One minute 45 seconds

Lately I have been really struggling with my beliefs and the concept of hope in general.  I do my very best to try and be optimistic but the "real me" is more of a realist, which tends to come across as "Debbie downer".  I can own that about myself, and honestly, I do not feel like I am in a place to jump ship on the "perceived negativity" at this current juncture, because it is safer for me to be closer to the bottom.  When I find myself in one of these lull periods, it is as if I am more receptive to the shimmer of hope that might actually exist.  

In the middle of the night between Monday and Tuesday morning I had what will always remain one of the top 5 moments between Sonzee and myself.  As I went to start her back on her 20 hours of continuous intestinal feeds I turned my phone flashlight on and caught a smirking faced Sonzee looking over at me.  My immediate reaction was a huge smile and of course to begin recording this magic moment.  I honestly do not remember the last time I have felt her portray such giddiness and happiness outwardly, not to mention an actual "dialogue", my heart was literally exploding.  It was near one minute and 45 seconds where my 3-year-old acted like a 3-year-old.  One minute and 45 seconds so genuinely appreciated and not taken for granted that even typing this brings tears to my eyes.

Many minutes, hours, and days spent with Sonzee are surrounded by question marks.  Is she happy?  What is she saying?  Does she understand?  How can we help her?  Is she in pain?  Why are the simple things in life so challenging for her?  Those are just preliminary; my list is far more lengthy and complex.  I often feel like I am drowning with hefty decision making and uncertain repercussions.  Then randomly out of nowhere I am truly given a gift from G-d, as if he knows this is exactly what I am needing.  This one minute and 45 seconds was chicken soup for my soul and will certainly keep me company as we continue through this next phase of uncertainty along this special needs journey.  

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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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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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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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A Bucket List

There is a sense of urgency that occurs when your child has a diagnosis that has an undetermined length of life expectancy.  It is really odd when you think about it, because essentially isn't that what we all have?  No one knows when it will be our last day here on earth, yet the majority of us continue with our daily life as if we have a full 100 years to complete our desires.  It is probably safe to say that unless you or a family member has been diagnosed with a terminal illness, you are not living your life as if you were dying.  Sure as you grow older you may realize life isn't going to last forever and so you go on more vacations, you tell people your true feelings, and you may do more of what makes you happy.  But why does it take living half of your life or having a less than desirable outcome to make you realize NOW is all you have?

I have been thinking about all of the things I have wished to do my whole life; travel the world, go on a zip-line, own two homes, (my list goes on) and it made me start to think about what I hope for Sonzee to complete in whatever time she has here on earth.  Of course with her disorder we really don't know how much time she has remaining, and while yes any day could be our last, for her, it might come a lot quicker than any of us are ready for.  I don't want to have any feelings of regret for her.  I don't want to wish that she did more.  So, I have decided that Sonzee needs to have a list of goals for her to start working on completing.  Luckily, for her three siblings, this means that they too will get to benefit.  It should not have taken until my fourth child, nor should it have required her to have a CDKL5 diagnosis for me to have my "aha moment", but here I am.  

I could google bucket lists all night long, but I would much rather that Sonzee have her storytellers to help her complete this task.  I would love you to reply to this post via comments, email, Facebook messages, etc. with what you think should be on Sonzee's bucket list.  There are no restrictions, no limitations; all suggestions are greatly appreciated.  We thank you so much for your support and I cannot wait to publish the outcome!

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A letter to those who call me an inspiration

When I think about people who embody the definition of the word inspiration, the names of Helen Keller, Ray Charles, Stevie Wonder, or others who have overcome substantial obstacles flash across.  I think about those who have made profound contributions to society, Bill Gates, Albert Einstein, or Steve Jobs.  I see the faces of those who have forged through roadblocks and were forced to defend himself or herself, Rosa Parks, Mahatma Gandhi, or Anne Frank.  I think about countless others who lay their lives on the line daily protecting our streets, our communities, our countries.  

I personally do not feel comfortable being placed amongst these prestigious ranks.  The people I have mentioned have made a profound impact on millions upon billions of people.  They have redefined industries and caused ripple effects that have lasted decades beyond their times, they are visionaries.  When I think of myself, the word that comes to the forefront of my mind is "mom".

I am a mom of four beautiful children, three who are typical, and one who has CDKL5, a genetic disorder that will leave her with a lifetime battling seizures and profound developmental delays.  I will make decisions on all of my children's behalves until they are old enough to weigh in.  I will be an advocate for all of my children no matter their cognitive abilities.  I will defend my children in all situations.  I will love each of my children unconditionally, not because I am an inspiration, but because I am a mom.

I am a mom who makes mistakes daily, but who tries her best each day.  I may have to make decisions that you will never have to in your lifetime, but that does not make me any more of an inspiration than you.  I am sure you are faced with decisions that I am not.  Yes, I am a mom who is faced with tough challenges, but I am not alone, there are others on parallel journeys, others on journeys more difficult than mine.  I am not special.  I am a mom who will go to the ends of the earth, just like you, because that is what a mom does.  

While I appreciate your kind sentiment and am flattered that you hold me to such high esteem, I would like to ask, "Why am I considered to be inspirational?"  Is it because I have to watch my child endure minutes of daily seizures?  Is it because I have not publicly cracked under the insurmountable pressures of raising a child with special needs?  Is it because I do not place blame for the situation I am faced with, G-d included?  

While your words of encouragement, praise, and support offer me much needed support during my darker days.  I would like you to know that I am no-more an inspiration than YOU, the mom of one or multiple children; YOU, the mom of a typical child, YOU the mom of a special needs child; YOU, the mom of a child who is no longer physically present.  It may appear that I am an inspiration, but I assure you, I am not doing anything differently than YOU would do if you found yourself in my shoes. 

I am just a mom.  

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