Living this life.

I share alot of my frustration and pain. At first I thought it would be good to spread awareness but as life chugs along I've decided not only does it share awareness it is my own special kind of therapy. Writing has always done that for me. So I decided to give those who follow our story a little window into our world. What a day living as a parent of a child with ANSD is like. So get ready for a Rollercoaster as most days are.

We have a pretty routine life. I developed a routine years ago because I knew it was better for children. I knew it would be key to keeping my sanity as the most important job I'll ever do. A stay at home mom. Today we woke up bright and early. It was our first day of headstart and everyone was busting at the seams with excitement. I woke little Quinn up with a kiss and a tickle. She happened to sleep all night in her bed which happens rarely. Most nights she ends up in my bed mid-night. She's never been a good sleeper. We get up and she is obviously tired and not too happy about it. I leave ample time because rushing with her stresses her out and she has a tantrum so we go slow. The first thing I ask her is if she is hungry. She shakes her head yes. The next few minutes I know will ensue of me deciphering what she wants to eat to avoid a meltdown on this first important day. She says she wants "si-ul" I know her well enough to know she is asking for cereal.

Then she says "ma I unt si-ul in a tu if oh ilk"

no lie exactly as that is typed is what I hear. After a few seconds I ask her to repeat. I know I have to get it this time or she is going to flip out and lose it. Finally I discover 10 seconds of silence after her repeat what she wants. She wanted cereal In a cup with no milk. Phew catastrophe averted. I have had people laugh at me when I tell them I'm scared to not understand her. Most of the time I can get her to repeat herself more than once but sometimes once is it and you can see the frustration behind her eyes. Imagine speaking a different language than your child.

I know there is a beautiful and complex little girl behind those big brown eyes just wanting someone to understand her. To laugh at her jokes and to share her frustrations and fears.

How do you explain to a 4 year old the complexity of delayed speech and the fact I want to understand her but can't. She was frustrated today because a little girl at school called her a baby. I told her not to worry.

She said "moma me ad. Me ot una o to tool. A dirl at tool call me bitty baby" (momma me sad. Me not wanna go to school. A girl at school called me a bitty baby" I said what girl was it. Did you know her. She said "no a bue dre" (a Blue dress) I'm sure the girl called her that because she's unusually petite which is something I'm sure she'll be glad about later in life but trying to explain it now is near impossible.

Most days I spend listening intently and guessing, like a Neverending game of charades that losing could mean an hour of screaming, frustration and anger. I've seen toddler outbursts and these are different these are outbursts of a child not knowing why someone is ignoring them, even though that's not the case it's how it feels for her.

Remember when your baby was a newborn and either had colic and you felt helpless and defeated or maybe your friends baby had and you realized how hard it was. Having ANSD is like having a colicky preschooler. When a bad day happens and frustration comes intertwined with hearing loss. Nothing I say or do matters.

The thing with ANSD is some days I understand most everything out of her mouth and other days I understand nothing and I fight to get through and guess what she's saying. All anyone wants to be in life is heard. We spend most our lives looking for someone willing to listen to us. More than anything I want to be that for her now. One day I will be. That is my goal. I refuse to let her go through life without being heard. It doesn't matter what road we have to take. no matter how hard it is and how many days I feel like I failed. I want her to look back at childhood and remember, no matter how hard it got. No matter how frustrated her and I were that her and, I we never gave up on each other.

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