Forgetting what "normal" is like

Forgetting what "normal" is like.

As I lay here wide awake in the evening hours my mind racing with a million facts, questions and musings. I realize I've forgotten what normal is like. Now let me be first to tell you I'm not necessarily a fan of normal but other people are. To be honest sometimes normal takes much less effort than different also. I'm not talking about fitting in with the crowd and having the most popular in style shirt or looking normal like the rest of population. I've simply forgot what being normal is.

10 years ago I became a mother to my firstborn. Life was a breeze with him. So much so that a few years later we tried again for another baby. Then came our now 7 year old curly headed quiet and funny daughter. Then after believing we would never have another child God gave us my last born. A 3 year old blessing with the biggest eyes and even a bigger love to melt your heart. But you see when he blessed us with her we didn't realize it would change our normal. She was born partially deaf with auditory neuropathy even though we didn't discover it until she was 3. I can remember thinking maybe she was just a "difficult" toddler. I mean everyone has those right? I can still remember being at a department store when she had her first blood curdling episode. The lady working behind the counter looked over her glasses and point blank said, "you know a doctor can give you medication to fix that." I left without even getting what I came for and strapped her into her car seat and cried. I didn't understand that my idea of normal was already changing.

At 3 years old after multiple doctors visits and unintelligible speech issues we had a diagnosis. I don't know when you get that ldiagnosis whether it is supposed to feel better or worse. I think a little of both. She had auditory neuropathy in her right ear which in short connected to the left side of her brain which was responsible for speech. Not "normal" hearing loss. They described it like hearing through a loud static radio. Never silence... always noise. And since it was like that it meant fixing it wouldn't be easy either. Matter of fact there was no magic device that would fix it. No surgery, no medication. Only therapy, time, and learning to be a new normal.

We are down to double digit countdown for a trial run of our first round of devices after a year of waiting.

I some days feel like a complete failure as a mother. How do you mother a child who can understand at the capacity of a 5 year old (she's been tested so we know) but can communicate only as a not even 2 year old.

People stare.. people hush, whispers... She's louder than she means because it's never silent in her head, in loud places she places her hands over her ears and yells "too loud, owie", her temper is some days uncontrollable,.. which we've been told is also an outlet because she's so frustrated.... I some days just cry with her because I can't understand what she's saying.. some days I feel like I've failed my other children because I ask them to help me, whether it's calm her or help decipher what she's saying.. she doesn't sleep well.. because her noise never stops. People suggest..  if you'd just spank her it would stop that behavior.... I've wanted to scream in their faces.. don't you think I've tried a spanking???!?! My heart some days handles not being normal less than others. Like when her brother asks.. "mom will Quinn ever be able to talk normal?" I have no answer for that because I don't know.

Sometimes until you live the life of not being "normal" it's hard to be sympathetic... but let me end with something.. the next time you hear a kid being overly inappropriately loud, or throwing a tantrum in public don't look at that mother with judging eyes. She feels horrible enough without you staring daggers at her or posting on Facebook how your "so glad your children are well behaved" you have no idea what not being "normal" is like. How many nights and days she's cried because trust me she wants life to be easier but it just isn't. But you know what. She's doing the best she can with what she has and unless your willing to walk a mile in her shoes try a friendly smile, don't judge her when your standing there with your healthy normal children and she can't get her child to speak softer or she can't get her off the floor a moment to understand why she's throwing a fit.

Trust me it would be easier for us to be normal like you, but God had different plans for us.


Amanda

Saying Goodbye.

Dear 321 Ted Allen Lane,
Where do I begin? Probably with a little curly headed boy and a blonde headed girl with bouncy curls just turning one. Back before you were complete. We got blisters on our hands from painting you from top to bottom and putting every bit of our heart and soul into you. From a simple place.....to a place we called home. You saw Caed learn how to ride his bike for the very first time without training wheels. You heard the laughter of Emy as she learned to not only walk but run jump then climb, you also heard her tears as she learned to sleep in her big girl bed without mommy and daddy and boy did she not want to. You were there when I cried tears of sadness when my boy started school and tears of joy when he learned to read. Then when life became unsure. Our marriage was rocky and it seemed everything we did just made it worse. These walls saw our pain and were lined with our tears. You saw when hope dawned again and when things got whole again. When smiling and happiness was no longer absent. When love and laughter had meaning once more.

You saw when Emy began to grow. When she was so giving she cut 10 inches of beautiful golden locks to give away to Locks of love. Then you were here again when there was news of another baby. After 6 tests I finally had their daddy convinced. Yes, you were here then too. It was here on the stump in the back yard when I first felt the tiny kick of baby Quinn. We laid in the bed in the backroom together and listened intently to her little heartbeat on the prenatal monitor for hours...it never got old.

Then she came. Early. It was this home, your comfort I longed to feel after a long NICU stay. Then when she finally got to come home and we were finally complete. It was here in which I had all my love together in one spot again. It was here my big boy Caed lost his first tooth and Emy the same a few years later. It was here Emy left little drawings of people on the doorframe as if greeting me hello. Here that Quinn learned to scoot, roll over, crawl and walk. You saw when Emy was diagnosed with Lyme disease only for Quinn to be diagnosed as partially deaf not a year later. You've heard my prayers for them.. prayers for healing and grace.

Here we have kissed countless scraped knees and elbows. We've laughed more in this house than we have cried. We've built tent forts in the living  room and played countless hours of hide and seek. We've cuddled together on stormy nights and talked about the stars. It was here that Saturday mornings we were greeted by 3 little kids so full of life and love bouncing on our bed while we still slept which eventually turned into an epic ticklefight. We've spent evenings outside swimming and laughing and building fires. So many memories and so much love.  It was here by his bedside we kneeled and prayed together as my little boy accepted Jesus as his Savior. It was here my boy became too big to cuddle with mommy anymore, here he made his first real friends and here he no longer asked to have a nightlight on.

There have been so many firsts just in the last few weeks... Emy riding her bike for the first time in the same spot Caed did just years before. Quinn getting her first big girl bike to where I dreamed of her learning to ride her bike in the same spot the other two did before her. I am not sure how to leave you. To leave this place that holds so much of what I've loved. These memories that have given me such joy. I know in my heart you are just a house, just boards and beams placed together..but you were our house. You shared with us so many important times in our life. It was in this house our family grew. It blossomed and happiness echoed throughout. It was loud and crowded alot of the time but part of that was what made it so special. I'm not sure how to say goodbye. I'm not confident that I can totally. Your goodbye will be a process, one that I will have to grieve over time.

But thank you for the gift of the memories I hold. I can place them in my mind, somewhere inside that reminds me all of this happiness that took place In a little house nestled in a small town tucked behind the trees.

People after us will come and repaint the walls, the fingerprints will have been scrubbed away along with little traces of what was before. But my memories of this place will remain the same locked tight and safe in a portion of my heart that I will forever and always treasure.


Thank you.

Why I hate Pinterest, facebook and pretty much anything Internet related...

Of course I don't really hate them, but I am inclined to hate any and everything that is media related,... why? Well I guess a better way to phrase it is I have learned to hate technology that pretty much is telling me I'm doing everything wrong and frankly quite an inadequate individual..

Lets start with Pinterest, I can find myself spending countless hours browsing recipes I'll undoubtely never make, gorgeously organized polished homes I'll never own and crafty amazing creations I'll probably buy the materials for but never create... 

Facebook,.. oh beautiful facebook.. I will spend hours surfing and reading, looking at profiles of pictures of cute mom's with their new hair and date nights and those moms bagless eyes and perfectly manicured children while mine are sporting 8-hour old spagetti crust face and I honestly found a piece of a sucker in my 6 year olds pig tail and guess what I didn't take my pajamas off today much less paint on an entire face of makeup and beautiful mascara that makes your lashes look about 6 feet long. 

While I'm on hating the internet world let me hate google, it will undoubtly pull up the fact there is not only a deadly flu outbreak but I'm sure within the next 72 hours it will convince me I have a rare cyst in my stomach lining that causes me nausea when there is a full moon. Guess what, it's deadly.

I miss the day of mail order catalogs and the fact that I didn't have to see that perfectly manicured mom's superhuman abilities so up close. Instead here I am with dark circles, frizzy unbrused hair, guess what I did take off my pajamas only to put on a clean pair for the next night. I envy the mother who has their children in bed at 8:30 sharp, has dusted ceiling fans, no dirty laundry and still has time to do her makeup. 

How does she manage such superhuman abilities,.... I managed to only have to throw away one sippy cup of curdled milk today, I got one room vaccumed and I actually do manage to have a clean pair of pajamas to put on, but it's almost 9 and my kids havent even considered the word bed,... 😴😴 and I'm too tired to even think.

So to the moms who have ever sprayed febreeze on a dirty jacket, didn't answer the door because you were afraid it was TLC ready to film a new season of Hoarders or put on a hat because you lost your hairbrush a minimum of 3 days ago, raise your glass because your not alone!!

Guess I'll Google one more time how to organize life... couldn't hurt right?

The Modest Mom

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!