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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Small victories

I often joke that Sonzee's pediatrician's office should create a standing appointment on either Monday or Friday of each week at 12 noon, because the last couple of weeks we have taken the noon spot on one of those days.  To say I speak with her pediatrician at least once a week would be conservative, as she so graciously answers my text messages multiple times throughout the week in order to try to keep Sonzee out of the potentially germ infested office.  As I have previously stated, we have an amazing pediatrician (it is okay to be envious).  Last week when the little bear started to act a little off the first thing I did was take her to her pediatrician on Monday.  

We decided that minus Sonzee's low-grade fever and little cough, that it was safe for her to ride out whatever cold she had without the aid of antibiotics.  Her chest sounded perfectly clear, she was tolerating her feeds well, and her older sister had a runny nose so we assumed it was just par for the course.  I left the office with the directions to keep an eye on her and to be in touch if necessary.  Every night for the past couple of months Sonzee has slept attached to a pulse oximeter that measures both her oxygen saturation levels and her heartrate.  Let's be honest, my neurotic self has wanted one of these handy little devices since I became a mother, so it was a small jackpot when I was finally able to score one for baby #4.  Once we got one, it was time to commence an attempt at a decent night sleep.  My lack of sleep since we got this was now no longer due to my fear of her stopping to breath in the middle of the night.

On Tuesday night, every couple of minutes the alarm would ring when Sonzee's oxygen level dipped below 90.  It was honestly getting frustrating hearing the alarm ring when it was only for 10 seconds or so and then it would pop right back up.  I ended up changing the settings to only alert me if the levels fell below 89 because that was the number it consistently was falling to.  On Wednesday morning I texted her pediatrician and asked her at what point I should put the oxygen on Sonzee.  I gave her an update on how things were and we were both still not concerned about how the bear was doing.  It was not until Wednesday night when Sam and I started to think that maybe things were headed in an unwanted direction.

It was around 1:30am Thursday morning when I realized I was not going to get any sleep because the alarm was constantly ringing.  How my dear husband sleeps through that sound is something I will never understand.  This time I watched the clock as time seemed to stand still because not only were the numbers in the low to mid 80s, but they remained there between 5-10 minutes each time they dropped.  Per her pediatricians directions, if the numbers were in the 80s for a significant amount of time (5-10 minutes) it was time to place the bear on oxygen.  It was at this time I yelled at Sam to wake up and told him that I thought it was time we hook her up to the oxygen.  I was not quite sure how to use the machine because when it was dropped off I had just gotten home from the hospital and my attention span for learning about an oxygen machine was nonexistent.  Sam got it set up and then we were all able to get some sleep.

By Thursday morning, her cough sounded awful and we attempted to turn off the oxygen, but her levels dropped immediately.  I panicked on the inside thinking that our Passover holiday was for sure going to be spent as a split family, with myself and Sonze at the hospital and Sam and the other kids at our friends' as previously planned.  I spoke with her pediatrician to fill her in on the situation and we came up with a game plan.  Sonzee started antibiotics and we continued with the oxygen.  

I have to admit that in the recesses of my brain I was fearful that this was going to be the cold that started her never-ending requirement of full time oxygen.  I kept that thought locked far away so it would not be one of those self-fulfilled prophecies.  Sonzee did look adorable even with the cannula in her nose, but I was not "prepared" for this to be her new every day look.  Sure, I became pretty swift with my maneuvering around with both her oxygen and her feeding tube bag while on the go, but this was not something I anticipated when she first showed signs of being sick.  We slowly began to lower her oxygen levels on Saturday.  When she was awake, she was able to go short periods without requiring any oxygen to be given.  I slowly started to breathe.  By the middle of the night on Sunday, she was removing the cannula in her sleep and was really aggravated that I was continuously putting it back in her nose.  I finally gave in and figured I would see what happened if I turned it almost completely off.  Sure enough, her oxygen level remained above 95, so I turned it off.  By Sunday afternoon, I was even able to say my previous fear aloud, as I realized my little bear prevailed yet again, and she was not going to require the oxygen 24/7...at least not now.

This little girl is definitely a force to be reckoned with.  She is a grizzly, polar, and brown bear all rolled into one Sonzee Bear package (complete with an adorable outfit and of course a matching bow).  She fights each little battle with such determination.  She is so strong and deserves such praise when she comes out victorious.  This cold could have easily sent us packing our bags to the hospital; the outcome could have been completely different.  Today we celebrate the small victory of being able to treat a cold at home.  We celebrate that we were and are able to continue to celebrate the Passover holiday as a family, all together, and in a home.  Today we celebrate another win for the home team.

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You are not alone

Everyone faces a struggle at some point within his or her life.  Whether it is socially, emotionally, or physically, no one has a life without being faced with a challenge.  No matter what you may be experiencing whether it is feelings of isolation, feelings of removal, and feelings of withdrawal or just simply feeling alone, it can lead to an overall feeling of helplessness.  You may feel like no one cares, as if no one understands, or that the burden of the weight of the world is yours alone hold.  Maybe you have a physical support system in place, maybe you have an online support group, or maybe you would just rather keep to yourself.  Please know, no matter which category you feel you fit, even if it is a category that I have not listed, YOU ARE NOT ALONE.

Believe it or not there is at least one other person out there going through a similar struggle.  They may not be handling the situation in the same way as you, but they can relate and they do understand.  While no two experiences are the same because multiple variables play a roll, someone has worn a pair of similar shoes.  There are those who will spend hours out of their day ensuring you do not have to endure your journey by yourself.  Do not be afraid to reach out to others.  Even if the person you choose to share your emotions with has not traveled your path, you can bet they have experienced their own types of pain that can be of value to you.  Let people in.  Share your story with at least one other person; it can be truly therapeutic in a manner you did not even know was possible.  In doing so you allow others to know that, they too are not alone and it can remove an invisible weight that you may not have even known you were holding.  Remember, YOU ARE NOT ALONE.

If you are one of those independent, strong willed, never lets anyone see you cry type of personality, needs to put on the brave face (<-hint...this would be me), YOU ARE NOT ALONE.  It is OKAY to cry, it is OKAY to break down, and it is OKAY to be a hot mess.  Most of us do all of those things in private regardless of whether we admit it or not, so again please know YOU ARE NOT ALONE.

Whether you are having a great day, a good day, a mediocre day, a bad day, or an awful day, please always remember YOU ARE NOT ALONE.

 

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Keep going

I am pretty sure it was quite obvious that by the end of last week I hit a personal low.  Those times are never easy to acknowledge or admit aloud, but thankfully this blog and all of the support that accompanies it has allowed me to really feel and embrace the emotions that come with being a parent of a child who has special needs.  There is always beauty in this chaotic and insane life I am a part of, but some days I do not want to see it.  Some days I just want to schedule some me time to wallow in self-pity, eat unhealthy foods, drink a glass a wine (or a frozen margarita) and just feel all of the pain that I work so hard to keep bottled up inside.  I feel like every once and a while it is okay to take a day to feel sorry for myself, but then I need to come back to reality and embrace the position that I have been placed into.

It is usually after I experience the darker days that I am more rejuvenated to get back on the horse.  I feel a sense of eagerness and excitement to tackle the tough times, embrace the joy, and celebrate the tiniest fetes.  It is as if my old blood has been replaced with healthier more positive blood that helps me to better function.  Once I "return" there is a sense of ease that sits within me, a new appreciation for the role I am playing in this life.  It is at this point, where I give in to the fact that I have no control over what the future holds and I just need to buckle up.

After a year, I can say this is my favorite part of the coaster.  The part right after the harness comes down across my chest and I tug it slightly to ensure it is secure and the coaster car pulls away to embark on the slow ascend to the top.  This is the part where I get to dangle my feet and think about everything that lies ahead with a sense of eagerness and slight tinge of fear.  The part where the course of the coaster is unknown but knowing deep down it is sure to be a thrilling ride.  It is during this time that I feel every emotion in me, but the sheer energy within me brings about a huge smile.  It is at this point when the Rascal Flatts song "Stand" fills my head and I just have to brace myself for the descent of the coaster.

"when push comes to shove

You taste what you're made of

You might bend till you break

'Cause it's all you can take

On your knees, you look up

Decide you've had enough

You get mad, you get strong

Wipe your hands, shake it off

Then you stand, then you stand"

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Drained

This week has been especially exhausting.  While having four children and one with special needs could never be classified as a refreshing daily spa extravaganza, this past week has really taken a toll on me.  I have not fully recovered from my solo parenting gig while Sam was back east for 4 days.  I give MAD PROPS to those of you who are single parents...  (Please take a moment to pat yourself on the back while I clap my hands in a standing ovation).  I feel drained and just completely empty in all areas.  I almost feel as if whatever energy I had in me has been sucked out with an industrial vacuum cleaner, removing the fight I usually have from within me.  I am so burnt out from having to advocate and fight for literally every single thing related to Sonzee.  Why do I even need to fight?  I cannot comprehend why insurance companies, hospitals, doctors’ offices, the state system, etc. have a system that is essentially so broken that parents need to go to war for the tiniest little things.  I can only say that clearly those in upper level management have only had healthy family members, and g-d bless them, but so not helpful for me.

My body is tired, my brain is tired, my eyes are tired...there is literally not one part of me that is just not over it.  If I had a motto this week it would sound like Dane Cook in "Nothing Fight"..."...I don't even care...zzzzz...I don't even care...don't even care...”  My patience is thin, my tolerance is low, I have zero desire to blog, and I am definitely not in the mood to smile.  So what I have decided is that I am going to wallow in self-pity for a little, then take advantage of the amazing gift of me time that was donated to me this morning and I am going to get a large iced coffee afterwards.  Then I am going to smack myself across the face, paste on my smile, get some big girl panties on, and start my weekend in a much better place.  This way when Monday rolls around and I have to resume the chaos of crazy Zaila family life, I will be able to tackle it head on with a much better attitude.

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A slump resulting in A CALL TO ACTION

Growing up I was always the athletic type.  I participated in pretty much every sport that was offered in whatever location we were living.  Softball ultimately became my game of choice.  I find it comical that my least favorite sport to watch is professional baseball, but I digress.  Softball was my thing.  I mainly pitched or was the short stop.  When it came time to my position at bat, it was typically 4th.  My nickname as well as the word written on the back of my shirt was "slugger".  The sport of softball and I clicked.  It was something I had a natural ability for, but at the same time I still had to practice religiously.  There were times that I struggled with my game and found myself in a hitting slump.  

I wish I remembered exactly how I worked my way out of those times.  That would definitely prove to be valuable information to me these days as I find myself in a constant fog.  The adjective I would use to describe my disposition...  "A slump".

I feel my overall performance level is well below expectations.  This is trickling over into every aspect of my life.  I feel inadequate as a mom as I am short tempered and I do not feel like I am giving all of the kids my undivided attention.  That part alone feels nearly impossible.  My mind is constantly racing; there is no way that my attention could be anything but divided.

As far as climbing out of the rock bottom pit we have been in in regards to Sonzee's health and development...it seems that challenge will be never-ending.  When I think she is on the mend, something random comes unexpectedly and knocks her back.  I wish things would get easier for her and stay that way.

In regards to my blog posts I feel like my slump is related more to the simple fact that I just do not feel like I have many uplifting words to share.  I want so badly to have words of wisdom and a nice little fortune cookie type of message that people walk away from the screen feeling all warm and fuzzy on the inside from reading.  I just do not feel like I have that type of stamina in me these days.  I try to abide by the "fake it, til you make it" type of approach...but the amount of energy it requires to simply "fake it" is even beyond my current capabilities.

In terms of Sonya's Story and raising awareness and finding a cure for CDKL5, it feels as if we have hit a roadblock of sorts.  While this blog provides a source of much needed therapeutic comfort, my main goal is for us to help bring awareness to CDKL5 at a significantly higher level.  We need the character string of CDKL5 to be known by MORE than just the children and families whom are personally impacted.  We need to reach farther out of our inner circles and get the disorder out there.  CDKL5 is important, our children are important!

ALL the children of CDKL5 need US to help them find a cure.  This is not just about Sonzee.  This is about bringing awareness for ALL of her CDKL5 siblings.  This is about helping CDKL5 gain momentum so more money can be raised, so more research can be completed, so children do NOT have to suffer, and so children do NOT have to die.  So families of these children do NOT have to suffer.  So NO ONE has to suffer due to CDKL5.   

For those of you on twitter our handle is @SonyasStory and please fill your twitter feed with #CURECDKL5, #CDKL5, or any other hashtag with CDKL5 on it.  For those of you on Facebook share this blog post and our journey.  For those of you with any type of media connection, sports connection, music connection, any connection...PLEASE CONNECT US!!!  Please help us tell Sonya's Story and that of her CDKL5 brothers and sisters!!!!  

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Thank You

It can be really challenging when you find yourself in a situation where you are accepting of generosity to communicate the appreciation that is being felt.  We have been so fortunate to be on the receiving end of so many selfless acts of kindness since Sonzee's diagnosis.  There are so many "thank you's" that need to be expressed publicly that today's blog post is dedicated to all of YOU.

When people ask me if we have help from our community the answer is without a doubt "YES".  To me the definition of "our community" spans greater than the physical confines of Phoenix, Arizona.  Our community of Sonya's Story tellers continues to grow and expand and with each growth we welcome new and amazing people into our extended family who offer assistance in various ways.  You are all so greatly appreciated.  You are all important.

Whether you "just" read my blog posts or like the pictures that are posted to her Facebook page, you are showing your support.  Whether it be a more physical assistance and you are dropping off dinners on a routine basis or randomly stopping by with dessert.  Whether you have taken the kids after school for a play date or dropped them off at school in the morning, you are amazing.  Each call, text, Facebook message, and/or email is appreciated so very much.  If you have purchased a Sonya's Story item from us or from one of our side fundraising campaigns that help us raise awareness of CDKL5 and simultaneously send money to the IFCR to help us find a cure, you are doing so much more than you think.  Each post that you share, each person you say the 5 character string of "CDKL5" to, brings new members to our family that will fill a new purpose.   Each day that you check-in on Sonzee is another moment that you are deserving of a pat on the back.

If you have a personal business and have donated your proceeds or a percentage of your sales, you are amazing.  If you pray for her health and happiness G-d is listening and he hears your prayers.  If you force me to take "me time" I am so very thankful for the respite and I know Sam feels indebted to you. YOU all are making this journey easier on us.  YOU are all making this journey bearable.  Because of all of you, we know we are NOT alone.  

To those of you who came to visit and sat with me at the hospital and those of you who were privy to seeing me fall apart in person you were fantastic at your "job".  To those of you who watch the bear weekly and love on her in person...that is so incredibly meaningful to us.  To those who offer medical advice and special needs wisdom to help us navigate the path, it is hard to show how much that has meant and continues to mean.  To those of you who message me with a recommendation, I may not share that we are trying them but trust me, even if others (myself included) might find them to be ridiculous, it IS being tried.  We are just so amazed by how much YOU all have made Sonzee bear part of your lives.  She is one special little bear to be able to snuggle her way into each of your hearts without much effort.  Thank you for making her part of your hearts and life.

It is extremely challenging to put into words the impact you have all had and are having on us and we appreciate YOU so very very much!!  THANK YOU, THANK YOU, THANK YOU...although that still doesn't feel like those words are enough.

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8 Things I Wish I Knew When Sonzee was first Diagnosed

We will soon be “celebrating” the one-year anniversary of Sonzee’s CDKL5 diagnosis day.  The results were identified after blood was taken on March 17, 2015, when she was only 4 weeks and 6 days old.  Just 9 days later on March 26, 2015 the genetic tests for the Early Infantile Epilepsy Panel were run.  This included testing for genetic sequencing errors on 80 genes that are responsible for infant and childhood epilepsy.  On April 11, 2015, when Sonzee was exactly 8 weeks old her report was electronically signed and we learned the cause of her seizures was due to an error on her CDKL5 gene.  I am still trying to figure out the best way to "honor" her diagnosis day.  As I continue to sort that out I will begin by sharing a list I came up with (with the help of Sam) of the 8 things I wish I knew when she was initially diagnosed almost a year ago.

1.  You will need time to grieve.
Grief is not solely reserved for those who have physically buried a child.  While you have not lost your child to death, you have lost the “perfect child” you anticipated you would have.  It takes time to come fully to terms with your child’s diagnosis.  Do not rush the process.  Even a year after the diagnosis, there are still days that result in grief.  Grief over the past, grief over the present and grief over the future life your child will lead.  Grief comes in waves and you should not expect to just “get over it”.  It is okay.  Allow yourself time to grieve over the expectations you had prior to the “finality” of the diagnosis.

2.       Do not be consumed by your grief.
While it is more than appropriate to grieve the loss of the child you anticipated, it is important not to let that grief overshadow the physical presence of your child.  You never know how long your child will be here on this earth and you don’t want to waste your precious time with him/her missing out on the joys of parenthood that do exist.  Live each day with as close to zero regrets as possible, so if g-d forbid you have to say goodbye sooner than you anticipated, you will not look back and say, “I wish I….”

3.       Having your child receive his/her diagnosis at an early age will NOT change the outcome. 
Not everyone is “fortunate” to have his or her child diagnosed when he/she is 8 weeks old.  We thought for sure that our daughter being the youngest child diagnosed with CDKL5 would mean that she would surpass the other children in the ages she would attain developmental milestones.  We thought since we had so many parents giving us advice regarding what they would have done had their child received their diagnosis early, that our daughter would be able to accomplish more and avoid more of the hurdles.  In the end, you can be as “prepared” as humanly possible, you can think you can outsmart the disorder, but when your child has a rare disorder, the rare disorder will still run its course.

4.       Having a diagnosis will give you closure in one sense, but will also leave you with doubts regarding the future.
You will hear many times that “at least you know”, or “you are so lucky that your child was diagnosed at such a young age”.  This is true on the one hand, as you have a support group available, you have a “projected route for your child’s journey”, and now all of the symptoms your child displays make sense.  On the other hand, you are seeing first-hand the ugly side of the diagnosis.  You will witness the struggles that potentially lie in your child’s future.  You will see babies and young children die along the way.  You are seeing a glimpse into the potential life your child will lead.  You can no longer hide yourself from the facts.  You are no longer able to be blissfully ignorant.  This can leave you feeling depressed and defeated.  It is okay, take it all in, and know that every child is different.  Your child will write his or her own story and follow her own path.  Just follow their lead.

5.       You are not a failure.  There will come times following your child’s diagnosis that you will look at other children and see their accomplishments and feel like it is YOUR fault that your child has not accomplished the same milestones.  All children develop individually at their own speed and have their own unique strengths.  What your child can and cannot do is NOT a reflection of how much time, energy, efforts, and love you are pouring into your child.

6.       Do not judge the parents who have older children with your child’s diagnosis.  When you look at children who are older with the same diagnosis as your child, your thoughts may wonder to “well if they knew early on then they would have been able to do this and that by now”.  You may think that enrolling your child in every therapy imaginable will make all the difference.  Keep in mind that all of those children were babies themselves and their parents did exactly what you are doing now, and they will always do right by their child as you will do for yours.  Just because you do not see their child meeting milestones, does NOT mean these parents are not working with their child every day.

7.       Lean on the parents of other children with your child’s diagnosis for support and guidance, they will be your best tool.
If you are as lucky as we have been to have an amazingly active and supportive online community that has children with your child’s diagnosis, become part of it.  Immerse yourself, make friends, and get to know the other children and parents.  They will be there in your time of need.  They get it.  They will lift you up when you are down, they will sing praises when your child excels.  No one knows what you are going through better than fellow parents.  No matter what part of the journey each parent is on, each mom and dad will welcome you into their lives as if you are family, because you now are.

8.       Trust your parenting gut.
You will spend a lot of time in and out of doctors’ offices and hospitals.  You will find professionals who have your child’s best interest at heart and others who will not.  Regardless, NO ONE is a better judge of what is going on with your child than YOU!  Trust your intuition and trust your knowledge.  YOU know more about your child than ANY doctor does.  ALWAYS go with your gut!

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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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