Sitting in the office of my 5 year old's pediatrician that morning, I was sweating LIKE CRAZY.
I couldn't tell if it was due to my nerves and anticipation of receiving my daughter's blood work results, or if it was one of the weird hot flashes I was randomly getting at the time.
Whatever it was...I was really anxious. I had been waiting for four VERY LONG weeks to get these results, but I had been worried for years. For a worried mother, that LITERALLY feels like holding your breath under water, for infinity.
But yet, this little voice in my gut was saying "You don't want to know this."
That little voice KNEW that when I was to leave this appointment, NOTHING would ever be the way it was before.
Before things started going downhill, we were a pretty healthy & put together family.
I was in the best shape of my life, had tons of energy, would meal prep every weekend, and had a health & wellness business that was exploding. I developed a love for running, and I CRAVED it daily because of how much it helped me with anxiety and how good I felt after.
We felt so lucky and blessed to have two healthy and precious little girls. Delilah was 3 ½ when Skylar was born, so our home was full of laughter and songs from FROZEN and TROLLS, and our days included spontaneous dance shows and tea parties.
Life was pretty perfect, and Brandon and I wanted to do everything we could to give them the best
But as Skylar grew up, I became increasingly concerned that something was wrong.
When she would have meltdowns, they didn’t seem to be “normal.” For example, let’s say a
kid throws a fit in a store for a candy bar, and the mom gives the kid the candy bar so they would stop crying. (Not healthy parenting, but remember - this is just a hypothetical example). In a healthy kid, the candy bar would calm the kid down, which was the whole reason for the fit in the first place. For Skylar, giving her the candy bar WOULD NOT calm her down. Cause it was never about the candy bar. Nothing would calm her down or ease her. If this was a real situation, and many times it was, I would have to leave wherever I was and get her home. As she got older, she would hit herself, sometimes banging her head against the wall violently, and ripping chunks of her hair out. She would say things to herself like "I don't know why my brain is doing this! I hate myself, I hate myself!"
Another sign to me that something wasn’t right, was that her body NEVER handled illness in a normal or healthy way. When her sister would get sick, she would fight it off and be well in just a couple of days. But when Skylar would get sick, it would take her WEEKS to fight it off, and she would get rashes and more symptoms with it. It's like her immune system was struggling to fight off these infections. At an early age, this is typical. But for Skylar, it got worse as she got older.
It was also inevitable that she would get sick if she were ever around ANYONE else that was sick. One time, after a recent infection, there were a few days in a row where she washed her hands SO MUCH that they became raw and blistered and she wouldn’t stop washing them and crying. My rational mind was blaming the soap, but my gut was telling me "This isn't normal."
When I expressed any of my concerns to her pediatrician, my intuition was squashed. The response was always, "Oh it's just a part of her personality! All kids are different!" And sometimes it was, "Well, how are YOU handling discipline? What are YOU doing wrong?" Assuming that the reason she was having fits was due to my parenting or something I was doing wrong.
So, we just adapted and we picked our battles.
I would run no more than two errands MAX in a single day. It was all she could handle to avoid a meltdown. But sometimes she had them anyways. We started taking the stroller everywhere, even when she was older, so she had a "safe" place where she felt protected when we were out and about.
We minimized going places that were too noisy, too bright, or with too many people. She had EXTREME sensitivity to places like this and they would almost always trigger a meltdown. It was just too much stimulation for her. Birthday parties were typically exhausting for our entire family, cause once we got home it was meltdown city. We let her wear what she wanted...which has always been soft and tight leggings and a soft t-shirt. Her clothes have to be snug, soft and fit “just right.” Nothing can be dangling from them or making noise. No bows, no ties, no decorative zippers. Shoes and socks are exhausting so when she finds ones she likes, it's usually all she wears. It was always so sad to me to see her get so excited about a cute sparkly dress, and then she would want to wear it, but PHYSICALLY could not bear the way it felt. We held on to so many clothes because she “loved them” but she really only ever wore just a handful of shirts and leggings.
During Hurricane Harvey, she got sick. Real sick. She broke out in a rash all over her face, hands and feet and ran an erratic fever. The hospital ER said they weren't sure what it was. The doctor we saw on FaceTime through a on-call service provided by our insurance had the balls to call it scabies. (We obviously knew he was wrong.)
When the flood waters went down and we were able to get her seen by her pediatrician, (the third doctor to see her), we were told it was "classic hand foot and mouth disease." (We later learned from the extensive blood work that she has never had hand foot and mouth disease.)
Approaching her 5th birthday, I began to worry if we were going to be able to get her potty trained. No preschool in our area would take an almost 5 year old that wasn't potty trained, and Brandon and I had literally tried EVERYTHING up to this point. She had a deep rooted FEAR of the toilet, and we had no idea where all this anxiety was coming from. I knew in my heart that we were doing this right, and taking breaks in between different methods we would try, but nothing would work. We had her evaluated by a pediatric occupational therapist’s office and they found her to have retained reflexes and psych issues but after 4 months at $600 a month 2x a week for therapy...we made zero progress and quit.
Then I noticed she was grinding her teeth really hard at night while she was asleep. She NEVER slept all the way through the night EVER. And the amount of sleep that she actually
got at night began to concern me. She was also "mouth breathing."
I noticed that she was sensitive to certain things as well, like the red dye in Benadryl would make her bounce off the walls and act hyped up. She was always constipated and having stomach pains. The separation anxiety got worse as she got older and not better and she started having irrational fears. Her eczema kept getting worse, instead of her growing out of it. Sometimes she would make this humming sound and not realize she was doing it, or consistently flick her eyebrow up and down without realizing it. She would also get intensely focused on an activity for hours, and not want to do anything else which was odd for her age. That feeling in my gut that something else was going on began to get stronger, and I finally began to listen to it.
Meanwhile, as I’m dealing with all of this, MY OWN HEALTH began to deteriorate.
One Sunday in early 2018, I was standing in the kitchen laughing and cooking with my kids and felt fine. Out of NOWHE