Monday, January 28, 2019

Controversial: Thoughts I have never written on paper

I get it, trust me I do.  I get it more than a large majority of the average population and I get it on a very specific level.  Doctors are not always right.  I would say without having taken exact statistics over the past 3 years 11.5 months that being right sits around 50% for medical professionals when it comes to Sonzee.  Ironically in a lot of our personal dealings, it is usually them who are presenting the more optimistic route and sharing the more "typical".

Since day one I was the one fighting for them to look deeper into my "mom's intuition".  It was me who was begging to be heard that "something wasn't right".  I had to fight so many times until she was 4 weeks old and had video EEG proof that my baby was not part of the "babies do weird things" movement.  The journey has been exhausting from the very beginning.

We did every possible typical testing that was provided to a pregnant woman while I was pregnant.  Sam and I had done genetic testing ourselves prior to having children when we were having difficulty conceiving in the first place.  My motto the entire time was always "I would never do anything, but I NEED to know".  Sam's motto was "Since we aren't doing anything, what is the point?"

When it comes to my pregnancy with Sonzee I have reviewed the memories with a fine tooth comb.  "You have a perfectly healthy baby" the NICU team even told me during her last two days before she was discharged home.  I asked multiple times about the questionable eye movements and her shaking limbs.  I mentioned it again at her well visit appointments when she was 12 days old and again around 3 weeks.  It was during week 4-5 that we learned she was having seizures.  It was during week 8 that we learned she was diagnosed with CDKL5.  It has been 3 years 11 months and 18 days since we have been living with the life of a child diagnosed with CDKL5.

Sure there are inchstones.  YES, we make the best lemonade there is to offer.   Are there amazing teachable moments that our family has experienced?  100%.  Will my children grow up "more compassionate, more loving, more understanding?"  Sure, and maybe it will have been because of Sonzee, but maybe it would have happened regardless?  We are part of an elite club, one that we are so thankful there actually is, but one I personally wish I never knew even existed.  I wish my other children would not have to know the harsh realities of what life with a medically complex and disabled child really means.  I wish they did not have to know what it is like to see their parents come and go in the middle of the night with babysitters, neighbors, or family members running over at all hours of the night while their parents and sister leave for the hospital.  I wish my children didn't have to see flashing lights outside their house or be comforted by the amazing team as their sister was being loaded into the back of an ambulance.  I wish my children didn't have strangers come into their home every day who they know by "nurse xyz" and who they are used to seeing.  I wish I lived more nights at home than I have at 1919 E Thomas Road on the 8th floor.

Sam and I never knew while I was pregnant what CDKL5 was or would mean.  We could never have fathomed what life would have looked like.  Even if a doctor had told us that string of characters and we would have googled we probably would have relied on the extremely rare minority of children who are physically much more able than Sonzee.  Maybe we would have prayed and felt that G-d was giving us what we could handle.  Maybe we would have felt hope that the test was wrong and that the doctors did not know what they were talking about.  Maybe we would have decided to live the same life we currently are.

The unknown becoming your reality taints your world.  There is only so much heartache you can ask yourself to take when it comes to literally watching your child suffer.  I can rationalize her smirks and occasional happier demeanor to meaning her life is content, and that she "doesn't know any differently".  The reality is she seizes multiple times a day, for minutes on ends, every single day of her life.  The reality is she is unable to hold her head up well, to sit unassisted, to walk, to see clearly.  She is unable to take care of herself by herself and no matter what potential genetic modifier comes her way, she most likely never will.  She will never be able to use her voice or really explain to me what is hurting her or how she is feeling.  She won't ever go on a date, get married and have children.  She will never be a typical and functioning member of society.

When Sam and I are faced with difficult decisions, I asked both of us one question, "Do you want to live the life she is living?"

I know there are stories of children thriving after a doctor told their parents they never would, but there are also children who are not.  There are parents who were faced with a horrible situation and they made a choice to say "yes, I want to live the life no matter how difficult it may be".  Then there are parents who made the choice not to live that life.  To those parents, I do not judge you.   No one should be judging you.  Your decision to take the baby you longed for and choose not to let suffer should not be looked down upon.  To the parents who didn't get offered a choice and are not living up to the challenges presented and maybe they are living up to them but feel they can't do this, or do not want to do this, I assure you, you aren't alone, and you should not be being judged.

Before we had Sonzee I would personally not have an abortion, but I never judged anyone who would.  After having Sonzee, with both pregnancies, I needed to know if the baby would have CDKL5 or any similar disorder.  I didn't know in certain terms what we would do if the testing revealed he/she did have the diagnosis.  What I did know is that after raising Sonzee, and watching her have to endure what she does on a daily basis, I would find it selfish for me to allow that life for another child.

Medical professionals are not perfect, they are mom's and dad's, they are just ordinary people who wake up every day and go to work and do the best they can.  They are presenting the facts the best that they know how with the information they have at that moment in their hands.  You have a right to disagree with them, you also have a right to agree, and no one should tell you which answer is right for you.  Maybe you could call me weak, awful, or non-inspirational from this point forward, but really there is no room for judgment even if you live this life, even if you made a choice one way or another.

I love Sonzee with my entire being, as much as I do my other children, as much as any mother can love a child, but I would never wish her another moment of pain or potential suffering and I would never wish the life of having a CDKL5 mutation on another child.

The Mighty Contributor

Monday, January 21, 2019


At night I tend to relax by scrolling mindlessly through facebook.  I do not understand why I have always been a magnet for seeing what feels like 50% of my feed being awareness/prayer warrior pages for children, yet I find it impossible to escape it.  Prior to Sonzee, I was hit hard in particular by three children who ended up passing away.  After Sonzee's diagnosis, I had to start to separate our reality from others, because it was honestly way too much to carry on my shoulders.  It is not that I care any less about the children being shared, but my heart and mind understand the situations in an entirely different manner now, and the words "I cannot imagine" have turned into "I get it" or "I soon will".  Even when the diagnoses do not align perfectly, the situations faced living with a child who has a life-limiting or terminal diagnosis overlap in some way, shape, or form.  It brings the feeling of suffocation to an entirely different level.

Last night two different posts popped up on my screen, back to back, neither giving me a chance to catch my breath.  Two little babies lost their battles with their respective medical complications.  Two families shattered into pieces.  The specifics of the situations different, the outcome the same.  My heart is left broken for them, and I do not have any first-hand experience with this yet.  No one goes into parenting volunteering for the position either, I wish I knew how those who are gifted the fate were chosen.  I wish (I am sure like anyone else) I knew what I could do to avoid it.  Rationally I know there is absolutely nothing, and I tell myself "it can happen to anyone", but we all know the odds, in this case, are more so in our favor.

So many stories I followed involved rare diagnoses, ironic that we are living out our own journey of rare.  It absolutely breaks my heart that so many of us are living rare.  It definitely makes it feel much less rare.  I have certainly learned that statistics really don't mean much once you become one.  I have also learned that you have to keep putting one foot in front of the other and just living each day as it comes because anything can happen.  Things can go from stable to critical in seconds. Things can bounce back to completely fine in a matter of minutes.  The curve balls keep being thrown, and the bat keeps having to be swung.  The rare life isn't so different than our life from before.  We still have no idea what is going to happen, how, when, or why...the only difference is that we can tell ourselves we get to prepare.

The Mighty Contributor

Thursday, January 17, 2019


When Sonzee’s oldest sister began Kindergarten I wrote a blog post wondering what it would be like when it would be Sonzee’s turn to do the same.  I have this constant inner battle trying to emotionally prepare for future scenarios such as that while trying to protect myself from the possibility that another scenario could take its place.  This past week has been birthday week at our house again.  Today is the day before Sonzee’s oldest sister turns 9.  A birthday that is a milestone simply because it is the LAST single digit birthday she will ever celebrate.  A thought I honestly probably never would have considered if it weren’t for Sonzee.

As I was getting ready to take a shower, abandoning the idea of writing a blog post, the post began to write itself.  What chapter will Sonya’s Story be on 5 years from now,  What will have unfolded in the days, weeks, months, and years between now and then.  Will I be in a state of shock that we would be 3 weeks from a celebration I was fairly doubtful would occur?  Or will I be mentally preparing for the day in a completely different manner?

There are situations that parents should never ever have to consider, fates they should never have to entertain, obstacles that should never need to be overcome.  There are realities parents should never have to face, yet unfortunately so many have to.  When you are faced in such a slimy predicament, the most difficult part is allowing yourself to dream of the less “expected” outcome becoming the reality.  It is telling yourself that maybe, just maybe things will work out differently than you can allow yourself to anticipate.  It is trying to convince yourself that it is OK to think positive because you might actually not get hurt doing so.

Living life with a medically complex and fragile child is working really hard at playing devils advocate in the opposite manner and challenging yourself to believe that your child could defy unknown odds.  What I personally find the absolutely hardest thing to process when it comes to mentally “preparing” is overcoming the notion that no matter how many wars we win, ultimately, at some point in time, the unsugar coated reality of this type of life means that we will lose the is just a matter of while we wait for “when”, I have to sometimes require myself to celebrate all the nows.

The Mighty Contributor

Monday, January 14, 2019


We were able to get away this weekend and have a much needed and anticipated break.  I use the term "break" lightly because really no matter where we go, or how much of a relaxing environment we find ourselves in, or how beautiful the scenery, we really cannot just "take a break" from having a child who is complete 24/7 care.  The distraction of being in a different location sort of helps to redirect our attention, but there is no forgetting or really even pausing of the life we are living.  It does, however, give our family a different experience and allows for other opportunities for us all to bond and for our kids to maybe feel that their lives are not just about their sister.

I really did my best to be entirely in the moment the whole time we were away.  There, of course, was the relocation of our home mini hospital, alarm reminders for medications, time spent making and starting/stopping her j-feeds, TPN preparation and infusion, machines beeping, daily seizures, middle of the night seizures, and naturally, middle of the night alarms ringing.  These parts of our life don't just get to be put on hold because we want to venture to the snow, but they are a small price to pay for being able to do just that with Sonzee.  The memories we made will stay with all of us forever, and we all had the "best time ever".

I have not lived in snowy conditions for 29.5 years and maybe I am crazy, but being out in the snow brought such a level of happiness to my soul.  Maybe it is because I was only a child when we moved that the thought of being in the snow brings me utter excitement?  I don't have negative memories of shoveling snow or scraping away ice on a car windshield.  I don't remember if there were struggles getting in and out of the car in snow gear.  I remember weekend ski trips and having fun with shovels in the front yard of our house.  Maybe it is because I was just a young child with no cares in the world and winter was my happy place that I have this pull and desire to spend as much time as possible in a winter wonderland?

There is this beauty in the fact that white flakes fall from a darkened sky and erase any evidence of what happened the day before.  The ground after even only a few hours creates a fresh canvas, allowing something brand new to unfold; a new story to be told.  The view is always beautiful and breathtaking.  The perfect picture painting of the contrast of life that is so apparent.  Mountains covered by clouds, but with green pine trees visible holding the weight of pounds of white snow.  House roofs covered in even sheets of white, dirt ground hidden, wildlife easily visible if they are out.  It really is just a miraculous thing to see.  While the outside imagery doesn't do much if anything to change what goes on behind the windows you may be viewing from, it gives you the opportunity to take a moment to reflect on the potential that could be, even if its brief, and even if its quickly erased, because you never know if something even more beautiful will present itself tomorrow.

The Mighty Contributor

Wednesday, January 9, 2019


Over the past 3 years and almost 11 months I have experienced a lot of internal emotions.  At the beginning, it was much easier to keep things bottled inside.  Her seizures didn't happen during the day for the first year or so of her life.  I didn't have to have conversations about her, because most people weren't aware that anything was going on.  I was more outwardly private starting out on this journey.  I have never liked to wear my emotions on my sleeves and I had not experienced enough to lose my ability to keep my emotions together.  I was a completely different person than the person I am now.

I am unsure if it is good or bad, but my ability to keep my emotions in check has lessened and lessened.  There are days if I am looked at the wrong way I get tears in my eyes.  If a song plays on the radio that strikes a cord, my eyes become watery.  If things are feeling overwhelming and someone says the "wrong" thing my patience runs thin, and I really, really, really have zero patience for stupidity.

It is amazing to me the amount of adrenaline that can course through a persons veins, accumulating, just waiting for the perfect moment to make you completely erupt, and trust me, you really do need to get it all out.  However, you are never quite sure when the moment will happen that you will become old faithful.  But at some point all of the emotions, all of the anxiety compounded with the entire weight of life will come together and form the perfect storm. 

And then one day, you may find yourself sitting at a table with a group of friends, listening to a semi heated conversation, not knowing if you should be laughing or crying at the exchange that is going on.  You won't be aware of the fact that you are holding your breath during the entire exchange.  Suddenly it becomes obvious your hands are shaking and that you aren't sure if air is moving in or out of your lungs.  You will accept the fact that you have no control over anything that is going on and you know you are having trouble catching your breath.  You will start to laugh and cry simultaneously while trying to actually breathe, and focusing on it will only make you more overwhelmed.  You might feel semi embarrassed that everything is occuring in public but at the same time, the space feels safe and small and you are thankful and relieved that you are finally letting every little thing out.

And in that moment you realize that it is not just about what is going on at that moment.  You subconsciously realize you are in a safe space, with people who care about you and who are there for you.  They may not fully be able to comprehend the situation you are in, but they are still ready, willing, and always there by your side in some way shape or form during this insane journey, over and over again, no matter how much of history repeats or how often.  And after things begin to calm down, and the entire show in all of its glory comes to a close, you now know who to call that the next time you need to have that months long buildup release get out of your system so you can start to mentally heal.  

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Monday, January 7, 2019

Life isn't...

I can't seem to shake the words Sonzee's GI doctor said to us during one of our visits over the past year when we were debating putting her on gut rest.  The words keep taunting me, popping up during every diaper change, every time we put the thermometer into her ear, every time we pick her up and carry her, during every transition, every time we get her dressed, and really every time she moves.  During and for at least 1-5 minutes after each and every one of those previously mentioned activities she screams out loud and cries hysterically while her body trembles and shakes. 

"I don't know if it will help, because her body will find something else to interpret as pain".

I keep telling myself but for two weeks she was perfectly happy.  It was only after we did the infusion for her bones that the proverbial avalanche started.  The one that we still cannot seem to get to the bottom of.  Was it just a trigger?  Will the pain eventually dissipate?  Did we just divert the pain but not really solve anything?  Is this just a small bump in the road on the path to recovery, or is this going to be her new norm?  Did we not only lose the happy bear we were so beyond excited to meet and get to know but instead make things worse for her?  Did we just spend 22 days inpatient for nothing?  Did we introduce a vessel of potential bacteria that could kill her for nothing? 

How much longer will this last?  Why does every good intention end with a huge lump in the back of my throat and tears in my eyes?  Why does she always have to suffer at our expense?  I want to just fall to my knees and scream, we are just trying to help her, WHY??? why is it another thing?! Why can't she be given a break?!?  Just once I would like a decision we make on her behalf to actually help her and not cause a secondary backlash.  Was it the solution to the gut pain?  Was this going to occur despite the "GI pain distraction/elimination" no matter when we did the bone infusion? If not the bone infusion would it have been something else? 

Sadly, I have played this game before.  We have been here so many times I only wish I was numb to it.  I know that we won't ever receive any answers to any of the above questions.  We will simply have to let time give us some cryptic answer that won't be straightforward and will likely only come from us having to make another educated guess.  Life isn't always perfect.  Life isn't always easy, and life certainly does not always make sense.

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Friday, January 4, 2019

Best of your todays

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

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

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

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Wednesday, January 2, 2019

Have it all

These last few weeks have been filled with a lot of steps forward mixed with a couple of punches to the gut.  It is so hard to make it through the punches when they come during a period of positive times that was prayed for but unexpected.  Expectations are just not something I allow myself to have any more.  No matter how many times I have told myself they are as low as low can go, an untamed piece of me gets loose and dreams up something lofty and completely unattainable and then I am left falling much harder, faster, and lower than I should be when the expectation "falls short".  So I do my best to stay away from making any sort of positive predictions. However, when something unexpectedly positive and amazing occurs and I start to believe it really is becoming our reality and then a negative wave is thrown our way, well it just about feels like I have been thrown off a boat tied to an anchor.

If you follow Sonya's Story on facebook then you probably saw that Sonzee was afforded the opportunity to meet Jason Mraz during her most recent hospitalization.  It was one of those surreal moments that you really cannot even process as it is happening.  An experience like that is not just uplifting to the children who are really the reason us parents are able to be there.  It was really hard to sit through his explanations of why he wrote some of the songs as well as listening to him singing in a room of children, who for those 30 minutes had a distraction from whatever they were enduring, without tears welling up in my eyes.  Every song will take me back to that moment and no matter where Sonya's story takes us, Jason Mraz is going to be in the back of my mind singing me through it.  

Despite the ups and downs that Sonzee faced throughout December, we saw her experience a type of happiness we have not seen from her in a long time, if really ever.  For two straight weeks, she was majority smiles and smirks.  She was visibly comfortable and she was enjoying her days.  In a more typical Sonzee twist, we saw that happiness stripped away within a moment and it has now been 10 days and it has not fully returned. While we do not know when or if she will get to experience those two weeks of December again, we wish that she may only "know the meaning of the word happiness" and that she will be able to have it all.

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