Tuesday, March 20, 2018

The other side

I cannot remember exactly where my mindset was in October of 2015 but being a rookie on this journey I can guess I was in a more optimistic position.  I had witnessed fewer seizures, experienced fewer moments of overall defeat for Sonzee, not fully addressed her diagnosis of her being Failure to Thrive and had not done her first medication wean.  I had thoughts about wishing things would be better for Sonya, whatever that meant in my mind at the time, but then wrote a post about being content with where things were personally, because you just never know what the alternatives really are, even when from the outside others situations appear more ideal.  

There is honestly NO ideal way to have a CDKL5 mutation.  No mutation is "better" than another, they are all essentially awful and unwanted, and each child presents with unique strengths and challenges.  There is not one parent of a child diagnosed with CDKL5 (that I know of), who prayed for their child to have a mutation in their CDKL5 gene and present with whatever skill sets and or medical complexities they do because of that mutation.  Some children with CDKL5 do walk, some do crawl, some can sit, some have a limited vocabulary but are able to communicate verbally, some have behavioral difficulties, some have respiratory issues, obviously the majority if not all, have the seizure component, but there are no two kiddos who are exactly alike.  Every child who has a CDKL5 diagnosis and their family experience heart aching, gut wrenching struggles, yet I am sitting here wishing Sonzee did not have the specific challenges she has.

Why do her struggles have to be what they are?  Why couldn't she be one of the more mobile children with fewer GI and motility issues?  Why couldn't she be one of the miracle stories where CBD worked?  Why couldn't she be one of those kiddos that thrived when her seizures have been momentarily controlled?  What would it be like in our house if she showed negative behaviors such as wreaking havoc on the playroom and eating non-food items?  Why can't she tolerate the amount of food she NEEDS to survive?  I know handpicking the way CDKL5 could affect her would not be a better idea, and knowing my luck, I would probably not do her any better justice, but I wish I could have an alternative version of her story playing out next to me for me to see what it would be like if she did not have the specific set of challenges she was given.  Yet 2 years and 5 months after my optimistic approach at turning lemons into lemonade, knowing that "the grass is always greener on the other side" is not always the case, I can't help but wish so deeply that she had "the other side".   

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Thursday, March 15, 2018

Quality of Life

The moment I became pregnant with my first child I began fantasizing about the future.  Unsure of her gender during the pregnancy I had wanted a boy because I had an older brother and while we had our moments growing up, we were always close, and I considered him my protector and defender, so I wanted my first to be a boy.  At the same time, I thought how fun it would be to have a little girl.  I knew no matter what gender she turned out to be, Sam and I would become smitten.  When she was born we both could not have been happier with the outcome, our journey into parenthood began, my dream of becoming a mother came to be, and life was absolutely amazing.  Our little girl was happy and so we were happy, it was that simple.  Then 5 years and 23 days later we were introduced to Sonya, and everything we knew about parenting, about simple, and typical, was essentially thrown out the window.  Our life became rare with a huge emphasis on quality of life.

The phrase quality of life has become our household staple, it is how we respond to every situation and it is what weighs heavily on my heart 100% of the time, but what does it mean?  I realized after a conversation with one of my closest friends recently that when you do not have a child with a life limiting diagnosis, grasping the concept of what quality of life really stands for is about as clear as mud.  It also means something different to everyone, even parents of children with the same or similar diagnosis.  This is one of those tough to understand, tough to explain phrases.  There are many many interpretations of this phrase, but there is absolutely no right or wrong, no better or worse, it is purely subjective.  This topic can cause judgement and controversy but is 100% individual and that (to me) is all right.

We have found ourselves at what I consider a pivotal moment on our quality of life journey for Sonzee.  The point where keeping her needs for sustaining her life and ensuring her quality of life meets head to head.  The crossroads of where the selfishness of parenting a gift from g-d  and respecting the selfless act of what mothering really is, parallel.  This is an extremely difficult place to be.  While I know deep down there truly is no right or wrong, my brain is having a challenging time trusting in that, because there must be.  As we were told yesterday, even if something negative occurs as an outcome to the decision we make, it does not mean we made the wrong decision.  While I want to believe this to be true, it is difficult for my heart and brain to be on the same page, but as George Michael said, "you'll never find peace of mind until you listen to your heart." 

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Sunday, March 11, 2018

Go with your gut

When I signed onto Facebook this morning there was a notification telling me that I had 8 memories over the years "on this day".  Naturally I decided to go and see what they were, and I saw Sonzee's one-month picture from 3 years ago.  My caption read "1 month already?!?!".  Looking at this picture I recall vividly how many pictures I took to find the "right" one to post.  It was different than with my other children.  It wasn't because the pictures were not the perfect picture because I was trying to get her to lay a certain way or I wanted more of the background to be a specific way.  It was not because I was trying to find her cutest pose and post that one.  It was because something in my gut was nagging at me.

"Something was not right", I said those words so many times during her first month of life and they fell on deaf ears.  I felt it was so obvious in this picture, and while I wanted someone to agree with me, I was afraid of someone agreeing with me.  Her eyes were facing directly at the camera, but they were not looking at me.  Someone made the comment, "so alert" (for the record, I HATE THAT PHRASE).  I wonder if they could not figure out what was off in that picture, so they chose that overused phrase.  

It was a few days after this picture that I finally ignored others best attempts to tell me "baby's do weird things" or that I was just being crazy, and I decided to go with my gut.  It was within 24 hours that my gut feeling was confirmed.  All those twitches, shakes, and random eye movements were actually seizures, I was not crazy after all.  While there was some validation in knowing I trusted my gut and it was correct, there was not an overwhelming sense of victory when it just confirmed my worst fears.  

The past 3 years have been filled with so many doubts and questions where I continue to question my gut, but time and time again my gut wins.  So many times I challenge my own gut to play devil’s advocate and a lot of the time it is simply done because I want so badly for my gut to be wrong.  I still hold out hope that just once it will be and I tend to cling to that more often than not.  But if I could give anyone starting out on their parenting journey, special needs or not a piece of advice, no matter what others tell you.... go with your gut.

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Monday, March 5, 2018


For the past three years we have been faced with making decisions on behalf of Sonzee that have  altered her quality of life, and every once and awhile, literally her life.  It is the latter that throws me into a constant state of anxiety and panic, that to me, has to be similar to the feeling of drowning.  There are bobs back up to the surface for me to take a gulp of fresh air, but then I find myself falling back deeper in the water only to look up at the rippled surface.  As I look up I wonder how it is we are back in this position?  Didn't we do everything we were supposed to in our best attempt to avoid this situation?  How do I get back to the surface?

I am trying to filter out the clutter and confusion in my mind by conducting research and weighing pros and cons.  I feel like no matter the decision, it will only buy us a little more time before the next situation presents itself.  Nothing seems clear.  I hate to say that making these decisions does not seem fair, because it isn't about what is fair, it is about what is best for Sonzee.  I find the most challenging part of my job as her mother is removing the distractions of what I want and honing in on what she would want.  That in and of itself is suffocating.  What if I am completely off the mark?  What if I misread my gut?  Simply put, what if I am wrong? 

You would think that essentially repeating this process over and over again would make us professionals at it.  This is where the complexity of medically complex parenting comes into play in a different manner.  So many aspects to consider, so many ways to falter, so many ways this could knock down every domino we have tried to stack in her favor.  I guess this is when I have to really dig deep and give way to faith, faith in what is meant to be.  So as I sit here holding my breath deep under the water, I will do my best to swim to surface to take another breath and keep treading water.

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Thursday, March 1, 2018


It was at some point in April 2015 where I became so used to watching seizures occur that they lost their "wow factor".  Sonzee was only 2 months old.  I have seen so many varieties of seizures, so many different presentations that it takes a lot to make me lose my composure.  The first time of a new seizure type it usually takes me a quick second to adjust, but then like becoming comfortable with any new area of parenting, they too just become the normal.  We have been used to 10-15-minute seizures since August, some have needed oxygen, thankfully the majority do not.  This past weekend however, was the very first time Sonzee had a seizure longer than 15 minutes.  We gave her rescue medication and expected her to stop seizing, but it was not until 7 minutes later that she finally came out of it.  I admit the thought of dialing 911 crossed my mind, but I knew she was fine and I knew she would stop, and she did.

Yesterday was the first day this week I had not received a phone call from school telling me Sonzee had a seizure.  I was honestly a little surprised considering she had 2 within 2 hours of each other before school, but when I walked into her classroom I saw her nurse and teacher standing next to her and I said, "I was thinking it was odd you had not called me yet".  She was already a few minutes into her seizure when I gave her kisses, rubbed her arm, and started to talk to her teacher.  Her nurse was doing the timing and we were just waiting for her to stop.  Minutes continued passing by, her nurse letting me know every so often where we were on the time.  A mom friend walked by the classroom, we spoke for a little, and Sonzee continued to seize.  I met her school occupational therapist and she and a couple of others gathered around to learn about Sonzee's seizures.  The clock ticked on, 13...14.... 15....I started to take out her rescue medication and at 16 minutes I told her she had 10 more seconds before I had to give it to her.  10...9...8...7...6...5...4...3...2...1....rescue med given.

Then we waited.

We all continued to talk about her seizures and then finally 7 minutes later it stopped.  We were finally ready to head home and Sonzee agreed because she went from seizing to being rescued to playing with her hands.  I mentioned to her nurse, "Only Sonzee could go from having a 22-minute seizure that required rescuing, to playing with her hands as if nothing happened".  I do not like that her seizures are like the "boy who cried wolf" and it makes me a little sad that they do not all impact me, and that I can sit around for 20 minutes while she seizes carrying on as if she was watching Octonauts on T.V.  I know I do not have the psychological capabilities of entertaining each one like it won't be happening 3-5 more times each day, because they will, they do, and this is just part of her life, but it just hurts that this is where things are at.  

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