First things first, you should know that this story has been a lifetime in the making for one of my baby girls. I say this because it took 8 years to come up with the facts that we have now, but waited her whole life to get. Because of this, you can't ever truly know the emotion, the power and the heart behind these words. I personally chose to wait a year to write this.
Here's the story of Harper.
If you’ve known us for a long time, then you know our twin baby girls....that entered this world at 5lbs, 6oz, and 4 lbs, 7oz., are no longer babies! These two sacks of sugar are currently weighing in at 52.3 lbs and 51.4lbs, still maintaining the exact difference in weight from day one.
Harper Jade and Bayler Paige celebrated their 9th birthday this summer. We can hardly believe the time has flown as fast as it has. (Don’t all parents say that?)
For the past few years we’ve really gotten to see the identities of both these special ladies. While they’ve been different as night and day since the womb, we’ve especially seen those differences translate as they have progressed through the school age years.
Bayler is still our diva, our princess and our brainiac.
Harper is still our athlete, our artist and our dreamer.
We’ve found ourselves reflecting on their newborn years quite often in the last year. And we can say with great confidence that God has his eye on these two. I believe he has great, ginormous plans for their lives, possibly bigger and greater than the sum of their personalities. :)
From almost day one, I felt that something was "off" about Harper Jade. My pregnancy with the girls was the sort of thing nightmares in hell are made of. To go from hell on earth to home with two tiny sacks of sugar was an adjustment, and I'd be lying if I said I remember it all clearly! One thing I do know with clarity is that I worried about Harper.
I can't recall the first time I felt that things weren't 100%. I can recall that she was maybe a month old when that gut feeling found a voice. I remember saying to my mother that I felt like something wasn't right. And to my absolute horror, my mother (who RARELY voices her opinion on our marriage or child raising) agreed with me.
Harper wasn't hearing us, focusing on us, or reacting to sounds the way others do. You could bang a pan behind her newborn self and she'd react maybe 50% of the time.
This led to a number of doctors appointments, tests, and a lifetime of prayer.
First, research led us to discover that Harper had failed her hearing test at birth. We were fortunate to also have the babies cared for in a place that did routine hearing checks when I started back to work. Of these hearing tests, Harper failed probably half of them. We were told she probably failed because they were much smaller than most children their age. This made perfect sense to us. They weren't even on the growth chart at birth. It would take time to catch up.
But, still, this feeling in me couldn't be shaken. I called for a specialist to check her hearing. I was told that it would be over 6 months to get that appointment. By that time, Harper was close to 6 months old. I felt like time was of the utmost importance, as speech would become an issue.
In a "mother bear" moment, I told an untruth to the lady on the phone and immediately and miraculously they found an opening within the month. I'm not proud of that, but I'd tell you without hesitancy that I'd do it again for any of my children.
That consult led to a hearing test. At 8 months old, we took her in and watched her be tested. We also found out the very next day that she passed with flying colors.. I couldn't believe it, nor could I let it go. I immediately called a specialist on the other side of the state and she was scheduled for a consult the next day. That consult led to a SEDATED hearing test on our baby. And we learned within the month that Harper Jade's hearing...was fine.
The days passed, the girls grew and grew, and still my concern for our daughter was there. I prayed, I reached out to family and friends and I know they started praying as well.
When the girls were 10 months old, I received an email from my Aunt that spilled out with emotion and many words. At the top of that email was a statement, "I believe that God will reveal what is wrong in his perfect timing." I kept that printed email in my Bible and for years I read it daily.
Time ticked on. Our concern grew. She wasn't talking much, she was still only responding part of the time. She lacked focus. And she had so many quirks about her. Issues with texture, issues with certain foods, etc.
We continued to advocate for her. We were sent to several specialists. We heard the word "autism" thrown out several times, and I'll be honest, if someone told me she was autistic, I'd of believed them. No medical professional did, though. And I can't tell you how many times we were told to try and stop comparing her to her sister. This is both impossible and unlikely for any mother of multiples. Their big brother (first born) was advanced beyond words. Bayler was not anywhere close to where big brother was at their age(s). So, we felt that our comparison was fair based on an average child developing, who happened to be the exact same age (and also happened to sleep in the same crib)!
Eventually, Harper was tested and accepted into the First Steps program. She'd failed another hearing test and was delayed in other areas. This brought us Liz. I remember Liz being concerned when she very first evaluated Harper. I also clearly remember her saying the words, "It's almost like she's a completely different child than the one I tested" during one of Harper's very first sessions with her. But, still we pressed on with speech therapy.
Months turned to years. Years led us to accept the fact that Harper simply "beats to her own drum" and if I had a nickel for each time we said that to explain her behavior, I'd be RICH!
The girls started school. As a mother of twin girls, I can tell you that there's really nothing worse than having twin girls during school ages. To watch one excel academically, socially and emotionally while the other struggles in all of those areas is beyond heartbreaking. But, we knew already that "Harper beats to her own drum.'
First grade was rough, I'll be honest. We couldn't let go of this feeling that Harper couldn't hear us. We took her to Children's Mercy for a hearing test. Harper failed. She was diagnosed with "Cookie Bite" hearing loss. Her hearing chart shows a half circle dip much like a bite out of a cookie. She was on the cusp of needing a hearing aid vs. not needing a hearing aid. We let her choose and she chose the aid. We were told that once you lose hearing, it doesn't return. We felt like this was an answer to prayers.. She also started speech therapy at school. We felt good about her future.
We made it through first grade with that hearing aid. Some days we felt like this was everything, but other days we felt like we were still seeing that "distant" Harper. We found ourselves yelling at her, constantly. And it was the flip of a coin of whether she answered the yells. Eventually, her frequent hearing test revealed a miracle. Harper's hearing had improved significantly. To the point in which she didn't need an aid at all. FROM ONE APPOINTMENT TO THE NEXT. It was a miracle and her audiologist couldn't explain it. We were more confused than happy over this and we found ourselves praying for clear answers.
We prayed the most prayers over their schools' Mixed Age program (one room with kids grades 2nd-4th). Our initial thoughts were that it would always be Bayler. But after reading the criteria, talking to parents and then to the teacher, we felt that Bayler, who is "just like her momma in every way" may due better in the routine and environment of the regular classroom. So, when we applied for one of them to get it in, during the spring of their 1st grade year, we put Harper's name on that list.
I will NEVER forget the day that Harper brought that envelope home. We had gone camping that weekend and when we arrived at the campsite, she remembered that envelope. I watched her open it and read that she'd been accepted. And I remember her saying how she "finally had something cool that Bayler didn't." It was both heartbreaking and absolutely thrilling in the same moment. And I was just beyond grateful that she was getting this "edge" she so desperately needed.
Harper started Mixed Age last August in the 2nd grade. She'd had a rough first grade year and were eager to see how this program would shake out. Her testing in reading revealed that she was on a first grade level. Not horrible as a second grader, but not great for her particularly when sister was bringing home 5th and 6th grade level books.
Not long into the school year, we received an email from her teacher. This email stopped me in my tracks, I'll be honest. It described a child of mine, but in our opinion, the wrong child. Defiance, disagreeing, not listening...those were words we typically used for our independent/feisty Bayler Paige. And because it came from a teacher that didn't know our kids at all, I immediately felt confronted with this feeling I couldn't shake. It bothered me so much that I also sent it to my mom. And then, as I drove down the road a few minutes later, I felt like God pushed a word into my mind. I then sent another text to my mom and said, "Do you think Harper could be having seizures?"
I got home, I sat on Harper's bed. I still had a couple hours before the school day was done and I prayed the prayers of a desperate mother. "God, this email has me shaken and I can't help but feel like something is wrong. God I've felt this feeling for over 8 years now...and I'm begging you to fix it."
In only the third time in my whole life, I felt God speak words directly to me. "Call a neurologist." The instructions were so incredibly clear that I picked up the phone immediately. Of course, explaining that your child needed a neuro appt because "God told me so" doesn't go over quite as well. But, the woman either believed in the power of the Holy Spirit or she completely thought I was crazy and indeed needed my child seen, because she got us an appt for two days later.
That Thursday will go down as one of the hardest days of my life. In a SEVEN hour appointment, I watched Harper be poked, prodded, tested, quizzed, read, read to, listen, talk, etc. I explained how I felt about her from day one and all that led up to this day. To finish our testing, they performed and EEG. I was able to sit in the room with her, but was told to be quiet. She was instructed to breathe in and out as quickly as possible to induce hyperventilation and put herself to sleep. Thirty seconds in, she stopped. I immediately said "You have to keep going, Harper! This test is soooo important and if you don't sleep, it won't be accurate" She stared straight through me with that blank look I'd seen so often. I raised my voice and threatened her to start breathing again. She did.
The test ended and 7 hours later, we were headed back home. The next day, we go the call. We had to come back on Monday. I asked if it was necessary to pull her out of school. We were told it was.
That day, with Harper on my lap, I listened as the doctor delivered the diagnosis that I KNEW would come.
Harper has epilepsy.
Harper's EEG revealed more absence seizures than they could count. Periods of "Blankness" while the brain takes a pause, then restarts a few seconds later, not ever knowing it paused in the first place. I then asked two questions. The first, "was she born with this." He was certain she was. Second, "During the EEG, when did they start?" He said "The first to show up was when she stopped breathing while we tried getting her to sleep." She wasn't being defiant, she was having a seizure.
Harper started medication that day and two weeks later an EEG test revealed they were working and the seizures had stopped. We have been told that there's about a 70% chance she will grow out of these by her early 20's.
That same day we were officially told her diagnosis, I opened an old Bible and a piece of paper fell on the floor. In a complete GOD written moment, I opened up an email that was 7 years old. "I believe that God will reveal what is wrong with Harper in his perfect timing."
To say I wept would be an understatement.
It's been just over a full year since Harper's diagnosis. I can tell you that we forgot her medication for a week at the beginning of the school year and both her teacher and her parents can tell you that IT MATTERS! In one short year, we feel like we have a different child. She's still the complete opposite of her sister, but it's amazing what a difference a normal functioning brain can make! Her reading level is in her grade level and almost above. She started 2nd grade with a first grade reading level and ended it with a 3.9. Miracles.
We have appointments every few months and today's appt revealed that the meds are working perfectly. Harper is happy. Harper is healthy. And she's honestly a freak of nature with the blood draws! LOOOOVES them! (Seriously) And while she beats to her own drum most of the time, still, it's a different drum than before.
It's taken me almost a year to get rid of guilt I shouldn't ever have felt in the first place. I know that God revealed the answers when we were supposed to have them. I don't understand his timing. I don't like his timing, But I know that it is perfect. I know that he orchestrated a divine plan. I know her classroom, her teacher, and all the doctors in between were put in place by The Creator. I am thankful for this child of mine. She is one of a kind and we can't wait to see how God uses her in a MIGHTY way for the future.
Parents, if you're struggling with God right now on behalf of your child(ren), I get it. But know this...his timing...it's far greater than you will ever know. Pray. Advocate. Be patient while not backing down. He's got Harper. And He's got your babies.
"God is in the midst of her, she shall not be moved."- Psalms 46:5
Whitney B. Cromley
Follower of Jesus.