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.

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...

Mommy bloggers, Join me @ Top Mommy Blogs

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.

Mommy bloggers, Join me @ Top Mommy Blogs

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.

Mommy bloggers, Join me @ Top Mommy Blogs

Some things do get easier

When your child receives a diagnosis such as one as involved as CDKL5 it is easy to get swept away in fears, doubts, and worry towards the future.  You immediately want to take the disorder by the horns and defeat it...there might even be a part of you that naively thinks you can.  You immediately go into "fix-it" mode.  Wrapping your head around the fact that fixing things is simply impossible is one of those concepts that is more challenging to "accept".  I can say for me at this point when I look toward the future I don't ever see myself being content with  not being able to do whatever I can to fix the effects of an incomplete CDKL5 gene, but I am learning that not everything needs to be "fixed".  

When Sonzee was first diagnosed everything to me about her future seemed to be equally depressing.  I would look at the older kids who also had the diagnosis and wonder if Sonzee would present with the same physical delays.  It was honestly really challenging to look at my 2-month-old baby and picture that her body would grow bigger, but her capabilities would remain the same as they were.  

As her journey continues to unfold I am less and less phased by her physical limitations but watching her having seizures....the seizures are for me by far the worst effect.  As I look toward the future, imagining her in an older form seizing uncontrollably makes my stomach to flips and flops.  I have no other way to describe the feeling other than just plain helplessness and sadness.  I can see how much 15 months of a diagnosis has changed my perspective and feelings and to be honest, it isn't all bad.

A year ago Sam and I took Sonzee to the CDKL5 clinic in Denver, Colorado.  We met other families and they all had much older children.  They were beautiful girls, quiet, content, and in wheelchairs.  There was one boy who was walking around and Sam was eager to learn more about him.  To be honest, we didn't find ourselves wanting to be around the other families, it was really difficult to take it all in.  It sounds so awful, but it was really challenging.  I honestly didn't even realize the psychological toll that it would take on us when I originally planned the visit.  Behind the closed doors during our visit both Sam and I were optimistic as the doctors told us to keep doing what we were doing with Sonzee because she was doing things that "other children with a CDKL5 diagnosis weren't doing".  We wondered if it was simply because Sonzee was the youngest diagnosed child and they didn't have children to compare to her at that age or if in fact, we had a rare gem in the world of CDKL5.  We left feeling a false sense of hope and with a false sense of confidence.  It wouldn't take us long to realize that Sonzee was just like every other child, and she wasn't going to be known in the CDKL5 world because of her extra special exemplary skills.

While it continues to be an inner struggle at times seeing pictures of children who also have a CDKL5 mutation complete milestones Sonzee isn't ready for, a year later I can say that things have actually gotten easier.  If I asked myself a year ago if I thought my mindset would be any different in regards to acceptance I would have told you "no, it won't get easier", but that isn't entirely true.  

On Sunday we found ourselves fortunate to meet with another little girl with a CDKL5 mutation.  Talk about becoming instant family friends (at least on our end).  As we spent time with her parents it was similar to seeing a childhood friend who you haven't seen in years, but instantly pick back up from where things were left off.  The hours flew by as we talked and let all of our children bond.  How special it was that our older children had other children who also have a sibling that has seizures, delays, and are different...but they all have a bond because they "get it".  I don't even know if they realize at their young ages how unique and special their relationship will be as they grow up.  It isn't even a doubt in my mind that they will remain in contact in some way.

Besides the amazing tips and information we took away from our visit, what stands out the most to me is how much I have actually begun to "accept" CDKL5.  **I don't know if full acceptance will ever occur, but this is a start.  The girls are almost exactly a year apart.  Her skills slightly more advanced than Sonzee but on the whole, they were very similar.  As I looked at Sonzee's CDKL5 sister, I could envision Sonzee in another year, it was at that moment that I realized I wasn't phased by what the future looked like.  This time, instead of being fearful about what Sonzee might not be doing I saw the possibilities of what she might be.  Here in front of us was a beautiful 2.5-year-old with a love for belly dancing scarves, who is smiley as can be, and communicates when she is upset and happy.  A happy little girl who is content with just hanging out and who enjoys being on her playmat.  I saw a glimpse into our potential near future and I could easily see Sonzee in her as if I was a pregnant woman looking at a newborn baby and imagining she was mine.  The same excitement and anticipation came over me as it would wondering what my other children will do when they turn a year older.  It was at this moment that I realized that while this journey as a whole is not going to be a walk in the park, there are definitely areas that will get easier.  There is a reason our motto is HOPE-LOVE-CURE, and I don't think I truly understand the meaning behind these words until yesterday, and I owe that to our new extended family in Blue Bell, Pennsylvania.

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"

Mommy bloggers, Join me @ Top Mommy Blogs

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.

Mommy bloggers, Join me @ Top Mommy Blogs