Its 11:30pm and I don’t know if I should go to sleep.
As I type this out, I watch my daughter sleep and am plagued with the thought that I can’t protect her from the struggles she endures. One of the most natural feelings of being a father is to be your children’s protector. I slowly realize, however, this is not my reality and I cannot protect her from everything. It tears me up inside and I struggle with my own grasp on what my duty is in her life.
Hayden’s most prevalent struggle is her epilepsy. It can strike without a moment’s notice. It can turn a great day into one that I wish I could just fast forward (or rewind). Hayden goes from happy and interactive to unresponsive and not breathing in seconds. Her seizures bring unwanted complications and struggles. Too many medications have failed her. We continuously search for hope that we will eventually find a treatment that will take away her seizures, but that is not our reality (at least not now).
A little about seizures, everyone could potentially have one. If my mind and body are put under enough stress I could have a seizure. The difference between me and Hayden though, is she has an extremely low threshold for seizures. This means that when she gets a cold or sick, she seizes. When she is teething, she seizes. It means a new location or experience can bring on a seizure. It means that there can be dangers with many aspects of a normal day. We find ourselves always scanning the world around her to try and eliminate unnecessary triggers that might cause the next one. But most of the time this is impossible.
I can’t predict what her brain or body is doing at every point. There may not be a visible trigger. This is something I need to come to terms with. There is no predicting that the next one won’t come when she is walking down the hall or while she’s sleeping. There is no predicting what happens as a result of her seizure. Will she recover from the next one? Will we be dialing 911 this time?
With this on my mind every hour of the day, it is now 12:10am and I have no desire to go to sleep.
Yesterday Hayden had four seizures. Last night she had three. Today she had two. Today one of the seizures was different. In this one, our ‘normal’ expectation of her typical seizure suddenly became an overwhelming fear that she may not start breathing again. Her seizure fades away and she becomes limp in my arms. Her lips and face turns from blue to purple and fear becomes overwhelming.
Why is this happening? Why can’t I protect her from this? Would I need to perform CPR?
While it was all happening, we called 911. She finally started to slightly breathe as we were talking to the dispatcher on the other end. The color in her face started to slowly return. The paramedics arrived seven minutes after we made the call. After half an hour Hayden became more coherent and showing signs of recovery.
The paramedics monitored her for a while, asked a bunch of questions and then gave us a choice. Bring her in to the hospital for further testing, or manage from home. To most, an event even a fraction of this would encourage a trip to the ER. Seems that it would be an easy decision, but bringing her into the hospital also poses many risks and we have managed her seizure recover many times before. We chose to keep her home and keep a close eye on her. This is not an easy decision. The dilemma that we face far too often and sometimes are haunted for making the wrong one. On one hand you want every little bit of information to know that your child is safe. On the other hand, the emergency room is full of sickness, which also puts her at further risk of more seizures and adds an unreasonable amount of stress on us.
It is now 1 am and ill I can think of is I need to stay up for her.
We have three monitors going as she sleeps in her crib. She has a pulse oximeter that alerts if her oxygen or heart rate drop too low. She has a crib mat under her mattress that detects breathing movements. She has a high definition video camera that I spend so much time watching. But even with all the monitoring, sometimes the seizures still slip by. So as I write this I also watch the video feed closely. My choices in front of me are this. I could trust that the monitors will alert us, (try to) get some sleep, and risk not being there with her through another seizure, or I stay up and watch her. I need to show up to work tomorrow so I know I need my sleep, but the fear of not being there for her if something were to happen haunts me, and so I stay up. I don’t know if I will have a change in thought later on, but at this moment I cannot break myself away from the monitors and feel like I am doing the right thing.
I try to find something productive and positive to do while keeping a close eye on her so here I am. Many nights have been spent scanning the monitors, writing journal entries, and dreaming how I can provide her with a better life. It is sometimes impossible, but I cannot let fear take hold. It’s been a painful, beautiful, and confusing journey. I have come to accept that I cannot and will not be able to protect her from everything, so my role as her ‘protector’ has changed to this.
Be there for her through her good times and her struggles.
Tell her you love her as often as you can.
Show her that she won’t face these challenges alone.
Advocate for her.
My journey as her father has led to all sorts of highs and lows. It has been faith challenging, eye opening, and soul crushing. It has been life changing, and I feel incredibly blessed for this life.
Hayden has been and is my teacher. My life coach. Through the struggles I face as her dad and a result of certain parts of her condition, she teaches me how to grow and learn from the challenges to help me not take the important things for granted. She teaches me what I need to strive for in our future. She has shown me her incredible strength and resilience to be able to handle the struggles in her life. She has taught me that it is ok that I cannot protect her from everything.
One of the most important things I can do for her, is to be beside her, telling her how proud I am of her, and that I will be there through it all.
