The day I considered forgoing Black Friday..

I'm not quite sure what took grip of me the day this thought fluttered through my mind. Maybe it was too much joy flowing through my veins, or the song that played on the radio. It came abruptly and stayed a while. 

It should go down as a day in history; The day I decided I may not shop on Black Friday. There wasn't a reason for it which startled me. I mean where else can you get towels for $1.98.....  Now I've always been a bit of a bargain hunter from coupons to refusing to buy something I think will be on sale In a few weeks. Maybe it was flashbacks from previous years of 40 year old women swan diving and elbowing into the comforters and sheets marked 30% off. Maybe it was the dollar signs.. Maybe It was the lack of sleep and shopping so much that you forget what you bought and everything starts to look the same. That is after all what this day is about right. Or maybe it was just simply because I've seen everything it has to offer... I mean year after year....$4 flannel pajamas that get fuzz the first time you wash them, $2.00 towels, oodles of electronics to keep up with the fads.. $3 movies that are usually a whopping $5. It's always the same stuff... Grabbing meaningless gifts for a deal.. 

This year something in me wanted gifts to have purpose. Meaning, something someone loves or uses. It all started with blankets...

Yep blankets. I made each child a blanket this year. It was a fleece one I sewed the edges together so precisely. I seam ripped at mistakes. I sang Christmas tunes while I sewed. I got excited over giving the blankets to them. They weren't something I elbowed my way to, they weren't plastic and commercial. They weren't lined with the defeat of others as I got there first. As corny as it sounds they were stitched with love as I pondered the holidays.. How my children would slobber and sleep warmly wrapped in their blankets that I personally put together. As much as I would love to make every gift this season homemade I have already purchased my little ones their commercial items their electronics and toys themed of their favorite characters. 

I always go to Black Friday. I always go to add more meaningless items on their piles of stuff I started out listing as their main presents. I always think I need new towels or extra items... But you know what I don't think I need that this year... I think the Grinch has taught me a valuable lesson this year. Enjoy family, make something with your children, sit down and handwrite Christmas cards. Ponder the fact that less is truly more. Enjoy that. Enjoy your day of thankfulness. I'm not saying don't go to Black Friday this is just where my heart is this year. And at this moment... My husband can tell you that changes like the weather in Oklahoma. Just remember life. Remember truly the meaning behind the season. Remember whatever your gift whether it be stitched together from a folding table in your dining room or snatched and thrown in a basket in a rush of adrenaline,.....giving is not about the gift but rather what the gift represents. 

                                      

Sincerely, 

The modest mom 

Looking for the light.

Sometimes I feel like darkness is necessary. In order to appreciate the light. Other times I feel that darkness is a punishment. A misunderstanding. Or a judgement. No one wants to be around the hurting. We want to say we are. Or falsely embrace their pain,  so as long as it doesn't affect us. Where do I get these ludicrous a accusations you ask.. well from my very own soul in pain. They say misery loves company but I beg to differ... misery is isolation. Misery pushes people away. People want to love happy people. I've never understood that until I became the suffering. We want to sit in our happy circles and pat ourselves on the back at how happy and hopeful we are. And that's the easiest job ever when that's you. For that has been me. What a great job being positive we are doing. When in fact others around us are in pain. The merciful are deemed either weak, fake or giving company to someone else's misery. I don't understand this way of living. It's such a false sense of happiness. I want to feel. Even if it is pain. At least I am feeling. I want to love so deeply if the one I love is in pain I feel it in the depth of my soul. We get so caught up in our own lives we forget. We don't reach out. We become stagnant pools teeming with bacteria in our own self good. Living in such a world is almost painful. When your hurting it's pure torture to live in such a world of little compassion until it's too late. False inspiration. False hope. It becomes all too familiar. Choosing happiness is easy when life is good. Choose happiness is hard when life isn't easy. But even if you choose happiness that may not change the pain inside. I can choose to smile when the pain cuts like a knife or I can choose to laugh through tears. Choosing happiness doesn't mean the pain goes away. It means you learn to smile through the pain. We must remember that when you see someone in pain. It's not about choice as much as it is about compassion. Choosing happiness can be done even when the darkness is choking you out. But that doesn't mean your room will fill up with light. Sometimes being happy in the dark just looks a little differently than in the light. Think of a dark room with a cracked curtain. You can spend your time trying to focus on things that you can't make out due to the lack of light or you can appreciate at least whIle in the dark you can cry without notice. You can hide or even spend your time closing your eyes trying to understand where the light went. Even if I got up and flung open the curtains it would be extremely painful. Seeing the light is a gradual process. Learning to adjust. That's where I'm content at. And I guess if people are unwilling to be in the dark with me. They can peek through the crack in my curtain and make speculations all they want. But until you've been inside the room you don't know what it's like in the darkness.

Some kind of reality.

Laying beside a squirming 6 year old giddy with excitement about our day of school shopping tomorrow makes my heart overflow with joy... on the inside I revel at life and can't wait for this beautiful adventure to add to my memories. But on the outside my body aches.. my stomach queasy my mind over shaken with vertigo and eyes droop with fatigue enough to take down a linebacker.. it's times like this I want to shake my fist at the sky and ask. "Why me Lord?" Almost as soon as I ask that question I almost instantly regret it.... I feel guilty through my pain. What a complete utter oxymoron. Sometimes I just don't understand... yes I know im supposed to be strong. I'm supposed to throw words of inspiration and strength admist my tears... but I am not going to lie. Sometimes I hate that I'm that small percentage of Lyme disease in Oklahoma. I am disgusted that I have to pop pills on a regular basis to even resemble a normal function of life.. I'm sad that I can't even be excited about a fun day awaiting because lyme has decided to ravage my body.. it seems unfair. I am a 28 year old woman and feel like I'm in my early 70s on the days Lyme decides to have a little fun...  So on days like today I search for my strength.. in music.. in quotes.. in the words of my friends or even the squirming of a young girl looking forward to a day with mom... I choose to focus on that and push through the aching joints, headaches and fatigue. Smile even when it hurts and remember that my disease only defines my life if I allow it to... not today lyme disease, not today...


Until next time,
The modest mom
Amanda

Learning how to feel.

I have spent the most part of my last few days staring at a blank page. Waiting for words to come to me. Waiting for positive and inspiring tidbits of information to leave my mouth and sprawl between the lines. But each time I sit here and stare at the paper I realize that there is a good possibility those words aren't going to come. At least not today, tomorrow or next week. So instead of being able to turn this into another one of my awe word Inspiring blogs I decided this blog isn't going to be like that.. Instead this blog is going to be a piece of the opposite. It's going to be open and incomplete. It may have moments of misunderstanding or self pity. So if you aren't prepared to get a piece of a broken soul today and you are looking for a piece of Inspiration I'm warning you to turn back now. You are in the wrong place. 

Seven months ago we got our daughters Lyme disease diagnosis. A five year old with an untreatable chronic disease. Symtoms that are debilitating while active. A disease that is unexpected and overlooked. A rare disease spread by the grubby fangs of a tick nestled into a beautiful  countryside just waiting for their next prey. In that moment you search for answers and I asked myself a million times where we got this from. Where it came from, how? Many doctor consults later while visiting with some of the top lyme specialist in the country it was brought to my attention my complicated medical past and history. They suggested I get tested for lyme. I blew it off assuming and it not ever crossing my mind. For many reasons. Did this mean I had lyme and could've given it to her in utero? Were they insinuating all my complications could be related to her illness?

 For months I didn't even entertain the fact. Emy was being treated. She was well and improving. I had my local doctor run a screening for lyme. 

Let me break this down. Running a screening for lyme isn't an actual antibody test. Running a lyme screening vs an actual antibody test is like running a  lawn mower over some high grass trying to find the wedding ring you dropped somewhere in the one acre of grass the day before. In my case possibly 12 years before. 

Lyme is elusive like that. So I ran it against really wanting to and it came back I had antibodies of lyme but not enough to set off a CDC positive. Which means my immune system HAD been exposed to lyme but probably had taken care of it right? That's what I thought. 

Unfortunately lyme doesn't work that way. Lyme is like a corn maze. A horrible corn maze with things hiding at every turn and there is that possibility you get out of it and in fresh air quickly or there is that possibility you might never. I have not the time or energy to describe lyme how it's diagnosed and tested so here is one of the top lyme specialist in the country website where he has more than thoroughly explained it. If you have any inquisition I suggest you read his studies and research. 

http://drcharlescrist.net/Borreliosis/Testing-for-Borreliosis/

So with a swift kick in the gut Friday after seeing a lyme specialist, I should be used to the these by now. I faced the hard reality I had chronic Lyme disease. I have had it for a possibility of up to 12 years. Which caused the loss of our first daughter stillborn, more miscarriages, heart, blood and gastroenterolical issues, joint and jaw problems, migraines, and more health problem than any 29 year old should have to face.

Oh answers. I hoped I would be relieved by these answers but it seemed with them just came more confusion and pain. Now we start the journey that our other children also have the possibility of carrying dormant lyme. Which will require testing and possibility preventive treatment. Lifetimes of changes, all revealed within seven short months. 

Life isn't given. I've seen that before but I see it more clearly now. Good days aren't promised and most assuredly not guaranteed. Frankly sometimes the life you get handed flat out sucks. I'm not saying it won't get better, or that it will always suck. 

I always had the postive side when it was just me being able to take care of Emy. Nurse her back to health. Be her positive ray of sunshine but today as we went for her routine labs to check on her disease I realized I had it backwards. She was my postive side. She was my hope and she is why I know I can do this with her help. Don't take life for granted. Don't take your health, hope or happiness for granted. Be happy for every moment of health you have because it can be stolen from you without a warning. It can be taken without explanation. Without warning. And it can leave you in a fog of confusion, pain, and hardships you never thought you would face. 

Lyme attacks families. Lyme attacks hope. Lyme attacks and when it does it does without warning. 

I'm not full of inspiration today. Instead I'm full of truth. 

Sometimes it's okay for people to see your pain. Sometimes it's okay for people to understand your disappointment.

Sometimes it says more to someone instead of offering words of encouragement to realize sometimes all people need are prescense. Not a false sense of everything will be okay. But rather a friend for the journey. 

Until next time. 

Amanda 

The modest mom 

     My little lymie getting her bw today!

I need a bigger house.

As soon as those words escaped my lips, I felt automatic shame. Why do I need a bigger house? To store more of my unnecessary stuff of course... Then it dawned on me. Why do we hold onto stuff?

Some reasons I have held onto items in my life:

For the assumption I will surely need this one day? Possibly yes, but unless someday is in the next 6 months to a year do you really still need it? We hold onto things we think may save us a buck or two down the road, or maybe that extra coffee pot that sits under the counter just in case you get a whim to make coffee for a houseful of guests you've not had in over 3 years. I don't need that, and I'm sure if I donate the item I'll have immediate remorse and crave a huge ol pot of coffee right? Why do we do this as humans... We have had the coffee pot for years and only used it a handful of times but know if we rid ourselves of it we will need it. 

Another big reason I've held onto something, to please my family. Now hear me out before offense sets in. Oh that teddy bear was given to you by your great aunt Bertha, given it's 6 feet tall and 4 feet wide we absolutely can't get rid of that it will hurt her feelings!! Why is it when someone bestows a gift to you, it's not okay to bestow that same gift to someone else? Maybe the teddy bear has given our family so much joy and we no longer have the space and there is not as much love going around toward the bear that there once was.. Is it not okay to share that love? To give that excitement to someone less fortunate? It amazes me how we think that teddy bear should never leave the home, should always be the centerpiece and never replaced. The truth of the matter is that things are replaced, children outgrow wonders of things they once loved and move on to different awe Inspiring things. The truth of the matter isn't the item, it is the memory. And the belief that somehow that bear will bring us back in a place in time that we once were. You may call me calloused and non sentimental but hear me out, I have very few things from my childhood. I have enough things to fill up one small grey tote, those things include picture albums, a couple stuffed toys, some cheerleading Pom poms, a porcelain doll, and a few trophies. Although I enjoy looking and reminiscing about these items I feel no loss in items I remember but so graciously have passed on to others. Such as I had a 3ft tall life size Barbie doll! That doll was my best friend years! We danced, we played, I ultimately cut all her hair off! Ha! She brought me so much joy! Am I sad that my mother didn't save her until she was dry rotted to pass down to my girls?? Heavens no!! Do I remember her? Yes! Let's move on. 

My point is simply this. Things are things! Items are to be loved but not to become our true love! Today as I ached for a larger house to store more of my stuff I thought to myself... Really Amanda? What are a couple items you can think of that your children TRULY cherish right now. The list is as so...

Caedence- first would be his stuffed pup cliffy. He has had that since he was 3. Secondly his "thing right now" is his Pokemon cards. 

Emery- first would be her "angry bird" collection set. Second might be her dress up bag. 

Quinn- First would be her baby doll, any of them for that matter. Second would be her play kitchen and doll stroller.  

As you can see this list is minimal. I can promise you their rooms contain a lot more than this list... Let's take it up a notch 

How many things off the top of my head appliance like do I own but haven't used in the last 6 months... 

😳 I'm honestly embarrassed to say.... So I'll leave you wondering..

My point is we have to get to a point(and by we I mean ME,) that we allow ourselves to enjoy our items without thinking we need our items.. I clean out quite a bit. But after today I've realized I always surface clean.. I'm really afraid to get rid of something to offend or hurt someone ... Or because I THINK I need it. Everything I need is in my Lord and my family.. I don't need a big house filled with things. I need to remember that simplicity is okay. And I'm sure The Lord would want me to remember giving things, even if they were a gift or once brought us joy, should be bestowed to others and not hoarded in a closet with some hope they will bring me happiness later on in life. 

Sometimes I think I have to verbalize these things to myself just as an affirmation I remember them. 

Hopefully this revelation will begin me on a journey of giving more, storing less and enjoying my small space of love and home that was blessed to us! 

Until next time. 

Amanda 

The modest mom 

Lyme Will not define us.

Before Lyme hijacked our lives................

A daily routine includes, getting up preparing my 5 year old a 100% gluten free lunch, getting all the kids up and ready for the day, then preparing a gluten free snack, gluten free breakfast and then  1/4 teaspoon of this medicine, a 1/2 a pill of that one, another teaspoon of this one, and 2 ml of that one,.. followed by water, dishes, book bags and they are out the door until 3 o'clock when we start the medicine again. Strict diet, lots of googling and cooking and dishes, It doesn't end until our heads hit the pillow, then 7 hours later we start over. We do mental checks of calendars, appointments and bloodwork, new prescriptions and changing prescriptions.. Matter of fact the pharmacist knows me on a first name basis by now. It's hard work. Lyme disease isn't an easy fix. But I remember back.. It wasn't always like this.

December 2013 changed everything. We were chugging through life. Three beautiful, healthy kids. My husband settling into a new career, me working full time as a stay at home mom. Monotonous of daily life happily filling our tanks. One morning my five year old Emy woke up with a fever. I gave her some meds, a wash rag on her head and turned on cartoons. You know, the normal remedy for a "sick day" but by noon when I realized the medicine wasn't working and she was regressing and quickly. Her fever shot up to 105, she was limp, lifeless and I just had a feeling in the pit of my stomach.. Something was seriously wrong. 

I don't like to elaborate on the details of the first doctors visit and the many after that didn't give us answers. We spent close to 40 agonizing days of no answers, she began getting migraines, nose bleeds,.. She had changed. She wasn't the same little girl. She was angry, aggressive. I'd never seen this in her. And it was frightening for me. There was blood work, enough to where at 5 she was hardly flinching at getting it drawn.. A hosptial stay, IVs, medication "guessing" diagnoses at what could be wrong... finally we drove 8 hours and 20 minutes to see a doctor who laid it all on the table with confidence. Lyme disease. Definite. With 2 co-infections. Which meant in short. She was very sick. She had failed numerous neurological exams. The infection had spread. It was severe. It was chronic...., Chronic,....that 7 letter word hits you in an unexpected way as a parent... It was painful, confusing and hard to hear. It was also relieving. We had answers. We had a plan. We had hope. 

Here are some pictures of the early days of her illness. 

I hardly ever got to see her beautiful smiles anymore.. Sunshine made her life miserable she was so photophobic. 

Her illness stumped even the best children's hosptial. Her blood work wasn't normal. She had elevated liver enzymes, they couldn't pinpoint it. 

Her "friends" did make the hosptial stay a little better .... 

The "thumbs up" it became her trademark of getting better. We said from day one we would fight this and we would win. 

Her specialist had a great a plan. It was a long term medication treatment. To treat all three infections. To push them Into remission. This wasn't a cure to eradicate the disease because there wasn't one. It was hope to live a halfway normal life without so much pain, with only fear of flare ups and not a constant fight on a daily basis against the disease and all the damage it does. 

He said she needed to be 100% gluten free. Which would help her fight. That wasn't too hard to embrace since I needed to be gluten free (even though I wasn't living it) due to autoimmune disorders.. It's different though being told that for your child than as an adult. It meant no indulging at class parties, no sack lunches with your friends. It means being very careful, having to ask before you chomp down on a cookie at Halloween, or have that slice of cake at a friends birthday party. You can only have those special treats prepared especially for you... You no longer can be part of the "crowd" 

It's been around 2 months since her diagnosis and she began treatment. I'm amazed by how much she has improved. How much of that little girl is returning to me.  It's not gone. I still see lingering lyme in her lazy eye. Or in her headaches that only come once every couple weeks now. I still see lyme here and there when her body overreacts to something it doesn't like and she suffers. But I see smiles now. I hear laughter. I see her spinning around like a ballerina in the bright sunshine without crying the light is too bright. The anger has diminished, and now is closer to that normal in a frustrated five year old. We haven't won, but we are fighting. And we are winning. I see it in every milestone we reach. 

Until next time,

The Modest Mom

All rights to photopgrahy below are given and recognized to

www.carriepalmerphotography.com 

Who helped us capture this beautiful picture of fighting Lyme disease!!