Wonder

Last night we went to a BBQ for dinner.  Our friends have so many toys and a huge backyard playground, so it was about 5 seconds after we arrived that the kids disappeared.  The weather was actually perfect for Arizona conditions, which meant we were going to eat outside.  "Perfect" still means too hot for Sonzee until the sun sets, so we parked her wheelchair in front of the screen door so she could be with us from the air conditioned house, and we sat at the table right outside.  The children were running around, her baby brother was being passed back and forth between Sam and myself, and she was happily playing with her hands in her chair.

3 years in and I am beyond the daydream of seeing Sonzee playing with her siblings by the swing set or running around.  My mind knows better than to even go into that zone, but my heart, well that does not always get the memo.  I sat at the table having a fantastic time talking, laughing, smiling, and truly enjoying myself, but part of me was with Sonzee wondering what she was thinking.  Was she really happy sitting in front of the screen? Did she want to be running around with her siblings?  Was she really content?  Does the heat really bother her?

I hate that so many times she is physically with us, but we are not completely present with her.  We are unable to cross over into her world, or be privy to any of her thoughts.  Even though we walk over to her, give her a kiss every time we walk by, and say "hey Sonzee, how's it going?", I feel like we are neglecting her.  I can't help but wonder if what we do is okay, or if she wishes it were different, that we were different with her.  As soon as the sun was out of a direct hit, Sam brought her outside and let her enjoy the breeze.  She loves sitting in the breeze, and so there she sat playing with her hands, looking as if she couldn't be happier.  Yet, I kept glancing over wondering if she could be.

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Inner conflict

I have been staring at an empty blog page for close to 2 hours.  I have so many things going through my mind and emotions traveling through my body.  My inner dialogue is about as organized as my diaper bag, and to lend some insight, I just took out an extra outfit for Sonzee's baby brother that was a size "Newborn"...he will be 5 months in less than a week.  For some reason, the impact of CDKL5 is all of a sudden just hitting me hard, and I cannot escape it. 

While the more rationale part of my brain tells me “You cannot live like this.”, the other parts are not strong enough to win that argument.  The trauma caused by this diagnosis has planted its roots deep into my psyche, making things feel impossible.  I try not to live in the fear of the potential of losing Sonzee on a daily basis, telling myself that “the length of life is not certain for any of my children”.  I am trying to convince myself that Sonzee’s baby brother is going to be a typically developing child, and that when my children have “minor aches and pains”, they are just minor, that they “will not be the worst case”.

I cannot decide if I am spending more of my time panicked about the potential “worst cases” or trying to thwart those thoughts?  Each day I wake up and for a split second I feel calm and at inner peace.  Then the panic fills my chest as if I just breathed it in, and then it finds a nice cozy spot inside and just sits.  I cannot breathe it out, I cannot make it go away.  Every moment from that point on is spent trying to tell myself that what I feel is not healthy and that I need to not focus on these things.  I can only try to take deep breaths, ignore the heaviness, and pray for it to go away. 

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Getting too comfortable

This past week I feel like I have been sucked into an uncertain realm of chaos.  The little control I thought I had over anything has vanished into thin air with such speed that I can feel its whiplash.  I have looked up at the sky about five times since last week convinced that my life is listed in the dramatic comedy section of G-d’s library.  My brain is overtired, I am physically and emotionally exhausted, fear of the unknown is debilitating, and I feel like my world is closing in on me.  Moments like these I wonder where things would be if we did not have the CDKL5 component.  How would I be different?  How would our life look? 

The way my brain functions these days I know has been significantly influenced by what I have been exposed to over the past 3 years.  I know I have reason to have the thoughts and fears I have, but that does not change the fact that I wish that were not the case.  I wonder if there was a study done on my brain in January of 2015, before the birth of Sonzee, and then now, how things might look different.  Surely the psychological effects of watching your child seize every day and face near death experiences must play a role with how your brain continues to function from that point forward. 

I know the events of last week sent me into this 100mph tailspin because they caught me completely off guard.  I bought a new hospital bag weeks ago after a parent in a local support group raved about a new backpack that comes with a charger and speakers among tons of storage pockets.  It was on sale at Walmart and I thought, “I have to have this even though we haven’t had a need for one, because the current bag I use has only two compartments”.  It came and sat in Sonzee’s room with the tags on every zipper. 

Last Monday Sonzee went to school, she had her typical day and had a seizure with her nurse.  All afternoon her nurse, Sam, and myself sat waiting in anticipation for her next seizure.  When it happened at 6:10pm, I said “oh, there we go Sonzee…we have been waiting for it”.  Never had one seizure resulted in the use of 911, or as much medication as we loaded her with, for it to stop.  We have used the same cocktail to help with a day when she has a ridiculous amount of seizures, but this was our first experience with a seizure not stopping on its own, and even after rescue meds.  I guess that is what I get for getting too comfortable.  I guess that is what I get for thinking, “why would I need to have the new bag packed?”

You would think that I would have learned in 3 years there is no such thing as “letting my guard down” or “getting comfortable”.  It is just not possible.  Things can easily change in a minute, seizures have quite a way of smacking me back into reality when I start to get content with what her "typical" is.  I now have her new hospital bag packed and ready to go in her bedroom.  I can bet the majority of the money we have that it will get used again.  It will be when I am least expecting and at the moment I have gathered enough strength to think “things are going so well, how could they possibly change?”

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Today is D Day...

April 16...we meet again.  3 years ago, today I was handed this piece of paper.  You were electronically signed 5 days ago, but I was blissfully unaware.  

Oh, how I pray that the chain of events leading up to that moment never had to happen.  I wish time could go back to the exact moment that the CDKL5 gene was forming in Sonya's body and do something differently.  If only we knew what or if there was something different that could have been done during that one split second.  I still often wonder why she was the chosen statistic and I am still unable to accept this is part of her life or our life, yet there is still nothing that we can do.

Today my heart is heavy, and it hurts.  I cannot officially say it hurts more than it did 3 years ago, but I can certainly say it is different.  3 years ago, my heart hurt because there was a reason Sonya was experiencing seizures and she never would "outgrow" them.  3 years ago, my heart hurt because we were told our 8-week-old baby girl might not develop in a typical fashion.  We were filled with fear and doubts over the trajectory she would travel.  3 years ago, my heart broke as I watched and heard Sam's break.  3 years ago, our hearts broke because we felt like we were at the bottom of the barrel.  

Today my heart hurts because 3 years have passed, and we watch our Sonzee bear seize multiple times a day.  We give her medications that help to an extent, but will never take away her pains, struggles, or seizures.  My heart hurts today because I have watched Sonzee try so hard to hold up her head, put weight on her legs, and try to sit, but her body still has its limitations.  My heart still hurts over the unknown trajectory of her path and the doubts and fears still present every day.  My heart hurts because I am more aware of what a missing CDKL5 actually means.

Over the past 3 years I have watched so many fellow CDKL5 children suffer and lose their lives and I know how real and likely this scenario is likely to become.  The past 3 years have taught me that while the selfish mom in me wants Sonzee here with me forever, the mom who has been present and watched her suffer for the past 3 years begs she won't have to continue to endure the absolutely horrific trials she has had to every moment of her life for so much longer.  

Over the past 3 years I have learned there is not much good that comes with a CDKL5 diagnosis, but good memories, great moments, and amazing friendships can still be made.  There will never be a moment that CDKL5 will ever be far from my mind.  The impact of this string of characters has been monumental.  There is so much I have learned over the past 3 years and so many changes that have been made.  While I wish with every fiber of my being the events that led up to this day 3 years ago never occurred and we were not the ones who had to learn all the intricacies of living a life with a child who is missing CDKL5 protein, that was not the case and we were...so here is to putting one foot in front of the other, waterproof mascara, a few runs to Starbucks and embracing Diagnosis Day. 

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"Hope"

There was a post over the weekend in our CDKL5 support group of a mom of a 10 month old who was recently diagnosed.  Change the date by 3 years and 7 days, and her daughter's age to 8 weeks and there we were.  She mentioned her daughter's current status, and she sounded pretty similar to Sonzee at that age.  I skimmed the replies and had zero intention of replying, after all, she was caught off guard by the diagnosis, in shock, and was looking for some hope.  I know what she is looking for, I know how she is feeling, I know what she wants to hear, and I know I am not the support she currently needs.  I am having a difficult time myself defining what hope even looks like at this point.

I remember 3 years ago it was merely a voice in the back of my mind that was saying she would not outgrow the seizures she was experiencing.  I remember 3 years ago how often Sam said exactly the opposite, he not only hoped, but really believed that when she was a little older the seizures would stop and she would be just like her siblings.  Her stint in the NICU and subsequent 8 day PCH hospitalization would become a distant nightmare and not part of a recurring adventure.  I wonder if deep down I clung to any minuscule amount of hope that I wouldn't allow myself to consider out of the devastating fear of the reality crushing me. 

It was 3 years and 6 days ago we received that phone call that redirected our focus on the path we had been journeying.  The phone call that told us we had an "answer".  I remember feeling at peace that we had an answer, eager to not want to wait the night to hear what it was, but "at least we knew what we would be dealing with".  Later on that day, Sam told me nothing we were going to be told was going to be good.  It was an odd switch of roles.  I asked him how he knew, and he told me he looked up the infant epilepsy panel and only two diagnoses were "good" and they were not what Sonya had.  I think it was one of the few times I remained more calm than him, and said, "well, we will know what it is tomorrow".

From the moment we read "CDKL5" on that genetics report, we clung to the hope that Sonya would not fall victim to all of its devastating effects.  Day after day, week after week, and year after year, I have watched her with my own eyes become its prey.  There have been some successes on this journey, and invaluable experiences, but my faith and trust in hope has been shaken to the core.  I hope she isn't suffering.  I hope that she knows she is loved.  I hope she feels we are making what we feel are the best decisions for her.  Gone are the days where I place the measurements of my hope on her accomplishment of typical milestones.  I would still love for her to sit just one time unsupported in her life, to take her first steps, to say one word, to purposefully communicate with her family, and to interact with her siblings, but if someone asked me to give them hope for their child diagnosed with CDKL5, I would say there is certainly hope, but, the reality might not follow in those footsteps.


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Mommy-ing

Sonzee's baby brother turned 4 months old last week, and I wish I could say I am enjoying every minute of the experience, but that would not be the complete truth.  After you have a child following your child who falls under the category of "rare" it becomes challenging to accept the "typical atypical" baby behaviors for what they are, and not for what they might be.  So here I find myself sitting at my computer watching videos of my first daughter when she was 4-5 months old after spending the entire day sending videos of my son to his pediatrician, two good friends, and panicking to Sam that things are not right.  

It was on my 7th video of watching my oldest doing everything similar to her youngest brother, yet vocalizing significantly less, that I wanted to cry.  I sent two different but similar texts, one said "I want to go back to being that mom", the other continued to say "...the mom you sadly never got to be and the one I miss being.  The one where her baby does everything [Sonzee's brother] does and even more questionable movements but the mom who had zero [expletive] clue about rare".  Then the tears could not help themselves, because this is just too much to keep inside.  This is not how it should be.  

No one should know raising a child with CDKL5.  I have always been grateful Sonzee was baby #4, I got to experience my naive mommy-ing moments.  The negative is that I am aware of how my mommy-ing was different, I know the type of mommy-ing I am missing.  Despite my son's congenital heart defect, there was nothing that prepared me for the situations CDKL5 has brought to the table.  I wish I could go back to being the type of neurotic mom I was with my first, because CDKL5 has brought me to an entirely different level.  

Every day I wake up and tell myself that my son "is not seizing", "he makes eye contact", "he has an adorable laugh", "he smiles at everyone and everything", and "he is fine".  But then there is a picture posted to Facebook of another child his age doing something he is not that I did not even consider he should be, or there is a momentary flashback of Sonzee at his age doing the same "weird" movement, and the panic washes over me in an unstoppable manner.  There is no rationalizing with me, or convincing me otherwise, because I am sitting here waiting for the shoe to drop.  I am so confused between my actual gut feeling, nerves, and the potential to journey down a similar path of Sonzee's with another child that it makes me nauseous.  There is something to be said about the carefree first-time mom of a typical child, the one I will not ever be again, and sadly, the one I never realized until now, I once was.

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13 Days

In 13 days we will celebrate the 3-year anniversary of Sonzee's CDKL5 diagnosis.  A day that no matter how much time has passed on a calendar, the details of that day will remain forever etched in my mind.  A day that I can confidently say "changed my life", and one that I feel I should say "for the better", but honestly, I do not believe that.  I can twist this scenario into being something positive.  I can say how my perspective has changed in many areas, or how I am a different,  and or there are people I met because of all of this, and how great these experiences have been, but today I am honoring the part of me that stays tucked away, afraid of being judged.

I loathe April 16.  It ranks up there among the days I wish could be erased from the 2015 calendar.  A day I wish would never have happened.  It is a day that no matter what, will continue to play out for the rest of my life.  It will forever remain a staple.  It is a day that cannot be erased, ignored, or forgotten because it was just a starting point.  It was the day we were first introduced to the string of characters, CDKL5, to a world that was essentially out there and just waiting for us to find.  That day we learned there was a community, an actual family for us that we never realized existed.  There were families that had already been affected by CDKL5 living their daily lives right alongside ours, and we never knew.  There were children who had already lost their lives due to one of the many complications that can arise being diagnosed with CDKL5, and I had spent 31 years oblivious.

Lately, I have found myself trying to envision what life would have been sans anything CDKL5.  It is hard to tell what exactly would be different.  Would I have had 6 pregnancies?  Would we still have had 5 children born?  Would we travel more?  Where else would I be dedicating my time and energy?  Was CDKL5 bestowed upon Sonzee to prevent something else from occurring to one of our other children, Sam, or myself?  I know the answers to these questions will one day be answered and so many more questions will eventually be asked.  After all, during this time 3 years ago somewhere in a science lab, a test was occurring that would give an explanation as to why my newborn baby was seizing, it just was not the one we wanted.

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