Sunday, February 26, 2017


At one of our parent group meetings at the Foundation for Blind Children a reference was made about "welcome to Holland" and so naturally as a "newbie" on this journey I was interested in what was written.  I didn't have a chance to look it up because I honestly forgot about it after the meeting ended.  This past week I was unable to attend our meeting because I was with our oldest daughter at her dance competition, so Sam represented and he brought home the printed version.  It is something I could have written myself in terms of the feelings and message conveyed, but definitely not as eloquently as Emily Kingsley...without further adeu.   


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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Wednesday, February 22, 2017

Trying to find the positive

Whenever I find myself getting sucked into the trenches I try to focus on something positive, even if it is a reach.  There is always a fine line of looking at the bright side of a situation and embracing it, but not fully relying on it remaining that way.  For me I have to be careful because the path of this journey can change in a second (literally) and then the positive reference is no longer.  It is because of the experiences we have had over the past two years, (during springtime especially) that I am having finding it more challenging than usual to find the "right" positive point.

It has been a little over 24 hours since Sonzee's last seizure.  It wasn't one of the scary ones, it didn't require oxygen after it was over, and she didn't sleep for hours on end.  I am so grateful for the past 24 hours, but I know better.  Maybe her medication increases are finally working.  Maybe her brain is being nice to her and giving her a break because it's been a pretty awful week, or maybe it is just giving her some time because of what is yet to come.  I wish I could be as excited as I once was over making it to 24 hours, but two years in and I know while it is a huge deal, the celebration will not last.  I am numb to seizures.  I wait and expect them and am more surprised than not when they do not happen.  Truthfully I prefer knowing they are coming because it is a certainty, something I can "plan", something "reliable", I do not like to be sitting here in anticipation.  So I am trying to focus on the past 24 hours...but I know the clock will reset.

It has been a significant amount of time since Sonzee has been inpatient and last year we spent approximately 3 out of 5 months in the hospital (not consecutively) from January-June.  Her health since her NJ tube was placed has been relatively stable, her feeding continues to be tolerated, her seizures haven't landed us in the emergency room requiring rescue medications.  I am truly appreciative of these blessings, but I know things can change by the time this post publishes.  I know too much of what can happen and I know she is not immune to anything.  I am trying to focus on the positive of all I have listed, but that almost feels as if I am asking for a challenge...and I am not all for tempting fate.

It would be nice if the current situation we were in did not leave me feeling a bit uneasy.  It is as if my brain and body subconsciously know things are going to spiral out of control.  I hope it is merely the fear of history repeating itself.  Since we are in this uncertain limbo, I am going to do my best to focus on the fact that she is stable and continue to try and find the "perfect" positive.

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Monday, February 20, 2017

I wish...

Sometimes I wish I was a better, stronger person.  The type of person that so many special needs parents are.  The type of parent who is content with their child's progress simply because she is doing her absolute best.  The type of parent who not only finds the blessing in the life that were handed, but also appreciates it to the fullest degree.  The type of person who is not bothered by the fact that other children with their child's diagnosis have it easier or are capable of so much more.  Sometimes I wish I was a better, stronger person.

Sometimes I wish I could look at this all as a "gift".  That I am fortunate because my life now has a purpose and plenty of people live their lives without knowing what theirs is or was.  I wish I was one of those people out there who not only says or thinks that, but one who actually believes it.  I wish I did not feel like I have absolutely no control over anything in my life anymore, but more importantly, I wish I was okay with that.  I wish I could look at this all as a "gift".

Sometimes I wish I had more faith and more hope.  I wish I had more trust that things will work themselves out, and maybe even in a positive manner.  I wish I believed that even if the outcome turns out not to be what I had planned or envisioned that it is what is for the best.  I wish I had it in me to be okay with it all.  I wish I could be like so many other parents who just accept everything is what it is.  I wish I had more faith and more hope.

Sometime I wish I had four healthy children and was never introduced into this world of special needs parenting.  I wish I was not aware of the intimate details of rare disorders that happen as "flukes" or any genetic mutation for that matter.  I wish I could go back to the way it was when I had that new parent ignorance and just the slight fear that a life like this could happen to me.  I wish I did not have to try to mentally prepare myself for all the possible turns this journey might take, because honestly it is futile and the preparation will always be inadequate.  I wish that things were different, and I wish I had four healthy children.

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Thursday, February 16, 2017


I am always in awe of how the brain works.  I never really appreciated parts of its inner workings until watching a baby have frequent seizures.  I honestly "forgot" some of the emotions and thoughts that I used to have when things were the way they are now, and when they were worse.  I am not sure "forgot" is the most appropriate term, more like I didn't realize how much protection your brain can offer to you as a shield of sorts.  It wasn't until yesterday afternoon when I was subcontiously avoiding putting Sonzee down for her afternoon nap that my feelings of fear and anguish triggered the distant memories of familiarity that overcame me.  I had forgotten how much I used to dread putting her to sleep knowing that as soon as her brain was in a deep sleep the seizures would start...and here we are again.

There is something to be said for how the comfort of a familiar situation and the travesty of what that situation is interwine within one another.  The comfort of knowing that she is sure to have a seizure once her eyes close mixed with the fear of the certainty that she will actually have a seizure as soon as she is asleep, it is insane.  How are we already back in this situation?  How did her honeymoon already run its course?  How come she never even had the chance to gain any skills?  Why so soon?  I shouldn't be sitting here with wine in a tumbler and tears in my eyes while staring at her monitor praying that she won't be woken up to another seizure since she is sleeping off the one that occured an hour ago.

I honestly never thought she would ever have a honeymoon period.  A year ago things went from bad to worse so quickly that I never entertained she would actually get a break.  After her 8 weeks of high dose steroids she went through many periods where she would not have a seizure for a couple of weeks, never long enough for me to get comfortable...they always returned.  Then in August we started her on Sabril and immediately after her first dose it was as if a miracle had occured.  She spent exactly 33 days and 2 minutes seizure free.  33 days and 2 minutes we never expected but completely appreciated.  After a small medication adjustment she went another 23 days 23 hours and 59 minutes, then 53 days and 13 minutes. I foolishly started to think that maybe some sort of control was within our reach, that we had found her magic concoction and given her an actual chance against her own body.  Then after another 28 days 23 hours and 43 minutes the bulk days of freedom came to an end.  I am so appreciative and grateful that she has had a combined 138 days and 55 minutes since August 19, there are so many of her CDKL5 siblings that have't been afforded this blessing, but my heart is broken into an indescribable number of pieces right now.

I had so many visions and dreams of how much she would achieve when...if she was ever given the opportunity to be seizure free, but none of it happened.  I have always known that seizures were just a result of a CDKL5 mutation, that even without them her development wouldn't be typical, but the realization of what her specific mutation limitations are has hit me like a huge semi truck this week.  This is definitely another valley on this journey....I just didn't realize a week ago that we were at one of the highest peaks.

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Tuesday, February 14, 2017

Only human

Whenever Sonzee's seizures start to occur more often and increase in intensity, it is only a matter of time before my tightly woven sense of control quickly starts to unravel.  It begins with me reminding myself that watching and waiting is the best course of action.  It then turns into a friendly email to her epileptologist, usually accompanied with a video or two for her so she can share her opinion (which 95% of the time is agreeing with my observation and thus giving me a little jolt into reality).  I then brace myself because I know her follow up email is going to include a medication increase, and by this point I am only half on board with her suggestion.  1/3 of the time the first boost in medications does the trick temporarily, but the other 2/3 of the time we might as well be syringing her additional doses of water.  Then a few days go by and we realize things are getting worse, the emails continue back and forth, the seizures are more often and longer and scarier, resulting in us maxing out all the current medications she is taking.  Despite knowing that this will most likely do nothing, we have no choice...right?   

Besides the obvious negatives of the medication change not doing what its sole purpose was intended to do, there is now the figurative ledge I find myself trying to balance on as the winds pick up their speed.  The moment by moment nerves, the anticipation of the unknown, the fear of realizing that our options are dwindling and even if they were not, we know nothing will work for long.  The desire to figure out the trigger(s), is she getting sick? is she sick but her body is hiding it well? is it just CDKL5 in all its glory?  I am overwhelmed with doubt, my mommy-gut is confused and challenged, I am numb and do not know what the right answer is.  The chaos of the situation fills me to the brim and I feel like I am standing in a room that just spins around me and I cannot find the door.  As the room spins and walls close in on me, I am supposed to believe that "I can do this", that "I can handle this, and "that I am strong"...but I am only human.  

No matter how many times or how often we find ourselves here, in this exact situation, I have not learned how to handle it properly.  I can carry on small talk and keep my feelings inside.  I can fake a smile, and make myself laugh, I can put on a good show, but it takes everything in me to make it through weeks like these.  I can only take so much of this before I break.  I do not understand how this situation is meant for someone like me, because honestly, I am only human.

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Monday, February 13, 2017


It is the second week of February and this will be my third official post of the month.  I would like to say it is because I do not have much to write about, but it is more that I have no energy to put onto "paper" what is circulating in my mind.  It is partly because I am sure I could go to the search bar on this blog, type in a few words and voila, my exact thoughts, feelings, and words will be staring back at me.  I am beginning to realize that is just going to be how life works when dealing with CDKL5.  The seizures come, you throw out your best weapons, sometimes you win, more often you lose, but no matter what, you end up back where you your arsenal staring at the walls and debating.

For 14 days, we have been trying to gain back some semblance of control, for 14 days she has had 1-3 seizures a day, for each of the 14 days she has spent an average of 4-12 minutes not in control of her body, for 14 days we have yet again failed her.  Feeling like a failure in this department is absolutely crushing.  There is nothing I can do personally to stop these things from coming.  There is no way to explain to her that we are trying our best and that our best will not ever be good enough.  It will not ever be good enough to just try to find a solution, and there is no solution for refractory epilepsy.  That is why refractory epilepsy is also known as uncontrolled, intractable, and drug-resistant epilepsy

There is no positive spin to put on seizures, no silver lining or ray of sunshine.  There is honestly nothing good that comes out of watching your child suffer and being unable to put a stop to it.  It has been two years since I knew things were not right, and while I am numb to the experience of watching her seize, and to the seizures themselves, I am not anymore okay with the feeling of daily defeat that goes with all of this.  I know I will not ever be, I do not think any parent could be.  I guess it is only fair that she is not the only one resistant to something.

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Monday, February 6, 2017

Feeding Tube Awareness Week 2017: Comfort with the unlikely

Over the past two years I have found comfort in the most unlikely places, in a world I never knew existed, with items I did not know how to say or spell just two years ago.  One of the most challenging things we had to do for Sonzee was get her a feeding tube.  To do so we had to overcome our doubts, our judgements, our misconceptions, our fears, and all the negative connotations that come with a piece of medical equipment used to feed a child.  I personally struggled with what people would say, how she would look, the fear of her never eating by mouth again, and the fact that even though I knew deep down it was necessary, it was not so obvious to others, creating a huge cause of disagreement between Sam and me.  

It is almost a year from the day we nearly lost Sonzee while in the pre-operation room waiting for her gtube to be placed, immediately we doubted our decision leading me to want to forget the day that led to this post.  I wish the memories of that day were not so vivid in my mind.  I will not ever be certain that the chain of events that were set into motion from that day are not responsible for the battles she now faces with her stomach.  However, I do not know if we will ever be able to hold anything other than "CDKL5" responsible for the fact that she no longer can process food in her stomach.  The disaster of the original failed gtube surgery and later complications of the PEG tube placement did nothing to calm any of the negativity I felt towards feeding tubes, after all, Sonzee's condition only worsened after its placement.  Then in May as her life hung in the balances yet again, while being placed on temporary TPN, we had no choice but to allow the doctors to try the intestinal tube that goes through her nose into her jejunum.  

I was vehemently against any feeding tube that went into the nose and would be on Sonzee's face.  My background in speech therapy led me to know that there was a higher likelihood of her losing interest in eating by mouth, and the mom in me still wanting life to appear "typical" to others, knew that a tube on a child's face would be no different than walking around with a flashing red blinking sign.  It broke my heart to know people would look at her and at once feel pity, stare, or feel uncomfortable.  Ironically 8.5 months later I cannot imagine her being alive without this tube and the comfort and security I feel because of the tube on her face for others to see is the opposite of my earlier fears.  

As I take her out of the car, when I park in a handicapped parking space, I proudly place her in her stroller with her stroller=handicap blue placard that is hanging.  It is obvious we belong in the spot and that there is something not typical about her.  My fear of stares has turned into comfort and excitement that I will have the opportunity to spread awareness of CDKL5 and find comradery among others who have traveled a feeding tube journey.  For me, the tube that goes from her nose into her intestine has become a safety net, one that I am actually afraid of ever taking away.  For her, she does not know much before the tube, and she does not express any discomfort from it.  Her desire to eat is no less because of it, and she would eat all day if her stomach allowed her to.  While I wish her body did not need this tube for survival, there will always be gratitude and appreciation towards this piece of a rubber tubing that continuously saves our Sonzee bear daily.

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Friday, February 3, 2017

When seizures return...

It's been one of those weeks where life ran me over like a truck.  It's weeks like these where the regular stresses and dealings of family and life mixed together with the dealings of CDKL5, leave me feeling pretty crappy.  As organized as I feel we are, things are falling through the cracks, I feel quite defeated in the parenting department (for all of the kids), and I really dislike this winter cold season.  

As much as I would like to think that having Sonzee doesn't impact us much more so than if she were healthy, it's simply not the case.  My priority is always around the health of my children, but especially on little bear, because the slightest cold can make life hell.  Ensuring she stays the healthiest possible and that her seizures stay at bay is, in reality, not even something I have any control over.  Yet it doesn't stop me from focusing my attention on both of those things daily.  I can tell you from experience, it's nearly impossible to focus on much of anything else when you are consumed with the return of seizures, but I can also tell you it's impossible not to be consumed by them.

I always took her little retreat from seizures with a grain of salt, never once fooling myself into believe it would be permanent.  (In fact I had given up any hope that she would even get an extended break from them-so I'm thankful for the time she had). The fact that they are back doesn't surprise me, nor am I devastated, because it happens.  CDKL5 happens and this is just what comes with the mutation.  However, what I didn't miss and the thing I dread the most is the uncertainty that comes with the seizures. The unknown triggers, the guessing game of when they will happen, the attempt to plan a day when odds are it will NOT go that way, the daunting task of considering medicine changes, wondering what or if anything will help them, not knowing which decision we make will be the one we wish we had not.  All of the above is what I HATE in addition to watching her seize, but lucky for me, it comes as a packaged deal.

I know when seizures are around my ability to focus and be anything other than physically present is gone.  Older kids miss homework, activities are put off or missed, my patience runs thin, my ability to put up with anything is gone, I am simply in a constant state of numbness and just functioning to survive.   So with the warm welcoming we have received from the seizures this past week, I should probably just accept the fact that my best is just not going to be good enough in the weeks/months to come.

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