This blog is a bit dusty and definitely very lonely. For a long time, it was a place for me to share my heart and soul but for multitudes of reasons I laid it by the wayside.
Seven years ago, Little Girl came crashing into our lives.
To say that she has been a big part of why my voice went quiet would be putting it mildly.
When she first came home, she was a seizure nightmare. Every five to ten minutes she crashed to the floor with major drop seizures and between all those she had hundreds of small eye-blinking seizures.
On a very rare good day she had less than 30 drops. On a horrific day 150 or more. The eye-blinking we didn't even bother counting.
But we did not despair because in our naivety we thought that the doctors could easily fix her up.
So we tried different drugs only to find out that inside Little Girl is a monster that comes unleashed when certain types of drugs are in her system. I do not want to remember the despair of those days when those drugs made her try to scratch my eyes out.
When drugs failed we switched to the Keto Diet. We jumped for joy when her drops disappeared - only to cry in despair as they came back bit by bit. We adjusted the diet, added medical marijuana, had an implant placed to sent electrical impulses into her brain every few minutes. We added another seizure med.
And again, we jumped for joy as the drops decreased.
It took years but bit by bit she no longer fell to ground.
But all the while those disappeared she threw at us new seizures - the kind that stem from those quiet eye-blinkings that we ignored because drops were so much worse. We thought. Those eye-blinkings grew and grew and became the new monster. They cluster and send her into non-stop seizing. Non-stop means non-stop. She won't stop seizing until we give her rescue meds.
At first the non-stops were just cluster after cluster but then that too morphed and became a new monster. They morphed into tonic-clonic seizures - full body writhing. Lately those have morphed. Their intensity ever increasing. Scaring us.
We are trying new drugs but no change. Daily we are forced to rescue her one, two, three or more times.
But the seizures are only part of Mary's story.
The other part is the part that I rarely ever talk about.
The autistic part of Mary. Yes, I said it. Little Girl has autism. We've known it for years but the official diagnosis came this summer.
Mary's type of autism stinks. There I said that too.
Mary also has developmental delay. Break my heart I said that too.
Mary has two extremely rare genetic anomalies. Both of those come with a wide range of symptoms. Seizures, autism, developmental delay, ADHD stand at the top. There are loads more symptoms but those are the ones that derail us. They derail her.
Mary's behavior has been a big part of what has silenced my voice.
She wears me out. Between her seizures and her behavior I feel like we are on a treadmill of exhaustion every single day.
Early mornings are given to getting her seizures under control as she switches from sleep to awake.
When she is finally awake, fed, dressed - we then get to see what Mary we will deal with on that particular day.
Bad seizure days subdue her - she's content to build puzzles (which is one of her strengths) or color or look at books. She's quiet and sweet and easy and if not for the seizures, we'd wish for those Mary days all the time.
On days when the seizure are mild to moderate she's full of herself - tossing back and forth between hyper and oppositional. Much of her behavior comes out of her mouth. She speaks her mind. Verbally tells us off. There are no reasoning skills one can use to move her mountain. She has no filter and no impulse control and her agenda is her agenda and that's all I need to say. She can be extremely funny on these days and terribly frustrating to the point of tears.
On the rare no seizure days - Instead of rejoicing we cringe. The lights are on in her brain and the stimulation of the world sends her into a frenzy. She's out of control. Emotionally, behaviorally. We are left crushed in her wake. Sadly - those days are usually followed by a major crash seizure wise and we cycle back around again.
Those who know Mary in public often don't see all of the many sides of Mary. Unless she is actively in non-stop seizing or unless you watch her closely - you miss seeing the eye-blinking seizures that rule her world.
When she's in a group she tends to be quiet. Unless we are in a store where she goes into sensory overload, she's mild-mannered. Since so much of her behavior is verbal and being out in public is a happy place for her - it's easy to assume that she is a sweet, compliant, beautiful little girl.
And we are left even more exhausted. Few understand what it takes to deal with Mary.
To the world she is adorable. To us she is our hysterical wild child who has us pulling out our hair and grinding our teeth in despair.
We love her. We sometimes wish for peace.
We do have aides who help us. We are not alone in our world of Mary. We are forever grateful for them and all they do.
But we are tied to Little Girl. We are always within a 10 mile radius of her. We are always on guard. 24/7.
She is never alone. Never without eyes on her. Even while sleeping.
Seven years home.
Seven years exhausted.
We would choose to do it again if given the choice.
And that's just plain crazy!
