Karaoke

Sonzee's older siblings always love to put on shows, so when it came time for me to complete their wish lists for Chanuka Angels gifts it was a no brainer to include a karaoke machine and karaoke microphone.  The box of the karaoke machine came unwrapped and our middle daughter knew it was for her because it was in her pile, so she has been eagerly anticipating opening the actual box.  Our son who really didn't know everything that I requested for him was eyeing a specifically shaped box in anticipation of it being a microphone, thankfully it worked out for the best when he opened his gifts.  Sonzee did get a really awesome spinning light wand from her aunt that would be totally awesome to use during their shows, but as usual, despite our best efforts, she was unphased and indifferent to her gifts.

I usually keep Sonzee's gifts limited to things she actually needs, such as clothing, backpacks, pacifiers, or pacifier clips.  She doesn't show any reaction towards anything she is given, and honestly, she doesn't seem to even be aware that she on the receiving end of a gift.  It is probably more a protective mechanism for myself that I limit the types of gifts she receives because there is no excitement, no reaction, really, there is no awareness at all.  From a parent's perspective, it is really sad because the best part of having your child open a gift is their initial reaction.  Due to the safeguards I have in place and the fact that we are blessed with four other kiddos, I didn't find it difficult to handle the gift opening portion last night on the first night of Chanukah but then we started family karaoke and I have yet to find the solution to the unplanned emotional situations that inevitably occur.

The karaoke machine was hooked up to the TV, the microphones were connected, the lyrics were on the screen, red, blue, green, and white disco lights were spinning in a darkened room, and the music was blasting.  We might as well have been called club Zaila, it was the best.  I started to record the kids singing at the top of their lungs and then panned across the room until I got to Sonzee who was just laying in her ppod not participating.  A mixture of exhausted from her recent seizure, the multiple other ones she had throughout the day, and just CDKL5 in general.  She didn't care for the disco lights going, she wouldn't even look at the awesome spinning wand her aunt gave her.  She was just blah.  I felt the tears enter into my eyes, but I immediately pushed them away.  I didn't feel like letting CDKL5 steal another moment.  It was much more fun to focus on my older three dancing while they sang at the top of their lungs, so I flipped my emotional switch to off and pushed the pain away.  Always on the tight rope of acceptance and hope of something.  While I fully accept who she is as a person, I still hold onto some hope that maybe tonight she will want to look at her amazing spinning light-up princess wand when we turn back into club Zaila.   

May 23

May 23 seems to be a difficult day every year.  It is really odd considering it is the birthday of Sonzee's middle sister, so you would think it would only be a day of complete celebration, but that is mainly the reason that it is not.  This date every year has become one of those reminder days.  A day that reminds me of how much our kids, especially our 3rd have had to sacrifice since the birth of Sonzee.  A birthday that was celebrated only one time before Sonzee was here.  Which means this year it has been 5 middle sister birthday's that have gone by since.  Which equates to essentially her early childhood years (and even her birthday itself in 2016) have been spent in and out of hospitals as a sibling in tow.

Sonzee's middle sister has always taken the role of big sister seriously.  Prior to even turning 2 or being potty trained, she learned how to identify and notify us of Sonzee having a seizure.  That means on top of the typical things she has learned over the last 6 years, she has spent over 4 of them gaining medical and life knowledge she should not be exposed to.  Due to her being so young and not not in school in 2015, she was the only sibling to see Sonzee outside of the NICU the day she was born before she was sent up 2 hours after her birth.  She bonded with her in 2 different NICU level nurseries and in 2 different hospitals before she celebrated her 2nd birthday.  There are numerous pictures and videos of her kissing, coddling, cheering, dancing, and playing with her.  These captured memories make me so happy to watch and yet so sad because they aren't showing what should have been typical sisterly bonding moments. 

Each year on May 23 I am reminded of how many years have truly gone by.  It is the first immediate family birthday after Sonzee's.  It is the birthday that not only ages her middle sister but also ages Sonzee.  It is the day that I am forced to realize how old everyone in this house really is.  It is the day that falls at the end of the school year where we say aloud how crazy it is that each child is going into grade xyz next year, thus making it unavoidable to realize that where Sonzee is going physically does not match up to her developmental status. May 23 is a day we recognize another journey around the sun has occurred for our middle daughter, we accept that it means it was another year she was forced to grow up sooner than we had planned, and it is just another day that CDKL5 barges in and makes itself known in a random and unexpected way.

Innocence

From the very beginning of Sonzee's life, Sam and I have always been very open with her siblings about everything going on.  It would have been extremely challenging to not be when from the start I did not come home the first week after she was born because the hospital allowed me to stay in an unused portion of the maternity ward while she remained in the NICU.  Then just a few weeks later we found ourselves taking Sonzee to the pediatric hospital where her seizures were confirmed.  The hospital staff made an adorable epilepsy bear, complete with the EEG leads, gauze, and colored string so that our then 5-year-old, 4-year-old, and 21.5-month-old would not be scared to see her when they came to visit.  We did our best to answer their questions in age-appropriate ways and when they left us stumped or after I winged an answer, I would refer to child life to help me out and or let me know if I answered them appropriately.

During one of Sonzee's lengthy stays when she was 15 months old, her oldest sister did not want to visit her.  We respected her decision but always gave her the option every day.  It is a tough place to be as a parent because there is a fine line of reality and the black and white fact that any of the hospitalizations could be one way.  I was so worried that Sonzee was not going to leave and then her sister (who is extremely close to her) would feel this unnecessary guilt for not visiting.  But how exactly do you explain to a young child that her sister might not leave the hospital without causing nightmares and unnecessary fears?  When you become a parent, who even thinks of this under their list of top 10 potential parenting dilemmas?

As Sonzee has gotten older, the hospitalizations have become so routine, her siblings get disappointed, more than anything else, that the family will be split until she returns home.  They do not really understand or grasp the severity of what us taking Sonzee into the ER really means.  I think I am okay with that in general, after all, her siblings are now only 9, 7, 5, and 1, they should remain children as LONG as they can be, as long as every other child does.  But their life is not like that of every other child, there are just sad realities that come with this life.  Even though our children see Sonzee's daily struggles and know there are children "like Sonzee" who have passed away and have even met siblings of those children, they are still very much children, and still very much innocent.

There is a part of me that is relieved this is the case, and then there is a part of me that hurts because at some point in their lives it will make reality more heartbreaking.  On Sunday my oldest son asked how Sonzee would give herself medicine when she is older.  I let him know that she would not be able to live alone and that someone would be doing her medicine for her.  He took a second to process what I said and then inquisitively stated, "oh, she won't?".  To which my oldest daughter happily replied that she is going to be taking care of her, and she will be living with her.   My mind simultaneously gracious at the offer seriously wondered if I wanted her to put her life aside to even take that on.  Then my middle daughter interrupted that thought to ask how Sonzee was going to have a baby, and I let her know that she would not be having a baby.  My then oldest daughter paused for a second and with a surprised reaction said, "oh she isn't? well, then how is she going to be a mom?". I took a second to process where this conversation had just gone and simply replied that she will not be able to be one and then I asked them to make sure everything was cleaned up before we headed out to afternoon activities.

I texted two of my go-to's for these types of conversations and I mentioned that what broke me more than anything is that they really do not even comprehend what the most likely reality is going to be.  I have honestly not even thought far enough ahead to have even considered Sonzee as an adult.  I know there are many parents who might disagree with my thoughts, but at least once a month I post a prayer request for a family who has to bury their CHILD.  It is a reality that accompanies our life.  Whether I say it aloud or not, it does not change the facts of Sonzee being medically complex and that her body is unable to function in a typical fashion.  Yet, to be brutally honest, the most challenging part of this reality for me to wrap my mind around, is how this eventual inevitable outcome will affect my other children.  

Empty horse

Last week one of the organizations we are part of sent out an e-mail about Legoland and Sealife aquarium tickets for yesterday.  I mentioned to Sam about it and asked him if it would be doable with our son's hockey schedule.  He said it would be too close with the times, but he would take him on a date to the Coyote's game that was happening Tuesday and I could take the girls.  Since Wednesday's are one of the days I work we already have a babysitter in the house for our youngest.  Perfect.  Done.

When I registered the girls and myself I hovered over Sonzee's name, debating in my mind whether I should bring her as well.  After all, it was a girls date.  Then my mind said, "Randi, she will hang out with nurse Karen, it is a big girls date."  I still felt a little bit of guilt, but that spot that resides in the bottom of my stomach during situations like this knew it was best for her to stay at home.  It is where she is most comfortable, it is where she will enjoy herself, it is where she would rather be.  Right?  Am I making that up?  Are those actual facts?  I can rationalize anything, you are talking to the person who justifies her daily lattes by saying the milk counts as necessary proteins.  So am I just telling myself things to make myself feel better for not choosing to bring her?

As we went on the first ride together I was feeling confident with my decision.  The choice was shortly confirmed as the girls were running all around the play area, knowing Sonzee would just be sitting in her wheelchair breathing in an almost certain trip to the ER.  We went to see a 3D movie and I was silently patting myself on the back at this point for making this a big girl date.  While we were walking around the girls mentioned that it was a girls date so we were missing Sonzee, but I reassured them she was having fun at home and it was a big girls date. We then went over to the aquarium where the girls played in the touch tank and crawled into the glass bubble domes to stand up and look at the fish from different angles.  This was definitely a "mom win" in my book of decisions, surely Sonzee was having a much better time at home in her P-Pod.

To close out the evening we ate our dinner that we brought to the food court to make the date official, and the girls asked to go on the Merry-Go-Round.  That is when the unexpected punch came out of nowhere...or was it just waiting in hiding for the right moment?  The girls each picked a horse separated by one bunny eared horse in the middle.  It took one rotation for me to feel the whiplash. I wonder what made them not choose that horse and sandwich it in?  This picture doesn't do the reality justice, if you look closely you can see the ears at the back of Sonzee's older sister in the blue shirt; I took at least six pictures to try and catch the moment.  The big girls truly in the moment enjoying their date, the rare non-traditional horse sitting empty between them both.  The empty horse that should have had an occupant.  The empty horse that to others would just be another empty horse like every other unoccupied horse yet really holds a place for a sister that won't ever get to experience the big girl dates, the childhood joy of a merry-go-round, and what it is like to just be a kid.  The empty horse flashing me forward into an inevitable future physical reality and grounding me in the current factual but justified reality of what is best for her.

Room 8129

We knew before we "checked in" that this was not going to be a short stay.  Generally speaking, her average length of stay is 7-10 days, and when we asked her doctor what the "usual length of stay was" for what we are doing, and she replied "a minimum of 10 days" we knew we might beat her 28 day stay.  We have never had that sort of knowledge in advance, so we did our best to mentally and logistically prepare.  It was not the ideal week to get started because of Chanukah, but it was when it worked with our team of doctors, so we obliged.  Our first week has gone by with just enough hiccups to feel we are right on track, yet I cannot answer the million-dollar question of "when are you going home?"

Hospitalizations have become part of our family "norm".  We have a sort of routine if you will.  The experience is sadly, yet comfortably, familiar.  The bigger kids get excited when there are no "contact precautions" and they can enjoy the playroom after school or get to watch whatever movie Sonzee has on in her room.  They handle it all in great stride and complain minimally in respect to their ages.  I know it has to be taxing on their minds and hearts, I see it written in the words on the dry erase door in the hospital room; "I hope you come out of this hospital soon", "I love you Sonzee", and heart and various shape drawings.  It stings for a split second and then it makes me smile.  

We have met a lot of new staff this stay but have seen a lot of friendly familiar faces walking the halls, popping in, and assisting with Sonzee's care.  I have bonded with mom's in the laundry area, we have shared the floor already with 2 other families we know, we got a room with the "bed", our window faces North, and the view is beautiful.  There is a constant mixture of feelings because of the situation and because of this journey in general, yet there is this feeling of community and sense of normalcy.  I suppose it is hard to understand unless you have ever lived this sort of life, and I am not wishing it on anyone, but considering other variables, there are worse things than living in room 8129.

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Napkins

During dinners during the week we make sure that we ask our kids a couple of questions about their day or week that will elicit more than a yes/no response.  They have become so accustomed to this tradition that if a couple of minutes go by during Taco Tuesday or Meatless Monday one or more of them will excitedly announce they are going to answer first.  While in New York I came across a brand of napkins that advertised their napkins were "conversation starters", and after a quick glance at the examples they were placed excitedly into the cart.

During one of our most recent meals one of our children received "Swap Day...Who would you switch with and why?"  A sideways lip and squinted eye along with "hmmmmm" was hummed while the answer was being thought over when another child said

"I know who I wouldn't want to be....I wouldn't want to be Sonzee, because she is missing her CDKL5 and it is sad"

I cannot remember Sam nor my exact reaction, but I do recall saying that I agreed it is really sad.  To be honest the statement did not catch me off guard, nor did it make me upset.  In hindsight if anything is sadder than that purely innocently stated truth, it was the fact that Sonzee was sitting by the table with us and there was not a look of hurt or even awareness that this conversation was occurring mere inches from her.

Last night I attended an event with an amazing speaker who touched briefly on the subject of grief in regards to child loss and infertility.  She mentioned that you can have children and grieve that you do not have more, that you can grieve that you became a parent but maybe not following the path you had envisioned, that you can feel grateful for the family you do have while mourning the family you might have planned.  Her words so perfectly spoken, I am sure resonated with every person in the room despite their individual circumstance.  For me, there were multiple times during her discussion I pushed away the tears that filled by eyes. A few times because I did not realize I had buried a lot of the emotions from our entire "becoming parents" journey, other times because I have never really thought to grieve over the miscarriage we experienced after Sonzee, and mainly because of the grief I have yet to settle within my heart over our family not turning out at all how I dreamed.

I never expected nor wished to have a child with a profound disability and I certainly never wanted any of my children to experience parts of the childhood they have had to, nor inevitably will.  However, I am beyond grateful they are learning one of life's most valuable lessons, that life is not fair, and it is how they handle the situation that is important.  They are learning to cope with challenges that will surely enrich them and at the very least enhance how they grow.  What I cannot adequately express is how thankful I am for their openness, innocence, honesty, and vulnerability.  In addition, the gratitude I have towards the creators of these conversational napkins should not go unrecognized because sometimes you need a prompt to a safe place to let your true feelings be known.


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Now

Yesterday was Sonzee's 5-year-old sister's birthday celebration.  It was a planned "girls only" party.  8 girls including the birthday girl were going to spend the morning getting their hair, nails, and makeup done.  My heart yearned for an inclusive experience for Sonzee.  I was apprehensive from the time of booking how this would play out, but I knew it was out of my hands.  I have learned to set the standards high for Sonzee, but to keep my expectations low to protect myself from the potential pain that comes with the "special needs life disappointment".  So, when we arrived at the facility and the girls began to rotate into their respective stations I continuously mentioned that we would try Sonzee, but that it was okay if it did not work out.  I yearned for her to take part without it being stressful for her, without her being upset, and without me wishing the outcome had turned out differently.  

Finally, it was her turn.  I was nervous about how the staffing girls doing hair, makeup, and nails would react to her continuous body movements.  It did require Sonzee's sister and myself to hold her hands and feet to get her nails done due to her kicking her feet around and her desire to want to eat her fingers throughout, but once she realized she was being pampered she settled right down and only got a little nail polish on her shorts and inner thigh.  She did not argue one time while the girl put gel in or combed her hair, or spent time doing a french braid side pony tail.  She loved the glitter shower at the end.  I helped make a beaded necklace with her, to be honest she was not overly thrilled (but those beads are tiny, and I honestly do not care for the patience it takes either).  She danced with her sister, and it brought me such an immense amount of joy watching her be included.  The staff included her, the girls included her, her sisters included her.  My heart was not prepared for the amazingness that occurred.

Lately things have not been the best.  We try to focus on the positive, but the weight of CDKL5 has been increasingly heavy over here.  There is the false sense of security because things have been going okay with the big picture, but the little things are what make the floor fall out from under us in an instant.  When will that happen?  The uncertainty of everything remains only a small thought away, and it takes a toll the further into this journey we travel.  It is easy to get caught up in that ball of yarn.  Yesterday while celebrating the past 5 amazing years I was reminded about happiness and joy.  I was reminded that life passes by in an instant and it will not be slowing down.  I was reminded about Sonzee-stones, simplicity, and the little things.  I was reminded that there is nothing I can do about the future, nothing I can do to fix the past, and that I need to be present in the now.

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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 tiny...how old?"

("a month")

"Oh, 30 days...so 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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It's not just me...

Our lives forever changed when our Sonzee bear entered into this world.  It wasn't just mine and Sam's, it was also her two sisters and one brother who became immersed in a world of medical jargon, hospitalizations, and talk that is not exactly suitable for children.  They (as most children do) adapted quickly to our normal and made us as parents even more proud than we knew was possible as we watched them interact and include Sonzee in their sibling activities.  No matter what though, it never was the older sibling experience that they would have asked for.  Sonzee's oldest sister wanted (and still wants) nothing more than to hold her and walk around, or hold her hand and help her walk, or get on all fours and chase her around.  All of these experiences have just not been possible, and while sad, our oldest as resilient as anything, has made the best out of the situation.

When our oldest found out we were expecting this time she was so excited, I was so excited at the hope of providing her a new healthy sibling that she could tote around and interact with in a more typical manner.  Apprehensive but optimistic we answered her with "g-d willingly yes", and "hopefully that will be the case", as she asked if she would be able to do all the things she isn't able to with Sonzee.  Fast forward to 3am on the morning her baby brother was born.  She was too tired to sleep once she woke up and found our baby sitter in our house and so when Sam went home to grab some items the first question he was met with was, "Does baby have CDKL5?"

We did a screening during our pregnancy which indicated at 97% her baby brother does not have CDKL5, so Sam told her g-d willingly no.  I don't think I mentioned to anyone that our oldest asked that question because I was honestly so heartbroken about it.  I wasn't heartbroken that she was concerned or that she asked in general, I was heart broken because with her asking that question it showed me just how impacted she has been by her sisters diagnosis.  In her almost 8 year old way, she let us know she too is scared of her baby brother not being typical and or healthy.  I honestly can't and don't blame her, as a parent I am petrified of anything being "off" with this little dude.  It is just part of the everlasting scarring that is brought into a family once they become a rare statistic.

As my oldest holds the baby and he makes random, jerking movements more than once she has either stated "that looks like a seizure ema", or "is that a seizure".  I have to admit my heart skips a beat each time she mentions it, yet attribute it to any potential denial or overt confidence in my gut, but I assure her that "babies do weird things".  I am continually talking myself off the proverbial ledge of panic attacks, and have managed to have only 1.5 in his 12 days of life, I will take that as a success.  Thankfully our pediatrician understands and is quick to reply to my messages of panic.  I think it is going to take us all some time to accept that our little guy is (appearing) healthy and (g-d willingly) typical.  While there is some comfort that it is not just me, I so wish it wasn't my 7 year old who is laced with this same burden.

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Playtime Interrupted

Oldest: "Ema can I play with Sonzee in my room?" 

Me: "Yes, just be careful when you push her in the chair not to get her wires tangled"

Oldest: "Come on choupers, let's go"

(Some time goes by)

Oldest coming to me: "Ema, Sonzee is having a seizure, why does she always have a seizure when she is having fun?  I was reading her a book and she was smiling and all happy and then she had a seizure again...it's not fair"

---

Our oldest was just 5 years old when Sonzee was born.  An innocent, light brown haired, blue eyed, loving, caring, full of personality, dancing, playing around, typical big sister who has always loved to dote on her siblings and had to learn at the age of 5 what a seizure looked like in a newborn baby.  At 5 years old, she was wise beyond her years, but still a bit too young to fully understand or grasp all of what CDKL5 meant for her youngest sister.  Sam and I have tried over the past 2.5 years as hard as possible to protect her little mind and heart, answer her questions, give her only necessary information, and essentially trying our best to support her innocence a little longer.  However, our little girl is becoming older, smarter, and now at the age of 7.5 she understands more, hears more, knows more, feels more, and hurts more. 

I am not quite sure what hurts me most about Sonzee's seizures during her sibling playtime, the list is so long.  I hate that it disrupts a happy moment occurring between them all.  I hate that she has seizures in general and they occur so often that this conversation happens at least once a day.  I hate that our oldest must experience at 7.5 what I do now at 33.  I hate the sound of defeat our oldest has in terms of her play session being cut short due to the seizure "because Sonzee was having so much fun".  I hate that my only answer is "I know it stinks you guys were all having so much fun".  I hate that our 7.5-year-old rebuttals with "why does it ALWAYS have to happen".  I wish my reply could include more substance than "I don't know, it is such a bummer".  It ALL hurts.  It ALL breaks my heart.   

The silver lining comes at the end of the seizure, when I relocate Sonzee to her bed to rest and her oldest sister asks if she can finish reading to her in her room.  Our oldest and I have one of our typical sevenager disagreements because she wants to show Sonzee the pictures and cannot reach her crib, and I assure her it is ok, Sonzee will just listen because she is too tired at this point to look at the pictures anyway. I leave the room to two sisters, the 7.5-year-old reading to the 2.5-year-old and can almost for a split second forget the events that preceded and the fact that one of them has intractable epilepsy.  I will replay the events in my mind and will pray that tomorrow's playtime will go differently, but first I will memorize this image...because this gives cushion to the pain.  This love that our oldest has for her "twin-girl" is something that brings tears to my eyes.  She has her own twin size bed, with a memory foam mattress (that I personally think is extremely comfortable), but instead insists on sleeping on a toddler bed in Sonzee's room.  This brings me a wave of comfort even if it is just a ripple.

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Creativity and Epilepsy: Educating Children Who Witness Seizures

This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

Seeing a seizure no matter how many times they occur and no matter the age of the bystander, can be extremely traumatic depending on the type of seizure a person may be experiencing.  It is a delicate situation to tend to the person who is experiencing the epileptic event as well as comfort those who are witnessing everything unfold, especially when there are children involved.  As a parent, when you have a child with epilepsy who has young siblings you have to be very creative in how you handle all things related to seizures.  This includes conversations regarding seizures as well as when/if it comes to watching the episodes themselves.  

Being that Sonya began having seizures within one month of her life, they were less noticeable to others, however, Sonya is 5 years, 3.5 years, and 21 months younger than her older siblings, which means they were extremely young the first time they were exposed to seeing a seizure.  At the beginning they honestly did not notice one was occurring, but eventually as the seizures got longer and more intense, her siblings became more aware.  As parents, Sam and I did not want to scare our older children, but it was important they be aware of what a seizure looked like so if necessary they could inform us if they saw it occurring first.  For example, Sonya's car seat faced our then 5-year-olds and so while driving she would occasionally tell us "Sonzee is having a seizure".  There have been false reports, however, more often than not, the reporting is accurate and a huge help in beginning to comfort Sonya, both verbally, and for her sister who sits right beside her, physically.

There have been times when the seizures are just too overwhelming for us to want our older children to be around, regardless of how helpful they can be, and so we have to be creative in how we distract them.  Sonya went through a time when she required oxygen during the end of her seizures and for some time following the episode.  When she would begin her seizure typically another person (unless we were alone) would go and grab her oxygen and begin too hook it up to her.  For the majority of the time we were able to distract our older children by having them go and play in another room or go have a dance party, but once or twice our oldest would stop in her tracks and look at us placing the oxygen cannula on Sonya and ask if she was going to be alright.  We could tell she was scared and so we explained that Sonya was having a seizure and it was alright, but that sometimes extra air is needed to help people breathe.

Children in general can "make light" of many situations, and this includes seizures.  They can see someone making funny, weird, awkward, dramatic, and fast movements with their bodies and can think this is something to imitate.  At a young age it was extremely important for us to emphasize to our children that seizures are never anything to be made fun of and what is occurring to a person who having one is not pleasant, is not funny, is not weird, is not comfortable, and is by no means a joke.  It is also extremely important to balance sharing this information with young children in a manner that does not scare them, but does emphasize this is a high magnitude situation that should never involve laughing.

While Sam nor I are perfect in the ways we have chosen to be creative with our older children in regards to educating them on seizures, here are some ways we found helpful with our older children and their exposure to epilepsy.  We are not expressing that every parent should follow these ideas nor is every parent going to want their child to see a seizure, however in a lot of family situations it is simply impossible to prevent a child from witnessing a seizure, so it is always better to be as prepared as possible.

1. Talk and explain to a child who is watching the seizure what is happening to the person experiencing a seizure-reassure them that even though it looks extremely scary the person is going to be alright
2. Answer questions that a child may ask regarding watching the seizure
3. In general keep the lines of communication open between the child watching the seizure and the adult supervising
4. Be aware of the child who is watching a person have a seizure-are they are uncomfortable? are they scared? do they need to be distracted?
5. If another adult is present have them take other children in another room in a calm manner asking them to show them where an item is, or to go read a book, or have a dance party
6. Have older children help time a seizure or feel like they are helping you or the person having a seizure
7. The priority is on the person seizing, however, if seizures are routine and the person is stable, make sure to remain calm (always good regardless) and try not to scare the other children who are around

NEXT UP: Be sure to check out the next post tomorrow by Sarah Collard at livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

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Missed out moments

For those of you who I know personally and were able to view Sonzee's (as of 8 hours and 59 minutes ago) now four year old sister slather lotion all over herself and her bedroom, I hope it provided you a decent bedtime laugh.  For those of you who were unable to view the video, it went something like this.  I went to get a t-shirt out of Sonzee's sister's dresser and noticed she was not in her bed, but instead there was a lotion container extremely messy along with her pillow, sheets, and blanket.  I summoned for her and she came back into the bedroom from the hall bathroom, which I had just walked by, but somehow missed seeing her.  I asked her why lotion was all over bed, and then I noticed it was all over her body, her clothing, her hair, the floor in footsteps...it was EVERYWHERE.  The only thing I did besides ask her what she was doing was call for Sam to come to her room.

While she burst into tears explaining she was extremely itchy all over her body (she has bad eczema) she noticed Sam and I were "holding back" our laughter and so she calmed down.  We of course had to document this moment to look back on as the years pass by as her final hoo-ra of an event as a three year old, and so we recorded the outcome of lathering her body in Eucerin cream to combat her itchiness.  The video goes onto to show her telling Sam it was in fact me who put the lotion all over her and then she gave her signature "get out of jail free card" grin indicating that maybe that really was not the case, but never fully admitting it was in fact her who placed the lotion on her body and the contents of her bedroom.  The video ends with her saying next time she will ask for me or Sam to come and put the lotion on.

After giving her another shower, changing her sheets, and rubbing the lotion off of her furniture and the floor I became a bit sad thinking about the fact that Sonzee won't be able to pull off these types of shenanigans.  These are the moments that unfortunately don't permit themselves in the special needs world, at least not the one Sonzee is in.  Even if she has the desire to do so, she lacks the motor planning and actual physical capabilities of pulling off such a fete.  She is unable to climb out of her crib, grab a lotion container, sit back on her bed and attempt to relieve her itchiness or whatever else a toddler is thinking in their mind.  She cannot rip out pages of a book, get construction paper and attempt to write her own book using the spine of the original.  She cannot sneak into the kitchen grab candy and "drop itself into the stomach without tasting it".  These are just childhood achievements she won't ever get to participate in.

It is moments like this one that are bitter sweet.  Maybe I only appreciate the joy, creativity, and overall fantastic humor of these events because we have a Sonzee.  There was honestly no getting mad or even annoyed, there was definitely an element of surprise and shock, but I was more in awe of her desire to handle the situation on her own and choosing to do so in that manner.  One of my most commonly thought and uttered parenting phrase is "what were you thinking?" and my favorite part is hearing each of my children's replies. However, without their specific replies the event in and of itself is usually momentous and does not require an explanation, so it just sucks we won't get these types of moments with Sonzee.

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