Tuesday morning began almost like any other day. I got up at 6 and usually if Lydia isn’t up already, she is very soon after me. But she didn’t get up. This always makes me worried. The more time that went by the more worried I became. Finally around 7:30, Mark went in and Lydia was just waking up. I laid her on her mat, as I do every morning, to take care of her G-tube and give her morning meds. Ben was talking to me while I did this and suddenly Lydia began to have a seizure.
It was so hard.
I called out to Mark and he ran in. It lasted about 30 seconds. Lydia was so still when it was over. Mark and I were talking about what to do, and Lydia began having another seizure. Mark recorded it and time felt like it stood still. This happened again and again. Lydia had four seizures – each about eight minutes apart from one another. After the third one, I got on the phone with Lydia’s neurology team while Mark stayed with Lydia. We were advised to go down to Children’s Hospital in Denver.
I called up our good friend, Megan, and asked if she could watch the three older kids for us. She immediately said she could and was an absolute blessing to our family this week. I was an emotional disaster. Normally, I am pretty good at keeping my emotions in check around others, but I couldn’t keep it together. We dropped off the older kids and made our way down to Denver.
After Lydia stopped having her seizures her body was completely limp. Her muscle tone is already very low, but this was new. It was very alarming to me and took about an hour for her to regain some strength. But by the time we made it to Denver, she actually almost seemed like herself.
Once we got to the emergency room, everything moved very slow. We showed the videos Mark had taken and then we waited. We retold the story over and over again and then the neurology team decided that they wanted to admit Lydia to the hospital for an EEG. Before we left the emergency department, they got Lydia all connected.
We learned that they wanted to do the EEG overnight – if not longer. Lydia got settled into her room and we agreed that Mark would go back to be with the kids and I would stay with Lydia. Looking back, it seems like it should have been obvious, but I was not anticipating a hospital stay when we left that morning. I brought absolutely nothing for me. And I had brought enough food, diapers, and meds for Lydia for the rest of the day, but that was it! So we were roughing it in a lot of ways. It was a constant struggle to get Lydia’s meds on time as well as food that she could eat. It kind of blew my mind how hard that part was, but we made it through.
Lydia took a little catnap but then was up and going for the night. She was happy and not in the mood to sleep! Finally around 2:00 AM – she fell asleep. She struggled though. I didn’t have any of her braces or weighted blanket or the other “normal” things Lydie has to sleep with and it made things really difficult. Every sleep cycle she would wake again and I would have to help her fall back asleep. It was a long night.
By 6:00 AM Lydia was up and going! We battled meds and food again in the morning and then at 9:00, someone from the neurology team came to talk to us. She had reviewed Lydia’s EEG and they discovered something.
I will insert what I learned the following day from Lydia’s normal neurologist because he explained it so much better than how things were explained that first morning. Lydia has a condition called Penelope Syndrome. It is rare. It occurs outside of Rett Syndrome, but does happen in about 10% of the Rett population. This condition is characterized by continuous spikes and waves while sleeping. During Lydia’s EEG, her brain was spiking over 90% of the time during sleep.
When this condition manifests itself normally, most people lose their ability to speak as well as experience regressions cognitively and behaviorally. With Rett Syndrome already a part of things for Lydia, this makes things extra difficult.
There is very little known about this and there is no treatment that has proven effective in containing it. So right now, they are starting Lydia on a seizure medication and hoping that helps minimize things.
It is so hard.
It is incredibly heartbreaking watching my sweet girl’s body fail her time and time again. This whole situation brought up a lot of negative feelings for me. It took me back to all of those days and days spent in doctor’s offices – scared of what they might find and also scared of them not finding anything because that meant no answers as to how to help Lydie.
My mind and heart felt so heavy. It is hard being trained in when and how to use “rescue meds”. It is hard having to have another heavy talk with our other kids about this new change for Lydia and what that means for our family. My mind stresses over every noise at night, wondering if Lydia is having a seizure. Our life feels so very different from everyone else’s. I learned enough from our past experience that the adversary loves to make me feel that way – to feel isolated and that no one understands.
But the Lord is so very good.
I have leaned so much into my Savior the last couple of days. And I love and appreciate all of the tender mercies of this week. From the moment we left the hospital and got to the car, Lydia has been extra happy and content. She has also not had any more seizures. She has not been showing any side effects from her seizure meds (which sometimes can be really tough). We have incredible friends who love us and support us. My calling has even been a blessing this week. We had an activity this week and my heart was not in it. I felt like a fake the whole time but it did yank me out of myself. It helped me see others and not just focus on the pain and hard of our family. And I am grateful for that.
Lydia is the greatest gift. I love that little girl more than I could ever say. This week brought up a lot of emotions for Mark and I. I told Mark one night that most of the time I can just put my feelings in a box and keep it tucked away in my brain. Because that is the only way I know how to live life. The box opens every now and again (usually at very unexpected times), but for the most part, I keep it put away.
But this week I had to open that box and add more to it.
But Lydia continues to be a shining ray of light for everyone. This last month, I’ve been reflecting on the story of Jesus healing the blind man in ways I never have before. When His disciples asked why, He explained “that the works of God should be made manifest in him.” And that is what Lydie does. I don’t understand all of why she has to go through what she does. But I do know that because of her, my relationship with my Savior has reached a depth I never had before. Our family is close. I am incredibly grateful for the relationship we have with one another. Lydie brings us closer to our Savior and His goodness. She is the greatest gift and is so loved by all who know her, including her Heavenly Parents and Savior.
We love you, sweet girl. Always.
