I have never said Parenting was easy.
But I was just starting to figure it out. I was just starting to get used to the demands and the schedule and the routine. Sure, those all change on a daily basis too... but I’m assuming if you’re reading this, you too are a parent and you know what I mean. It’s been a few years now and my identity has changed. My priorities have changed; and now without hesitation when faced with a decision, I weigh my options with my kids and family in mind. I had confidently reached that point.
I think it took me a bit longer to get there because for the first 20 months, we had it good. Liam was exceptional, and still is. This has been confirmed over and over again as strangers, childcare providers, friends and family tell us that they see it too. And then we had our twins. I have to be very careful with how I word this, because obviously we love them dearly and they are our precious children... but they turned our world upside down, and not in a good, fun way. My wife and I have never struggled like we have for the last two years. We’ve never been more isolated and lonely as we’ve been in the last two years. We’ve never needed more help just to survive, than in the last two years. But we managed. We even started a non-profit organization called Parenting 101 through it all, to support and educate other parents who may be going through similar circumstances.
But then Madison stopped progressing and hitting her milestones. No big deal... we just needed to spend more time with her. Easier said than done with three kids under the age of three, but I did my best. I discovered that she LOVED being outside, so we went out every day. She (and her brothers) showed a completely different side to their personality when we were outside. This was working.
But it wasn’t. She kept falling further and further behind. Working with her got tougher and tougher. Our medical team quickly flagged her for Autism. Our hearts sank, but we couldn’t deny something was wrong. In fact, we could see it the clearest.
Then in May she started regressing. For over a year her growth and development was so minor we almost missed it, but then suddenly all those tiny advancements were abruptly swept away; and we noticed that!
She finally took her first unassisted steps just days before her second birthday, and then just like that, all the hard work, the hours of effort were swept away and she hasn’t taken another step since.
She used to pull herself up against the window ledge to look outside, or the TV stand to dance with the baby songs, or onto the couch to play with her brothers, but that too is a distant memory as she hasn’t used her legs in the past four months now.
She used to babble and we were told we needed to work on her speech. She even started to see a speech therapist. Now, she makes two sounds - a happy cooing and an agitated cooing or murmuring.
And that’s just the tip of it. I could keep going, spelling out every detail of her now severely troubled and challenged life. And eventually I will, as this is inevitably going to become a major part of my parenting journey, but for today I’ll leave it at that.
With this extreme regression occurring we were all but certain she did NOT (just) have Autism. There were too many abnormalities and changes in her behavior and habits, and none aligned with Autism.
We left our pediatrician as he couldn’t see anything BUT Autism and refused to listen to us. We wanted to start over. We knew it would be a lot of work, but a fresh start might change everything.
During the first visit to our new pediatrician, he asked a lot of questions regarding Madison’s 2 year history, and then listened closely to my responses. When he was done gathering information, he asked me why I was there that day - what was my concern. Unbeknownst to me, I used a word medically equivalent to a four letter curse word. I told him I believed Madison was regressing.
He almost went pale and became very serious with me, demanding more explanation and confirmation that I was using that word correctly. Once he confirmed I was, he spun around in his chair and logged into Madison’s records and prior test results. He noticed a string of abnormalities in her genetic spectrum blood work that our first pediatrician had overlooked, prompting him to do down the genetic disorder list of diseases.
After doing a full physical exam of Madison he agreed with me. He saw too many oddities and believes Autism was a misdiagnosis - or that there is another, more important layer to uncover. He lead me to discover and confirm that she is presenting positive for 100% of the signs and symptoms of a very rare, and severe spontaneous genetic disorder called Rett Syndrome. With these new findings, he gave me five, high priority referrals to complete a full spectrum of tests - including seeing a geneticist to obtain an official diagnosis (or non-diagnosis) of this genetic disorder.
We are now in a holding pattern, anxiously waiting for our appointments and tests to confirm a diagnosis. We have done hours of research and reading. We have met others (online) who have children with Rett - it’s a very small community - and our suspicions have turned to all but certainty as we believe Madison could be a poster child for this disease.
If confirmed, she will likely remain non-verbal for the rest of her life. She already has lost the ability to stand and walk and that likely won’t change either - she will be bound to a wheelchair. In some cases, they do learn to walk, but it’s been likened to a stiff, drunk sailor. It’s slow, awkward and very unsteady. Her hands are going now too. She has lost the ability to pick up small objects with her fingers. Then we’ve been told that in 80% of cases, the patient starts to experience seizures around 2-3 years old. We haven’t had one yet, but it’s now a concern. And those are just the just the biggest obstacles. There will be other challenges around every corner.
Just imagine the symptoms of Autism, Anxiety Disorder, Cerebral Palsy, Parkinson’s and Epilepsy all rolled into one beautiful, sweet little girl.
I never said Parenting was easy, but why does it have to be this difficult?!? Isn’t typical “parenting” tough enough at the best of times, with a healthy child? It feels like if this officially ends up being our reality, it not only takes everything away from Madison but it also takes away the light at the end of the tunnel for me. She will need someone with her 24/7 for the rest of her life.
I’m really struggling with everything. It feels like I’m back on the starting line of an unfair race. When something really bad happens to someone, people tell you, “everything happens for a reason”. I know this better than anyone. Trust me, my whole life has been “everything happens for a reason”. The only problem is that no one has ever discovered what the reasons are.
It feels as though I’ve been through a thousand different painful experiences in my lifetime, with no hope of understanding the reasoning behind them.
I hesitate to share my feelings on this especially when talking about my kids, but it’s my truth.
I don’t know what the path is going to look like for Madison or for our family in light of recent discoveries and a pending official diagnosis but it certainly wasn’t on my radar when we first became parents, and I’m not sure I’ll ever regain my confidence in our particular parenting world.
I can only hope that the village we so desperately are striving to recreate for others will in turn be recreated for us too—God knows we’re going to need it.