Hey Y’all! 👋🏻
My name is Carrie and I fill the role of many titles.
Some of my favorites include • Mama, Wife, Daughter, Sister, Friend, Fitness Fanatic, Mama of a Sanfilippo Syndrome child, Pup Mama & of course you know I’m a Jesus Lover. ☀️
I’m the wife to an amazing, selfless, husband that I thank Jesus for every, single, day. I am the Mama of two, beautiful daughters - my oldest being a neurotypical (so they say 🤪) child and my youngest has been diagnosed with a genetic, degenerative and fatal disease known as Sanfilippo Syndrome. We are living the best our best lives and trying to achieve many dreams while we are blessed with our time together.
I was blessed to grow up in the beautiful state of Georgia ( 🍑’s do it best), where I still reside, and belong to the most unconditionally, overwhelmingly, close-knit, loving family.. and for that, I am thankful.
I hope you’re here to enjoy my love for writing about a few topics I’m passionate about. All things Sanfilippo Syndrome, raising awareness, mom life, self love, God’s Grace, fitness and of course, some food 🥰😋.
“The light shines in the darkness.” - John 1:5 ✨
As your mama, most days flow by quicker than I can grasp, but sometimes, I sit still and wonder…
Do you smile through a pain I can’t fathom? Do you frustrate easily because you can’t communicate your wants and needs as easily as you used to be able to? Do you continue to climb over things despite the pain in your joints? Do you want to sleep no matter how hard your body fights you? Do you realize you how strong you are physically? Do you wish to understand why your body keeps becoming more difficult to understand with each passing day? Do you wonder what’s happening? Do you question why things keep getting harder? Or do you continue to smile or at least try, no matter how destructive your body can be?
As your mama, I look at you, and how beautiful you are. You are big, strong, resilient, energetic, hulk-like, joyful, sleepless, fidgety, lost at times, withering in many ways, but absolutely precious.
You shouldn’t have to struggle. You don’t deserve to try and grasp on to your speech, physical activity, muscle strength, eating without choking and running without pain. You shouldn’t have to fight your own body for more time. You shouldn’t have to wonder what’s happening… and I wish I couldn’t wonder if these thoughts cross your innocent, infant-like mind… but they do.
I love you. Jesus loves you. I wish I could grasp the reasons in His plan… but I have yet to do so. The only thing I can seemingly try to process with my feeble mind is that you are far to beautiful for this earth and maybe He knows that.
You are my bestie, forever. If I could pick up your broken pieces and take them on myself, I would, but for some reason it just isn’t that simple.
Rare disease stinks. Genetically inherited disease stinks. Children suffering stinks. But suffering without a cure, is rotten to the core.
Even if it isn’t in your lifetime, we will fight until the end of ours for a cure.
Despite the pain, you smile. Despite your tears, you are easily humored. Despite your lack of understanding, you find joy. Despite your anxieties, you love so much. Despite your uncomfort, you long for touch. Despite your body fighting against you every day, you keep living to your fullest ability. Despite your clumsiness increasing, you continue to run. Despite how often you fall, you always get back up and try again. Despite your loss of many words, you continue to talk as much as you can. Despite your inability to sing your favorite songs, you still listen, smile and mumble a few words of your favorite lyrics. Despite your sensitive tummy, you love food more than anyone I know. Despite your lack of safety awareness, you see no danger and only beauty around you. Despite your fatal diagnosis, every day is a new day for you to give it your all. Despite our broken hearts, you know nothing but love.
You are the strongest girl I know, Haidyn Grace. 💜
Saturday, I had a long, sleep deprived, tear filled argument with God about where I am at, right here in this moment.
Despite all of life’s imperfections, I have everything I could ever want. I have an unconditionally loving husband, a happy marriage and two beautiful girls. My heart has always longed for a stable, joy filled marriage, children to love in the midst of it all, security in myself and the ability to find compassion over judgement.
So, WHY does my dream have to shatter with a fatal diagnosis for the child I was lucky to be able to have?
I’m sure He was standing up there thinking, “She’s not going to stop yelling at me today, but I’m listening.”
This morning while the girls were still asleep my heart settled to all of those enraged feelings on Saturday and I’m so thankful that His love never fails, because without His love, I wouldn’t be remotely close to where I am today – even with the heart break we are currently facing.
This version of me wasn’t built over night. Who I am today, is standing on a mountain that formed from earthquakes in my life revolving around experiences, insecurities, pain, abuse, anxiety, depression, health issues and mistakes of all kinds. I had to go through so much to get to the level that I am on now.
Now, I am kind. I am okay with being imperfect. I am compassionate. I try my best not to judge another. I can admit to my wrongs. I am a lover but a fighter when need be. I can hold my ground with grace instead of pride. I value time over materials. I find happiness in the simple things. I forgive easily. I embrace the smallest moments that most take for granted. I am open about my anxiety and depression, but never use it as an excuse. I am blunt, honest, and realistic – and I am okay without the approval of others. I find money to be necessary but also the root of all evil. I strive to be a better version of me, every day. I am an imperfect yet powerful mama (patting myself on the back). I will give my all to move mountains for my husband and my girls. My relationship with Jesus is the best it has ever been due to His unfailing love for me and willingness to listen to my attitude far more than usual in recent weeks.
I have been through so much. Why does He think I’m so strong? Maybe because He built me for this. Instead of choosing to wallow in self pity, I continued to get back up. I am 100% a “bring the fire,” type of spirit and I’m only a quitter on things that no longer serve me in a healthy manner.
Maybe, just maybe, He chose me for this path because •I AM RESILIENT•
My dream didn’t shatter because of a fatal diagnosis. My vision, heart and mind were adjusted accordingly for a fight He has been preparing me for.
•About six months ago, I promised to find out what was going on with my girl, despite everyone saying it was “normal,” or “would be okay.” I did that.
Now, I promise that the world will know about my girl and others like her. 🔥🌪🌩🌈
I haven’t brought myself to write since November of 2019.
My last blog post was written on a basis of finding thankfulness and humbleness despite the darkness of Autism Spectrum Disorder. It is now May 2020 and I would give anything in the world to have that severe autism diagnosis back in our lives.
On March 25, 2020, our five year old daughter, Haidyn, was diagnosed with a fatal, genetically inherited disease. Diagnosis: Mucopolysaccharidos lllA – Sanfilippo Syndrome.
WHAT IS SANFILIPPO SYNDROME? IMAGINE ALZHEIMER’S, BUT IN CHILDREN.
“In a nutshell, that’s what every family of children with Sanfilippo Syndrome faces.
Our children are born with a change in their DNA that causes a very important enzyme to be made improperly … or not at all.
Because they don’t have enough of this critical enzyme, our children cannot breakdown and recycle natural cellular waste. Their cells become clogged with toxic levels of heparan sulfate.
While every cell in the body is affected by Sanfilippo Syndrome, brain cells suffer the most. Sanfilippo’s effects on the brain become apparent between 2-6 years of age – speech problems, developmental delays, challenging behaviors, extreme hyperactivity, and poor sleep. All because of the build-up of cellular waste.
Many children are initially diagnosed with Autism before finding the underlying diagnosis of Sanfilippo Syndrome. Children with Sanfilippo go on to experience progressive dementia similar to Alzheimer’s, stealing away their skills and knowledge. Sanfilippo Syndrome will often cause these children to suffer from seizures. They will lose the ability to eat for themselves and many will get a feeding tube. They will lose the ability to walk and need a wheelchair. All because of Sanfilippo.
Relentless and devastating, children with Sanfilippo Syndrome often pass away in their teenage years.” – Cure Sanfilippo Foundation
Now that you have a general idea of what Sanfilippo Syndrome is, because I’m sure you had no idea, as did we, let’s shuffle back to about late 2019. (This will be long • for everyone that has asked to hear, “Haidyn’s story,” buckle up.)
Towards mid to late 2019 I began to really struggle with the autism diagnosis. Haidyn fit the autism diagnosis based on behaviors and characteristics, but that’s what autism IS. It is a behavioral diagnosis. There is no lab panel, test, scan or any other physical, medical procedure that can SHOW you autism. Autism is strictly diagnosed on a basis of categories that involve behavior, cognitive skills, and even an IQ score. It’s more than that, but you get the idea. As I have stated in the past, Haidyn was diagnosed with severe autism in October of 2018. We didn’t really understand the severe category that she was placed in but over the course of the next year we completely agreed.
Everything has been extremely hard for Haidyn over the last year and it continues to grow harder with each passing day. Normal for autism, right? Well, maybe. If you’re not actively working with your child to help them communicate, cope, understand and feel your love and understanding – maybe. If you’re not involved in all necessary therapies provided by outside sources or even a special needs class – maybe. If you’re not actively communicating with doctors and other medical professionals about where your child is at mentally and physically – maybe… but we were doing all of that and more. My brain can’t even fully grasp all of the little details and even some of the bigger details in regards to everything we have tried in hopes to help our baby girl.
As of late 2019, Haidyn had been involved in speech, occupational, and physical therapy, once a week, every single week, for a year and a half. Her therapists at Mckenna Farms have become some of our family’s favorites. They are amazing and Haidyn has formed a beautiful bond with each of them. Haidyn was also half way into her second year of special needs Pre-K. During the school week, she would receive speech therapy twice a week and occupational therapy once a week. That is SIX therapy sessions a week, alongside a structured school environment with a great IEP established for her. At home we took the time to try and implement the same things she was learning in therapy or what they may be focusing on at the time. I’ve read just about every book on autism I could get my hands on, watched countless documentaries and more. Anything, anything, to help ease the autism struggle for our girl.
Despite all of the help from so many hands on deck, we continued to see rapid regression. Don’t get me wrong, there have been many positives from school and therapies as well. I am forever grateful for her wonderful teachers this year and her therapists. They have found ways with her that even I couldn’t find sometimes. They have had an abundance of patience and focus even when I had zero answers for them or even knew where to begin on how to help with certain struggles for Haidyn. All of the good and the bad combined, something still didn’t sit right with me.
Have you heard of “mom intuition?” I call it my mama gut, but it’s a real thing. Looking back, after we moved in August and things became increasingly hard due to routine flying out the window, I fell down into a really dark place mentally. I struggle with depression and anxiety but it came on with a force I hadn’t seen or felt in probably several years. At the time, I assumed most of it was due to Haidyn adjusting to a new home, a new school, a new routine, a new everything. Literally, her family, her doggies and her therapies are the only thing that didn’t really change during our move. So, it was fully expected to be a nightmare for a bit. I assumed because she was struggling, so was my mama heart for her. I now believe it was my mama gut kicking into gear and starting me down the path of finding further answers.
Sitting in the waiting room at Mckenna Farms, with my other special needs mom friends, I was filling out a routine six month evalutaion/questionnaire for Haidyn. Since we started therapy, these have continued to become more difficult to answer. I will attach the two questions that really stuck with me in the recent evaluations, and I sent them to my husband while trying to answer them.
It’s hard to put into words where my mind was in this moment because that’s how far she had regressed and how difficult things had become. Everything about our baby had changed so much that I didn’t even know where to begin or what was a priority for independence or a new skill set I’d prefer for her. I just wanted her to not have to struggle.
Down the rabbit hole I went. I began reading more blogs from autism parents. I started following “Fathering Autism,” on YouTube and Facebook. You should too! They are great. I started reading any parental advice about autism I could find, anywhere. I watched movies based on autistic characters. I researched autism forwards, backwards, left and right online. Nothing, seemed to fit.
I dove deeper. I started researching vaccines. I mean, every single thing, in every single vaccine on every single credible website I could find. Victoria, if you’re reading this, thanks for your help. I researched vaccine injuries and side effects. Then I dove into the medication side of things. Pain medication, antibiotics, anesthesia, etc. I watched the vaxxed documentary. I watched some interesting and some weird conspiracy theories on YouTube. After all of that research, I scrambled through every single piece of medical history and documentation of Haidyn’s since birth. I mean everything. If I didn’t know what it was or what it meant, I looked it up. I’ve actually found myself to be a decently educated individual on medical stuff these days. Furthermore, I dove into genetics. I read about gene mutations, genetic errors and overall, how your genetics play a role in every thing that happens with your body. I shuffled through my dad’s medical documents to find a genetic test he had done a while back and found that he had a specific gene mutation that I was curious about Haidyn possibly having. Side bar – that gene mutation would’ve been a much better alternative to the one related to Sanfilippo Syndrome. Some say that genetics is experimental but after all of the reading I have done, I find genetics to be a crucial necessity for every child born. I cross referenced all of these things with Autism. Still, no definite answer but an eery feeling that I was on the right path to an answer.
Y’all, I’m lucky that my husband loves me as much as he does because I promise you that I was borderline losing my last marble during this process. Some nights, he would have to force me to put my phone down because I would find myself so sucked into the reading and searching for answers that I would make myself sick. I’ve never been one for surprises or being out of control of a situation. I am also a slight hypochondriac. I can’t help it that I am this way… thanks Dad – genetics.
Genetics. Genetic testing, that was my next path to travel down for answers.
In February of this year I took Haidyn to a routine checkup at her pediatrician’s office. She had some blood work done, I was reminded that she was considered obese, again. She’s not. Have you seen her daddy? She’s just a tall, thick, little girl. During the appointment they did routine blood work to check a few things and I also requested a referral to see a geneticist. The doctor asked why I was curious about genetics and I explained. Little did we both know, neither of us had any idea as to how important this geneticist referral would be for Haidyn. Blood work came back with high cholesterol, high blood pressure, elevated liver enzymes and a diagnosis of mixed hyperlipidemia – related to cholesterol.
At this time, we started seeing a naturopath doctor as well. LOVE HER. If you need a good one, I’ve got her for you! She mentioned Haidyn having some major detox issues from every kind of toxin you can imagine… ok, elevated liver enzymes. That makes sense. Liver = detox. She also mentioned noticing some genetic issues as well but couldn’t explain them.
I started googling geneticists in the Atlanta area and I finally just picked one that seemed fitting and could fit us in within a reasonable time frame. We made it to our appointment with the geneticist on March 5th of this year after waiting over a month to get in with them.
We walked in, Caleb sat down and contained Haidyn as best he could with snacks and the iPad. I began going through the course of Haidyn’s medical history, my pregnancy with her and Braelynne, family medical history and anything else she asked for. We waited about five minutes and Dr. V came in to greet us. She took a seat next to me and over the next hour and a half we talked about everything with Haidyn. She asked me to show her picture of Haidyn from birth up until now at age 5. She kept mentioning how her features were “more coarse,” with each passing year. I agreed but had no idea what in the world she meant. She had us undress Haidyn and she watched her walk, felt of her stomach and back, listened to her breathing and even told us by looking at her, that she thought she was suffering from absence seizures. We had already been questioning the same even though we had inconclusive results from neurology a year before. She sent us for blood work and told us that she would first test Haidyn for lysosomal storage disorders or metabolic disorders. In my uneducated head, I’m thinking, “metabolic = metabolism. That can’t be bad.” She sent us off to the lab, handed us our paperwork from the visit, along with a couple of referrals for an MRI of her abdomen (liver and spleen) and an X-ray of her bones, and that was a wrap while we waited for results.
That night, I came home and started looking through the paperwork she sent home with us. I read on the referrals that explained the testing needed, a diagnostic code. The code represented Mucopolysaccharidosis or MPS. I’m a researcher who hates surprises and likes to know what I’m up against. The first thing I did was look up lysosomal storage disorders. Bad. Next, I looked up metabolic disorders. Same thing – still bad. Lastly, I looked up Mucopolysaccharidosis. Heart breaking. I followed myself down the path and came across Sanfilippo Syndrome. Instantly, I knew what she meant by, “coarse facial features.” ALL OF THESE CHILDREN LOOK LIKE MY CHILD. I read further into symptoms and characteristics. Haidyn was a textbook definition of a Sanfilippo child. I can’t even explain the feeling that came over me. I thought I knew what a heart sinking feeling was… but I definitely know now.
I hopped over to Facebook and started looking for stories or tags related to Sanfilippo children. I came across a page for Sanfilippo parents and I requested to join. I remember a sweet mama, the admin, reaching out to me and me telling her that we were awaiting test results and I was praying that this diagnosis was wrong. She knew it when she looked at my profile and saw pictures of Haidyn. I knew it when I found the description of Sanfilippo Syndrome on google. I confirmed that feeling when I compared my child’s picture to these Sanfilippo parents children. Below is a collage I made while awaiting test results. It shows Haidyn on the right and her two Sanfilippo sisters that are also a part of the same foundation that we are involved with.
After the longest, excruciating, three week wait – we received a phone call that results were in. Due to COVID, we scheduled a conference call for several hours later with Haidyn’s geneticist.
At 12:00 PM, March 25, 2020, we heard the words, “Your daughter has a confirmed diagnosis of Mucopolysaccharidosis lllA – Sanfilippo Syndrome.”
Excuse my language when I say that I am so grateful that my mama intuition lead me here, without fail, and over the course of several years – but damnit if I wish it could be wrong for ONCE! Just once.
Since diagnosis day, we have publicly announced it. Honestly, that was easier to post on Facebook than to pick up the phone and go down the list of all of our loved ones and repeat those words over and over and over. I don’t think I would’ve had the strength… and some days I still don’t. We have created a Facebook page, @HaidynsHope. We have shared several donation links, a fundraiser and witnessed a few family members and friends do the same (over $7000 raised from all). We have started the process of finding a clinical trial that she may be eligible for. We have partnered with the Cure Sanfilippo Foundation and embraced our new Sanfilippo family. Social media definitely has a few pros. ✨ I reached out to Haidyn’s pediatrician, who was completely unaware of what Sanfilippo Syndrome was and we spent quite a while on the phone just talking, her listening as well as being supportive and me trying to explain the little I know. It’s ironic because for five years I heard the words, “normal,” “grow out of it,” “therapy will help,” “common,” “not a big deal,” and many others…. but now I’m the mom educating my child’s doctor about her rare disease. I mean that with zero ill intention – I love her pediatrician. They have been through it all with us as a family and for Haidyn. It goes to show just how rare this disease is and that it is not uncommon for doctors to have very little, if any, knowledge of this family of diseases + mom intuition is a super power.
As of today, we are taking it day by day. The joy, the grief, the sadness, the happiness, and all of the other emotions. We are raising awareness any way we can and we are so thankful for each and every single person that has jumped on this journey with us for Haidyn’s Hope.
The beaten path that lead us to the end of 2019 and now into 2020 began with these signs…
•Haidyn is born. January 9th, 2015. She was born with the cord wrapped around her neck and later determined to have underdeveloped lungs/respiratory distress. She also suffered from jaundice. She was placed in the NICU, on a ventilator, for 7 days and released after 10 days. *Sanfilippo Symptom
•6 months+, large head circumference up until present day. *Sanfilippo Symptom
•Haidyn is almost a year old and beginning to walk. She walks on her tip toes and eventually puts one foot down but never the other. After physical therapy evaluation and an orthopedic evaluation she is determined to have an Achilles’ tendon contracture. She had surgery to fix this and “drop her heel,” in August of 2016. *Muscle contracture is a Sanfilippo Symptom
•Also at a year old and even a little bit prior, constant ear infections and upper respiratory infections begin. Antibiotics never seemed to help. In August of 2016, Haidyn had tubes placed in both ears and adenoids removed – the first time. *Sanfilippo Symptom
•Two years old. Sleep is becoming an issue and she snores horribly. A sleep study is done in June of 2017 and Haidyn is diagnosed with severe sleep apnea. *Sanfilippo Symptom
•Ear infections, respiratory infections and sickness continue at age two. In August of 2017, Tonsillectomy is scheduled to help sleep apnea, second set of tubes placed in her ears, and adenoids removed a SECOND TIME, because they grew back fully in a year. Even her ENT was shocked. *Sanfilippo Symptom
•Age 2. Stomach upset was normal for Haidyn but by age 2, chronic diarrhea and vomiting were a daily crisis. *Sanfilippo Symptom
•Summer of 2017, GI visit for stomach issues. Everything comes back normal, aside from a dairy allergy. Dairy is removed from her diet, her stomach is better, but diarrhea is still a normal thing… even to this day. *Sanfilippo Symptom
•Late 2017, a hearing screening is done and results are inconclusive due to Haidyn being uncooperative. We were concerned because speech seemed to be just a tiny bit behind. We assumed it could be related to her hearing and so many ear infections over the first couple years of her life.
•Late 2017, Haidyn is screened by “Babies Can’t Wait,” at her daycare to see if she qualifies for speech therapy through the state for children under three. Haidyn did not qualify or seem delayed enough at the time. Of course, we were thrilled. Delayed speech is a *Sanfilippo Symptom.
•January 2018, age 3, separation anxiety and sensory issues become increasingly painful for her. She started a new daycare and when I say it was awful… it was the worst kind of awful. Not the daycare or the staff, just for her. I can still hear her screaming for me, outside, as I’m getting in my car to go to work and in tears. *Sanfilippo Symptom
•Prior to and continued to try after January 2018, potty training. Terrible. She was not potty trained by three and I could not understand why. We took away pull-ups for two to three weeks completely and cleaned up more pee and poop than you can imagine.. with no achievements in the potty training game. To this day, she is still not potty trained and likely never will be. *Sanfilippo Symptom
•Early 2018 – strange, unexplainable fears all around her, become hard to manage. Sensory overload is in full effect compared to the little we knew about it. Her central nervous system was definitely beginning to regress. *Sanfilippo Symptom
•Summer 2018, tip toe walking is becoming ever prevalent again… with both feet. The tendon that did not need surgery at a year old, is now becoming very tight. *Sanfilippo Symptom
•Fall of 2018, I quit my job to stay at home and help Haidyn. I had this overwhelming feeling I needed to be home. I started keeping kids at the same time to help with income and also provide friends for Haidyn to play with daily. Shortly after is when I really started to notice that something was different. She didn’t play “normal,” and didn’t seem to understand any form of pretend play. Her speech was even further delayed than I had ever noticed. She was 3 at the time and fit in better with 1 year old Emmy versus the girls closer to her age.
•September 2018, developmental assessment is done by her pediatrician and we leave with testing for autism and referrals for speech, occupational, and physical therapy. Also, we must see a cardiologist and an ophthalmologist.
•September 2018, ophthalmologist finds amblyopia or strabismus. Commonly known as, weak eye muscles, lazy eyes or wandering eyes. She also needs glasses and has an astigmatism. *Sanfilippo Symptom
•September 2018, Cardiologist rules heart murmur to be true but innocent. *Sanfilippo Symptom
•September 2018, all three therapies begin. Physical therapy notes weak muscle tone, weak core, extremely clumsy (always has been) and tip toe walking are major issues to focus on. *Sanfilippo Symptoms
•October 2018, Haidyn is diagnosed with Autism Spectrum Disorder, Global Developmental Delay, & Sensory Processing Disorder. *Sanfilippo Symptom
•January 2019, Haidyn begins special needs pre-K. It is a very hard adjustment and change of routine.
•Early 2019 Hyperactivity in full blown manic phase. Her attention span is almost non existent. *Sanfilippo Symptom
Diarrhea continues 🙃
•March & April 2019, Neurologist, EEGs & MRIs (yes, multiple) to check for absence seizures – results are inconclusive. *Sanfilippo Symptom
•MRI results show scar tissue and some damage to all sides of her brain but mainly the left frontal lobe. *Sanfilippo Symptom
•Summer & Fall 2019 (before and after move), behaviors become increasingly hard to manage and control. Calming down is not a choice I get to make her for. *Sanfilippo Symptom
•Fall 2019 to now – new school and teachers (who are all amazing) but Haidyn has an extremely tough time with school, adjusting, understanding direction, following instruction, destructiveness, behavior and diarrhea of course. *Sanfilippo Symptom
•February 2020, seemingly off bloodwork results from routine labs. Elevated liver enzymes & high cholesterol.
•March 5, 2020, first genetic visit and testing done.
•March 2020 – ophthalmology reports her eyes are about the same, no major changes but no new issues. No sign of cataracts, praise God!
•March 2020, MRI of abdomen results in enlarged liver. *Sanfilippo Symptom
•March 2020, Bone Scan XRAY shows deformities in clavicles (shoulders) and hips. *Sanfilippo Symptom
•March 25, 2020 – Diagnosis of Sanfilippo Syndrome. It’s an answer we so desperately were seeking and needed but it’s not the answer we wanted.
As of now, we wait until the COVID19 pandemic ceases or calms down enough to continue with many more appointments. Haidyn is considered an extremely high risk case now for not only COVID19 but any illness, injury or medical issue. We are currently awaiting on follow ups with neurology for seizures, endocrinology for Sanfilippo, UAB to be studied for research and to help Haidyn’s medical team, and hopefully finding eligibility for placement within a clinical trial whether it be in the U.S. or another country. On top of all of that, every step of medical history I mentioned above (that we thought we conquered) has to be followed up on. Not just once more, but continuously for the rest of her life.
We are standing in the valley surrounded by mountains that I’m not sure we could ever climb… but we are going to give it our all.
If you took the time to read all of this, thank you. If I can ask anything, please just tell at least one person about our Haidyn. Raising awareness for Sanfilippo Syndrome is the only HOPE these children have for a cure.
“Thankful,” as cliche as it is with the upcoming of the Thanksgiving holiday tomorrow is something I am feeling so strongly every day.
Our days have been harder, more stressful, emotional and most of the time I just don’t understand. I sit back in the evenings, once Haidyn has taken the time to wind down and I scroll through Facebook, looking at everyone’s families, children and life events. It is hard to see dear friends and family getting together for regular play dates that aren’t so simple for us anymore. It is also hard to see people in a stage of life that you hope and dream so deeply to be in. You see, we have this routine, that we do try to break at times to help Haidyn cope but other days it is just not worth breaking, for her sanity and mine.
Therapies, school, doctor appointments and every day struggles/anxieties can become consuming and my brain and heart feel like they may drown from the pressure. We are always tired, here. Every day is a new day with an unforeseen future of if it will go as planned. I am so happy to see all of my friend’s children growing and thriving just as they should. Why do they have to grow up SO FAST? They are not babies anymore and it’s extremely bittersweet. I love watching your journeys but I would be lying if I said I didn’t ever feel a little sad or even envious that we aren’t on the same path. Although Haidyn is almost five, mentally she is still about where a two year old may be.
She isn’t potty trained, even the smallest transition can throw off her entire day and speech, understanding and expression of feelings are difficult. Then throw all of the other autism and sensory processing disorder characteristics curveball in there and it gets wild!
Even though I find myself wishing it were easier at times and trying to trust God’s plan for our life, I am completely overwhelmed with a thankfulness and humbleness that I’m not sure I was capable of until she changed our lives. Don’t get me wrong, Autism is not beautiful, it sucks and it is crippling in many ways but it does have it’s beauty and sunshine too.
When Haidyn says a new, multi-syllable word we are so proud. When she puts three or more words together into a complete sentence, even if it’s demanding, my face gleams with the biggest smile. When she plays on a new playground without fear or explosive poop from nerves, I am thrilled. When she participates in therapy activities willingly and shows progress, I am in awe. When she walks with her heels down for the majority of the day and finds even the tiniest bit of focus, my heart is amazed. When she finds little ways to express to me that she is hurting or doesn’t like something, I feel relief. When we walk into Walmart, shop at Walmart, check out at Walmart and make it back to the car without a single meltdown or change in behavior, I feel peace. When I see her face light up to see her daddy, her grandparents, her sissy and her puppies, it justifies that she does have a beautiful heart that loves so deeply even when it’s hard. When she sleeps through the night and wakes up happy, I know we have a great chance at having a really good day.
I am always watching my families interaction and love for her. She has the BEST big sister that is my saving grace most days. I couldn’t do it without her. She plays with Haidyn, helps keep an eye on her (because if we leave her alone for one second she could burn the entire house down) when I need to do a couple of things around the house, and she is accepting and understanding of her special needs. To watch Braelynne’s excitement for Haidyn’s small achievements and successes makes me feel as if I’m doing something right. Braelynne has always had the biggest heart for others and I love seeing it grow even bigger with the things her sister is teaching all of us. She also continues to amaze me with her love for school, her determination in any goal she reaches for and the fact that she is obviously way smarter than her mama.
I am incredibly thankful for my husband, Caleb. I don’t say it enough but I pray every single day that our marriage continues to grow and only strengthen throughout our life time because not only is he the best daddy to our girls but he is the best husband and partner I could’ve ever dreamed of having. He helps pick up my slack when I’m struggling and he is always understanding to his girls needs. He shows me the definition of unconditional love at all times and even on my ugliest days. He is selfless in more ways than one and will do anything for anyone he loves without question. I watch him tire himself out just to ensure all those that need help are taken care of and don’t have to do more than absolutely necessary without his help. He may have a grumpy face most of the time but his heart shows otherwise.
I am thankful for our families. We have more support than we deserve and we could never repay or give enough to show our gratitude. We couldn’t do it without y’all and we love y’all. Caleb and I both come from parents with beautiful marriages and so much love to give to their children and grandchildren. I hope to be even half of the beautiful parents/grandparents that they are and if I am, I’ll say I’m doing okay in this life.
Through all of Haidyn’s struggles and hardest days I continue to find it shining a brighter light on even the smallest positives and progress we see with time. I’ve found myself empathizing with others and their lives more so than ever before. I no longer feel the need to judge another if I’ve never been in their shoes. Almost everyone has a reason behind the way that they are – yes, even the ugliest of people. I suffer with anxiety and depression and most would never know if you ran into me in public. My daughter has severe autism and yet so many people that are around her on her best days or in her “safe places,” will never see the true struggles that lie underneath the surface of her skin.
Autism Spectrum Disorder and spending time at therapy, meeting other moms and learning about their children with all kinds of different disabilities and struggles has brought me an abundance of humbleness and gratitude. It could ALWAYS be worse. Life isn’t fair to any of us but we all have the ability to embrace our hardships and find the beauty in them. The whole “glass half full” perspective has a brand new meaning to me and as we continue to feel lost in our daughter’s diagnosis, we will continue to be incredibly thankful, honest and pure to others about our lives, hopes and dreams.
Life isn’t what I pictured in my head but it never has been. I’ve always struggled with leaving MY PLANS in God’s hands and trusting His plans for my life. I believe He has a funny way of teaching us that His plans are so much greater than ours and I’m okay with that. We have everything we need and beautiful friends and family beside us to walk along this journey of life.
No matter what life continues to throw at us with a force, I will continue to cry when I need to, pray through it all and at the end of every night find thankfulness and the shining light at the end of the tunnel for right where we are in this moment. Life is beautiful if you choose the light instead of the darkness. 💡
A mama/wife of one super-smart, big-hearted, gifted, neuro-typical daughter and another baby girl, with autism and more affection than she knows how to give in any other form than extreme, and an amazing, supportive husband that is my very, best friend.
Happy Thanksgiving to you and your families and I hope that through the darkness you see the grace God continues to shine upon your life. ✨
Yesterday, I sat down and searched through my email to find the attached copy of Haidyn’s autism diagnosis from almost a year ago as of this month.
I’m not sure why but reading through the twenty page report hurt my heart even more now, a year later, than it did when I read it for the first time. Maybe it’s because I understand more of the terminology and the reasoning behind many of the behaviors and characteristics that the psychologist saw and we didn’t understand at the time. Maybe it’s because I have spent hours over the last couple of months reading books and blogs, watching movies and listening to podcasts all based on enlightening what autism is and how it works. At least, the little information that is out there about autism.
I read over the diagnostic testing and charts explaining where she fell on all of these scales as a child with autism at least ten times and then I just cried.
To say that the last three months have been easy would be a blatant lie. Her behaviors and autism “quirks” have become very aggressive, very intense and very overwhelming. Not only for her but for us as well. Melt downs were a periodic thing and I usually knew when to expect it because I knew some of her triggers. Over the last few months they have become almost a daily to multiple times a day occurrence and 90% of the time I am in a complete loss as to what the trigger may be. When she was diagnosed I didn’t see a lot of these things. I also believe I tossed a lot of “quirks” into the “that’s just a toddler thing,” category. I was wrong. She was three then and she is almost five now and as she ages these “quirks” make themselves more noticeable and less, “normal.” Also, with age the meltdowns have become more severe and far more aggressive. I now 100% understand her diagnosis, her being placed on basically a severe level of the spectrum, and being told that she would need a substantial amount of help to adjust and blossom in this world.
Haidyn has made so much progress in therapy and I am forever thankful for all of her wonderful therapists but aside from that, everything in our daily lives outside of therapy has become far more difficult than it was a year ago. I know she thrives on routine but even our routine is a constant battle.
I am not writing all of this to complain. I am writing this for our friends and family to read. I am asking for patience, love and understanding. If you pray, I am asking for your prayers. If you send vibes, I am asking for good ones.
As of right now, every day, every situation, every new place, and every get together are completely unstable for her. I used to be able to say, “oh yeah, she loves that and she will do fine.” Right now, I cannot guarantee that. Something in her brain and her little body can change so quickly for the worst and I can’t predict it.
Bare with us. We love our friends and family dearly. We still want to be invited to all of your outings, birthday parties and events. We wish to be a part of all the things that are just simple and fun for most and we enjoy it more than you know when we are able to make it work.
We may miss holiday gatherings and birthday parties. We might not do dinner as often or “parent’s night out,” but we want to. We may not make it to every church gathering or weekend vacation but we are definitely sad to miss it. Also, IF we do make it, please be patient when we have to leave sooner than expected because something changed and an exit strategy became priority.
We will always try our best to push Haidyn out of her comfort zone as much as possible to help her learn to cope and adjust to this crazy world around her but some days it is genuinely not worth the battle for her or for us. Even a simple run to the grocery store lately has ended within minutes from entering the store and sometimes just trying to bathe her at home can be a nightmare.
We love you and we miss you all. We wish we could be a part of everything and more. I know that with time she will hopefully adjust and we will also learn new ways to understand her needs and what’s going on inside of her little brain but for now we are hyper vigilant, we are tired, we are on edge and we are trying to protect her. Nothing is worth watching it physically and mentally hurt my baby in ways that I cannot fathom and without a quick fix.
So, to those that love her for exactly who she is and those that support us whole heartedly, thank you. Friends and family like you are what helps us on even the hardest days. To those that think we don’t reach out or don’t try, you’re right. We don’t but not because we don’t care. Only because in this moment our life is kind of up in the air and we are taking it day by day.
I hope and pray every single day that with time, therapy, love and a lot of patience, Haidyn and I both grow from all of this. My hope is that one day she can live a “normal” life but for now, we will take each day slowly and embrace the mess. She has humbled me in more ways than I could ever express and even though our days can be long and hard they also fill my heart with more love than you can imagine. Loving someone that is wired differently and sees/handles life on a completely different wave than you can teach you amazing things about embracing the differences, having patience with strangers and just loving others despite their flaws.
I’m not sure why God thought I was fit to be her and her sister’s Mama or why he thought I was the person to take on all that comes with Haidyn’s diagnosis but I’d like to think he’s teaching me to be a better human.
To anyone suffering from anxiety, depression or many other mental illnesses, I love you and I see you.
You are a warrior because there is nothing more terrifying than fighting a battle with your own mind.
I haven’t ever touched on extreme details of my anxiety and depression before and that is mainly due to the lack of words and metaphors to describe what I feel like on the inside. I was diagnosed with GAD (generalized anxiety disorder) and depression several years ago. That was a total shock by the way.
Anxiety and depression had taken over every second of my every day life at that point. I am super fortunate to have a husband that unconditionally loves me, supports me and never makes me feel less, even during my mental struggles but my anxiety and depression had become so terrible that he told me, “I love you and I am always here for you but I can’t fix this.” Therefore, I ended up at the doctor to talk about my issues, do some labs and bloodwork and ultimately leave with a prescription for lexapro.
I took lexapro for about six months. The first month or two, after you get through the beginning phase of new medication hell, were amazing! I felt better than I had felt in months. I could laugh, I could smile genuinely, I was productive and felt like my brain functioned properly. As time passed, I started to become a zombie. Not out of it but just cool with it. Cool with it as in not too happy but not too upset either. Just cool.
I began to be so relaxed to where I felt fine with not doing housework because it can be done later. I could pay the bills tomorrow and it’ll be fine. The house might burn down but it’ll be fine. Everything was fine. I was fine. We were all fine. Except for my husband. Poor guy, he has so much craziness to love through in our household. He pointed out my fine like feelings and after opening my eyes to it, I came off of lexapro per my doctors instructions.
Overall, the medication did what I hoped it would do for my body and it seemed to have leveled out some of the chemical imbalances in my brain for a while. Over the last year, anxiety and depression have slowly crept their way back into my day to day life.
Honestly, the last few weeks have been overwhelming and for no reason. My life is still the same. I love my life. We have typical struggles as does everyone else on this planet but overall we are extremely blessed to be where we are today and to have the family and friends that we do.
Nonetheless, anxiety and depression have a mind of their own and it unfortunately tends to be mine. For me, anxiety typically creeps its way in little by little. It starts with feeling like I can’t catch my breath. I inhale with force just to feel the air fill my lungs but I still feel as if they are only half full. It grows into feeling as if there is a cinder block sitting on my chest and my throat wants to close up. I find myself hardly able to eat or trying to eat the anxiety out of my body.
As time passes I am in a constant state of barely able to breath, add in nausea, a dash of trembly limbs and a heaping spoonful of hardly being able to speak words. My mind races and my heart feels like it may explode out of my chest. Everything around me overwhelms my senses to the point that I burst into tears or become ridiculously agitated with it all. Let’s not forget the paranoia that makes you feel like a psychopath and can place you in a panic attack within minutes if you lose your control over your mind.
I find myself while driving, picking up kids, grocery shopping, cooking dinner or even sitting down, repeating to myself, “I am okay. I am okay. I am okay.” Of course, that never seems to work for me and all I can look forward to is sleep because at least when I can fall asleep, I can’t feel. If I can’t feel, I can’t panic over senseless things. As the anxiety and depression grows daily, the sleeping at night turns into closing my eyes at any given moment during the day or I am barely able to keep my eyes open. I’m not sure about you but when my anxiety and depression are running full throttle I can feel all the pressure of it in my eyes. The fatigue is so intense and that results in absolutely zero motivation for day to day tasks.
As I said earlier, I am forever thankful for my husband. He has learned to read my physical signs and can pick up on it almost instantly. He doesn’t force me to talk through it or tell me to, “suck it up.” He doesn’t pity me or make me feel sorry for myself. He just loves me. He gives me space when I need it. He helps with tasks around the house when I’m struggling mentally and can’t keep up. I will kill him if he ever leaves me because I don’t know what I would do without him some days. He is my safe place.
Anxiety and depression are two of the most commonly diagnosed mental illnesses in the world. So many of us struggle with a multitude of the destructive symptoms I mentioned above and also many more.
I see you when you say you are busy but I know you’re at home crying into your coffee cup while the kids are at school. I hear you trying to inhale deeper to catch your breath. I feel you when you need to step outside to let the fresh air embrace you and see if it awakens any endorphins in your body. I understand your silence when you are trying to calm your racing heart. I resonate with you when you look at your phone while it’s ringing and don’t answer or open a text with no intent to respond. I am also busy telling myself that I am okay.
If this is your busy, that’s okay. Mental health problems are real and they are hard but I am always here for you. I am always a phone call, text message, email, show up at my door, or mail a letter away.
On the worst days it is unbearable trying to pull yourself out of a dark place. If this is you – I am so proud of you. You are strong. You are beautiful. You are worthy.
“Just because I can’t explain the feelings causing my anxiety, doesn’t make them less valid.” – Lauren Elizabeth
In conclusion, be mindful, be kind, be humble, and just love others. We are all fighting a battle of our own. ♥️
Anxiety and depression are my demons but Jesus, self care and acceptance are my light. ✨