Many of you know us and have followed along with Havens journey. Some of you
may not.

Life with Haven has been a rollercoaster from the start.

Around 18 months Haven began to rapidly go downhill. She started to lose
some of her speech, have extremely violent meltdowns, was inconsolable
frequently. It was hard to go in public with her. The days just kept getting
harder and harder. At 18 months Haven began the process of getting her Autism
Diagnosis as well as Speech Therapy, Developmental Therapy, and Occupational
Therapy. In the midst of receiving her Autism Diagnosis she was diagnosed with
Chiari Malformation of the Brain. Haven underwent Brain Surgery at just 2 years
old. Since then Haven has had countless Surgeries and Procedures. She has had a
couple horrible battles with Staph Scalded Skin Syndrome, one time we almost didn’t
get to keep her. Havens’ current diagnosis have her living in Chronic Pain. The
Chronic pain coupled with her Autism makes for extremely hard days and nights.
Her meltdowns are frequent and long lasting. When she is in so much pain, she
is unable to using her coping skills we have worked so hard to teach her over
the years.

Along with the increase in meltdowns and pain Haven has begun to struggle
more at school because of her issues. Many days she does not make it through
the day because of her pain and how overwhelming parts of school are. Most days
I have to go into the school to give Haven additional medication for her pain.
Haven goes to the sensory room daily, sometimes multiple times a day. A lot of
the days as soon as she gets in the car she completely loses it as she tries so
hard to keep it together at school all day long.

Haven’s current list of Diagnosis are Autism, ADHD, PTSD, Chiari
Malformation of the Brain, Dysphagia, Encopresis, Migraines, TICS, Sensory
Processing Disorder, Cervical Dystonia, Anemia, Restless Sleeping. She takes a variety
of seizure medication, pain medication, muscle relaxers, migraine and sleep
medications daily. She sees specialists at Cincinnati Children’s Hospital and Riley’s
Children’s Hospital. In the next month alone Haven will undergo Multiple
Procedures and Surgeries, as well as appointments with her Specialists.
Hospital Days are very hard on Haven and stressful for us both. Haven has PTSD
from so many medical interventions early on. She is always terrified and
extremely combative, plus the long drives are very hard on her body.

Many have asked why a service dog? What will a service dog do to improve Haven’s life? Service Dogs for
Children with Autism act as constant companions to children to help them improve
social interactions and relationships, expand verbal and nonverbal
communication, teach life skills, increase interest in activities and decrease
stress within the family. Haven’s dog will be a full service dog, not a therapy
or emotional support dog. It will be able to go any and everywhere with her. It
will be one hundred percent trained to Haven’s needs. When she is having
anxiety or a panic attack it will apply compressions to her body. It will
accompany us to doctors appointments and help to keep Haven calm during her
appointments and procedures. Eventually it will go to school with her and help
her navigate through her everyday struggles (ie lunch, recess, transitions,
changes in routine and social situations) In addition to helping Haven, the dog
will help all of us. It is alot on Mia and I dealing with the daily highs and
lows of Haven and her dog would offer some relief, support, and respite for all
of us.

This is not something we have come to lightly. I have prayed and prayed and
researched until my head spins. As Haven continues to regress, and things keep getting worse, I feel
within my momma heart and gut that this is our next step to helping Haven live
a happier and healthier life and to continue to reach her full potential.

Ways to donate

Venmo: @Taylor-Kerner-1

Paypal: Taylorkerner6@gmail.com

Gofundme (Does take fees): https://gofund.me/2e03f24f

If you are unable to donate, sharing our cause is a huge help.

Thank you to all who have supported and encouraged us over the years. 

The words/ song that keep playing in my head when looking back on this year.

“I love this home but now I hate this house.” After almost ten years of renting the same duplex, I bought the girls and I our first house with hopes of it becoming a home. I’d be lying if I didn’t admit it was months of hell from the start. There was a period I wouldn’t even go in our house, paid rent and a mortgage simultaneously for a few months, when I would go in the house I would just sob. Once we finally moved in I didn’t sleep for weeks. I would have a flashlight out at 4 am searching every corner of the house. The problems straight out the gate were huge. And expensive. Being a single mom with no father/ male figure to help made it all that much more daunting. Thousands and thousands of dollars, so many tears, and 9 months later and I still don’t love our house but there’s moments I find it feeling more like a home.

The Girls and I went on so many adventures. Great Wolf Lodge, Chicago, Floriday, Disney, Las Vegas. We rode our bikes all over town, roller skated, scootered, I coached Haven in soccer, watched her do gymnastics and Mia dance and play basketball, art classes, church camp, and summer camp. Ate mass amounts of Scoops Ice Cream. Spent many nights on the Monument Patio. We made memories with some of our favorite friends and cousins. We watched a couple movies 😉 Our bucket list was ever growing and I felt we were never stopping. I love making memories with my girls, I love them trying everything and getting so many opportunities I never got. They are the best sidekicks to adventure through life with.

For all our good moments we had our share of bad. Mia had multiple procedures on her foot, only to end up with a broken foot shortly after. In True Haven fashion she had another surgery. Covid took another Thanksgiving from us with both the girls going down with it. Mia (and I) are navigating the preteen years which is so far not my favorite and challenging to say the least but I love watching her grow into a girl and not so much a child. As Haven grows life with her becomes harder and more terrifying. So many don’t have a clue. There’s so many days still where I don’t know how any of us are going to get through. Shes half my size. She puts up one hell of a fight. She’s cleared rooms, left Scars, and broken parts of my heart I didn’t know were there. I call her ABA therapist my spouse. She’s been through the worst of it with us. Moments I still can’t speak of because they’re too painful. Haven’s recently started new meds and we are headed to some different specialists to hopefully help us all have some better days. Special needs parenting is not for the faint of heart. So many days I sit here begging Jesus for it to be a little bit easier. But I remind myself (and Mia) as hard as it is for us it has to be so scary for Haven. As much as she drives us to our wits end she keeps us going and fighting for her. She so deserves it.

I turned 30. Walked away from people I never thought I could. Forgave people that never apologized, began to heal and love myself in some of my lowest lows. Had some of my absolute favorite memories and some of my worst. I bought a freaking house all on my own. Paid off my car. Raised these two beautiful babies while running a business. Watched the business I poured myself into Break records, raised almost 20 thousand dollars for a family I adore, gave away school supplies to hundreds of kids, sponsored families but more importantly cultivated safe family fun in our beautiful downtown.

Going into the new year our goals aren’t crazy. I want to practice more self love and filling my own cup, love this house more and keep making it a home, live more in the moment with my girls. Let go of the little things. The girls and I are looking forward to another Bucket List year, Texas in March, becoming an Auntie to My best friends sweet baby boy, adventuring as much as we can, spreading kindness where we see it’s needed, and hopefully some consistently easier and happier days. We hope the same for all of you ❤️ Thanks to those that continue on this journey with us.

It’s been a hell of a year.

xoxo Taylor

I feel like every December you look back on your year and you feel like it was all just so monumental, that you went through so much, learned so much, grew so much. Every year feels like the absolute biggest, most impactful year, until the next. And then that becomes your biggest feat. Looking back on this year I know that when I look back in 20 years, this will still be well engraved in my mind. It’ll probably feel as raw as it does now too.

I took the biggest loses of my life this year. Felt pain that you don’t easily come back from, if you ever do at all. Pain that drains you. Pain that kills you. Life as I knew it completely changed. I learned in the biggest way who my real family and friends were, the line in the sand was drawn. As hard as that has been I have gained family and friends that are irreplaceable and help make that loss hurt a little less and for them I am so SO thankful for.

I put my relationship with God on hold this year. I know so many of you will probably cringe reading that. That’s okay, you’re allowed to. When I held my grandmas hand as she died, I prayed to God. When I held my own baby as she was sepsis, I prayed to God. During her brain surgery, everyone of Mia’s echocardiograms, when my niece was born, every time I hear a siren, when something big, little, or in between happened, I would pray to God. That’s all I knew. All I needed to know. Until it wasn’t. Pain changes people and I’ve watched the biggest Christians Gods ever seen become the most vile, living, breathing monsters besides the Satan they believe in. Some of you, really ruin it for everyone. I can’t say this is a forever thing, but it’s where I’m at right now.

Mia has grown into such a preteen this year, I feel like all the baby is out of her. It’s terrifying and magnificent all in one. We moved Mia to a new school this year and it was petrifying, after watching her struggle so badly last year we absolutely could not go through that again. Thankfully Mia has thrived at her new school, slowly began to come out of her shell, made friends, joined some clubs, killed it in her Christmas program, sponsored a hat and glove drive that literally reached hundreds, and is the kindest hearted young lady that I am so blessed to call mine. We’ve gone through a lot the last 8 years but she will forever be my first true love.

Haven, oh Haven. Every year is such an adventure with her. She has come so incredibly far this year. We have had some of our highest highs to our lowest lows. From having the Parkview police called to try and intervene in one of her most intense public meltdowns to date to watching her grow leaps and bounds scholastically in school and in ABA. With growth though comes new problems. I feel like some people assume because Haven is high on the Autism spectrum that she’s easier. Let me be clear high functioning does not equal easy. It comes with a whole new world of worries. She is ever changing therefore so are our issues. Some days are easier, but many many days are still so hard. We are now preparing for Kidnergarten which is honestly terrifying. On top of her Autism, Brain Disorder, and Immune deficiency, Haven was recently diagnosed with ADHD as well. And even on our best days it’s near impossible for all of that to mesh. I am still in such shock that Staph Scalded Skin came back with a vengeance again this year. The weeks spent at home literally Nursing my child back to health were rough. But I still have my baby. And that’s all that matters. I look forward to watching Haven grow and evolve, as scary and the future and unknown maybe.

Kevin and I spent our first full year together and boy was it a year. It takes one hell of a man to take on two little girls, one special needs, and their ever intense Momma. But this man has proven time and time again he is in it for the long haul. Our relationship is not perfect, but it is real. And every day we give it our all and give our all to our babies. We will continue to grow. He is the calm to my storm, he’s light and airy, always smiling and reminding me to do the same when I struggle to let myself get there. This man has loved me through my worst, carried me through my weak, loved these babies endlessly, and has given us any and everything our hearts desire. The girls and I are so lucky to have Kevin.

As hard as this year has been we have had so many amazing moments. Havey gave up pacis (HUGE for us and our struggle with ASD), Kev and I both moved into new careers we love, Haven has become less fearful of medical intervention slowly but surely, experienced my first DMB weekend with those I love, Haven played her first real team activity (t-ball), I helped run a campaign for a man the girls and I adore, I watched Mia shelter special needs kiddos with love every Parent wishes their child would receive. We’ve laughed a lot. We’ve cried a lot. We’ve loved a lot. We are all looking forward to next year and all that comes with it. Thanks for ridding this never ending rollercoaster with us. We love you all.

As always, be the good.

Xoxo

Taylor

Except for when he does.

I struggle to read my last blog post. I was so emotional writing that, feeling very nostalgic about fair week and thinking back on the year before and how thankful I was to have a healthy and happy baby this year. Literally crying painting her perfect, not peeling Toes. Only to eat my words and watch my living hell unravel and happen all over again just a week later. As I watched Haven’s body begin to deteriorate as it did before I suspected that was what was happening again. We spent all week in and out of the doctors, they said it was strep (she had a negative strep test) but I knew it wasn’t. The redness began taking over but again they said it was part of the strep rash. When I picked Haven up from the autism center one of her therapists who spent time with us at the hospital last year said Taylor her body looks like when she had staph, which is seriously what I had been saying all week! That gave me the extra nudge I needed to make our voice heard. We left and went straight to the doctors. I adore our NP, she’s been through so much with us, after looking her over she said it looked like the start of Staph Scalded Skin again. My stomach hit the floor, instant nausea, I could feel my entire body begin to shake. This could not be happening again. We could not do this again. I could not take this again. God does, in fact, give you much more than you can handle at times.

We received two antibiotic shots that night, and the next day met with our Infectious Disease specialist and were admitted. We were hopeful at the thought of taking Havey home on home health care. Being Trapped in a hospital for weeks is not ideal for anyone let alone a child with Autism and Extreme PTSD. But coming home with a PICC and having to be her 24/7 nurse was seriously so exhausting and intimidating. With having four treatments a day, most in the evening, night, and early morning sleep was few and far between. It was also terrifying being the one monitoring her body that just kept getting worse and worse. I have so much respect for our nurses and doctors because this made my anxiety so much worse. Watching her burn and peel again was too much for this mommas heart. Haven is without a doubt the fiercest, strongest, bravest tiny human I’ve ever met. We had a lot of very hard moments. She got so down at times she would just sob in sadness, her autism got the best of her at times and she would just rage. Haven thrives on routine and consistency and being cooped up in the house for so long really took its toll on her (and me, holy stir crazy 😫)

But we made it. 3 weeks off our routines and work, 2 weeks being hooked up for hours upon hours every day. We are beyond drained. Mentally, emotionally, financially, and physically just drained. I’ve struggled to keep my mind right at times. It’s all just bullshit, honestly. As childish as it sounds, It’s just not fair. I’ve devoted everything to Haven, I do everything in my power to keep her healthy and safe and do the right thing and this keeps happening. And every single time it falls on me and is such a set back in our lives. This job is not for the faint of heart. As bad as the bad times have been though we’ve had some really awesome people helping to keep us going. Thank you, thank you, THANK YOU to those who have been here for us. You helped make this very hard time a little easier ❤️

Because Haven had this before she should have been resistant to it but that clearly wasn’t the case. Instead her body was resistant to treatment and took much longer to respond than we thought it would. Haven’s body is in the final stages now. She’s still sloughing everywhere, her feet are peeling and coming off in chunks, but the parts that were the worst in the beginning are healing now so the end of this is in sight and we will be able to begin to fix our very battered mind, souls, and hearts. Haven is still immunocompromised and very fragile right now, any sickness Is a major threat to her. In the next couple of weeks we will begin the process of testing Haven to try and figure what is wrong with her. It appears she has an autoimmune disorder but we will have to find out what one and how to treat it. This will not be easy as getting blood draws are nearly impossible with her, but it is vital in getting the answers we so desperately need.

Thank you to all who sent kind words and prayers, y’all are amazing ❤️ Xoxo Taylor

I have this weird sense of memory. Well memories and trauma. I’m sure many others do as well. Certain smells, holidays, events, bring you right back to that moment. It’s like time traveling and in those moments I feel everything so deeply and just like Im living it for the first time. It’s Both a blessing and a curse and so many days I wish I could turn it off. I either remember it all or absolutely nothing. That’s what fair week has been for me this week. Hell thats what driving the backroad to my doctors office every time is. This time last year we were two weeks out of our first hospitalization for staph, having the time of our lives with our favorite people at everyone’s favorite fair. Since I was a little girl I have loved the Dekalb County free fall fair. Junk food, rides, and games. It doesn’t get much better! Having babies made it that much more fun. But this year it’s made me feel uneasy and a little weak in the knees. My anxiety has been at an all time high and all the dark and scary floods my thoughts. I cried driving there thinking about last year. Remembering how red Haven’s entire body was the whole time and how I had text her original doctor Saying something was wrong. Only to get back a “she’s fine, we will see her next week” (Looking back at the pictures from last year she looks so sick 😭) Remembering the screams coming from my child that night afterwards. Screams I hadn’t heard even when they removed her brain, skull, and spine. Screams that still haunt me. Rushing to our pediatrician only to be rushed to the ICU. (I thank God daily for Haven’s medical team, they undoubtedly saved her life) Remembering waiting for them to get an ambulance out of the fair to drive my very ill baby to Riley’s. I don’t think fair week will ever be the same for me. That week changed my entire views on life, those around me, and the God we so desperately pray to when your world comes crashing around you. 

Haven and I have been through the ringer. This blonde haired, blue eyed, bluntly honest tiny human has completely reshaped who I am as a woman, mother, and friend. The person I was before her is non existent. From her Autism Diagnosis, multiple surgeries, to a 12 day stay for Brain surgery and Chemical Meningitis. A bunch of pretty dark and scary that at times felt like it broke me, still nothing prepared me for our battle with staph. Nothing prepared me for watching my sweet baby I have fought so damn hard for deteriorate in front of my eyes. Nothing prepared me for getting in an ambulance and telling my momma I didn’t think I’d bring my baby back home. Nothing prepared me for her entire body burning and peeling. All the pain and trauma I’ve endured. All the trials and tribulations Haven and I have been through together and that week was still a shock like no other. A year later and it still floods my nightmares, it’s unshakable. I know we both have a steady dose of PTSD. It comes in waves. There’s days Havey says to me “momma remember when I almost died” Every day sweet girl, Every. Single. Day. Some days it eats me alive, someday’s I feel myself gaining on it, but every day it’s still there.  Even still we put our happy faces on and the girls had a blast at the fair. We ate junk food, they rode every ride as many times as possible, and won the worlds most annoying toys at the rip off games. We all began to heal a little. One successful, grease fueled fair night at a time.  

Today Havey and I went on a long walk, we talked about all she’s been through, about staph and her soft melon and why life is a little different for her. We walked to the park and dinner, came home and painted her not burning and peeling (but very bruised) sweet baby toes. I swear I cried every stop we made tonight and the entire time painting her toes. I probably will every day for the rest of the week. I am just so so thankful the Lord let me keep my girl. All the little things seem so big in these moments.

“Find your tribe, love them hard.” I’m forever thankful for the Matilda Jane mommas that carried us in every way possible and to my friends and family who were and still are our saving grace in the dark and scary times. Life with Haven being both medically fragile and special needs will never be easy but is always so SO worth it. Hug your babies y’all. Hug them tight ❤️

xoxo Taylor

Early last week we met with Mia’s new therapist, she looked at her and said Mia in life you have two choices. You can be a survivor, or you can be a warrior. You my dear, are going to be a warrior. We are going to build you to be a warrior. And as much as I know she was saying that to her, I think God was really making sure I heard it. A few days later life as I knew it came crashing down around me. My world and heart shattered. I’ve struggled to function, to process, and to not want to just climb in bed all day and hide from the dark and scary world around me. The thing that keeps playing in my mind are the words of that therapist. I am not a survivor, I am a warrior. I am not my past, I am a warrior, I am not the worst thing that’s ever happened to me, I am a warrior. Although In this moment I feel as if I’m just surviving, one day I will look back on these times that shaped me into a warrior. That shaped me into a better, stronger momma. That shaped me into a better significant other and friend. I may not be there now but some day I will be. And if you are in the trenches of pain, I hope you know someday you will be a warrior too.

I’m not a newbie to trauma. My childhood had a nice sprinkle of dark and scary. A steady mix of neglect and abuse led to not always ideal choices and lots of misplaced anger and pain. I made some mistakes, looked for love in the wrong places, thought because of the trauma I had endured through out life that I was bulletproof. Learned more than once that I most definitely wasn’t. I think when you go through a steady amount of emotional pain you feel invincible to any other pain that may happen. It’s like your body and mind become numb. I was numb, for a very very long time. Being numb hurt less than living in reality. Then one day I made a choice, a decision, I wasn’t going to be my past. I wasn’t going to let it consume me. I got the help I needed to heal, lots of therapy, working on myself, and setting goals. I worked three jobs and began to give myself a better life than I had been given. When I got pregnant with Mia I promised myself she would never go through the pain or have the childhood I had. And since that day I’ve done everything in my power to do that for both of my girls. I work multiple jobs to meet all their monetary needs. I try to build them strong to the world around them while also keeping them within my reach and out of harms way. I will make sure they always have a voice, a safe place, and know they too are warriors.

You have a choice. Your trauma and pain may be different. Rather it be a toxic relationship, job, family member, or just some internal struggles. Remember you always have a choice. You are in control of your life. Remove the toxins. You absolutely cannot heal in the same environment that broke you. You can be a survivor and just get by. Numbing yourself from the world with drugs, alcohol, or just emotional detachment. Or you can fight for yourself. Remember your worth. Get help if you need it. There is no shame in that. Every day is another chance.

I’m not whole again yet, I honestly am unsure if I ever will be. The dark and scary comes every night in my dreams, at times I find it’s all consuming. But I will be okay. I have been taught the proper tools to cope and work through my emotions, I have a few really awesome family and friends that won’t let me sink, and I have two beautiful girls that keep me swimming and fighting for myself and those I love around me. Grief is tricky, it comes in waves. Different things trigger it. What works for one may not work for everyone, but everyone is worth finding what works for them. Be a warrior. YOU ARE WORTH IT.

To those who have carried me during this tough time, thank you. Words will never be enough ❤️

xoxo Taylor

Earlier on in our Autism diagnosis I used to dread getting invitations to birthday parties. Not just Birthday parties but bridal and baby showers, holidays, really any special event. Not because I didn’t want to go, I wanted so badly to go and celebrate these people we loved and the special events in their lives. I knew though that in those settings, the meltdowns were inevitable. I also knew that although the people in our lives love us and want to support us, they might not always know what to do if the situation arises. So we didn’t go. For a long time we didn’t stray too far from the house or our comfort zones in fear of setting Haven off and in return setting those around us off, especially in public settings where people may not know Haven or her struggles and are usually not to kind or understanding to her intense meltdowns. It was a very lonely and isolated time in our lives. At times I found myself resenting those and the world around us.

Havens had her diagnosis’s for a few years now. Throughout the years I’ve slowly started to do more with her and others. I’ve grown stronger and more confident in myself as a special needs momma. My skin has toughened, I no longer worry as much about what the strangers around us think. They do not know the burden I bear and I owe them zero explanations for why my child is struggling so strongly in whatever given environment we are in. I refuse to live our lives less than what they already are just because her meltdowns or quirks may upset those around us. That’s not fair to Haven, Mia, or myself. We’ve all given up so much since Haven’s diagnosis’s. We aren’t losing any more time or precious memories with those we love and those that love us. If that makes people upset or uncomfortable, I am not sorry. Autism is growing at a rapid rate and if people Choose only to see the meltdowns or behaviors, they will miss the smart, beautiful, bright, and loving 5 year old that God has blessed us with.

To those that choose to love us and still invite us even when it’s not always easy or the most peaceful, THANK YOU. Thank you for not giving up on us. Thank you for showing us grace in our absolute worst moments. Thank you for offering us a quiet space when the noise is too much and she becomes over stimulated. Thank you for helping when you can, for not judging when most do, and for loving us through every single meltdown and tear the three of us sometimes cry. You are pure gold and we are so lucky to have each and every one of you.

To my sweet Kevin, thank you for always being ready to tackle these events with us even though we both know it will probably go awry at times. You were made for this and I thank God daily for you.

The last month has been very hard on us all, I don’t know if it’s the change in routine from summer, if Haven is going through a regression, or if her Chiari/brain is bothering her but 5 has not been good to us. Please pray this passes quickly as many days it’s so very hard to see the light at the end of the tunnel.

As always, be the good y’all.

xoxo

Taylor