that some people don’t even understand.

Let’s just stop devaluing our lives by comparing them to the facade of someone else’s.

You are more than that. You are a mother… and not just on Mother’s Day when the picture perfect stuff is plastered on every social media page. You are a mother on the really hard days when he’s puking for hours on end and he just. wants. you. You are a mother in the middle of the night when she hasn’t come home and you stay up worried and waiting for her call. You are a mother when he uses your shirt for a kleenex and you wear the shirt for the rest of the day, anyway. You are a mother when she doesn’t stop crying and feeding and you feel like this season of life will never end. We don’t take selfies and post our status for these moments, but it is in these moments when we become the best of mothers. What we see online is not reality. No one knows what they are doing when it comes to parenting. We are all doing the best we can, even if your friends on Facebook post otherwise.

Last week, my oldest had a Mother’s Day “spa day” at school. She told me to wear PJs and a robe so I would be comfy, so I showed up in my favorite pajamas and my robe, as instructed. Not only was I the only mom out of about 80 mothers wearing my bedtime get-up (complete with a large hole in the pant leg that I had failed to notice), but most of the moms were dressed up – like Easter Sunday dresses and heels! I started to feel a tad crazy, so I whispered to her and asked if she was embarrassed that I was in my PJs. Her response? “No! I love it! I think you’re awesome. That’s what I wanted you to wear.” She then proceeded to give me a hand massage and painted my nails. I’m so glad I wore my PJs that day. I only became self-conscious when I started comparing myself to others but seeing myself through my child’s eyes changed my perspective for the better.

Notice the real blessings… the only-for-you love. The faces you know better than your own, the hands that curl into yours when they are scared, the cherished little feet that you worry about when it’s cold and they aren’t wearing socks. The long eyelashes that get you every time. The memories that are yours and yours alone. The moments that make you sit back and thank God; those are things that can’t be purchased on an aisle at Hallmark or even bragged about on Twitter. Those are the real gifts. That is what we, as mommies, live and would die for. Social media, in all it’s glory, can never take that away from us.
Remember… “comparison is the thief of joy.”

Happy Day after Mother’s Day to all my mama friends. I hope your week is joyful and that you feel loved and celebrated – even on the really bad mama days.

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