Humbled

She had two of her long seizures and too many of her cluster seizures to count.  She spent her day awake, wringing her hands, clapping, pushing her glasses off of her face, and content.  She didn't cry in pain at all and she not only stood in her gait trainer, something she has not been afforded the opportunity since the fall, she also took multiple steps.  She was proud of herself, you could see a smirk across her mouth, a look of satisfaction in her eyes, and just sheer joy come over her entire face. Her ability to literally make the best and most of her days, albeit her brain misfiring for over 25 minutes a day has me sipping my coffee in complete admiration as I'm reflecting on what she endures daily.

As her mom, I over analyze every minute of her life in general, but it wasn't until I was staring at her seizing awake from her sleep at 10:45pm that I truly comprehended how incredible of a human being she really is.  I readjusted her pulse oximeter while she seized, her values thankfully staying stable, and I was filled with this feeling of heartbrokenness mixed with complete awe.  Just hours before, we were challenging her fragile, and I am sure exhausted body, to do things the majority of us haven't had to think about doing since we were between 12-24 months old.  She rose to that challenge, she smashed the ball out of the park and gave me renewed faith in her desires.  Then she participated in a girls only dance party after dinner and didn't complain when we didn't move her into her room until after her typical bedtime.  Now here she was convulsively shaking, her limbs contorting, her mouth quivering, her eyes rolling all over, her head thrusting forward and then abruptly pulling back, and this is what she does all the time.  This is her life.

During these moments when I am reminded that her life is not about me or my feelings, or how hard watching her go through it all is, or what her missed milestones mean for me; I feel this overwhelming sense of pride and adoration towards her my heart could physically burst.  I always suspected she would bring me similar joy and delight as her siblings, but I was not sure what it would look like.  I now know that there is nothing that could make me a prouder parent than watching her literally fight to give herself a self-determined quality of life on a daily basis.  For this, I will forever be humbled.

Best of your todays

From the time Sonzee was a little baby Sam has always said that my happiness directly correlates to how she is doing overall.  When we find ourselves in a time period where we are walking on "Sonzee eggshells" in terms of her response to whatever discomfort she is experiencing it is difficult for my attitude and overall demeanor to not be a mirror.  When she has a bad seizure day, a challenging GI day, or is just not up to much, the reflection in me is clear.  I have become a master at hiding my outward appearances, but a good portion of the time, I do not have the energy to shelve the reality.  On the flip side, when she is having a great day, you might as well call me Burt from Mary Poppins when he is doing the penguin dance.

As a parent its in our nature to want only what is best for our children.  We want them to first and foremost to be happy, once that occurs everything else seems to fall into place.  For those of you who think, wonder, or say "I can't imagine how you do it" when it comes to the situations we are faced with, it is beyond words for me to properly convey what it is like to constantly watch your child go through setback after setback when the starting point isn't even that great, to begin with.  Happiness is unfortunately not as simple as it seems to be with our typical children, and it is exhausting on many levels to try to make things even just tolerable for her. 

There are definitely moments throughout the day, albeit sometimes they flicker similar to that of a lightning bug, where a smile appears across her face.  Sometimes it is actually purposeful versus the ones that are simply a precursor for seizure activity.  Occasionally she will smirk in response to a statement made to her and it is actually voluntary.  There are times that catch us off guard with her reciprocal social participation.  It is during these times and moments that I feel like a charging battery.  Each little event gives me enough energy to continue pushing through.  It's in these little moments that everything is worth it.  Despite finishing our days on average with less of the positive it is in those sparks of positivity that fill my dreams of hope, and leave me saying to her "and may the best of your todays be the worst of your tomorrows".

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Unexplainable joy

One of the greatest joys of being a parent is watching your child participate in something he/she loves and be able to express that love in an outward manner complete with giggles, a grin as wide as the width of his or her face, and an invisible aura that radiates from the soul.  If you are not a parent, I am sure you have at least experienced seeing a child engage in an activity that resulted in obvious happiness that it was contagious enough to enlighten your mood.  There are very few "life of a medically complex special needs parent" experiences that I feel I am lucky to experience, yet if you have never met a child who has difficulty outwardly expressing his or her emotions and then you witness him/her outwardly display joy, there is really little justice with words that can explain the affect it has.  It is one of those "you have to experience yourself" types of situations.

Over the past 3 years and 8 months there has not been one smile, peaceful or calm day, seizure free period, pain free time that has been taken for granted.  Every time our family is blessed with an obvious joyful day for Sonzee it is felt by everyone.  I personally can feel the happiness course through my blood and down to my bones.  It brings chills and tears to my eyes.  I have to fight the tears the same way I do when I am overwhelmed by negative emotions.  It is as if my brain does not know how to correctly process the information, I go into system overload.

I am sitting here tonight re watching the videos and pictures I have taken over the past 3 days of Sonzee in her Make-A-Wish spa and the tears are hard to hold back.  So many emotions wash over me.  Besides the obvious momentary bliss and joy being in the water brings to her, it is validation, we did it...we understand her...we did something right...we have not completely failed her...we can help her be happy.  I will not ever be able to adequately express how much of a positive impact this 2400-gallon rectangle of water has brought to this house, our family, and our little bear.  We will forever be grateful to Make-A-Wish and everyone in Arizona who made this possible.  This momma might actually get some sound sleep for the first time in 3 years and 8 months...

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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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The evolving role of Mother's Day

From the time I was a little girl I have wanted to be a mom.  I couldn't wait to grow up, get married, and have a baby of my own.  When Sam and I first got married I (naively) thought that it would happen just as I had dreamt.  The first 9 months of our marriage turned out differently than I anticipated as month after month I cried never seeing one positive pregnancy test.  In May 2009 when Mother's Day came around I was so overwhelmingly excited for my friends who had been or would shortly be blessed with their new titles of mom, but equally heartbroken it wasn't my turn.  Sam bought me my first Mother's Day card with words of encouragement, but my heart was shattered.  Within weeks of that "first" Mother's Day I found out that my dream would be coming true.

In 2010 I was beyond fortunate to celebrate Mother's Day as a mom of a beautiful baby girl, my dream finally complete.  In 2011, I was not only a mom to Laeya, but I was pregnant with our second child.  I was so beyond excited to celebrate that day, but my heart broke for those who were still struggling to build their families.  I felt so fortunate to be where I was.  By 2014 I would celebrate Mother's Day as a mom of three, and by 2015, a mom of four.  The day always amazing,  but that year was my first time with the title of "special needs mom".  At the time that specific title was new and had little meaning to me, but as the years continue on the uniqueness of that title plays a bigger role.

By the end of the summer of 2016 Sam and I were surprised when we found out we were expecting baby #5.  We were surrounded by fear and uncertainty rather than the typical burst of excitement.  We were scared and unsure. What if the baby wasn't typical? What if the baby had special needs?  What would people think that we were chancing fate?  By the beginning of October those fears were unnecessary as we didn't see or hear a heartbeat, we experienced our first miscarriage.  We were both "at peace" not being faced with needing to make challenging testing decisions or playing the "what would we do if" game, and we felt thankful that G-d intervened how he felt necessary.

Today is Mother's Day 2017.  I am so honored to celebrate being a mom to four amazing children I have been fortunate to meet, yet today is the first day my heart hurts in a different way.  Based on my previous pregnancy experiences and my due dates, I would be holding or about to be holding baby #5.  I wonder if my son would have a brother or if he would still be the prince of the castle.  I wonder how I would manage being a mom to Sonzee and a baby, and I wonder how amazing it would be for Laeya to be the biggest sister of four.  I think about how fortunate I am that today I can snuggle my four awesome children because there are so many beautiful mom's I know who are unable to do that, but today is the first day I have given this topic enough thought to be sad the number isn't five.

Mother's Day to me isn't about being spoiled or wanting to be appreciated more than any other day.  It isn't about what gifts I get or if Sam was able to get to the store last minute to pick me up a card (that I honestly could live without).  For me, Mother's Day is about honoring what it is to be a mom and learning how to adapt to the various titles, curve balls, and ever changing roles that come with being a mother.  Today is one of those reminders of how mothering can be done in so many different and beautiful ways.  So if you are a pregnant mom, a mom to a child you didn't birth, or one you had to or have to share with someone else, a physically living child, a healthy child, a sick child, a child you never got to hold in your arms, or to a child you are no longer able to hold in your arms, today and every day you should be honored to be a mother, and I wish you the happiest of Mother's Days.

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Unexpected excitement

It does not cease to amaze me that one minute I can be mourning parts of the life we now lead and then a mere 60 seconds later I can be so excited about something I never imagined myself being elated over, such as purchasing new medical equipment.  Maybe it is because in my mind I had always pictured Sonzee in most of the equipment we have already gotten for her, or maybe it is because I always anticipated it would be in her cards.  Whatever the reason I will embrace it and admit aloud how I am extremely excited (and quite ready) to be on the mission of ordering her wheelchair.

I have spent hours online looking at what I felt would be the best fit for her.  I of course want her to have all the bells and whistles and for me I cannot emphasize how excited I am at the prospect of having specific areas to place her rescue medications, feeding supplies, and portable oxygen concentrator.  Those items can be extremely heavy and the stroller does not provide adequate storage opportunities.  I am looking forward to her having an adequate tray for toys while we are on the go and proper support for her body because it has to be frustrating for her when she is tired and her head flops to the side.

I believe we have settled on the R82 Stingray tilt in space and I am so excited!  It looks like a stroller (this might be annoying as she gets older), pushes like a stroller, and as far as features go it has a million.  My favorite is the 180 degree seat turning option so she can face me or face outwards.  It can be taken apart and folded to be stored and will fit in the back of the mini van folded.  I never anticipated this moment to be filled with actual joy and eagerness, maybe that will change when it arrives, but I am pretty sure based on my feelings right now that I am just ready and have accepted this portion of the journey. Now to see what color she chooses!

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"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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10%

Almost 18 months ago, our little Sonzee bear opened our world to all things CDKL5.  While approximately 90% of our exposure has been dreary, depressing, heart and gut wrenching, stressful, scary, and undesirable, there have been times along the way (10%ish) that have brought such extreme positive emotions that they are difficult to express.  Others who are on a parallel journey to ours with CDKL5 or another medical challenge might agree with me.

As you embark on this new life in a direction that was completely unexpected from anything you could have ever fathomed, the outside world starts to close in around you.  I hope that you have fantastic support from friends and family, but to be honest, there is no way they can truly understand your position.  They can offer you an ear to listen, a hug when you need it, and words of encouragement, but nothing replaces the support and camaraderie you find in the parents that are journeying right along with you.

Sam and I have both formed many online relationships with the parents we have "met" in our online CDKL5 support group.  We have both been lucky enough to meet different moms and dads over the past year and a half.  Similar to being a mom in general and having friends who are mom's "who get it", I cannot imagine being on this journey without having at least one other parent who truly understands what it is like to be in our situation.  Of course just like parenting in general, there are variations to each child's story, but to have others who have been faced with having to make similar decisions, makes the impossible bearable.  

I am so fortunate to each and every person who is on this journey with us, whether you are friend, or family, whether you live near or far, regardless if we have ever met in person or I see you often.  However, there will always be a special unbreakable bond with all of you who are in this journey because your child has a CDKL5 mutation and to all of you, thank you for making 10% of this journey absolutely incredible.

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30 days and 12 hours (9/18/16 at 9pm)

It has been 30 days and 12 hours since our little bear had a seizure (as of this post being written, and I hope by the time this publishes I do not have to make any corrections.)  I can still remember the exact way she looked, where we were, who else was present, and the emotions that flooded through me.  I have a feeling that no matter what length of time that may pass, the details of her past seizures will always be there in my mind and haunt me.  Every body movement, eye roll, and sound that she makes sends a jolt through me that takes my breath away.  I often wonder if that will ever subside.

She is doing absolutely fantastic in so many ways.  Her head control is the best it has been in her life.  People that do not often see her make comments on how healthy she looks and how big she has gotten.  While she does not look directly at people who walk up to her, if someone talks to her in an excited manner and they wait patiently, she will give them one of her signature smiles.  It does depend on her mood how big or small the grin is, but she loves to give them out.  She loves to be around people and to interact.  In the past when she was upset, she preferred to be left to herself, but yesterday I did my usual "try anyway" approach, and she actually fell asleep while we were cuddling in my bed.  A moment that may never occur again, but was photographed and etched into my mind forever.  How long will this last?

Others have asked me this question AND I cannot lie, I wonder the answer myself.  I also wonder if I actually want to know the answer.  There used to be a part of me that would say "yes", please tell me how much longer our Sonzee bear has of being free from the havoc of seizures.  I would rationalize that I would need to know so I could enjoy every second and truly cherish the moments.  If I was at a different point on this journey, my answer might not be the answer I am comfortable with right now.  However, I know what is different and I know why.  

Not so long ago I wrote a post about change and how the entire concept confused me in regards to what roll "change" had on me.  I look back at the past four months, I can see how I am different, and I can even tell you why.  I can tell you that during Sonzee's 28-day hospitalization at Phoenix Children's Hospital there were days I actually pictured walking out of the doors without her coming home.  The thoughts I had during some of those days are honestly too challenging to relive just yet, but I can tell you they did make a positive impact to the me of now.  So if you ask me now if I want to know when this dream will end, the answer is NO!  I can promise you that I am enjoying every moment to the fullest, and I am cherishing every typical and atypical Sonzee moment she has to offer.  Even the Type A part of me is quietly hushed in the corner knowing all too well that her opinion does not matter.  

Whatever amount of time we are afforded with our bear in general and as a bonus with her being seizure free we will take with gratitude and appreciation.  Despite the bated breath that each movement, eye roll, and sound she makes brings to me I will continue to be grateful for each minute that she is not in pain and that she is not seizing.  No matter what happens to her seizure control, no one can take away the past 30 days and 12 hours of pure peace and joy that we have all been fortunate enough to experience.

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Moments

There have been plenty of moments along this journey that have left my face hurt from the amount of smiling that has occurred.  Genuine happy smiles brought about from being an extremely proud mom.  The times that definitely involve me grabbing Sonzee, squeezing her so tightly, and planting hundreds of thousands of kisses on her yummy yummy cheeks in a celebratory manner.  These types of moments are thrown in sporadically, and sometimes if we are lucky, they can last longer than a blink of the eye.  I like to think of these times as G-d's way of saying..."Hang on Randi, I haven't forgotten about Sonzee".  No matter how utterly incredible these moments are there are challenges that coincide with these types of moments.  

On the positive side they are a blessing in their impeccable timing, typically occurring around the more challenging times.  The times when I feel we are at the bottom of the coaster.  The times when I feel a little lost and insecure about her development.  The times I feel like she is only child with CDKL5 not accomplishing any goals.  These moments serve as a necessary pick-me-up granting me motivation and inspiration to tackle what is next along this pebbled path.  I cherish these moments in a manner that as usual for me, is difficult to articulate.  I feel almost swollen with joy and pride.  These times essentially wipe the slate clean and mark a new beginning for Sonzee's story.  

Then there is the dreaded negative side.  The side that most people do not want to admit exists, but we all know does.  A horrible effect of these moments is that they are also a huge slap in the face.  They are a stark reminder that even with the most optimistic parenting in the world, a life with CDKL5 can realistically only bring moments of euphoria.  It is a reminder that these joyous moments are unfortunately not our normal.  They are rare enough that they have taught me to actually appreciate them in a manner I never knew was possible just a year ago.  These moments represent that at any moment the elated cloud 9 unbelievably happy; heart stirring, overwhelming, spine tingling moment can simply be popped like a latex balloon (my least favorite and most feared item).

While there is something to be said for living in the moment, it is definitely not always rainbows and butterflies.  In the past year, I have really learned to understand what it truly means to "live in the moment".  All you really have is a single moment to feel whatever emotion is present, because in a split second it is gone; the moment is gone, the thoughts you have are gone, and the feeling you are experiencing is gone.  The easiest part of "living in the moment" is saying the phrase.  The more difficult part of "living in the moment" is carrying out the action.  The most arduous part, that I am still struggling to master, is truly embracing the moment without fearing what is to come following the moments end.  

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Starbucks

Sometimes I feel that when I am unable to do the typical, every day, mundane parenting tasks because my brain is not functioning at 100% because Sonzee has CDKL5 it comes across as an excuse.  I am sure there have been plenty of times where I have interacted and the person does not fully understand how CDKL5 really plays a role in the situation.  I get it because I did not always have a child with special needs.  I have such a newfound admiration and empathy towards special needs parents, because honestly, until you are one, even if you are the most empathetic person in the world, there is just no way you can get it.  It is why people bond over shared experiences.  Why only those who suffer from cancer "get it", why those who have autism "get it", why those who have lost a child "get it".  It takes one to know one.

Yesterday morning I left the house early with my two youngest girls.  I was proud of myself for getting up early, making sure all of our items that we needed for the day were organized and packed.  I had placed my oldest daughter's dance bag in the car so we would not have to rush home before going to get her from school.  I packed Sonzee's medications for the day, made sure I had syringes, cups for mixing, a pill slicer and crusher.  I poured 13 ounces of her formula out of the premixed container and split it into an 8oz bottle and a 5oz bottle, just in case she was ravenous.  Everything was all set to go and at last minute I decided to warm up the 8oz bottle in the milk warmer...and then I left.  It took me until I was sitting 30 minutes away from our house watching Sonzee's sister swim to realize that the milk was still in the warmer.  I was so frustrated, but still decided we would not return home, and I hoped we could stretch the 5oz bottle until I needed to get her sister from school.

On the way to our friend's house, I decided to stop for coffee.  The line for Starbucks was literally wrapped around the building.  I am sure it took me longer to wait then it did to drive to that side of town in the first place.  The girls were quiet in the back seat, we had music on, and I was slowly inching my way up to the window.  It dawned on me as the window came into view that I never ordered the coffee.  (Insert emoji face with hand on chin and tilted head).  Who goes through the Starbucks drive thru and doesn't think to order her coffee?  As I pulled up to the window with my rehearsed speech, I told the Barista that I had no idea how I had not placed my order.  In her upbeat, happy go luck Starbucks persona, she assured me that it was fine and that "it happens".  (Ya, I am sure it does.)  

I wanted to tell her that my brain is not quite in the on position, that I am living in a fog.  I wanted to tell her that the baby in the back seat has a rare genetic disorder and since her diagnosis, I have not been able to function to my fullest potential.  I wanted to let her know that I have not slept more than four straight hours since February 11, 2015.  I wanted to tell her we just got out of the hospital a week ago.  I wanted her to know that I also left a bottle of formula sitting in the bottle warmer.  I wanted to justify my space cadet ways, as if that was exactly what she wanted to hear at 10am.  Instead I simply placed my order, drove away, and I am pretty sure we both laughed about how the lady in the grey minivan drove to a Starbucks drive thru and never placed her order.

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