Randi Zaila is mother to four and her youngest, 7 month old Sonya has CDKL5, or cyclin-dependent kinase-like 5. CDKL5 is a rare genetic disorder linked to the X-chromosome that results in early onset, difficult to control seizures, and severe neuro-developmental impairment. She also has CVI and I met Randi in a vision impairment group on facebook. Randi blogs about Sonya’s journey at Sonya’s Story. And today, she’s sharing what a regular day looks like for her family.
There is a low tune playing behind my head. I reach back quickly to swipe the arrow across my iPhone so the alarm ringing won’t wake Sonya up; it is 2:55 am, time for her Charlotte’s Web Hemp Oil. I hit the dim setting on the light behind the bed, and grab the bottle sitting on the pull out drawer in-between Sonya’s bed and myself. Through blurry eyes I manage to shake the bottle, grab the dropper, and stumble awkwardly over to her. I count out 4 drops…or I attempt to considering I can barely see straight and she is not so forthcoming about opening her mouth. She turns her head from side to side in protest as I am sure I just interrupted what was finally a nice dream. I watch her swallow (as I pray to G-d she won’t get annoyed with me, wake up, and then want to be fed at this ungodly hour), count out another 3 drops (I hope). I place the dropper back in the bottle, tighten the lid, hit the light switch, and back to sleep we go.
I hear a whimper…it is 3:13am and it appears my attempts at quiet were futile and now it’s time for a midnight snack. I am really starting to develop negative feelings towards this hemp…it better work some hardcore magic. In a drunken stupor I carry the bear over to the rocking chair so my back doesn’t protest while she eats. Even our almost 7-year-old cat knows the routine as she attempts to uncurl herself fast enough in hopes tonight I won’t sit on her. It’s a near miss, but clear escape for her this time. I hear the deep breaths of Big Sister, and low and behold she is sleeping next to hubby…AGAIN for the third night in a row. I silently debate the pros and cons of this arrangement and decide I have no energy to wake either of them and besides she is only young once. It is now 3:23am; let’s try this sleep thing again.
The last thing I am aware of is the back of my eyelids when I hear the scream. My body knows this scream like a lifelong friend…my feet hit the floor before my eyelids are lifted. Her body is equivalent to the feeling of a dead hamster, yet I somehow manage to get her in a hugging position. I swipe my phone; it is 4:18am. I rock her and kiss her wondering if I burped her well enough an hour ago. When it’s finally over I see it is only 4:21am, good 3 minutes, it felt much longer. Her body continues to tense, but her limbs are limp so I call for Sam who holds her and reassures me it is just the chills. I hear Middle Sister, maybe her body is silently woven to her sister because she makes a sleep whimper and puts herself back to sleep (thankfully).
Sonya and I cuddle under the blankets, and yes, it was just the chills as she is now back asleep and relaxed. The damn cat is trying to cuddle as well…I have tried to shoo her 3 times already since the seizure began, can’t she take the hint?!?! It is 4:37am; I place Sonya back into her bed and cover her. She is so peaceful looking. She shuffles a bit and I wonder if she’ll need another snack. It is 4:42am and I am actually contemplating this sleep thing again….
Again there is music in my ear; it is 6:55am and time for Keppra. The syringe sits pre-filled next to the Hemp Oil so I don’t have to do more than roll out of bed to administer it. I glance over my shoulder and see a sleeping Sam and Big Sister. Normally by 6:00am little man would have been by the foot of our bed telling us why he does not want to get dressed for school, but of course, not today. I tell my husband to move, and then drift off to sleep, even though I know I have to get up to pack lunches. 7:14am reads the clock; I encourage everyone to start moving. Big Sister is turtling her way about her morning routine, and our dear son has started his morning protests…Middle Sister and Sonya remain asleep, for now.
I walk out to the kitchen and check the lunch menu, “Macaroni, grapes, and snacks”; thankfully the box of noodles can cook in 5 minutes since that is pretty much all the time I have. 18 minutes behind schedule, the kids are off to school. Middle Sister is ready in her gymnastics clothing and I finally start to get ready myself. I throw a load of laundry into the wash, switch the wash load to the dryer and begin to fold the clothing that sat in the dryer overnight. Around 8:20am I hear Sonya start to whimper; it is her post seizure coma whimper, she is finally ready to eat after her episode from 5 hours ago. I feed and change her, and my sister and nephew pop in to say good morning. My phone has already rang twice since 8:00am, but I have not checked it. I am packing Sonya’s swim stuff because today is aquatic therapy day. I hit play on the voicemail assuming it is just the follow-up call to our OT evaluation last week, that I never had a chance to return on Friday, but instead it is the office calling to tell us Mr. Mike is sick, and there won’t be therapy today.
The tears fill my eyes as I realize she has not had PT since August, nor will she until October due to scheduling conflicts. I feel like I am a failure. I send Michelle, our movement lesson guru a FB message asking if she has any additional morning slots open, knowing she is booked, but hopeful for a cancellation. Sonya still hasn’t built up her energy from her earlier seizure and she is asleep on her play-mat. I move her bed. It is 9:28am, when it dawns on me that I hit snooze on her 8:55am Topamax alarm because I was on the phone, I HATE WHEN I DO THAT. Thankfully it is within the hour window, so I go over to her and she takes it while she sleeps.
She of course wakes up and I feed her. Then it’s back to work for her on her tummy in an attempt to work on her arms. I bought a wedge off of amazon, it isn’t what I anticipated, but it will work. She can at least stretch her arms to try to bear some weight. Middle Sister is eating some yogurt and skittles (I know so healthy). My alarm rings for her 10:55am Hemp Oil.
We get all packed up and head off to the chiropractor by 11:40am. Sonya gets adjusted and Dr. Danielle and I chat so we are there for about an hour or so. Sonya has a quick lunch and diaper changes occur. Afterwards we head off to movement lesson, Mickey Mouse and the Three Musketeers is playing for dear Middle Sister while she eats her lunch. We get to Michelle with a minute to spare before our 2pm lesson. We discuss my most recent concerns regarding Sonya’s questionable physical movements, I am not sure if they are sensory related, CDKL5 related, or just “baby do weird things movements”. I show her a video of Sonya holding her toe and sucking the pacifier while we were with Dr. Danielle!!!
We rush out of Movement Lesson and I mute the 2:55pm Keppra alarm. I call Sam to tell him to meet us at gymnastics so we can do the child swap. He meets me at 3:52pm; no way will we make it to dance 60 streets away in 8 minutes. Big Sister changes quickly in the car, he hands me the requested Tylenol I texted him about earlier due to Sonya’s crankiness, and Middle Sister gets transferred out of my direct care.
Big Sister and I share a little small talk and then she drifts off to sleep for five minutes. Surprisingly we get to dance only 8 minutes late. Of course it dawns on me as we are rushing out of the car that I AGAIN forgot to give Sonya another medication on time today. This time her 2:55 Keppra dose will be an hour and 15 minutes late. I yell at myself again. I lug the car seat out of the car with Sonya’s bag and Big Sister’s dance bag. Sonya and I take up our usual spot on the floor outside dance class.Sonya decides she wants to eat again, so we alternate sides and then she chats up all the dance moms. She always likes to talk to people when we go out, and it is so nice to hear her cute little noises. We go upstairs for Big Sister’s second class and Sonya can get some floor time in. She does some rolling and ends up on her tummy. At 6:00pm class is over, but Big Sister enjoys taking her time, and I talk with people in the studio so we don’t leave until 6:18pm. We finally arrive home close to 6:45pm and Sonya goes on her play-mat and gets the Tylenol I forgot to give her, Middle Sister and little man get some tickle time, and Big Sister is asked 3 times to put her clothing in the hamper, change into her PJs and eat her dinner. 6:55pm the alarm rings for Sonya’s hemp oil, this time I only forget for 3 minutes before the panic of missing the dose sets in. She eats again while I eat my luxurious dinner of chicken nuggets and french fries Sam threw into the oven for me.
I hand Sonya off to Sam at 7:40pm and jump into the shower for some much-needed alone time before he will head off to hockey and I’ll be back to manning the post. I sit down at the computer. All kiddos are in their beds; it is 8:35pm.
Then the scream. For 3 minutes I hold Sonya tight as she convulses against me and whimpers. The tears fill my eyes, anger fills my entire body, Taylor Swift plays in the background and I just picture Sonya “in a nice dress, staring at the sunset, red lips and rosy cheeks”. The alarm rings, it is 8:55pm. I am back in reality. Her last Topamax has been given for the night, her two dosages of Keppra are filled and ready to go, sitting next to them is her Charlotte’s Web hemp oil; and I’ll be heading off to have some of my “Wildest Dreams.”