Wednesday, January 17, 2018

Tug of war

We finally toured Sonzee's preschool yesterday.  I say finally, because we have known since she was 2 months old that we wanted to send her to this school.  We have attended the family program on Friday's over the past 2 years, but have never actually set foot on the other side of the double doors.  We have one remaining meeting in 13 days that will make this next step our official reality.  I am filled with mixed emotions as my baby girl is getting ready to enter her first school.  On one hand they are the same emotions that have filled my head and heart as her three older siblings took these same steps, on the other hand, they could not be more different.

I feel like my mind is separated into two sides and there is a rope attached to both sides, for every happy emotion there is one that makes my heart sad, and I am being pulled back and forth between them.  I am so excited that Sonzee will have the ability to flourish in a new environment, but it is not in the same environment where her siblings are.  I am so thankful she will be in a classroom that is tailored to meet her needs, but she will no longer be home with me every day.  Her classroom while likely to be amazing and will provide her with the tools she will need, is not a typical classroom in any manner.  I am so grateful for the opportunities this school will undoubtedly provide for her and to her, but they are not the opportunities parents wish for their children to have to experience when they envision their schooling.

We walked from classroom to classroom, looking through the glass at the children as they learned.  We started by seeing those children who are developmentally the oldest; smiles across their faces, lights bright in the room, sitting around the table enjoying their snacks.  Multiple teachers and aids at their side helping them with their snack time activity.  As we continued our tour the lights in the classes were lower to help with seizure activity, and the centers were slowly replaced with several types of equipment.  Sam joked that there were easily thousands of dollars in equipment in one of the rooms.  My heart bursting at the idea of her getting to experience incredible opportunities that insurance would never allow us to do at home, but simultaneously hurting at the fact that she needs all the several types.

My baby girl is no longer a baby for all intents and purposes, but she will not be walking into her first day of school.  She will not require a teacher to hold her while she kicks and screams begging me not to leave her.  She won't come rushing back to the door or look at me with a face that pleads with me not to leave her with people she hardly knows for the day.  She won't give me kisses or huggies or tell me she loves me, to have a good day, that she will miss me or even say good-bye.  I won't look through the glass window and see her distracted by an activity, so she doesn't realize I am gone.  She won't glance back to see if I have walked away.  All the first days of school experienced since 2015 that brought me tears as I wondered how Sonzee's would go are about to come to fruition, culminating into the biggest game of tug of war.

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Monday, January 15, 2018


In 27 days we will be celebrating Sonzee turning three years old.  There are so many emotions accompanying my preparation for this day.  Three years.  It will have been three years from the day our family began the wildest ride of our lives and the day our little bear began a life full of hardships no person should ever have to endure, much less a baby/toddler/preschooler.  It will also be a day we weren't sure she would be here to celebrate with us, so I am doing my best to focus on this as the theme and toss out the heartache that comes with celebrating another year of struggles she will be sure to endure.

I cannot lie, there is honestly so much heartache that every moment is a struggle to remain focused on the fact that she is here with us; simply because of the daily price she pays.  I do not know why it is currently weighing so heavily recently.  I can only attribute it to watching her seize so often and be locked inside her body for her entire life to date.  I have this constant lump in my throat as I force myself to hold back tears over these thoughts, but mama bears heart feels like it has been stabbed a million times, and sadly I know one day it will fully break.  As we get deeper into this journey, it all gets harder to accept.

On paper Sonzee is turning three in just 27 days, but there is nothing that represents that fact if you see her in person.  She is an almost 23-pound, 34 inch three-year-old who cannot sit unassisted, has limited control over her body's purposeful movements, and is nonverbal.  It is not about "needing to focus on the positives", these are simply the facts.  Facts that are making this soon to be birthday celebration a bit clouded.  I wish I knew how to have tunnel vision, but for now I suppose part of this journey is learning to accept what each moment throws at me and deal with it in the best way I can.

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Wednesday, January 10, 2018


For the past couple of months we have been slowly weaning Sonzee from one of her medications in between increasing a new one.  The one we are weaning is the highly addictive benzodiazapine medication, Clobazam (also known as Onfi).  It was one of those medications on the "I would never give my child that medicine ever" list, but then life happened.  She has been on the medication since August and while she thankfully never experienced any of the severe respiratory distress issues that she could have, her seizures sadly never abated either.  Instead of waiting for her new medication to be at the highest therapeutic dose to wean her more consistently, it was decided after her most recent palliative care visit in December that we would focus on only weaning the onfi and not increasing the new medication. 

About 2 weeks ago we noticed Sonzee started to act more lethargic and just not quite herself.  We thought maybe it was effects from the wean so we held off on her wean for a week.  We waited to see if she was getting sick.  We attributed it to any possible excuse we could fathom, nothing gave us clarity yet nothing was improving either.  After this weekend we decided to contact her doctor and get some lab work, surely that would shine some light onto the situation.  The results came back with nothing significantly out of normal ranges, we have no better insight into what could possibly be going on in her little body. 

I used to think that we could be on top of the situation, one step ahead of any potential danger zone, but I am slowly coming to terms with the fact that maybe that really is not possible.  I hate sitting here feeling less in control of a situation I didn't have any control over to begin with.  No leads to go off of, no place to look at next...just forced to sit and wait for her to look and act healthier but not knowing if that is the direction things will go. 

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Monday, January 8, 2018

It's not fair

On Sunday morning I placed Sonzee's little brother on his tummy for a little workout.  Full disclosure, I don't do it as much as I did for his older siblings, but honestly with (what we perceive as) a fully intact set of genetics, I am not overly worried about his neck muscles or a flat head.  I videoed close to a minute of him holding his head up while Sonzee was nearby rolling from side to side.  I was so excited he held it for so long and then equally as excited that I didn't cry because my almost 3-year-old has never been able to hold her head while on her tummy for more than 10-15 seconds, and those 10-15 seconds require an immense amount of effort.  

I (stupidly) decided to watch videos of Sonzee when she was around the same age as her brother.  I know how much she works to attempt basic skills, but it literally broke my heart in half to see her struggle video after video to even try and lift her head for a second to turn it.  As I watched a couple of videos I was immediately transported back to the exact day they were taped, mixed with emotions of relief we had a diagnosis of epilepsy and fear of the unknown.  It must be some kind of protective mechanism of my brain, but I honestly forgot about these videos, and I swear in my mind she could at some point hold her head up and that she lost that skill.  I liked my reality better.  

It makes me so angry that everything is an uphill battle for her.  It makes me angry her life will not ever get easier.  The basic skill of holding up her head, which just happens as part of typical development within weeks of being born without any effort for a typical child, my almost 3-year-old cannot do, and it is not due to lack of trying.  In fact, those videos were worse to re-watch now knowing her diagnosis was more than epilepsy.  The days they were created it was impossible for me to know just how hard her struggles would become.  I feel like I did such a disservice to her making her work so hard and inevitably it not being enough.  A repetitive theme woven throughout every aspect of her life.

My heart is so full and simultaneously heavy these days.  There is so much joy with Sonzee's baby brother, yet so much aching from the cards she was handed.  We spend our time focusing on the positives and pushing out the negatives of life with CDKL5, but honestly, a life with CDKL5 is just not fair.

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Wednesday, January 3, 2018

Looks can be deceiving

I have been keeping Sonzee's baby brother out of the public as much as possible since he was born because once you have a had a newborn baby hospitalized, regardless of the reasoning, you don't want to relive any part of that hellish event what-so-ever.  So with it being a particularly bad flu and RSV season, limited exposure to others has been our way of life.  With him being a little over a month, I decided to take him with me this morning to pick up curbside groceries and then to the post office to run in quickly to buy some stamps and send out 4 larger brown envelopes.

I was carrying him on my chest and was waiting in line to weigh the envelopes when a nice older woman walked up behind me and started with her doting comments. 

"Ooooohhhh, a brand new baby"
(I smiled)
"Ohhhh, so old?"
("a month")
"Oh, 30 sweet....well, he looks healthy...."
(head nod and smile)

There I stood in the line at the post office, stunned into silence, not knowing what to say and not wanting to engage in dialogue, but with my mind having so much to say.   "Ya, so does my atypical toddler who has a rare genetic mutation and is at home with her nurse"..."What does that even mean? What exactly is your point? and What made you say that?"  My heart stung a little and sadness overtook me for the split second that it took before it was my turn at the kiosk.

When Sonzee was a month old she was already diagnosed with epilepsy.  For all intents and purposes, she too "looked healthy" despite graduating out of the NICU just 2 weeks prior.  She was growing typically and in fact was my only daughter to be in the 50th percentile for height and weight (ever).  She didn't have any feeding tubes or surgical scars.  She had already had 3 lumbar punctures, a 45 min EEG, MRI, numerous blood tests, genetic testing pending, and a PEMU stay under her belt.  She was already delayed in all areas of her development, but her deficits were not visible to the naked eye.  I remember how torn I was by the fact that people couldn't tell her daily struggles by merely looking at her.  No physical representation of the inner hell she was experiencing daily or the struggles we were facing.

I kissed Sonzee's brother's head and wondered what this woman thought "unhealthy" looked like.  I wondered what experiences in her life, with maybe her child or grandchild, specifically compelled her to make the comment.  I can't and wouldn't honestly be able to wrap my head around Sonzee's brother (g-d forbid) not being healthy, but we don't know what his journey has in store, and all I have to say is from my personal experience, looks can be deceiving.

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