Burning skin and broken hearts

Last week started out like any other week, until it didn’t. Tuesday night Haven screamed in agonizing pain the entire night, she would tire herself out for a bit, we’d both fall back asleep and then the crying would start, again. Wednesday she struggled some at school, I noticed her face becoming red in odd spots, and her neck looked almost sun burned, it had been chilly out, there was no way it was a sun burn. I called the surgeon that treated her original Staph, he told me she was fine and they’d see me next week as scheduled. I sent a picture to my grandma and told her I thought something was wrong. That night was filled with more screaming, she kept saying her neck and side hurt. I knew it then, the staph was back. Thursday we woke up and Haven couldn’t move. I called our pediatrician who told us to come in immediately. I carried her stiff body to the couch, her screaming in pain the entire time. She wouldn’t let me touch her, she had on yesterday’s clothes and wouldn’t let me take them off. She was just in SO much pain. I hadn’t seen her in pain like that since her brain surgery. She has such an insanely high pain threshold I just knew something was really wrong. On the way to the hospital I text my mom saying “something is seriously wrong with Havey.” She called me immediately. She just knew too. I’ve said this before and I’ll say it again, follow your mothers intuition. Listen to that voice in your head. YOU know YOUR child. If I would have kept my baby home and waited until the next Tuesday to see the surgeon as he told me to do, she wouldn’t be here today.

That day and the days following were a whirlwind of living, breathing hell. We were admitted into the ICU, spent a few days there before being transferred to Riley’s via ems. Our amazing pediatrician did everything right, everything she could, she probably saved Havens life, but she was still getting worse by the day. Swelling everywhere and the redness was spreading like wildfire over her body. She was so lethargic and still in an immense amount of pain. Once we got to Riley’s we had a team of Infectious Disease, Dermatology, and Developmental peds all working together to figure out Havens diagnosis and treatment plan. It was such a feeling of relief when we started to get answers. I finally saw the light at the end of tunnel and felt like I could breath again.

Apparently I didn’t make it clear enough on my social media posts where I stated multiple times what Haven actually had. STAPH SCALDED SKIN. Caused by STAPH. IN HER BLOOD. It wasn’t treated properly before, she never received a complete dose of antibiotics. Her kidney and liver couldn’t properly filter out the toxins so as they seeped through her body and came to the surface, the toxins were burning her and killing her skin. Now all her skin is Falling off. You know what that staph in her blood was headed for next? SEPSIS. Let that sink in. We clear now? K good. While I’m at it, for the thousandth time your perfect self and perfect child WILL NOT GET STAPH FROM MY POOR BABY. Fack people. Educate yourself. Man it feels good to get that off my chest.

I know I kept everyone pretty updated through social media but there was so many moments I didn’t share. Moments I couldn’t put into words. Moments that bring me to tears to even think about. Moments where the pain was too intense to even begin to talk about it. Haven was sedated 3 times, each time I held her body while it went limp and tears streamed down her blank face. One of the times mucositis set in and I sat sobbing in her therapists arms while they repeatedly suctioned her out so she could breathe. I didn’t tell you about the EMS ride and the fear in the three of us while we rushed Haven three hours away, all while her fever spiked and they thought she was going into a state of hypothermia from the ketamine. Or how my mind traveled to a place I hate to go, wondering if I’d get to bring my baby back home after this. If she’d see her sister again. I didn’t tell you about the day a nurse at Riley’s and I finally got her out of bed after a week of bringing her a bed pan and lifting her body up onto it every time she had to pee. My mom watched in tears as Haven screamed and shook while we had to remove the rest of the heart monitors that were literally burning her skin and we tried to clean her peeling and burnt body as gently as we could. I didn’t share the moments when my best friends sat next to me during the dark and scary without fear of contamination from my sweet fragile baby. I didn’t share how my entire family on my mommas side rallied hard to do whatever they could for us or how my momma and uncle followed us down to Indy for fear they may not see Haven again. I also didn’t share some of the not nice and pure ignorant things people said to me, or how some people i thought were my people will never be my people again. You didn’t see Havens sensory overload meltdown the night we were leaving Riley’s, how she ripped her IV out of her foot and completely lost it, beating me while she screamed bloody murder. Or how I carried that screaming wailing child naked out of the hospital and into my car. I know I’ve chosen to make our lives and struggles public but remember… “You only see what I choose to show you.” And some of the things I choose not to show may break you, like it’s broken me.

In times like these I have struggled to see and understand God. It’s not fair for a baby to endure so much pain in such a short life, it’s hard to understand how there’s a higher power when life gets so scary. Although I struggled at times to see him, I surely felt him through all of you. We had literally thousands upon thousands of people praying for us. So many reached out, so many acts of kindness from friends and people we barely new, rather it was a coffee, a care package, or balloons for Haven. Everything big and small carried us through the week. I had a group of Matilda Jane loving women who I had never met in person until this week literally get me through. They fed me, bathed me, clothed me, were my backbone at Times, my shoulder and ear to cry on, and like so many of you did what they could to help lessen the financial burden from this month. I have an entire new group of friends that I now consider family, some that did more than my “real life friends and family. ” Because of many of you through my anger and fear I still saw God working all around us. I was wrapped in love, comfort, and Strength and we made it through the dark and scary. Havens still got some healing to to and we’ve all struggled to get back to normal but I got to bring my baby home, back to her sister, and for that I am so very grateful.

xoxo Taylor

Updates and Announcements

I feel like it’s been forever since I’ve written. I have quite a few pieces drafted up but have been struggling to post them. I started this blog to bring awareness and understanding to the Autism world, my sweet baby, and our struggles, but also as a therapeutic outlet for myself. It has helped me to be able to work through my own thoughts and feelings when I wasn’t sure how else to do so. We’ve been in a hard place lately and it’s a struggle to get through the days most days. Sometimes I feel like a broken record almost, the struggles have grown and evolved but I feel like at times I’m saying the same thing over and over: “this sucks, this hurts, I feel so alone, will this last forever?” For awhile I got in my own head and thought “people probably don’t want to hear it anymore Taylor, put your big girl panties on and just deal with it.” But you know what? If People don’t want to hear it, they don’t have to. No one makes them follow or read. But I’m going to keep writing and chugging through this hard time because this outlet is good for me and more importantly, it is good for Haven and the world around her. Ignorance is still so very prevalent, and knowledge is power. So I am going to keep teaching in the only way I know how, posting the good moments, and the ugly moments, and the in between moments. And you are welcomed to follow along or not if you choose.

In honor of celebrating my blogs two year anniversary as well as two years since I announced to the world publicly that Haven had been diagnosed with Autism I have decided to do a little recap and reintroduction/update of where we are now! Along with a little special news at the end 😊

Haven is getting ready to enter her second year of preschool, she will be attending three half days this year and will do another year of three day preschool next year. Haven is in a normal, mainstream school and thriving. She struggles with a couple small things but for the most part is performing at the same level as her peers. Some may remember that Haven was recommend for the special education preschool as she tested very below where she needed to be. Their recommendation was for Haven to spend 1/2 days there, five days a week. I didn’t love the program or those that ran it and denied their recommendations. That was my first IEP meeting, and I left crying. I felt so attacked and unsupported in my wants and expectations for my child. Autism or not my expectations for Haven are always set extremely high and the women in that room and their black and white testing had basically reduced my child down to a very low, poorly functioning, number. They failed to see the Haven behind those numbers. That was a month before her brain surgery, so she was mostly non verbal, but also struggling with pain and combatting issues we had no idea about which were likely causing her to not be able to function at her full capability. To this day I am still so happy with the choice I made, and that I fought for Haven. If there’s one thing I’ve learned in this journey, it’s that nothing comes easy. We as parents have to fight for our babies voices to be heard and needs to be met.

Next month marks Havens 1 year of being at the ABA center. ABA is not always my favorite thing, sometimes it’s really really hard but it has been a good thing for Haven. I’ve witnessed it work and believe the benefits outweigh the risk. The women that work with Haven daily have become like family to us, although they have a job to do they have so much love for her and our family. They come into our home daily to work with her, have given Haven her first hair cut, have cried with me during the awful ugly moments, and show continual support for not only Havens growth but our growth as a family. ABA is data based/driven and due to Havens recent issues I have had to begin charting Data at home so we can have a more accurate plan for Haven’s treatment. Lately she’s been going through a bit of a regression (not abnormal for those on the spectrum) violent outbursts multiple times a day and not just toward Mia, herself, or myself but her therapists, and our extended family members. That has never happened before so we’ve all been a bit concerned. Autism for us has been a lot of ups and downs and a lot of two steps forward and one step back. Right now we are going back. Due to her behaviors I wear clickers to keep track of how many and how frequent they are happening. Every time she punches, hits, kicks, or bites (etc) I click the clicker. There are mild days of 25 reads, and there’s extreme days of upward of 125 reads. I’ve felt the 125 days In my wounded spirit and soul in the past but to actually see it written out and validated with a number is a whole new realm of pain. I pray that we can quickly get to the root of this and happier, easier days are ahead. There is no worse feeling as a mother than watching your baby struggle. My heart just breaks for her, and all of us somedays.

Now for what I hope to be some happier news. For quite some time now I’ve wanted to start a social media outlet for just Haven and Autism. I feel like I do well at posting updates and sharing and what not but there’s so much more I would like to share but don’t since it’s my personal page and I feel like people may get sick of it. SO i have launched an Instagram dedicated strictly to Autism and Haven. It will run alongside with my blog but I’ll post more frequent, daily life updates there for anyone that may want to follow along. My hopes are to keep sharing and spreading knowledge, but also to spread encouragement for others going through this, to be able to help with resources some may not know about, to answer questions people may have, possibly review products geared towards those on the spectrum, and whatever else may come up. So if you would like to follow along, head over to IG and follow HelpingHavey ❤️

As always be the good y’all and thank you so much to those who have followed us the last two years and supported and encouraged us along the way.

xoxo Taylor

Mia had her tonsils out last winter. Super easy, puked a couple times coming out of anesthesia, ate a McDonald’s smoothie and a breakfast sandwich after, laid in bed for maybe a day. Didn’t need pain meds hardly at all and never got the stinky breath because she just kept going and eating and being a boss as usual. Here we are a year and a half later, Haven had the same procedure, plus her ears redone for the fourth time, and it’s like a whole different procedure. It’s definitely not brain surgery, but it feels like brain surgery all over again. What is generally an outpatient procedure has turned into a 4+ day stay.

It’s been three days since Haven has ate, drank, or talked. She is going through a regression as we call it in the special needs world. She’s now gone 48 hours without pain meds. She’s very lethargic and clearly miserable. We cut her IV fluids yesterday morning in hopes it would make her hungry or thirsty but she ended up with a terrible headache and more pain, and the beginning signs of dehydration forcing us to hook her back up. She shows little to no signs of beginning to eat or drink or take meds. She is scared. She is sad. She is in pain. And I’m right there with her. There is nothing worse than this part of my mom job. I hate trying to force Haven to do things against her will. I hate feeling like we are violating her basic rights as a human. I hate always having to be the bad guy. I hate that I can’t just reason with her and talk her into eating, drinking, and taking meds like I would her sister. I hate that SO many of us have tried everything and we are getting nowhere. One of our nurses left the last few days apologizing because she feels like she is no help. Even though she totally is. She makes sure I have water and snacks, she tells me good job, and she scolded the PA that came in like a bat out of hell and upset my already very fragile girl and her momma. She may not be able to get Havey where we want her as quick as we want her, but she’s definitely been so much help. They all have, you can tell from their eyes and hearts that they want so badly to help my sweet, but very stubborn baby.

High functioning Autism is such a complex but strange thing. It has ways of making you forget it even exists, just for it to come back roaring louder than ever, wielding you 10 feet back from where you were. We spent weeks preparing Havey for this, reading her social stories, talking to her about it, trying to keep her informed and aware so that the shock would be minimal. But no matter how many times I go through things like this with Haven nothing fully prepares her or myself for that matter. Haven isn’t Mia, or any other child. Something so routine for most has once again been traumatizing for us both and so SO hard. And there’s not a single thing I can do about it. It is the most helpless, shitty feeling as a mother. I love this child so immensely. I have fought for her relentlessly. I rally and raise awareness for her every chance I get. This is why. Haven is beautiful, and intelligent, and loving, and vibrant. But even being all those things Haven still has Autism, she’s still recovering from PTSD, she still struggles with many things most people and parents take for granted. I lay in this hospital bed holding her, wishing we could go home, it’s almost Mother’s Day. I want to be home with both my girls, a decent meal, and a glass of Chardonnay. Instead I keep reminding myself to show grace and patience and give it to God. Willing myself to think of how scary this is for Havey, how painful this is for Havey, how hard it must be to be so scared and to feel no control of your body or surroundings. To have all these nurses and doctors constantly messing with her. She’s always been her own person on her own schedule and I have to remind myself that that’s okay. Life can wait, it will wait, right now she needs this slow down. So we shall wait until I can safely and confidently take my sweet girl home.

Next time you see me post or hear me talk about Autism Awareness, the struggles, the joys, the pain and hard times that come with parenting a special needs child, or next time you see me so overwhelmed and outspoken with anger or emotion because of the people and circumstances we deal with in this life try to put yourself in our shoes. Consider what your life would be like if you did this day in and day out. Maybe you’d be more apt to showing a bit of compassion, understanding, or empathy. This job is really really hard sometimes, grossly underpaid, extremely overworked and very very emotional and exhausting. I’m doing the absolute best I can even on the days I feel like I don’t know what I am doing. I can say without a doubt that many couldn’t do this by themselves. God picked Haven to be mine for a reason.

As always be the good y’all.

xoxo Taylor

Progress & Plateaus

There’s a video going around right now that i shared last week. I know a couple other special needs mommas shared it as well probably because it seriously just hit home so hard for so many of us. It’s about as spot on as it gets in the world of special needs. A lot of things she touched on are things we’ve recently been talking about in ABA. What our future with Haven holds, what to expect, what happens as she continues to grow, get bigger and older. There was a time when they told me my child wouldn’t talk. We actually did a brain stem hearing test because we were hoping she had hearing problems that could be helped, rather than the reality of Haven being non verbal due to her Autism diagnosis. When that came back Normal we began to learn sign language as a family. We figured that would be our life. That was our new reality. I was told Havey would never normally thrive. She would forever struggle to keep up with her peers. She would forever be violent and hard to handle. That was all our reality. Today Haven is fully verbal, we still do speech because she’s got a lot of catching up to do, but she talks. A lot. She is thriving in ABA and at a neuro typical preschool where For the most part she is able to keep up with her peers and enjoys going. All those things they told me she would never do, she is doing. Praise Jesus and our amazing doctors, therapists and neurosurgeon. But she’s also still doing a lot of the things I was told she would forever do. And some days I still struggle to come to terms with that.

Haven has autism. We feel very blessed that she’s higher functioning, but Haven will always have autism. A lot of our pain and struggles are things we will struggle with for life, no amount of therapy or ABA will cure her. Help, yes. Cure, no. We have goals, we continue to meet many of those goals but while we set them we also have to be honest with ourselves about our future and the reality of raising a child with autism. We will hit a point where Haven plateaus and that will be the best and farthest we get with some struggles. Somethings we are just going to have to deal with and make the best of. Havens going to keep growing and getting bigger and stronger. Right now she’s 1/4 of my size, I’m able to withstand her violent meltdowns, and try my best to keep herself and myself safe during them. As she grows that won’t always be the case. Right now the emotional pain is worse than the physical, but I know a day will come where those tables turn. I won’t be able to keep myself safe while trying to keep her safe, and that is a very scary future to have to look forward to.

As many of you know we’ve been in therapy now for two years. We just hit our 6 month mark at ABA and about a month ago we started in home ABA. We average about 30 hours a week right now. I thought maybe our rigid ABA schedule would be coming to an end or slowing down soon but after a talk with Havens BCBA that is not the case. We have at minimum another year and a half of ABA left, and then we will assess Haven at a school level to see if she will need an aide to go with her to school. It’s difficult to think about doing this rigorous schedule for another 2 years. It feels a bit like signing my life away, but I absolutely know it is what is best for Haven and her future and I will do whatever it takes to support and help her. We will hopefully cut some of her hours during the summer so she can enjoy being a kiddo and the extra time with her sister being home.

Haven has come a long way in ABA, there’s now a few other kiddos there that she looks forward to seeing each day. In home ABA was a bit intimidating for me but as I’ve become more comfortable with it it’s definitely been helpful and I like seeing first hand the relationship Haven has with these women she spends so much time with. Some days are easy and everything goes smooth. Some days Haven has melt down after meltdown and I’m counting down the minutes to wine o’clock and bedtime. The hard days I have to remind myself that there is a rhyme to our reason. Thanks to Havens therapists and myself we have successfully (knock on wood) potty trained Haven. Anyone that knows anything about special needs kiddos knows this is HUGE. Havens therapists took a special course on how to approach it, and in true Haven form it wasn’t working. We tweaked it a little and laid off being so intense and she started to get it. The treats definitely helped too. She’s a candy driven girl. Mia has been such a big help too In helping and cheering Havey on so she gets a reward every time too. She really plays a vital role in Havens life and success, and I try hard to recognize that any chance I get.

Some of you know I was accepted to write for a bigger blog, I am not allowed to publish the posts I write for them here but will link them so those who want to read them can. They will be a little different than my current writing as they assign me topics. I’m very nervous but excited for this opportunity to advance my writing.

Thanks for following along with our journey. As always, be the good y’all.

xoxo Taylor

Every rise must fall

Happy New Year y’all! I cannot believe how fast this past year went and it’s 2018 already. Last year was such a hard year for us with losing my grandma, such a vital person in our lives then Havens Chiari decompression surgery only a week later. I learned the difference between friends, family, and acquaintances and then our car accident ended the year on a pretty crummy note but we also had many highs as well. Mia started kindergarten, Haven started preschool and ABA, Haven really started to come out of her shell she’d been trapped in after healing from surgery. I was able to become a stay at home momma, my momma got a beautiful new smile, watching my brother marry the love of his life and a girls trip to IU with my favorite ladies to visit Maddie. I got to watch my uncle start his own amazing business, and Matthew expand the league. 2017 just held so much for us, happiness and heartbreaks. Highs and lows.

Reflecting on the year behind us and all the ups and downs helped put into perspective something I have been struggling hard with lately. There will always be ups in downs, but for every fall there will be a rise, and for every rise there shall be a fall. Life with Haven is like one never ending roller coaster, just when you get through the lows you peak at the highest, forget about the lows until life drops you back down and you wonder if you’ll ever get that high again.

Since Havens autism and Chiari diagnosis’s we’ve had many ups in downs. She regressed tremendously at 18 months, leading us into the Autism world, then again after surgery while she still had swelling in her brain and was recovering but she came back stronger than ever, we’ve been in a bit of a bliss since. Not to say there wasn’t bad days, we still had our fair share of them but the good far outweighed the bad finally and that was a win in our book. Here we are now though, back in a low, a very very low low. Ever since our accident Haven has steadily gone down hill, every day is a violent meltdown again, some days lasting upwards of an hour, it’s a constant battle with her, her behaviors, and with her eating and her sleeping. Her extreme repetitiveness has returned as well. We don’t know if it’s a growth spurt, terrible threes, or damage from the accident. She will be having another MRI and CINE flow study to hopefully figure it out and rule some things out. This has been not only heartbreaking but exhausting for me. We’ve had to leave events, skip out on parties and outings, and kind of go back to our old ways and bag of tricks. When one regresses, we all do. On top of all that we are attempting potty training and what a nightmare it has been, dozens of dirty pull ups and big girl undies and she still has yet to potty in the potty. We aren’t sure if she’s just scared or if she’s not understanding the concept. Kids with Autism are known to be hard to potty train and late at having success and kids with Chiari are known to have problems controlling their bladders so we really just have no clue. We just know it’s not working. Next week she will start what is called intensive potty training at ABA, something I’m not the biggest fan of but so far nothing else is working. I just keep praying that something gives and we start to work our way back up what feels like a very big mountain.

We meet with Mia’s cardiologist in a couple of weeks, something that has been weighing heavy on my nerves and heart. It’s hard to fathom that I carried, loved, and nurtured these sweet girls for 9 months and my body created one girl with a disability and a brain malformation and another with a congenital heart defect. 2/2 on medically fragile babies. Some days i feel such guilt thinking I did this, my body did this. Which is usually followed by fear of what would happen if I had another? With my Hashimoto’s disease and already losing one baby I am high risk as it is, factor in the conditions my girls have and that’s a pretty scary thought. Don’t get me wrong, I ADORE my babies. I wouldn’t trade them for a single soul, I know God chose me to be their momma but I don’t know if I could handle having another medically fragile or disabled child. There’s days now I loose sleep wondering if both the girls are getting all that they need from me, telling myself I have to figure out how to do more or better. But there’s also days my mind wanders off to having a sweet baby boy. Obviously Matthew and I have talked about someday having one of our own and if it happened we would be overjoyed but I know I’d also be extremely fearful. As a mom you want your kiddos to be the absolute best version of themselves. The healthiest, the smartest, the happiest, the Everything. When one or more of those things aren’t being fulfilled it leaves a gaping whole in a mommas heart.

I hope you everyone’s year is starting off well! I will update on the girls as we know more. Thanks for listening to my late night ramblings, tonight’s one of those nights my thoughts overcome me and sleep is hard to come by. Say a prayer for my girls and send us good vibes.

And as always be the good y’all.



Heartaches & Updates

Wow what a week it has been. My mind is still spinning from all that has happened lately. Matthew has been out of town for work so it’s just been the girls and I. We’ve all have had a cold that’s been kicking our butts. I swear its just been one thing after another. The girls and I spent most of the weekend recovering from our week. We put the tree up yesterday, started our advent calendar (a day late) and Mia and I ended our night with a mommy and Mia date night. All so very needed after this week.

I know most of you know the girls and I were involved in an accident earlier this week. Someone hit us, as we were coming home from picking Mia up from school. I literally felt my girls lives lflash in slow motion as I watched it happening and knew there was nothing I could do. The panic and fear that took over my body was indescribable. I could see my girls crying, Haven screaming in hysterics and I was literally frozen. Just sobbing and heaving. Wondering if she was screaming from pain or fear. In compete shock as people started flooding around us. I’m very thankful for the first responders and many of the bystanders, I couldn’t function and they did many of the things I was unable to do for me. I am struggling to not let myself be completely consumed with anger towards the woman that hit us. She said she couldn’t see, so she just gunned it. What a terrible, reckless, selfish excuse. That’s like me saying I couldn’t afford the Louis I’ve been eyeing, so I just took it. Totally not acceptable. She was completely unaccountable and lacked remorse for her actions. For the fact that she could have killed both of my girls, but especially Haven. Every day since I’ve found out Haven had Chiari, car accidents have been at the top of our list of concerns. She has instability in her neck and her chance of being internally decapitated is a real life worry, not just that but we’re not even 6 months out from surgery. A blow like that could mess up everything we’ve worked so hard to fix. Haven had to be sedated and required a CT which we try so hard to avoid due to the extremely high radiation levels of CTs, it was all very traumatic for my sweet girl who already fears hospitals and doctors. Right now I hate that lady. I know that’s not the right way, or Godly way to feel but that’s the real way I feel and I hate that too. In the same breath I also feel extremely grateful though. I know I praise an awesome God. I know I have a handful of the best angels watching over us. For that I am thankful, we had very sore bodies but I got to go home with my babies in one piece.

Haven has been in ABA for about 6 weeks now, she’s started to get more comfortable with all of the ladies there and most days goes without complaint, and is so excited to see Matt or I at the end of the day. For awhile she was doing pre-K and ABA but as of this week she is now full time ABA. She is making leaps and bounds there and learning so much. Haven has pretty intense separation anxiety and ABA has definitely eased that some. She knows that momma will come back for her. She’s starting to get more comfortable there so they have begun to get a taste of what I often deal with at home. She has been fortunate enough to have the whole building and all the ladies to herself so far, but there will be more kiddos coming soon so it will be interesting to see how she transitions into not being their only focus. Anyone that follows us knows I’ve been pretty on the fence about ABA for the last year but so far I think it has been very good for Haven. They have set goals and plans for her and work on many of her struggles. I am in constant communication with her therapists and I always have the final say if there’s something I do not agree with or do not want to change. Which so far hasn’t been an issue, thankfully. I’m happy I have kept an open mind about different treatments for Haven, I don’t love all the hours that ABA requires and by the time Haven gets home she is so exhausted and mentally and emotionally spent from trying so hard all day that she’s usually very hard to appease and our nights are rough but I’m hoping that will get easier, for all of our sakes.

I know some of you know, but many of you don’t know that about two months ago I made a very tough decision to walk away from Applebee’s. I had been there going on 9 years, I have friends there that have grown into family, I’ve carried two babies and lost one there, I met Adam and Evan there who both forever molded my life, I have regulars there that have shared in many of my girls and my own triumphs and falls, I’ve had some great times and some terrible times there, I loved serving. It was a nice getaway from our hectic life and the money couldn’t be beat, but it wasn’t what it used to be. There were some issues there that were making work unbearable, and with dealing with what I deal with at home and then going in to a place that was literally sucking what life I had left, out of me, all while missing so much time with my girls, it just wasn’t worth it anymore. I had to walk away. That was a terrifying thing for me to do, way out of my comfort zone, Applebee’s is basically all i have ever known but it has been such a nice, much needed break. My girls were both struggling with me being gone many nights and I can tell a difference in them, especially Mia, now that I’m home more and our life is a little more structured. I spend all week long running Haven to and from therapy and appointments, Friday mornings I help out in Mia’s class (which I love) and in my spare time I help Matt out with the league and running when I’m needed. Matt and I have been able to make more time for date nights and our relationship in general, which has definitely strengthened us. Although I miss the adult interaction and seeing a couple of my girl friends more, it is nice to be able to focus on my family more. My girls are growing so fast, they are only babies for a small time, I want to be able to be there for every single moment now. I’m thankful for a boyfriend who always supports my girls and I and what’s best for us.

I am asking for prayers and good vibes for my Mia. About a year ago our NP discovered a heart murmur in Mia, she had an echo done and they discovered that Mia has a congenital heart disease, more particularly an ASD, also known as an Atrial Septal Defect. Atrial Septal Defect is a hole in the wall that separates the top two chambers of the heart. We have kept an eye on it over the last year, last Monday she had another Echo done and her hole has grown by 25%. Not the news we were hoping for, so next Month we will see the pediatric cardiologist that has been following Mia’s case to see what he thinks is the necessary next steps. I am trying to stay calm and positive. Having one child who has already had brain surgery this year and it being so traumatic, I cannot even think about my other baby having heart surgery. I believe strongly in the power of prayer. So please say one for my Mia bug.

Thanksgiving has come and gone and it was so much harder than I thought it would be. This year was my families first year without my grandma. You could feel the sorrow in the room, and when it was time for prayer there wasn’t a dry eye. We were blessed to have my grandma for as long as we did. She truly was the best, most perfect woman this world has known. I know she was smiling down on all of us, and happy we were together, but Holidays will not be the same without her, her no-bakes and fudge, her telling me I was going to get fat for eating three rolls, and the pure joy that radiated from her smile watching her family laugh and love together. Cherish who you have, hug them tight and tell them you love them.

As always, be the good y’all.



The season of change

“But what I really mean to say is that I hope you aren’t held back because of a number. And that you don’t rush into things because it feels like time is slipping by. I hope you do what’s right for you. Hold on. Slow down. And breathe in. Your age is your age. But more importantly, your life is your life. Don’t change your journey so that it matches someone elses. We need to walk different paths so the whole world can be explored. revel in the differences. And enjoy where you are.”

Lately I’ve found myself lost in what seems to be the season of change. I’ve never been one to adapt to change well, I hate the unknown. I’m a planner, if I know what’s ahead I can properly prepare myself for it. I struggle with putting my faith in Gods plan and going with the flow. Many days I feel like the walls are closing in on me and I have to figure out every aspect of my life and the girls and our future right this second. I have to remind myself to breath, trust in the plan, and take it day by day. I know I’ve spoke on the personal change this journey has had on me in the past, but I don’t know if I, myself, have fully comprehended the evolution Of my mind, body, and soul. I find myself questioning everything around me, yet practicing silence. I feel lost at where we are in life. So much has happened over the last year and a half I don’t know if my mind and body have fully worked through it all. I find myself going through the motions, yet not fully feeling the emotions. And now that the girls are in school this is extra hard. The changes, Mia in full time school, Haven in preschool, personal changes. I have struggled to catch my footing, to feel deep inside that what I was doing was right for me and my kiddos. That what I was doing was right by God and myself and the personal growth I’ve worked so hard to obtain. With Mia now in kindergarten our time together is limited, I feel like I’ve been missing out on her and our bond was suffering because of that. Mia gets the short end of the stick so much in our house, not intentionally but with Haven and her needs and personality sometimes it is enevitable and that stinks. I carry an extreme amount of mom guilt because of it. I want both of my girls to feel equally loved, to know that they are both my world, and so so important. I don’t want either of them to ever feel second to anything, because they are not. They will forever be the princesses in which I continue to build my castle for. 

On top of struggling with all life’s recent changes, Havens Autism and its challenges have been more prevalent lately. It seems to always be a roller coaster, one step forward, two steps back. She had one bad day at school and now panics at the thought of going back. I picked her up one day to find her toe walking in her shoes, we’ve worked hard to get past that and it usually never happens, especially in shoes, anymore, but you can tell she’s been struggling to regulate her sensory needs. I look down in the shower lately to see her lining all her toys up. Again, a sight I haven’t seen in awhile but one of the most tell tale autism red flags. Haven had a dentist appointment this month, the first one since the really bad experience we had. As anticipated she wouldn’t let the dentist or anyone near her or her teeth, which wouldn’t be such a big deal but We’re pretty sure she has a cavity in the back and she struggles so much to eat that we really can’t have this holding her back. Instead of holding her down against her will and prying her mouth open like the last “lady” they said no big deal, we will try again next month, but with sedatives. Not ideal, but hopefully it works. I’m thankful for a new dentist who is understanding of Havens needs and the lasting impression their experience with her will have on her life.

Havens ear infection set us back quite a bit last week. We spent every other day at the doctors. The thing about Haven is her pain threshold is so high that I think her ear was pretty bad before I was aware there was a problem. She’s so used to living in chronic pain from her Chiari and migraines that an ear infection is nothing to her. Thursday we spent the morning with our ENT. We decided it was best to suction her ear out so it could get better and heal. We didn’t have time to sedate her so I held her down while the ENT did it. I hate always having to be the bad guy. Every single appointment entails us holding my sweet girl down against her will. And every single appointment we both leave crying. The good news is she is on the up and up, and after a much needed weekend away filled with rest, good food, beverages, and my three favorite ladies, so am I. We go back next week to check Havens ears, her hearing, and any damage that may have been done. 

This morning Mia said ” you know ______ can go potty on the potty, not just pretend but actually go. She’s only 2, I don’t understand why Haven can’t.” Insert. Long. Long. Sigh. This is one thing I struggle so hard with. I find myself forever struggling to have and keep friends with neurotypical kiddos. I hate the constant comparisons. Even if they aren’t intentional. I literally fight the urge to not smash my head into the table when people say things sometimes. And I know not everyone means it in a bad way, some people really just don’t get it. Havens 3. No matter how many methods we have tried, bribes we have offered, undies, pull ups, you name it, she has yet to potty on the potty. She panics at the thought of it. It scares her to even be without a diaper. If you’re one of those magician parents feel free to come use your magic on her, but until then, I’ll be changing diapers and loud sighing to myself. She also still has her paci most of the day. Her paci is her comfort blanket so to speak, it meets her oral sensory needs while keeping her calm. She may go to college with it at this point. Kudos to you and your child for loosing it at 1 or 2, good for you and your child for being fully potty trained at 18 months. But my child is not your child, and she’s mentally and physically not there yet. She may not be until she is 5 or 15, and that’s okay. Exhausting, some days discouraging, but okay. Every kid Autistic or not, moves at their own pace. While you’re over there cheering about your potty trained, paci free, perfect kiddo, I’m here praising Jesus that Haven finally ate a meal for the first time in three days or gained .4 ounces in the last 6 months so we can keep the G tube talk at bay. Small victories.

On a brighter note after three long months of waiting, going through the intake process, and haggling with insurance Haven has finally gotten a full approval for ABA at the new Children’s Autism Center opening in Angola. If you have followed my blog and our journey you may remember I have toured quite a few centers but have struggled to take the leap. I didn’t love most of the centers, and honestly ABA scares me. Leaving Haven for so many hours a week with these people scares me, ABA can be up to 40 hours a week for those that don’t know, that’s a giant obligation and a pretty intense one at that. I am very hopeful that this is a step in the right direction for Havey and our future. Please send good vibes and prayers as this will be a major adjustment for us all. 

One thing I am constantly reminded of is how lucky i am to be surrounded by the people I have in my life. God has really blessed me. I am confident he has given me the people he knew I needed to get through whatever this life throws at me. So many people constantly check in and offer a helping hand, Matt helped take some of the hours the nights Haven didn’t sleep so I could get a little rest. My small circle of girl friends always offer advice and keep me sane. My momma, gram, and sister loved me even though I wasn’t 100% this weekend. Forever and ever thanking you all and God for the grace you exhibit towards my family and myself. Keep being the good y’all.
xoxo Taylor 

“As for my girls, I’ll raise them to believe they breathe fire.”

Recently I had a situation that kind of left my mind spinning. A couple girls that honestly the only accurate description I can think of is sad, and young and very very weak, saying not nice things directed at me. I was basically in shock.  I am a 26 year old woman, I’ve been out of high school for so long now, the women and girls I surround myself with never act like that. I struggled to fathom that there are girls that still do act like that. In my experience confidence is quiet and insecurities roar. These girls roar. Loud. The whole thing got me thinking though of how blessed I am to be surrounded by such strong, supportive, and loving women. How I am not used to seeing that because I don’t see it often. I run with a strong tribe.

On any given day, at any given time I can put out a cry for help or a need and there’s 10-20 women, some I barely know offering their support, help, or advice. Some of these women are just social media followers, or started as that and have literally been willing to drop everything to help my girls and I. That is AMAZING y’all. I often hear people talk poorly about social media  and I get it. Sometimes it’s the same mundane things, but sometimes it’s super amazing things. Strangers rallying to help one another, whether it be a gofundme, tangible donations, emotional support, it is a constant, much needed reminder that there is still so much good in this seemingly bad world. 

I have the absolute most amazing best girl friends, they are few, but mighty. Quality over quantity ladies. These are women who do whatever they can to help the girls and myself. They keep me sane on days when I’m about to loose it, they give the best advice, they tell me the truth, not just the candy coated what I want to hear nonsense, the actual truth. They bring coffee when I need it most and presents for the girls on Birthdays and celebrate every milestone with me. They’ve been through all life’s heartbreaks and always help to build me back up. I know I never have to worry about them turning on me, or telling my secrets. I know at the end of the day that they are 100% there for me in any way they can be. Girl friends like this are rare, cherish that, and be that when you can be. 

I see the most selfless single mothers that give every ounce of themselves to provide what their children need both financially and emotionally. They give even when they have nothing left to give most days. They do this day in and day out with no thank- you, good job, or keep it up. They do this because they have to, they have no choice. And even if they did have a choice, they would still do it. They choose to put themselves last every single day. They drink and reheat cold coffee five times a morning, they rarely eat a warm meal and usually never sitting down, they go without while making sure their babies have it all. They teach and show their children unconditional love. Love that will stick with them all of their lives. Love that will create strong women out of little girls.  

I see women who have faced the unthinkable, giving their babies to God far to soon, being so strong. Unfortunately there’s a few of these mommas in my life but I will never forget when Evan passed. We had just found out we were expecting Mia shortly before and going through that with the Weavers taught me so so much about being a mom. About raw unconditional love and a mothers love. Dana has been one of the biggest role models in my life as a mother. Watching her continue on, loving her earthly babies and now grandbabies while being without her baby has been both flooring and grounding. She is a constant example to my Mia of what a strong woman is.Always be thankful for God and all you have. I cannot even fathom what these moms feel and have been through but they are so selfless and inspiring. The first to offer a helping hand in whatever way they can. Their love for others is so strong they continue on. 

I see great strength in women who have suffered abuse. Whether it be mental, sexual, or physical. It could have consumed them, hell at times I’m sure it has, but still they continue on. They fight for themselves and for other women. They fight for our voices as women. They fight to expose the absolute horror that some women have gone through. They fight to keep our daughters safe, our friends safe, our mothers safe. And even when society says to pipe down and stop fighting they keep fighting. That is strength, that is selfless, brave strength. Those women are soldiers in this war on life, equality, and safety. Thank you to these women for fighting for my babies. 

I see moms and women running businesses, some that supplement the home, some that fully support the home. They juggle children, housework, sometimes a normal 9-5 job, and their own business on the side that they have grown from the ground up. They take risks to try to help better their family. Risks that many of us are too fearful to take. These women are girl bosses, raising the next generation of girl bosses. 

The large majority of our doctors, therapists, and specialists are women. Not because I am sexist but because I think it takes a special person, one who can be sympathetic, warm, and loving while making major impacts in families and children’s lives to do their jobs and in most situations that tends to be a woman. Our neurosurgeon, the tiniest but mightiest woman I’ve ever met. I don’t think this woman sleeps. There would be days in the hospital she’d come visit Haven at 10pm before heading into another surgery. I don’t know she does it. Our pediatrician that fought so hard to find Havens missing piece, a woman, a mother at that, who refused to give up on my baby. Our Geneticist, Autism Specialist, Sleep specialist, all of our therapists, Eye specialist, every single one of them are women. Some I requested, some was luck of the draw but nevertheless they are all amazing, strong, compassionate, brilliant women. 

I see special needs mommas. Some of these are birth moms, adoptive and foster moms, or grandparents who have taken on the duty of mom. Whether biological or not they are all equally important and amazing. These moms are superheroes in my eyes. They juggle doctors appointments, therapies, ABA, non stop evaluations and paperwork, hours and hours of driving, usually on very limited sleep. They go to bat with insurance and fight endlessly for their children’s needs. They are constantly doing research, trying to inform others, and second guessing if they are making the right choices for their littles. They are overworked, underpaid, misunderstood, yet still remain positive. Some of these moms have gotten me through my scariest days. They encourage me to push forward, and make me feel a little less crazy for doing so. 

My goal as a mother is to raise strong, independent, smart girls that turn into strong women. I do this by surrounding myself with strong women. By being a strong woman. By keeping the girls aware and alert to the world around them, the struggles women face, and how we overcome them. Our jobs as women and mothers are to uplift other women. To teach our daughters to uplift and love other girls. Your relationships and friendships should not feel like an episode of Gossip Girl, and if they do you should reevaluate yourself and integrity as a woman, as well as those around you. 

Be the good y’all.

xoxo Taylor 

The Sweetest Things 

There’s something about being a girl that even long before you are expecting or have kids fills you with hopes and dreams of the life you’ll have when those dreamt about babies someday become reality. Then you become pregnant and all those dreams start to really come alive, you find out you’re having a girl and those dreams explode into thoughts of dance, American girl dolls, bows and braids, and everything pink. That sweet baby girl comes and you begin to live out your dreams, until one day your dreams comes to a complete hault. Things start to change, doctors and therapists start to use words like developmentally delayed, Autism, and Apraxia, and as quickly as those dreams formed they begin to fade away. Then comes the talk of Chiari, syrnixes, and brain surgery. It all becomes grey and fuzzy. You forget you had dreams. That there was a life before Chiari and Autism. It’s not that you give up on your child, your dreams just shift. The things you used to take for granted become your goals. Honestly just getting through the day became the goal most days. 

Things start to settle, you become more aquainted with your new found Role in life.  The dark and scary becomes a little less dark and scary. You begin to see the light at the end of the tunnel. The big picture starts to get bigger again. You set new hopes and dreams. And then you divide and conquer. Day by day, Dream by Dream. 

Tonight I watched my sweet baby girl dance, just like I’ve always dreamed. I remember watching Mia dance while I was pregnant with Haven and holding my belly, dreaming of the day it would be Havens turn. Many times I’ve questioned if Haven would have the same oportunities as Mia when it came to life experiences. Adam and I push and allow Mia to explore different hobbies and sports in hopes she will find something she loves. It’s always stung a bit wondering if Haven would get those same chances in life. But there I was tonight, tears streaming down my face watching my sweet, Autistic, beautiful baby girl who’s 3 months post op of major brain surgery,  dance, and laugh and twirl just like the other little girls, just like her sister has done. For the last two weeks I’ve watched in awe and amazement as Haven has gone to preschool and now daycare, against the recommendations of some, beating the odds. She has had zero meltdowns or issues while there and is SO excited every time I drop her off and pick her up. I am able to hear my sweet girl tell me every detail of her day, the same girl that couldn’t talk a year ago is now putting full sentences together. I remember being told she may never be fully verbal, would likely need to use PECS, and sign language to communicate her basic needs. Take that Autism. ​

​These achievements don’t come at just the hands of Haven and I’s list of high hopes and dreams, though. These hopes and dreams are able to be met because of others who show love and compassion to Haven and her needs. The mainstream preschool director that didn’t hesistate to welcome Haven with an open heart and arms. The dance teacher that was so excited to have Haven in her class and promote the benefits of dance and how it has helped other kiddos like Haven. These people could have hesitated, they could have said no, they could have just taken what some days will enevitably without a doubt be the easier choice but they didn’t. They gave Haven a chance at normalcy and fitting in and meeting our hopes and dreams, there isn’t words to express my level of gratitude for these people. 

I think there’s parts of me that will never fully heal from the trauma we’ve endured, somedays it’s still all consuming. But I also think that with every dream and goal we reach the pain will lessen, or at least I hope.  Nothing fills a mommas heart more then watching her tiny humans grow into tiny young ladies. 

Keep being the good y’all. 

xoxo Taylor 

What I’m loving this week 

I’m gonna do things a little differently this post. I usually post about our hectic life and struggles with Haven. This week has been freaking hard, I have struggled to stay positive and find the good in every day. So I’m gonna write about something different, things I love and enjoy and applaud. So sorry if it’s not your thing, but I’d like to branch out and give it a shot. 

Yellow Cup. What is Yellow Cup? Well y’all Yellow Cup has been the highlight to my Sunday and easily some of the best coffee I’ve tasted, and thats coming from a die hard Starbucks lover and extreme coffee fiend. There’s something about the first taste of coffee, hand roasted by someone you adore and love, who you know is making it with love that makes you enjoy coffee like never before. My uncle Mitch is following his dreams, such an admirable thing to do and starting his own coffee business and let me say it is AMAZING. Not amazing like he paid me to write this amazing, amazing like I paid for 2 bags and a mug and want to shout it and share it with the world. It is so stinking good and I’m such a huge fan of shopping small, especially when I know who I’m supporting. If y’all need some coffee, a mug, French press, a grinder, whatever it is, let me know. You will not be disappointed, I promise. 

Atypical. Atypical is a fairly new Netflix original series. It is based around a teenage boy who has Autism trying to adjust to the neurotypical world, high school, dating and his families joys, concerns, and struggles along the way. I am a member of quite a few Autism support groups and Atypical has been a contversial subject in many of them lately. Many parents, and people with autism speculate that the show isn’t able to be an accurate depiction of life with autism due to the fact that none of the writers or actors are autistic or have hands on experience with those with autism. Although I can see where they are coming from I think the show is doing the best it can to express some of the very real problems and concerns us parents and people with Autism deal with. Although it is not spot on with Haven as the main character is a boy, teenage at that, we can’t relate on many levels and I have enjoyed the shows protrayal of our very real reality. If you are in need of a new binge show, check Atypical out. As I’ve said before knowledge is power. 

My tribe. I know I’ve said it before but I’ve got some pretty awesome people in my life. I have a couple best friends I wouldn’t trade for the world, they are literally always there. Whether I am stressing, complaining, or praising I can always count on them. I have an awesome sister in law who picks up the slack and is my better half when it comes to our kiddos, we make a good team and for that I am ever grateful. I’m lucky to have a momma that is always there too. She’s my go to call when I can’t stop crying, she keeps Haven even if she screams for an entire hour, my farmers market buddy, and everything in between. My grandma and grandpa, they are always so encouraging and uplifting. I looked over in the middle of a hard, violent melt down with Haven tonight to see my grandpa crying watching me attempt to calm the storm. It’s not often men acknowledge or sympathize with our struggle. It’s hard to see others feel our pain but I’m so thankful for people who care. It’s  crazy how some people drop off, phase out, or seem to have more important priorities, but I’m grateful God always seems to send someone to step up when I need them most. 

Detour Fashion Boutique. If y’all haven’t heard of or shopped Detour you are missing out. It is my go to Boutique for the perfect dress for bridal showers, vacation essentials, and every day staples to my closet. I seriously find myself wearing one of Adies handpicked fashion choices every day. Her prices are amazing, she is so helpful and sweet, and there really is something for everyone there. I’ve gotten Mia shirts there, accessories and clothes for myself, gifts for others, seriously the possibilities are endless. Detour really is a hidden gem in Hamilton. Again, shop small y’all. Do your part

Design for All: Cat & Jack Adds Select Sensory-Friendly Pieces for Kids. Every momma loves Target, it’s like my mini vacation from home. Especially if I’m lucky enough to be able to sneak in a trip alone. Well Cat & Jack, a fairly new brand at Target, has made it easier for those on the Spectrum and many of those not to be able to dress both comfortably and cute. This line was created by a designer who has a 7 year old with Autism that struggles with sensory issues. Many kids with Autism or other sensory processing issues struggle with seams, tags, and embellishments that can be a bother. Haven has both an autism diagnosis and a Sensory Processing Disorder diagnosis but honestly Mia is my hardest one when it comes to sensory issues with clothes, tags and seams in clothes make her LOOSE it. Grateful Target has considered this very big and real part of their clientele and is offering it at a price point affordable for all. It is not a huge line at this point and only available online but I have high hopes of growth as more people become aquatinted with the brand. 

Last but certainly not least is the Autism Acceptance Walk. I cannot believe its that time again already. This time last year was our first major outing for Autism, I had just announced to the world that Haven was Autistic and now here we are a year later! My best friend and I will be walking with the girls, they have so many fun and awesome things to do there for everyone! I encourage anyone and everyone to come walk. Walk for Haven, walk for that little boy at church, walk for complete strangers! Show your support, acceptance, and love of our sweet babies! Anyone is invited to join us! 

That’s all for now, let me know if y’all are interested in more of these. As always lots of love and good vibes, do good and good will be done unto you. 

xoxo Taylor