More than seizures

Today marks day 4 of CDKL5 awareness month.  It is a month I have been lucky enough to honor over the 3 years of Sonzee's life.  The entire month brings similar feelings to that of her diagnosis day; a mixture of gratitude for having an answer to the "why", and pain because of everything that comes with the 5 characters that don't go away when awareness month ends.  Historically, I spend each day of this month trying to balance the positives and negatives that have come with this diagnosis, not wanting to highlight only the bad but trying to give the weight of these characters their due justice.  The truth is while the hallmark of CDKL5 is early onset, difficult to control seizures, CDKL5 is more than just seizures.

Two years ago yesterday Sonzee was finally discharged from a 28 day hospital stay.  It was a discharge we were not sure would occur, and the experience left us jolted to the core.  It was during that stay that it was clear she would most likely never tolerate feeds into her stomach again, 2 years later and those thoughts are pretty much confirmed.  She is still fighting the same battle and we still have yet to figure out how to help her.  That sadly seems to be a recurring theme, and it weighs heavily on me as a mother.  My job is to not allow her to suffer, and CDKL5 makes that nearly impossible on every level.

Sonzee is 3 years and 3.5 months old, yet our 6 month old moves circles around her, almost literally.  She cannot sit, she cannot crawl, nor can she walk.  I am able to say those words without tears now, and we focus on what makes her happy, but the facts still tug at my heart.  I wish for her that she was able to sit, that she was able to crawl so she could get to toys or places she wants, and that she was able to functionally use her hands to request hugs when she wants.  I wish for her that her voice was not locked inside her unable to communicate her basic wants and needs.

I do not need a month to remind me of everything that having a CDKL5 mutation has taken from Sonzee or our family.  I live the effects every hour of every day, and when this dreaded deficiency takes her earthly vessel from us, it will continue to wreak its havoc on those of us who have fallen in love with her over the years.  What this month simply does is allow me to reflect on the significance this string of characters has on Sonzee and every child impacted and share the weight so that I do not have to carry it alone.

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It's not fair

On Sunday morning I placed Sonzee's little brother on his tummy for a little workout.  Full disclosure, I don't do it as much as I did for his older siblings, but honestly with (what we perceive as) a fully intact set of genetics, I am not overly worried about his neck muscles or a flat head.  I videoed close to a minute of him holding his head up while Sonzee was nearby rolling from side to side.  I was so excited he held it for so long and then equally as excited that I didn't cry because my almost 3-year-old has never been able to hold her head while on her tummy for more than 10-15 seconds, and those 10-15 seconds require an immense amount of effort.  

I (stupidly) decided to watch videos of Sonzee when she was around the same age as her brother.  I know how much she works to attempt basic skills, but it literally broke my heart in half to see her struggle video after video to even try and lift her head for a second to turn it.  As I watched a couple of videos I was immediately transported back to the exact day they were taped, mixed with emotions of relief we had a diagnosis of epilepsy and fear of the unknown.  It must be some kind of protective mechanism of my brain, but I honestly forgot about these videos, and I swear in my mind she could at some point hold her head up and that she lost that skill.  I liked my reality better.  

It makes me so angry that everything is an uphill battle for her.  It makes me angry her life will not ever get easier.  The basic skill of holding up her head, which just happens as part of typical development within weeks of being born without any effort for a typical child, my almost 3-year-old cannot do, and it is not due to lack of trying.  In fact, those videos were worse to re-watch now knowing her diagnosis was more than epilepsy.  The days they were created it was impossible for me to know just how hard her struggles would become.  I feel like I did such a disservice to her making her work so hard and inevitably it not being enough.  A repetitive theme woven throughout every aspect of her life.

My heart is so full and simultaneously heavy these days.  There is so much joy with Sonzee's baby brother, yet so much aching from the cards she was handed.  We spend our time focusing on the positives and pushing out the negatives of life with CDKL5, but honestly, a life with CDKL5 is just not fair.

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Playtime Interrupted

Oldest: "Ema can I play with Sonzee in my room?" 

Me: "Yes, just be careful when you push her in the chair not to get her wires tangled"

Oldest: "Come on choupers, let's go"

(Some time goes by)

Oldest coming to me: "Ema, Sonzee is having a seizure, why does she always have a seizure when she is having fun?  I was reading her a book and she was smiling and all happy and then she had a seizure again...it's not fair"

---

Our oldest was just 5 years old when Sonzee was born.  An innocent, light brown haired, blue eyed, loving, caring, full of personality, dancing, playing around, typical big sister who has always loved to dote on her siblings and had to learn at the age of 5 what a seizure looked like in a newborn baby.  At 5 years old, she was wise beyond her years, but still a bit too young to fully understand or grasp all of what CDKL5 meant for her youngest sister.  Sam and I have tried over the past 2.5 years as hard as possible to protect her little mind and heart, answer her questions, give her only necessary information, and essentially trying our best to support her innocence a little longer.  However, our little girl is becoming older, smarter, and now at the age of 7.5 she understands more, hears more, knows more, feels more, and hurts more. 

I am not quite sure what hurts me most about Sonzee's seizures during her sibling playtime, the list is so long.  I hate that it disrupts a happy moment occurring between them all.  I hate that she has seizures in general and they occur so often that this conversation happens at least once a day.  I hate that our oldest must experience at 7.5 what I do now at 33.  I hate the sound of defeat our oldest has in terms of her play session being cut short due to the seizure "because Sonzee was having so much fun".  I hate that my only answer is "I know it stinks you guys were all having so much fun".  I hate that our 7.5-year-old rebuttals with "why does it ALWAYS have to happen".  I wish my reply could include more substance than "I don't know, it is such a bummer".  It ALL hurts.  It ALL breaks my heart.   

The silver lining comes at the end of the seizure, when I relocate Sonzee to her bed to rest and her oldest sister asks if she can finish reading to her in her room.  Our oldest and I have one of our typical sevenager disagreements because she wants to show Sonzee the pictures and cannot reach her crib, and I assure her it is ok, Sonzee will just listen because she is too tired at this point to look at the pictures anyway. I leave the room to two sisters, the 7.5-year-old reading to the 2.5-year-old and can almost for a split second forget the events that preceded and the fact that one of them has intractable epilepsy.  I will replay the events in my mind and will pray that tomorrow's playtime will go differently, but first I will memorize this image...because this gives cushion to the pain.  This love that our oldest has for her "twin-girl" is something that brings tears to my eyes.  She has her own twin size bed, with a memory foam mattress (that I personally think is extremely comfortable), but instead insists on sleeping on a toddler bed in Sonzee's room.  This brings me a wave of comfort even if it is just a ripple.

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Disappointment...again

For the past two summers I have created a list of "attempted goals" in my mind that I wish for Sonzee to achieve.  I always tell myself to be realistic, but to be honest, this is the one time of the year I actually feel extremely optimistic that during these four weeks there is no reason why she cannot progress leaps and bounds when there is nothing else to do but work with her.  Then the summer begins and the hours of each day pass by, the days turn into weeks, and I am left realizing that my fantasy of Sonzee gaining substantial ground is just that, a fantasy.

The scenery has changed, the environment is different, but the effect of CDKL5 is and always will be the same.  The seizures perform their daily havoc, actually, they are pretty much the only skill that she seems to make advances with.  Just 5 weeks ago she was having small little questionable moments, and now twice a day on average she has undeniable episodes.  I do not know when I will truly realize that we are not ever going to beat the seizures.  There is no magic potion to wave them away, and deep down I really do know this.

Her jumper is hanging in the doorway here in our townhouse and her stander sits by the wall.  Both have been used twice.  The Upsee has spent the entire time hanging in a bag on the laundry room door, my desire for us to walk together for 5 minutes a day has yet to be met.  Her bike sits by the fireplace next to a basket of toys she has zero desire to play with despite the various attempts her siblings and I make to get her interested.  Essentially, nothing has changed except my feelings of defeat are far more pronounced. 

It is the moments like these that I realize that even though I thought I had lost my hope with her, it was there, hidden away in a small space in my heart and mind, hoping to prove the majority of my heart and mind wrong.  In the end, all it does is leave a pain in my heart, a fog in my mind and it solidifies why it is I really dislike everything that surrounds the word "hope". 

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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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Resistance

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 started...in 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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Tears

A mom posted a picture in the CDKL5 parent support group last night of when her daughter was born with a caption referring to how she wishes she could go back to that time when she did not know about seizures or about what bumps her family might face.  The majority of the replies that I saw agreed with her statement and pictures of beautiful babies filled the thread along with the amount of time the families experienced their individual "ignorant bliss".  I thought for a while about whether I should add a picture of Sonzee, wondering if the reply I was about to give is what others wanted to read, but in the end, I went for it.

After I pressed send on my reply I sat there for a little, reread each comment, and liked all of the adorable baby pictures, and then I could not help it when the tears overtook my eyes.  I never had moments of ignorant bliss.  My older children never got to see Sonzee in a basket next to my bed while we all oogled and ogled over a brand new baby sister.  They never got to take turns holding her while they sat on my bed.  They never got to wear their personalized shirts as I had envisioned while we all gathered around for a hospital family photo.  I cried about that then and almost 22 months later, I am crying about it now.  

The first time her oldest siblings met her it was one on one.  They only allowed two people at a time by her bedside.  They each stood on chairs while petting her head because they were afraid of the tubes and wires.  After visiting her twice, they became sick so they stayed at home.  I spent the majority of her first week getting to know her, but not seeing her siblings.  The challenges for us started right away.  

I always knew something was off a bit when it came to Sonzee.  She would randomly scream and then soothe herself during those 2 weeks we found ourselves at home after she was discharged from the NICU.  Her eyes made questionable movements, she did not have a consistent social smile, and she did not make much eye contact.  She would do little shakes here and there and I would mention to Sam that I thought she was having seizures.  When I look back at her beginning yes I have tears, but they aren't because of how great the times were before the storm hit, they are simply because nothing about how her life has gone the way I planned or dreamed about for my littlest baby girl.

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Not Today.

Sometimes life just sucks.  There are times when it's not humanly possible to actually be fine with how things are going.  So many times I say, "things happen for a reason", "G-d only gives you what you can handle", and other motivational phrases that I don't always believe in or agree with.  Maybe if I say them enough when things are status quo, I might do better when things really suck?!  I'm guessing I didn't rehearse them very well because today, there is no reason I find justifiable for everything going on in my life and I really find G-d testing my abilities in my trusting of his faith in me. It's all a load of BS.

This week sucks.

If I have a good honest pity party right now I can look back on the past year and a half and also say confidently...things have sucked.  I really do try to find the good in all of this tangled up mess I have found myself in, but I don't want to today.  I want to just scream, shout, and cry.  I don't want wine, I don't want food, I just want to walk around with tears streaming down my face and no makeup on. I want to just be angry.  Maybe then I can sort out my feelings?!?

I don't want to look at any bright sides or be told things will work themselves out...my daughter has a rare genetic mutation with a cure no where in sight...NO IT WONT EVER BE ALL RIGHT!!!  I will get over my funk, once I am no longer seething over the fact that we have been home from the hospital for less than 10 hours and her tube is out of her nose...AGAIN.  Maybe I will do better when she no longer has to rely on her intestines to process food because her stomach is incapable of doing the job it was designed to do.  Maybe things will settle down when my 20 month old is capable of sitting, something a 6 month old does without much effort.  Maybe if I ever heard what her voice sounded like saying "Ema", "Aba", or one of her siblings names, then maybe I would have some faith that things might be ok.

I get it, this is what is in the cards for our family.  I know, I know, "I am strong and capable of dealing with it".  I get it, "I am so inspiring", and "if any family could handle it, it would be us"...yes, I hear all the motivational speeches and sometimes I even believe it, but you know what...today is NOT The day.

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Disappointed but not surprised

I am disappointed, but not surprised.  I assumed it would only be a matter of time before her little seizure freedom vacay came to an abrupt end.  I wish it could have lasted 40 days.  I can only describe my feelings as similar to planning a vacation around a blizzard or a hurricane.  You hope and pray that you will make your flight and your trip will not be cancelled because you know at some point the weather will make everything close down.  In the back of your mind, you can still envision the fun that will ensue if you should be so lucky to make it to your final destination.  When it is time to be on your way you learn that your flight will be cancelled and they do not know when they can re-book you.  You are angry, sad, and extremely disappointed, though this was not shocking news, so you turn to plan B.

I wish we had a plan b.  I mean we do in a sense, we actually have a plan b, c, d, and e, but just like most plan B's they are not as good as the original plan and honestly, I just want my original plan back.  Oh wait, that plan has not been followed since 2/11/15, so I guess I will just suck it up and continue with the windy path that we are following.  I do not want to apologize for my bitterness, but I probably should.  I am just so sad and frustrated right now.  I wanted this seizure freedom to last longer, although I know deep down that is such a selfish request.  Plenty of children who have a CDKL5 mutation are not afforded 39 miraculous days of peace and tranquility.  I really am truly grateful for the time she had free of all of the fogginess in her little brain, and I can only pray this little setback will not turn back into the full-blown chaos it once was.

I can tolerate their return as long as they do not steal our little bear away.  I am willing to compromise as long as they are not relentless and unforgiving.  I know what they are capable of and I just pray they are in the mood to negotiate.  All of our potential plans are currently in a holding pattern as we figure out what the best move will be.  It is always a delicate balance between bringing out the nukes, the tanks or waiting and watching.  I also need some more time to wrap my head around the fact that our vacation has been cut short and we have not received our new itinerary.  

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