Summer 2023

Dear Sonzee,

We finished our drive to Uncle's on Friday and spent shabbas in New Jersey. Yesterday we officially arrived home for summer. The one you never got to see, but the one that would have worked so much better for our family when you were here. (Minus the staircase up, but nothing is perfect). Today starts day 1 of summer. 

Summer is one of those sneak up on me quietly in a dark alley at midnight sort of experiences. (Or what I imagine that would feel like because I'd rather never be in that situation) The drive was filled with hours alone with my thoughts paired with songs that would take me back to either your life or death. Driving on the backroads of Oklahoma listening to Taylor Swift sing "Wildest dreams" took me back to your infancy and the blog post I wrote in September of 2015 as a guest blogger. I still have those dreams of what life could've been had it not been filled with what it was for you.

More songs continued to stream while your brother and sister were otherwise occupied by naps or playing with electronics. "From where you are" came on during day 2 of our drive and reminded me of its music video with cars driving down a long road. My mind drifted and this sadness cloud began to hover over me. Just a bit before I was so excited for summer, and to be back at VV, and then all of a sudden the cloud opened on me. 

Summers were for you and I. It was our time together, no nurse, your older siblings were in camp and Noam was just a baby. You were our shopping bag holder when Malka and I went to Woodbury Commons. You drove your car along Townhouse Road. You were a staple on our walks. VV isn't the same since you have been gone. The main blessing was relocating to the lake. The first summer without you in TH 49 was difficult. The lake is a place you haven't ever been. I don't see you on the floor or around the space. There are no blankets you ever laid on, I can't place you in any of the rooms. You exist only in my thoughts, which is both a blessing and a curse. This summer I will be working during the days virtually, which will help fill the void of your absence, but it makes what was once my break from reality, a stark reminder of what my current reality is. 

I am looking forward to this summer with excitement and a heavyweight within my chest of all the adventures you and I will miss out on together. I know you are still very much remembered by everyone here and your spirit definitely fills the air, but it doesn't change the fact that we are embarking on yet another summer without having to worry about your tubes being pulled out, allergies that show up on PCR tests, and needing to ensure we have your medical one form for when we inevitably had to the hospital runs. 

I know you will come to visit us with cool summer breezes, and I will be waiting on the porch with a cup of coffee in hand to enjoy them. Be safe and have a fun summer, my love. 

Until next time.

Love always, 

Ema

"Normal"

I was on the brink of needing to cork the good ole' wine bottle prior to getting the older kids into their beds last night when Sonzee was asleep during the prescheduled live video feed of her getting her glasses.  For a good while I was on the verge of tears because "why can't just one thing go the way I planned it".  I sat in the corner of our couch and stared into my phone sending sad faces emojis and negative words to a close friend.  Then I took a cute picture of her peacefully sleeping and made a post to let her story tellers know the live video would be postponed.

After some time went by I looked over at her mat and I saw her eyes were blinking..."YES! She is awake, live feed of glasses is on!"  I am pretty sure I said that aloud as well in my head.  Part of me ecstatic, the other part slightly nervous.  This is the Sonze we are talking about, if she isn't in the mood, well than we might as well stick to regular evening programming because this could get ugly really really fast!

I had spent a good portion of the afternoon thinking about what would be the best position for her to be in, what toys would be best for her "first time seeing" and reminding myself multiple times that this could very well be "disappointing" in terms of her reaction so I shouldn't get my hopes up too high. When it was time to start the live feed I was beyond nervous.  Talking to groups of people isn't exactly my favorite thing AND I had not planned on being in the video, so I apologize about the clothing malfunctions (oops!).

Besides the video itself being more amazing than my wildest dreams could ever have envisioned, when I look back on how the evenings events went I actually am pretty excited about something that I never considered.  I had been down in the dumps about little bear falling asleep, I was a bit nervous when she started to cry when we made our first attempt at getting the glasses on her face, but the fact that it played out the way it did made me smile because it really is normal to have a 21 month old do everything she did!  

What 21 month old naps when you want him/her to? What 21 month old "cooperates"? What 21 month old wants a band around his/her head? (So many people mentioned this was a problem for their child and I merely shrugged it off thinking how Sonzee isn't fazed like typical kids). What 21 month old is happy 24/7?  While there is plenty that is different about Sonzee and all of her same aged peers...just this once it was nice to realize everything she did was just "normal."

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Waiting...it can be worth it

I wrote on Tuesday that I feel like all I do these days is wait.  The worst part about waiting is the obvious part, because let's be honest who enjoys waiting for things? (Well I guess that does depend on what exactly is being waited on and if you happen to excel in the area of patience). For me (since we all know patience isn't exactly my thing) waiting just builds anticipation and potential hope and the outcome isn't always what I personally intended it to be.  However, It is always extra spectacular when all of the waiting I have done turns out to be beyond worth it!

As we continue counting Sonzee's amazing seizure free streak (she is currently 20 days and 7 hours in case you were wondering) we have been privy to witnessing some amazing accomplishments that I was unsure she would add to her personal list.  Her head control is amazing, she can sit supported (when she wants) for a large amount of time, she only arches her back when she wants to be "all done", she absolutely loves her sensory box, and my most favorite addition is she is able to have and enjoy an actual bathtime experience.

Had you asked me a couple of weeks ago I would have said "we need to really pursue a bathtime chair that reclines because she is definitely way too big for the infant tub she has been using (yes, we have been bathing her in the infant tub we have used for all the kids...yes she still fit...but not for too much longer). Last night I was so eager to get her in the tub. I was worried that my timing would be off and we wouldn't have a happy bear on or hands.  In between painting my oldests bedroom and getting the kids to sleep I decided it was the only time to perform my little experiment.  I took little bear and as I filled up the tub I placed the light up toys and bubbles in the water.  I placed her in her seat and held my breath.

Then the stars aligned.  Not only did her experience exceed my expectations, I was so appreciative that everything worked out beyond my wildest dreams.  There was nothing better than that 6 1/2 minutes where she focused on the toys, tried to grab them, and sat herself up in the chair!!  These are the moments that make the waiting bearable and WORTH EVERY CHALLENGING MOMENT UP TO THEM.

So now I dare myself to look forward to the moment Sonzee sits by herself without support because I know when that moment happens I better have a box of tissues nearby.

A Year Ago: Monday: Drafted on 9/21/2015

I sat down to write a new blog post and saw that my first guest post was written a year ago today.  This was for "A regular day in" series.  It was a year ago but I don't have to reread my words to remember exactly how this day went, this was how many of Sonzee's days have gone in her life.  I look back on this and smile because in a sense we have come so far from where we were just one year ago today.  I will be sure to follow this one up with a recent view into our daily lives.

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Monday: September 17, 2015

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 Sonzee up; it is 2:55am, 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 Sonzee'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 daughter #1, 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 daughter #2, maybe her body is silently woven to her sister because she makes a sleep whimper and puts herself back to sleep (thankfully).  

Sonzee 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....

 

Sleeping after her 3am seizure

Again there is music in my ear; it is 6:55am and time for Keppra.  The syringe sits prefilled 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 daughter #1.  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.  Daughter #1 is turtling her way about her morning routine, and our dear son has started his morning protests...daughter #2 and Sonzee 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.  Daughter #2 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 Sonzee 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 Sonzee'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 and bear some weight.  Daughter #2 is eating some yogurt and skittles (I know so healthy).  My alarm rings for her 10:55am Hemp Oil.  

Sonya doing tummy time

We get all packed up and head off to the chiropractor by 11:40am.  Sonzee gets adjusted and Dr. Danielle and I chat so we are there for about an hour or so.  Sonzee 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 daughter #2 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!!!  

Sonzee getting adjusted 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.  Daughter #1 changes quickly in the car, he hands me the requested Tylenol I texted him about earlier due to Sonzee's crankiness, and daughter #2 gets transferred out of my direct care.  

Daughter #1 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 daughter #1's dance bag.  Sonzee and I take up our usual spot on the floor outside dance class.

Sonzee in her carseat at dance

 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 daughter #1’s second class and Sonzee can get some floor time in.  She does some rolling and ends up on her tummy.  At 6:00pm class is over, but daughter #1 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 Sonzee goes on her play-mat and gets the Tylenol I forgot to give her, daughter #2 and little man get some tickle time, and daughter #1 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 Sonzee 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”.

CWHO, morning Keppra, night Keppra