Thursday, February 15, 2018

Doing alright

Once I find myself at the bottom of the dark holes CDKL5 places in front of me, it is really challenging for me to pull myself up and out.  It is almost too easy to just keep falling further and losing all of my ability to see the light from above.  Every day that Sonzee seizes, whimpers in pain, is unable to communicate her wants and needs is another day I feel suffocated and a failure as her mother.  Then there are these fleeting moments where I am able to see that she really is truly content with the life she has been given and that she really doesn't know any differently and I realize that I should not be discouraged.

I had one of those mommy moments during Sonzee's swim class this week where the world around us did not exist and we were in a dream.  It was one of those great moments that caught me off guard and brought some tears to my eyes, a ridiculous smile to my face, and for a split second I forgot about her troubles.   For a good half an hour I watched her in her element; not in any pain, smiling on and off, looks of content across her face, just pure happiness exuded from her as she kicked her feet, went under water, and worked on back floating.  Lately I feel as if these situations are rare and I wanted time to stand still so we could be frozen in the moment for a little longer.  I live for these moments, they are what make hallmark movies and P&G Olympic commercials. 

The other day one of my special needs mommy friends mentioned she keeps her daughter on palliative care because it is "care-ative" medicine vs "curative" medicine, the line resonated with me immediately, but it was not until today watching Sonzee play in the water that I felt its true meaning.  We will never cure Sonzee of seizures or the lack of CDKL5 protein that is present in her body, we won't ever be able to cure her GI issues or make her able to function like a typical person does in our society.  We are only able to care for her in a way that shows her we get her, we understand her essence, we only want her comfortable and happy and during her swim class I felt it was her way of giving me a pat on the back and telling me "Ema, thank you, you are doing alright". 

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Tuesday, February 6, 2018

It is not the same

Sunday marked the official beginning of "Birthday Week".  To be honest I still have not decorated the chalk board wall in the playroom, and I have yet to hang the birthday cupcake door sign.  Birthdays are a source of excitement in our house, it is one of those things I pride myself on.  The joy that comes from the birthday child is easy to feed off of and something that helps hold me accountable for "birthday week" follow through.  Besides me saying that it is "birthday week" Sonzee is not showing any source of excitement.  She doesn't run to the playroom to see that the wall is ready for her to pose for pictures.  She doesn't ask who the presents on the shelf in the garage are for.  She is not able to show if she is even fully aware that it is her birthday this weekend.

I have no idea why, but the weight of all these events and milestones have been much more challenging for me to accept recently.  Maybe it is because 3 is typically that age where a lot of things just click for a child.  It is the age that represents so much change, so much more "maturity" than the first years of life.  It is the year that all those amazing personality traits develop, and that individual personality becomes more known.  Sure, we have a glimpse of Sonzee, but sometimes I feel like I am completely off the mark.  I often wonder if her eye rolls and head turns are not sass, but rather just her oculomotor apraxia and muscle weakness?  

I have been watching videos of her first years of life, she was so happy her first year, so full of smiles and life.  If she could be stuck in a Groundhog Day for a year I would choose that first year of her life.  The year before her EEG background turned to hypsarrhythmia, before her seizures became so much longer and so much more often, before we really dealt with her GI issues, before feeding tubes and the ketogenic diet, before her ridiculously high 2-month steroid treatment, before multiple medication changes, before we started to really gamble, before she lost her true Sonzee happiness.  I think my heart hurts worse now than it did then, and I remember thinking that was not possible.  

I am going to get her wall decorated, and before this post is published the cupcake birthday sign will be hanging on the front door.  The final items for her birthday dinner will be delivered tomorrow and by Friday night the tables will be set, and the house will look like a party city.  Sonzee's siblings will be my source of birthday week motivation and Sonzee will have no choice but to embrace this celebration and know it is completely for her.  However, for tonight, I am going to take a brief pity party time out and cry over all the things she and therefore I miss out on all due to CDKL5.

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Friday, February 2, 2018

Dear Sonzee Bear (2)

Dear Sonzee,

The last letter I wrote to you was the day before you turned one.  I can remember so many if not all of the feelings I had that day as I reflected on your first year of life.  The joys and sorrows that filled each and every moment of your first year are etched into my mind.  To be honest little girl, the years have continued to pass by and the same types of feelings fill my heart and mind as your third birthday inches closer.  I feel I have grown as a mom and as a person in more ways than I could have ever imagined, but I also feel I have lost portions of myself I fear I won't ever be able to recover.  It is purely due to the situations that I have been faced with while on this journey with you, but it is due to no fault of your own.

I sit here tonight with a huge lump in my throat and tears in my eyes as I think about all you have gone through over the past almost three years of your life.  I honestly wonder about what the next three have in store for you, and I pray no matter where we are in all of this, you will have been given some reprieve to the suffering you are constantly forced to endure.  I do not want this to become about me, because this is your journey, this is all in the name of your soul's special purpose, but g-d do I wish your purpose was not at the expense that you are currently paying.  I wish I could have an ounce of your grace and ability to cope in the manner that you do with everything that has been thrown your way, because you my little bear live up to and beyond the spirit of the fighting bear you represent.

My heart aches for all that you are required to deal with, my mind is pained for the inability we all have at understanding your methods of communication, I feel suffocated as i watch your daily struggles to make the smallest movements, and my body is physically tired from watching you take part in the seizures you are constantly enduring.  I wish you didn't have to experience any of the hardships or limitations you have been given, but I must commend you on your absolute strength and determination not to let any of these things take you down.  I wish with every ounce of who I am that you did not have to live the life of a child missing such an important genetic protein.  There are so many times I feel so selfish for wanting you to keep pushing on despite all that you go through, but I also hope you understand that I would never want you to keep pushing on if you ever felt it is just too much to do.

You continue to bring out such joy and happiness to so many people.  You, yourself, all 20 pounds of you have made me an inspiration to others.  Do you know how many people have been able to make that sort of impact by the time they are three years old?   I will let you in on a little secret, very few.  You are a beautiful, strong, endearing, fierce little girl.  You amaze everyone who truly gets to know you, and you have influenced so many more people than you will ever know.  As painful as this journey has been so far, I cannot imagine where I would be, where our family would be without you.  I am so excited to be in the final planning stages of celebrating these past three years and am eagerly awaiting birthday week to begin in two days.

As always I am fervently praying that the next chapter of your story will be one filled with more ease and less days of hardships; but if it is not, I know you will be up for whatever challenge is sent your way and I hope you know I will be right there holding your hand, stroking your face, and kissing your forehead along the way.

Happy almost third birthday Sonzee Bear.

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Monday, January 29, 2018

How? Why? When?

Seizures have been consistently horrific since their debut (again) after the brief VNS miracle wore off back in July, however, this month it appears Sonzee is about to break her personal monthly record.  With three days of January still remaining, as of Sunday she was tied for October and December with a minimum of 415 minutes spent actively seizing each of those months...that is at least 6.917 hours.  Those numbers do not represent any questionable activity or brief spasms (even in clusters).  She has required at least one rescue medication a week since October, and we are extremely conservative with giving her those.  I am at a loss for words, I really do not understand, how does this happen? when is this horror going to stop? what is left for us to do?

I know this is what life is when CDKL5 is the diagnosis, but I am having such a difficult time accepting this for Sonzee.  She hardly complains except when the seizures are so horrible for her that they cause her to whimper afterward.  She puts up with every episode like a champ, sometimes even continuing on with whatever activity she was previously doing rather than falling asleep.  Regardless of how she handles each one, none of them are okay, none of them should be happening.  Why won't they just stop?  Why won't these medications we throw at them actually work?  Why is there absolutely nothing we can do for her?

I have become so used to seizures being part of our daily routine, their shock value has become nonexistent to me despite how dangerous they are and can potentially be.  I vividly remember the days when I wondered who would let their child seize 30 seconds much less 2 minutes before administering a rescue medication like the directions stated.  Now I wonder how I could possibly give her a rescue med at only 2 minutes when she will typically stop on her own around 5-6 minutes.  I have found myself saying, "what's 10 minutes?"  Are the addictive properties better or worse than the potential brain damage she could be experiencing?  Her brain activity isn't typical regardless, so I would prefer she not be exposed to more medications and so the clock can tick on. 

I wish someone could tell me how any part of this should be considered normal?, or why she continuously has to suffer? or when it will stop.  If I could have one wish granted it would be for her to wake up and have a functional CDKL5 gene, but until then I will continue to wonder how? why? and when?

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Friday, January 26, 2018

Still trying to accept...

I know one of the harder parts of this journey is acceptance.  While I have experienced brief moments where I am content with how things are, I can admit that I have not truly accepted everything CDKL5 has thrown Sonzee's way, but I don't think I ever will.  Usually after watching one of Sonzee's CDKL5 siblings who is around her age celebrate the mastery of a skill that Sonzee still cannot do I tend to feel the saddest.  While I am genuinely happy and excited for each of them as they meet their own inch stones, it makes a small dent in my heart and the doubts of what we are doing for her creeps in.  What are we doing wrong? Are we not giving her enough therapy?  Is it our fault?  Could we be doing more?  Should we be doing more?  Will more make a difference?  

This train of thought begins to wreak havoc in my mind and an internal game of devil’s advocate ensues.  Even if we give her intensive therapy it won't make a miracle happen (we have tried that).  If we do more therapies, she will surely excel (she seizes and then sleeps through the ones she currently has).  If we pushed her she would meet her milestones (she is doing her best, she cannot beat genetics and her mutation is not a "lucky" one).  She is happy and content (Is she really?)  If we finally got control of her seizures that would surely help (No. It won't because even during her 5 weeks of seizure freedom that she has experienced twice in her life, she made zero gains developmentally).  You are doing your best for her (No I am not because she should be able to hold a toy or sit).

Lately it feels like every CDKL5 sibling around Sonzee's age has blown past her.  They are sitting, pushing to sit, rocking on all fours, crawling, bearing weight, walking with toy walkers, walking holding hands, and/or walking on their own.  Maybe it just feels that way because I am feeling like it is my fault she has not moved beyond a 3-4 month developmentally.  I remember when she was 4 months old and Sam and I had dreams she would be the one who would defy the CDKL5 stereotypes.  She was taking part in every therapy under the sun, it didn't matter the cost, she would have it all.  We bought or asked for every possible piece of equipment that might make a difference that was age appropriate.  Here we are, her about to be three and I don't want to give up on her being able to sit...but even that has not happened.

I know mastered milestones do not correlate to the level of success a person has achieved in his or her life, but as a parent of a child who has hardly completed any I just feel like a huge and complete failure.  I know we have tried everything we possible could to help her and I do not know how to accept that maybe she really will not ever meet any of these "basic" life skills or that there is nothing more we can do to help her complete them.

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