Suffering

I haven't been able to get the word suffering out of my head recently.  It just follows me around like a real-life version of Jiminy Cricket, constantly there, unable to shake, just lingering.  Every time I watch her seize, when I see her confined to a chair, when she is laying in the same spot on the floor, as I lift her from point A to point B, essentially all. day. long.  The mental follow up thoughts are why, and for how much longer?  It really is such a delicate place to be, unable to comprehend life without her in it, and wondering when G-d will end-all of her pain and suffering so she can actually be able to truly rest. 

I often wonder what she must be thinking and experiencing herself.  What does life look like through her eyes?  We don't get the opportunity to know her thoughts or feelings.  We assume the majority of what she is communicating.  We make unthinkable decisions on her behalf.  Her body does the same thing on repeat daily, with only stopping if she is sick.  Days full of seizures and the aftermath that they bring.  Medications that I am sure cause side effects she doesn’t even complain over because it is her norm. She is forced to experience constant seizures that are unable to be controlled and unwilling to give her an opportunity to truly participate in life. 

It breaks my heart to watch her suffer like she does.  It breaks my heart that we have failed to bring her any type of relief no matter how much we have done or how much we have tried.  It breaks my heart that there is not a single thing we can do to stop this vicious cycle of attempting a remedy and failing miserably or sometimes less miserably.  It doesn’t help and I don't want to be told: "she doesn't know any different" because that does not make it okay.  It does not make it justifiable.  It does not make me feel even an ounce better. And most importantly, it does not reduce any of her suffering.

Now what?

Prior to the official CDKL5 diagnosis, we were told by the epileptologist who originally read Sonzee's EEG that she was most likely not going to outgrow her seizures.  At the time it was Sam who was told this when he asked him if he thought she might.  The doctor never went on to explain why he felt that, nor did Sam push for clarity.  I took that statement to mean the reason behind her seizing wasn't "a good one".  When she gained the CDKL5 diagnosis, we feared her getting the infantile spasm diagnosis, but held onto the fact that at the time she had only 50% chance of them occurring.  Sadly, it wasn't her that was spared.  Although we didn't have any sort of seizure control it was during and then after failing the specific infantile spasm treatment that I feel like we started losing this battle.

For close to 5 years we have made every attempt under the sun to try and alleviate some of Sonzee's seizures. We have failed a ridiculous amount of medications, had a device implanted, attempted CBD and THC with her very own medical marijuana card and knowing it most probably wouldn't help, still tried the CBD that became FDA approved last year.  Don't get me wrong, everything we have done has in some way made a slight difference, we have achieved some minor victories with these little CDKL5 wars, but it just isn't anything substantial enough to allow her to gain skills or not suffer all the time from constant seizing.

This past August for the first time in her life I said, "no more".  No more to the "maybe it will work", no more to the "let's just see", no more to the "we don't know", no more "trying it out".  After close to 5 years I know how this game works.  We had enough history to say "no more" was a completely educated statement.  However, when you aren't alone on a journey like this it takes both parents to say "no more".  Sam wasn't quite on board with what he calls giving up.  He wasn't quite ready to throw his hands up in the air and say we have given it our all, and so despite my better instincts I said "One more time, and this is it.  We give her a hardcore med and you see that it won't work and she will lose her head control and then that is it, we are done."

As of Thursday last week our epileptologist said, "if it isn't working, wean it as slowly as you started it".  So here we are, like I anticipated with just another medication/combo failed.  There is no victory in "being right", in "knowing" this was going to be the outcome.  There is just pure defeat, sadness, and anger that her CDKL5 diagnosis continues to prevail.  It continues to wreak havoc on her body and especially her brain.  It continues to not cut her any slack or let her have a victory.  It just leaves us all sitting here wondering..."now what?!"

Keep on moving

3 years 5 months and 11 days ago Sam and I made the "controversial" decision to start our then 7-month-old baby Sonzee on her first dose of CBD oil.  I remember giving her the oil via a dropper into her mouth under her tongue a couple of times a day, and especially while she slept.  I remember the fear of dosing her incorrectly, the initial skepticism over whether it would work, and the curiosity of whether it would actually work for her.  I remember being cautiously optimistic, but at the same time, there was a very large part of me waiting behind the scenes to pull the cord that sent the room into a full-blown celebration when it would be the answer, HER answer.  I remember the initial feeling of defeat when that was not the outcome, HER outcome.

Over the course of 2 years, she would try multiple brands of oils, pastes, and types.  After each unsuccessful attempt, we were hit with mixed emotions.  Was it the brands we were choosing? Was it the dosing?  Was it the type?  Was it an allergy to the carrier oil/base? We felt disappointed because we felt surrounded by so many success stories, why couldn't she be one of them?  In my dreams, I planned on purchasing a billboard to join the bandwagon of spreading how medical marijuana was medicine, how it really does work, and how much better it is than pharmaceuticals.  Yet every time we found ourselves let down, trying to rationalize why it didn't work.  Then someone would share their success with another brand and we would talk ourselves into trying it again.

For the majority of 2018 we said we were done with any CBD oil, but then Epidiolex came to the market.  The jury was inconsistent even among kiddos with CDKL5, but it seemed again the vast majority who were on the trials had amazing success, so naturally we had to try it.  The day the FDA approved doctors for prescribing Epdiolex was the day Sonzee's epileptologist wrote the script.  With eagerness and anticipation, she too was curious and excited to see how Sonzee would do, we were her first patient to finally get it and start it in December.  As usual, I didn't allow my mind to run too far off into the land of CDKL5 miracles, but I definitely put more than one egg into the basket.  Which is why my heart is hurting and feeling a heavy-weight as we are in the process of weaning what was her "hail mary".

I wish I could convey in words to those of you not parenting a child with refractory epilepsy exactly how it feels to know there is absolutely nothing you can give your child that will ever stop her seizures.  I wish I could express the heavy-weight mixed with airlessness that resides in my chest over the fact that nothing will ever work, but yet we are incapable of not trying more cocktails, more useless combinations of pharmaceuticals, or potential new hail mary's that will pop up along the way.  I wish I could adequately explain the pain and suffocation that never goes away because as long as she is alive she is suffering multiple times a day for 10+ minutes each time and there is nothing we can do for her.  Nothing exists to correct the awfulness that ONE little misspelling on ONE gene has caused.

Sadly, our chapter with CBD is coming to an end.  Part of me doesn't want to believe that, and the other part of me says "just let it go."  It has nothing to do with her age, with the brand, with the dosing, with type, and/or with the base.  It is just like every other epileptic medicine (natural or not) that works for some and doesn't for others.  Even though we have been down this path before with so many medications, breaking up doesn't get any easier.  We will eventually get over this loss, it will take us some time for us to allow ourselves to believe something out there will work.  But eventually the disappointment won't feel as fresh and the optimism (while never as high as it once started) will slowly build its way back up, and no matter how many more times we will inevitably find ourselves traveling down the same exact path, we will do it with a smile. Because, as Albert Einstein said, "Life is like riding a bicycle.  To keep your balance you must keep moving."

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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Gambling

I am not a fan of gambling, chalk it up to not wanting to lose, whatever the underlying reason is, I just don't care for it.  There is too much uncertainty involved, too much on the line, and while there is that chance I could win, there is a (bigger) chance (in my mind) that I will not.   There is too much uncertainty when it comes to gambling, and while some people enjoy the thrill of the experience, it honestly gives me increased anxiety, so if I can, I avoid gambling at all costs.

In February 2015 our journey of near daily gambling began, but instead of it being one of those situations where if you lose you can just shrug, walk away, and still go on your merry way, it became a gamble where it turned out even our best chances would leave us pained and drained on all levels.  There is nothing positive about making choices that will eventually backfire or provide more uncertainty.  I, the person who doesn't even like to put my money into the stock market because I consider it too risky, is stuck being forced to gamble every single moment with my 2-year old’s well-being and essentially life.

Last night I was making my new desk calendar on Shutterfly, because this year’s ends on October 31, 2017, and so I began to look through 2017 picture albums.  Every picture of Sonzee represents a decision that we made with the intentions of making her life the best it could possibly be.  We removed a tube from her face, traveled across the country for medical advice, had her undergo surgery, try (and fail) multiple anti-epileptic medications, try various medications to help her GI issues, and had her partake in various therapies (that honestly haven't ever made a difference in her capabilities).  When the tears entered my eyes, I was not sure of the exact reason.  Was it happiness over the ones of her smiling or sadness over the ones of my three typical children smiling without her in the picture because they were standing somewhere she couldn't be, she was asleep from a seizure, or she was in the hospital?  So many pictures involved the blue sheets of the hospital bed, hospital gown, EEG hat, or IV.  Each one represented a gamble we took in her honor to help, yet ultimately failed her in the process.

I try my hardest not to look at our failed attempts as a reflection on our decision-making capabilities or my bad gambling luck.  I tell myself this is just the deck of cards we have been handed and we are doing our best every day.  I try not to get angry over the situation, because it is what is meant to be, for her and for us, but this gambling is breaking me down.  Every decision if it has a positive outcome is short lived, and ultimately ends in heartbreak for us and it seems pain or discomfort of some sort for her.  I wish there was a crystal ball that gave us the right answers on how best to help her, but there aren't any right/wrong...it’s just outcomes that come from the best decision we can make at the time with the information we have....

...but no matter what, it will always be a gamble.

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Sensitive emotions

I can clearly remember how Sonzee was 2 years ago when she was close 5.5 months old.  Her diagnoses of CDKL5 known to us already for a little over 3 months.  She had been enrolled into therapies for 4.5 months at that point.  Her seizures were finally under some semblance of control, only happening every other day.  I remember being upset with that form of control.  I remember despite knowing the odds of her sitting, walking, talking, and/or being functional I was filled with so much hope because she was so young.  I remember distinct conversations with her physical therapist where we would both say that "Sonzee will...." and "She is so young....".  I remember feeling like maybe, just maybe, she would be the outlier to the (extremely few) journal articles written that gave the statistics about children with CDKL5.  

I can clearly remember 14 months ago when Sonzee was 15 months old.  Her life hanging in the balance as she spent a month in the hospital with it unknown to us whether she would be leaving the same doors we brought her through in our arms.  Her amazing therapists came and sat there encouraging her along the way.  She was swollen from medications, TPN, and additional fluids.  She had transfusions of blood and various other items to balance her metabolic panel, and developed an allergic reaction to the one seizure medication that at the time she appeared to be responding to.  Her seizures were at bay, but her physical development was far worse due to her failing body.  I remember feeling utterly helpless and wondered if it was going to be our turn to join those who had lost their CDKL5 children.

The years have passed and our attempts to help Sonzee live her best life possible have not gone the way I personally have intended.  Despite the relentless seizures and the awful GI system she was blessed with, we have not ever stopped her therapies.  Her therapists sit in our home whether Sonzee is an active participant for the hours they are scheduled.  They reschedule when Sonzee is having a difficult day and they do their best to help her have the best quality of life possible.  I will never say that the diagnosis of CDKL5 defines who the essence of Sonzee is, BUT I will loudly announce that it plays a crucial crucial role in her body's ability to achieve skills and perform "simple" tasks.  

Last night was one of those times where I felt like such a failure despite all the therapeutic efforts we have tried with Sonzee.  I truly believe that the words that led to my feelings were not intended to cut me like a knife.  I will lend it to me being super sensitive, but I am going to embrace the pain they caused regardless.  No Sonzee does not sit, she does not even want to be held upright at times.  She is wheelchair bound, and this is not changing any time soon.  Her physical abilities do not have anything to do with her personality so I do not let her lack of development negatively affect me.  It is probably irrational of me to be the slightest bit disappointed with myself over her development when just yesterday over an 11-hour period she endured 3 seizures and slept 9 of those hours.  There was no time to squeeze in any attempt at physical therapy.  I will take a guess that her day today will be similar, but she will be up for the challenge in true Sonzee fashion.  She is her absolute best even with the CDKL5 mutation she was allotted and I will continue to tell myself I am also.

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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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Never ending with GI....

If you have been following Sonzee’s journey for a while now then you are probably aware that her biggest battle has always been her gastrointestinal system.  Since she was six months old she has battled with gaining weight and from trying to solve that issue we found ourselves on a downward spiral in the land of GI.  We started by having a gtube placed, thinking that would solve the problem, but we all know that did nothing to help.  From that point onward it has been a constant battle of trying to keep her health and keep her comfortable, lately, both I feel we are failing with.

When she hit rock bottom last May we had no choice but to start her on TPN (Total parenteral nutrition: Intravenous feeding that provides patients with all the fluid and the essential nutrients they need when they are unable to tolerate anything into their stomach/gut).  We transitioned from TPN to intestinal feeds that went through an NJ (naso-jejunum-from her nose into her intestines).  A lot of people assumed her tube in her nose was going into her stomach, but it was actually bypassing her stomach and going into the 2^nd part of her intestines.  The thought or hope (if you will) was that her stomach would miraculously turn back on and we could get her off the intestinal feeds.  A year later and this has proven to not be the case (I am honestly not the least bit surprised).  When she was finally big enough, we had the NJ removed and they added in an extension to her stomach tube, which is what she has now, and it is a GJ tube (goes to both stomach and intestine).  We only use her intestinal port except to open the stomach side to let out excessive air in the hopes it will make her more comfortable.

She has had various tests performed on her GI system, besides showing she has extremely slow motility (movement of her stomach and intestines as far as processing food and moving it through the system), they all always come back “normal”.  She has spent most her days over the last year miserable, in pain, and uncomfortable from her feeds.  We cannot turn them off because she needs to keep hydration, we cannot run them any slower because she needs to keep hydration.  We are stuck, grid locked by the way her body interprets typical bodily functions such as gas, digestion, and bowel movements.  She was diagnosed back in November with visceral hyperalgesia, which is the term used to describe the experience of pain within the inner organs (viscera) at a level that is more intense than normal.  A diagnosis that gets her nowhere but to take another medication that does nothing to relieve her symptoms. 

I have reached my breaking point with these GI issues.  Her doctors tell me they have done everything they can do.  I agree that they have tested plenty, but I do not agree that there is not some option out there that would be a better answer for her.  We have an appointment with her palliative care doctor next week because her quality of life is far more important to me than the quantity.  She CANNOT be this miserable any longer.  It is beyond disheartening to watch her suffer daily.  There must be some solution besides “dealing with it” and another medication that only appears to be a solution but in reality, does nothing long term.  I am hanging onto a small thin thread of hope that we will reach some sort of resolve next week, whatever it may be…but let me tell you, after the past two years it’s really challenging to believe we will find a winning solution.

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Will it go away?

We spent two days this week at children's hospital of Colorado because they have a center of excellence for Rett Syndrome, CDKL5, and FOXG1.  This was our second time taking Sonzee and I am glad we went.  We learned some new facts that we had not known prior to this visit, for example, Sonzee has a 5% chance of being seizure free in her life (but realistically it's less than 1%), and if she learns to sit by age 3 she will be more likely to walk.  Neither is to say she couldn't ever be seizure free or learn walk even if she isn't sitting within the year or a miracle happens with her seizure control, but the odds begin to stack against her as time goes on.  Luckily for all of us I never planned on seizure freedom for life for her and my main goal is only for her to sit, so even if it happens when she is 10 that would be okay by me.

Parts of this life are getting more challenging to process.  Everywhere I look I see typical 2 year olds, and I can't stop wondering what Sonzee would be like.  Even looking at the other children with CDKL5 mutations I can't help but feel like Sonzee was given the short end of the stick.  I wish she was at least happy and smiley, but she's constantly miserable and in pain.  I'm so worn down from it.  It's one thing to have a child not complete milestones, that in and of itself is devastating, but tack on a stomach with dismotility, feeding into the intestines, constant GI pains, and unhappiness, and that's the life of Sonzee.   

I'm having a hard time with the tube being gone from her face and it has only been 9 hours.  It was my safety net while out in public, it was how I coped with her not being a typical toddler...now it's hidden.  It will only be revealed by the question of "how old is your baby?"...I keep playing with the blue stroller=wheelchair placard I have to make sure it's clearly visible to strangers. I keep placing her feeding tube extension in a location that is noticeable.  I don't like this.  I feel like too much is changing, but not anything is changing and it all makes me feel like things are spiraling out of control.  I'm feeling like I have completely failed her in all areas and I wonder if that feeling will ever really go away...

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Pit

I knew I would find myself here again.  The place where only the 5-character string of CDKL5 can take me.  Sitting here with a pit lodged in my stomach and the tears in waiting.  I have been here before, yet every time I take a break and come back...I am always amazed at how new and fresh the sting is.  It almost feels like it is the first time all over again.  The same feelings flood through me; panic, sadness, anger, emptiness, hopelessness, anxiousness...etc.  I honestly would think that by now I would have developed some personal coping mechanism so I could avoid these days, guess I am not as talented as I had hoped.

Her seizures continue to get worse.  The fact that her epileptologist is amazing and reassured me that what we are seeing are not Infantile Spasms again, is doing NOTHING to comfort me.  I am praying this is not one of those times that my gut is going to win.  I am hoping that it is just the unknown that has me on edge.  I am begging G-d that this WILL be the time I am finally incorrect with my feelings.  It is eventually bound to happen; people cannot bat 1000 forever...or really at all.  I really want to be wrong, but I know something isn't the way it should be.  Yet being wrong would not do much to comfort me either, because either way she is seizing more than I would like.  Why has no one found a cure?

She has a seizure disorder, I GET IT.  I do not want her medicated to oblivion because she has a SEIZURE DISORDER.  Seizures are part of her and I am OK with that, because I know it is a complete crapshoot to get any form of control for her.  I am not even asking for complete control, but just some relief.  A chance for her to at least live a little, to get something out of her days, to simply relax.  Because her days right now...well they just cannot continue this way.  She sleeps, she seizes, she sleeps some more.  Thankfully she has the feeding tube so I have one less stress to harp on, but why is she seizing?  What am I missing?       

I knew toddler years would be a living hell, and not because of the "terrible twos", or "threenager" experiences.  Oh how I would give anything for her to be extra sassy and dramatic in a much less scary manner, I promise I wouldn't take it for granted and I would soak everything all in.  To be honest, I am just praying she makes it out of this stage alive, and in this case, those words are to be taken literally.  There has to be something I can do.  After all, isn't this my job as a mom?  I am supposed to be her protector and keep her safe.  I can tell you one thing, CDKL5 brings on an entirely new meaning for the term "parenting fail", and it is not one that ends with "hahaha".  I know that all I can do is my best, and I know I am doing just that, but finding myself up against a beast of a challenge such as CDKL5, well that does not hold an ounce of water.  

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Too Busy

There are many things that really suck when you have a child with special needs; dealing with developmental delays, making medical decisions, the emotional toll of pretty much every situation that occurs, and the list continues on and on and on.  However, I have found a new low as I continue on this journey.  A new pain experienced that hurts like nothing I have dealt with before.  A feeling that brings tears to my eyes with only a simple thought.  A situation I have tried to avoid since the very beginning and clearly like many other battles being fought along this journey I have been unsuccessful.  

"It's okay, Ema is too busy"

The words spoken by my 6 year old to my mother at dance when she could not get a hold of me on FaceTime so I could see her new dance outfit.  The words that are so untrue as it was just a bad connection and I had to disconnect from the hospital Wi-Fi in order for my phone to work.  The words that carry so much more weight and so much disappointment that my heart is torn into two pieces.  The words the express the pain of an older sibling trying to cope with an experience that no sibling and especially no child should have to endure.  

There used to be a time when days were not filled with constant talk of all things CDKL5.  When that combination of characters was not spoken in our home.  There once was a time when my 6 year old did not ask about G-tubes, NJ-tubes, and IVs.  When she did not draw pictures of four children and explain that the reason she drew Sonzee standing is that “when she is two she will be able to walk”.  There used to be a time when our plans were not contingent on a child with special needs.  A time when our 6 year old didn't have to wonder if it would be Sam or myself picking her up from school, going to her events, and/or spending the night at home.  There used to be a time when we were not a family who was constantly divided.  

This hospitalization has rocked us to the core and it continues to go on.  Apparently, there are some areas of personal growth I clearly cannot master without spending weeks in the hospital watching my baby girl physically suffer and the older kids emotionally suffer.  I guess there is still something to be positively gained from an experience that I will not ever understand.  I do not even know that understanding the situation would even matter.  A year ago I honestly did not ask G-d "Why me?"  On days like today, I am vulnerable to those types of thoughts.  

I wish I could clone myself and be at home and in the hospital simultaneously.  Even though ¾ of my children “do not need” me in the same way Sonzee does, ALL four of them need me as well as I need all four of my children.  My heart hurts thinking of the pain Sonzee’s siblings are experiencing and knowing that there are limitations to how I can fix it.  The worst part of it all is that it is a stark reminder that even though I am trying my best, sometimes my best is just not good enough.  

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Dealing with "It"

I am currently riding at the bottom of the coaster.  The part right after the steep drop and right before the track begins to quickly twist and turn, and you find yourself unsure which way is up or down and where exactly you are in relation to the start and finish.  The part where you take a second to regain focus and grip tighter on the harness because your stomach is in knots and you aren't quite sure what you are feeling or thinking.  The part where your mind is almost blank because even that is disoriented and needing a moment to find itself.  It is safe to say I do not like this portion of the coaster at all.  In fact, if the coaster could stop so I could walk to the emergency exit it would be greatly appreciated.

This part of the coaster in relation to this journey is one that today I would say I dislike the most.  The part brings on doubts, clouds my judgement, blurs the future, and makes me one hot emotional mess.  The type of mess that really doesn’t care if I am out in public with visible red eyes, dark circles, and others might be made to feel awkward when they look at me because they can see the pain on my face and tears in my eyes.  It’s the part of the journey where the words “I don’t know how you do it” make me think in my head and want to say aloud, “It’s all a façade, if you ask me something specific I am going to hysterically cry right in front of you and you’ll see I am not doing “it” at all”.

Let us have a moment of pure unfiltered honesty.  “It” sucks.  “It” hurts.  “It” is awful.  I would not wish “It” on my worst enemy.  “It” is so indescribably difficult.  I wish “It” would not leave me feeling empty, guilty, or unsure.  I wish “It” would not cause me to doubt every decision we have made or cast a shadow of doubt over the past, present, and future situations.  I wish “It” did not result in some unfair decision that ultimately came down to choosing the “best of the worst”.  I wish I was not having to deal with “It”.

It has been 15 months since Sonzee came into our family.  I wish I could say that we had blissful moments as a family of six that were rudely interrupted by seizures, doctors, and illness, but that is not the case.  20 minutes after she was born we were thrown into “It”.  15 months of facing the most challenging experience of my life.  15 months of continuous unknowns.  15 months filled with more ups and downs than a person should have to psychologically deal with in one lifetime.  The very worst part of “It” is that I do not want “It” to ever end.  

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Failure

It goes without saying that parenting in general is not easy.  It also goes without saying that being a special needs parent is a completely different experience.  Where I feel I slack in parenting my typical kiddos it does not feel as disastrous as the areas I feel I may slack with Sonzee.  With my typical kiddos I am confident that the decisions I make for them (whether my kids are happy in the moment or not) are not going to cause them to need any additional mental therapy to what they'll require as adults just being products of Sam's and mine :-).  When it comes to Sonzee, it is ALL different.

This morning I started feeling bummed about the bear's desire (or lack thereof) to participate and engage in activities to help with her development.  Sam and I decided awhile back that we would follow her lead and if she was not going to be on board, we were not going to force her.  We have truly been embracing the concept of celebrating her daily presence more than what her physical capabilities are.  I have been content because she has been content.  This morning however was one of those mornings where I was derailed.  I saw another child who has a CDKL5 mutation do things I can only dream Sonzee to be able to do.  Naturally, I immediately took the bear and started trying to make her to do things that she is just not ready for.  I will summarize the outcome for you; it led to both of us in tears and me sending Sam a text of frustration.

Sam and I do not always see eye to eye.  Half the time I do not even feel like he gets what predicament I am in spending all day every day with her with little to no break.  Then there is a day like today where dare I say, my knight in shining armor (please don't let this go to your head) came home, walked up to me with his arms open for a hug and said "We broke a rule.  We are not supposed to compare her to other kiddos with CDKL5; it is not fair to her.  I know you are upset over what Sonzee is not doing.  I thought we decided we were going to just enjoy her, because the truth is Randi, we do not know how long she will be here.  I know you are frustrated, she is frustrated.  You are not a failure."

The tears welled up in my eyes.  Right there, those words, my EXACT feelings neatly packaged into one five-word phrase.  YOU ARE NOT A FAILURE.  What is it that makes us as parents immediately feel it is our fault if our kids do not do something?  Why do we so critically judge and question our parenting based on singular circumstances?  Why is it we immediately accuse ourselves of not doing enough?  

I have to really start to believe that it is NOT me.  I am doing everything I can for this little girl, and the truth is it may not be enough because I cannot give her a healthy CDKL5 gene, but that is out of my capabilities.  I am doing the BEST I can, the BEST for her, the BEST in this situation.  Whether she is unable to sit on her own, whether she is unable to crawl or walk, or whether she is never able to sing and dance, none of those things will be the result of my failure as a mother.

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