This has been my daily routine for months. Watching Elise with an eagle eye while I’m doing house stuff. I’m glad I got her a new dining chair that is harder for her to fall out of. She keeps collapsing at the table, yet when I move her over to the couch to sleep it off, she pops right up and wobbles back to the table! I am catching her multiple times a day, guiding her to a safer position or supporting her head while she works through a seizure. Trying to take care of laundry, dishes, cooking, one ear always tuned to pick out certain sounds she sometimes makes if she is about to go. It’s gone on long enough that I am afraid that this may be our new normal. A normal full of wound up tension just waiting to be released. A normal full of lifting, carrying, adjusting her rigid teenage body. A normal full of tears and frustration on both our parts.
I will be honest, sometimes I am resentful of other families’ “normal” routines. Being able to go ANYWHERE as a family without the constant stress of managing a special needs child: beaches, hikes, parks, restaurants, movies, you name it. Being able to go on a LONG date with my husband. Being able to travel. Being able to go to work without the nagging fear in the back of my mind that just MAYBE something will go terribly wrong and I won’t be there to manage it.
Eric seems to handle it so much better than me. I don’t know if it’s a Daddy thing or an Eric thing. He’s just solid. Always there, always ready to take care of the heavy lifting. But he doesn’t seem to internalize it as much as I do. He just takes what comes to him and makes the most of it.
Sometimes I feel like I am in a constant state of mourning. Mourning the loss of what I thought life would be like for our daughter. Mourning the absence of significant milestones and achievements. Mourning the loss of experiences and memories. But every once in a while I’m able to break free from the fog and recognize the beauty of Elise’s life. The joy and wonder she brings to our family. Her ability to pass through significantly traumatic episodes, and come out ready to smile and laugh, so eager to embrace her little world that she ignores my protests to sit and rest. I learn so much from her.
But sometimes it’s really hard to be her Mamma...
This is REAL. This is RAW. This is the reality of mental stress and overload...a good day here and there, where things feel like they are calming down and emotions are under control. Then there is a bad day, and a worse day, and a day that feels like nothing can ever be normal again.
Why am I posting this? It isn’t for pity or sympathy, or a cry for help. This is for someone out there who needs to hear that it’s okay. It’s okay to feel overwhelmed and out of control, to feel like there is nothing but darkness, because there are also days of light. There are days of sunshine and laughter, quiet talks and simple joys. Give yourself grace. Allow yourself to grieve, to succumb, to need, to pray. I know that I needed to hear that today. And tomorrow is going to be a little bit better. I can feel it....
This weekend has been so hard. This beautiful, wonderful child has made our lives so complex during this crazy time. I’m not sure if she is reacting to the stress of change or has been fighting a bug, but her seizures have been OUT OF CONTROL. She has nearly fallen off her chair at the table three times this weekend, with Eric or I barely catching her in time. She has dropped more times than I can count while walking, and I can’t tell if she is seizing because of the fall or if the seizure caused the fall. She has been combative as we are trying to help her with anything, pitching a fit when we don’t let her walk on her own or stay at the table. She had so many seizures tonight that we wouldn’t let her stay at the dinner table. I fed her chicken nuggets on the couch (we NEVER let her eat on my new couch), trying to help guide her hand that could barely grasp the food, but she was so stubborn about any help that she got catsup all over herself and me. Finally Eric carried her up to bed, which he shouldn’t have done since she is getting so heavy, but we couldn’t let her climb the stairs in her condition. This is turning into a nightmare. And all weekend I was thinking about how I was supposed to be in Hawaii right now, visiting my daughter and meeting my new grand baby.
I hope that things in our community will change quickly, getting back to normal (I know they won’t quickly.) I hope that the kids can get back to school and Elise can receive the therapies she needs to improve her cognitive and physical condition (I know they won’t this year.) I hope that I can get back to work and see the patients and staff that I love (fingers crossed on that one.) I hope that I can mentally find the strength to get through another week of the same battles and same nothings (fingers crossed on that one too.)
Just changed my first feeding tube!! That was intense psychologically, but to my surprise was technically easy....I feel like I just sweat a bucket, though!! 😰
The next time should be easier....🤞
Elise's journey, and our journey with her, began more than fifteen years ago. I can't believe it has been fifteen years...
Fifteen years of heartache and joys, struggles and triumphs, regression and advancement, laughter and tears.
As I reflect on those first few years I am reminded of how difficult those days were. The bleakness of the future weighed upon me like an impossible burden, one that I physically could not bear. I mourned the loss of this child's future life, a life of growing up, creating a life for herself, even marrying and having a family of her own. Everything looked gray...endless gray, without color or light.
But somehow we got through those years. We grew stronger. And as we watched our little girl grow, the light she brought into our lives became more and more obvious. Things even started to get a little easier.
For several years, once we figured out some key combinations of medications, Elise had no seizures. She may have had a few breakthrough seizures when she spiked a fever or was fighting a virus, but in general the seizures were well managed. We began to breathe easier. This was not so difficult, right? This is so much better than we thought it would be! We basked in the comfort of cruise control.
Elise made great strides during this time. She learned to walk, she started saying some coherent words, she could recognize the letters in her name, she could hold a pencil or crayon and draw on a piece of paper.
You can't remain in cruise control forever, though.
When Elise started in middle school, things began to change. Hormones were starting to kick in, wreaking their havoc on EVERYTHING! Suddenly she wasn't as steady on her feet. She would fall more often. Her dexterity decreased, and she started to drool more. She began to have more breakthrough seizures--once a month, then twice, then every week. Then the drop seizures started, where she could be walking or sitting at the table and suddenly drop like a rock. Or the grimacing seizures, where she would make a gut-wrenchingly pained grimace on her face and turn her head so hard and tight I was afraid she would injure herself. Or even worse--the screaming seizures, where she would suddenly have a look of absolute terror in her eyes and scream and scream and scream.
What happens to a parent when they watch their child go through so much pain, terror, exhaustion? What happens when this starts to become so common that it is the family's new normal, when this is their everyday life?
I knew that I had to be strong. Elise needed me to be there, to take care of her needs. I also needed to take care of our family. I have three other children and a husband. They all require feeding and clothing and housing and loving....That's what moms do. We nurture, we care, we lift, we protect. I thought that I was okay.
I was not okay. And not only was I not okay, my family was not okay.
It took almost a year for me to realize that I was not okay. It took almost a year for me to ask for help. It took almost a year for me to recognize that something had to change. I knew that our situation would not change. Elise's condition would never miraculously disappear. I was drowning, and I was taking the rest of my family down with me because I was afraid to reach out for help.
This post is for the moms--
The moms who can't stop crying because they spilled a bag of sugar. The moms who can't crawl out of bed in the morning because the weight of the day is too much to face. The moms who suddenly scream at their kids because they refuse to pick up their shoes in the entryway. The moms who no longer respond to friends' texts and cannot bear to go anywhere that requires socializing. The moms who have to apologize to their kids' teachers over and over again for not completing homework. The moms who can barely put cold cereal on the table for dinner. The moms who stand in the shower at the end of the day sobbing, where no one can hear her.
You are not alone.
This journey is hard. Some parts of the road are downhill, where life flies by so quickly you can barely catch your breath. But other parts are uphill, with ruts and pits in the dirty pavement, with obstacles to maneuver around, and with a vehicle that runs out of fuel.
Be sure to fill your tank.
I am still learning how to do this. It hasn't been easy. I started on my knees, pleading with my Heavenly Father to give me strength and know what to do. I felt prompted to reach out to some close friends, friends who I knew would love me and embrace me no matter what. Then I saw my doctor, started taking some medications, and went to therapy sessions. I learned to talk about things, to express my fears, and allow myself to be heard. I cut myself some slack, released my self-imposed expectations, and let others serve me. This was not an overnight change. It has taken months and months, with countless teary phone calls, generous hugs from friends, precious and raw conversations with my husband, and quiet hours on my knees.
Am I "better" now? Yes, I am better than I was before. Does that mean I am "okay?"
Before I was lost in the dark, blind and numb. I vascillated between feelings of panic and a crushing weight on my back to periods of staggering numbness, where I could not remember the last time I had felt true joy.
I still feel these things at times, but the periods are much more brief. I am able to see the light and joy at the end of the darkness. I am able to remember faith and overwhelming peace. I am able to recognize the astounding ways my family and I have been blessed. I am able to remember hope.
I am able to be Elise's mom.
This blog is all about this spunky, sweet, independent, loving girl and what life is like living with lissencephaly. Welcome!!