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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Grounded.

I have to remind myself to keep my feet on the ground, to only have tunnel vision.  19 months in and I know these feelings all too well.  It starts subtly and with some doubt, then the casual question between Sam and myself of "did you see that?", " what do you think?", "did you get it on video?".  We ignored the first questionable movements, but slowly the doubt becomes less and the panic starts to over take my mind.  What do we do? What's our next line of defense?  Do I email her epileptologist?

Ever since the varicella (chicken pox) vaccine her 39 day streak of seizure freedom was derailed.  I anticipated this would be the case, but as usual, I had some hope.  (I find the fact that I continue to use that word almost comical).  It started with some quick shakes (myoclonic seizures?) we originally wrote them off, and then a flashback of her first PEMU stay haunted my mind.  We have been doing the most slow wean of Keppra known to man kind (8 weeks), so after multiple shakes, I convinced Sam to go back to her previously weaned dose.  It worked, the shakes stopped.  I guess that solved that mystery.

But having CDKL5 isn't that easy.  Things can't be fixed so simply...at least not in our experience and certainly not for the bear.  So we plugged up one hole in the hose and then another leak sprung.   Now we are seeing the quick eye roll, the questionable head drop...the panic sets in, it's honestly suffocating.  It makes me want to get any drug to make them go away.  Then I take a step back, I go back into the tunnel...I remind myself she has a neurological disorder and she will always have odd movements, and her seizures are "refractory", after awhile they don't respond to medications...there really is nothing we can do.  Why am I panicking? The panic does nothing and there isn't any miracle at this moment either. 

So I need to find the floor and ground myself. I need to take a deep breath and let this unfold the way it's meant to.  I have to remind myself that there is no quick fix (or fix in general for that matter) and there (may) never will be.  It will always be trial and error and the sand will always fill the other side of the hour glass, but after it gets turned back over, we never know how long it will take for it to run out again and who knows, maybe one day a grain of rice will clog the path.

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Pity

We are all guilty of thinking it.  We are all guilty of feeling it.  When we find out someone's child was diagnosed with cancer, or when someone has a family member who has died, its essence surrounds us.  When we learn a child is diagnosed with an incurable disease, we all immediately think "How horrible", "I can't even imagine", "So awful", the list goes on and on, and so does the overwhelming sense of pity.

Pity: "the feeling of sorrow and compassion caused by the suffering and misfortunes of others"

I have a whole new relationship with these words.  It frustrates me in a way that I have never felt, but I am sure I am not alone.  I feel upset with myself for letting such a small word take me over and make a huge impact.  A negative impact at that. I feel so badly for all of those times I myself gave way to that feeling when I met someone who had a child or family member who was experiencing a less than perfect situation.  Now I am the person and family member on the receiving end.  I hate to impose my emotions on others, but many of us (if not all?) who find ourselves in a position listed above, or any other position that others might feel warrants this emotion....do not want or need your pity.

I can spot the look from across the room when a persons glance lingers a second longer.  I can feel it in the air when someone walks over to the stroller and attempts to interact with my daughter who does not even acknowledge this persons presence.  I can read it on the faces of the stranger who overhears my conversations with others as the conversation shifts to talks of seizures and development.  It is all around me and it is impossible to escape.

I understand the situation can become uncomfortable fairly quickly when someone realizes that Sonzee has epilepsy, a developmental delay, and is unable to eat by mouth.  Yes, it absolutely sucks that this was all caused by a random de novo, no one person is responsible type of genetic mutation.  I know the typical response is the stoned face expression followed by various questions about whether the seizures can be cured or if she will grow up to have the same cognitive abilities as typical children.  I can handle the conversational dialogue and in fact I encourage questions and love to talk about everything CDKL5.  But please hold the pity.

Awareness.  That is what I hope to impart on others.  I want others to learn that people are different for various reasons, and a good majority of the time it occurs due to random circumstances.  I want others to not feel embarrassed to ask why Sonzee has a sticker holding a tube on her face.  I want someone to question why I am unfolding a stroller from the trunk of my car that is parked in a handicapped parking space.  I want people to ask why I have a light up blinking toy in the water at her swim class.  I want to provide education.  I do not want people to assume anything.

What I really do not ever want is for others to feel sorry for me, for Sonzee, or for our family.  There is no reason to feel this way.  Everyone has challenges and misfortunes in their lives.  No one is exempt from tragedy.  Yes, the circumstances are unfortunate, and I wish my daughter was a typical almost 20 month old toddler capable of doing typical 20 month old toddler activities, but that is not the case.  Please do not ever feel sorry for us.  Please continue to ask questions, tell Sonzee's story, offer support and a shoulder to cry on when the days get overbearing, and do your best to be there to celebrate with us when the days are amazing.

Guilt.

I watched another great episode of the new show "Speechless" on ABC last night.  Regardless if your child has special needs, I highly recommend the show because it is really funny.  Last nights episode really resonated with me because it was about the guilt a family might feel while participating in an event when their special needs child is not there or unable to do so.  (Even if your child does not have special needs I think feeling guilt as a parent is quite common).

I remember during one of Sonzee's hospitalizations last spring that it was during the Jewish holiday of Purim.  For those of you who have never heard of this holiday, I will quickly define it as a Jewish Hallowen.  Children dress up in costumes, there is a party, a carnival, face painting, etc.  I debated not going to our synagogues party because I would have to leave Sonzee (guilt), but then I was faced with the reality that as usual, Sonzee's unplanned hospital stay was taking away from the other kids having me (guilt).  The kids wanted me to be there and I wanted to see both of the girls dressed as rainbow dash and our son as spiderman.  So I went.

As I sat in the parking lot of the synagogue I started to cry.  Sonzee wasn't there, we were a broken family as my heart was in 2 different places and it sucked.  This was not the first holiday that our family unit was separated, and I doubt it will be the last, but not matter how many times it will happen, the pain will still be the same.  In the end, we all had a great time (guilt) and I am so glad I was there for the kids, for Sam, for myself.  When I got back to the hospital Sonzee was enjoying her time sleeping away and didn't even notice my absence (a smidgen of guilt faded away).  That did make me feel better, however as a special needs parent there will always be a constant battle between the forces of guilt.

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When panic sets in

I was sitting at home this morning when the text message alert came through my phone.  It was from a close friend of mine.  Someone who I have gotten increasingly close with over the past 9 months, as our daughter's both have a CDKL5 mutation.  Our daughters' like all of the children affected by this merciless string of characters, vary greatly in skills and overall path they follow, yet as parents it always boils down to us having the same emotions and a level of understanding that only other mom's and dad's on this journey can relate to.   There was an urgency and panic in her text that was palpable even though texts can sometimes leave the reader uncertain, there was no uncertainty.   CDKL5 has a way about itself, it can take a child who is doing absolutely amazing (in the world of CDKL5) to death or close to it in a matter of moments, imminently without a warning.  How are we as parents supposed to cope?

It has become crystal clear in my 18 months as a member of the parent support group that it only takes a second for our world to be turned upside down.  For us specifically, I don't even need the parent reports of fellow CDKL5 siblings to know this, we HAVE lived this ourselves.  There is always a balance of celebration at the attainment of a "Sonzee-stone" along with potential fear of the skills loss.  The knowledge that the skills our children with a CDKL5 mutation achieve are not theirs to keep forever is sadly our reality, but yet there is always hope.  The hope of maintaining seizure control for as long as possible mixed with the reality of "refractory epilepsy" as a symptom of CDKL5 mutations.  The fear that even though our children might have a brief stint at seizure freedom, it only requires one to take their life.  It's suffocating.  It's heartbreaking.  It's impossible to live with, yet we have no choice.

My advice to my friend is obvious, "Don't focus on what might happen, just enjoy everything she is doing now".  I should really smack myself for even writing those words, I would internally roll my eyes at someone who would suggest that to me, and truthfully, I don't believe in these words myself.  There is no way to live this life without fear, yet there is no way to live with it.  Either way there is no winning.  Living in the moment, that is what all of us affected by CDKL5 or a similar type of genetic mutation or terminal illness must do; and we do just that each and every day.  Some days are easier than others.  There are days where the thoughts of the future leave us scared, numb, and paralyzed.  Then there are days where we just focus on the here and now because that is the only way to breathe.

There is no preparation to do once your child receives a diagnosis such as CDKL5.  There is no way to every fully accept everything that will be thrown our way.  I used to wonder if I would rather Sonzee never have seizure control and never gain skills because then I wouldn't have to worry about the day the seizures return or the day the skills disappear.  Our days of seizure freedom might not be as long as other children, and the goals Sonzee attains might not be as advanced or last as long, but I wouldn't give up the 52 days (non-consecutively) of her life she hasn't had to suffer at the hands of a seizure.  No matter what the future holds I have documented a ridiculous supply of pictures and videos to help me through whatever dark days might be ahead, and I will look at them with a huge smile on my face remembering just how happy she was during those moments.

And that is what gets me through the days when panic sets in.


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Resilience

"All this stuff...other people's opinions.  It's nothing, you know what's not nothing?  When a Dr tells you there is something wrong with your kid.  All the things he is never gonna do, and it's a nice long list....so now when something happens, it's like "what else you got?  Bring it on.  I get it.  Normal seems good, but guess what?  We're not normal.  We're better, we're...bulletproof."  -Jimmy DiMeo (Speechless TV Show)


I feel like once you enter into the unknown and you begin your special needs journey it feels like one constant uphill battle.  There might be small spots to sit and catch your breath, but as a special needs parent there really is nothing that comes easy.  It wasn't until last week at the weekly parent support group I attend that it became clear that if you asked me one word to describe a special needs family it would be "resilient".

The new television show "speechless" to me is a blend of Parenthood meeting Modern Family with a special needs child component.  The writers are witty,  full of heart and from what I have read, one of them is a father who has a child with "Pitt-Hopkins".  Another rare disease that has no known cure, with similar symptoms of CDKL5, and one I was just introduced to a couple of weeks ago when Sonzee made a new friend.  

I have watched the clip including the quote on the top of this post 30 times at a minimum.  My eyes filled with tears and yet my heart full of happiness simultaneously.  I guess a summary of my experience this far.  I think the notion that special needs families are bulletproof holds some truth, but at the same time I am torn because I think there are times that the bullets penetrate and even after recovery things will never be the same.  The fact is, the bullets just keep flying. 

There is something to be said about the resilience of special needs families.  That's not to say that if your family isn't in this world that you are exempt from struggles or trials.  It is just a special needs parent develops a hard shell like a turtle yet with the elasticity of a rubber band.  Many things are thrown at us, some make a dent, but a lot of it we just send flying right back.  We are a special blend of warrior and human combined...and our lives are far from normal.  Sometimes it would be easier to go back to the way things were prior to having a special child, but then I wouldn't  have the understanding of resilience that I do now. 

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10%

Almost 18 months ago, our little Sonzee bear opened our world to all things CDKL5.  While approximately 90% of our exposure has been dreary, depressing, heart and gut wrenching, stressful, scary, and undesirable, there have been times along the way (10%ish) that have brought such extreme positive emotions that they are difficult to express.  Others who are on a parallel journey to ours with CDKL5 or another medical challenge might agree with me.

As you embark on this new life in a direction that was completely unexpected from anything you could have ever fathomed, the outside world starts to close in around you.  I hope that you have fantastic support from friends and family, but to be honest, there is no way they can truly understand your position.  They can offer you an ear to listen, a hug when you need it, and words of encouragement, but nothing replaces the support and camaraderie you find in the parents that are journeying right along with you.

Sam and I have both formed many online relationships with the parents we have "met" in our online CDKL5 support group.  We have both been lucky enough to meet different moms and dads over the past year and a half.  Similar to being a mom in general and having friends who are mom's "who get it", I cannot imagine being on this journey without having at least one other parent who truly understands what it is like to be in our situation.  Of course just like parenting in general, there are variations to each child's story, but to have others who have been faced with having to make similar decisions, makes the impossible bearable.  

I am so fortunate to each and every person who is on this journey with us, whether you are friend, or family, whether you live near or far, regardless if we have ever met in person or I see you often.  However, there will always be a special unbreakable bond with all of you who are in this journey because your child has a CDKL5 mutation and to all of you, thank you for making 10% of this journey absolutely incredible.

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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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Waiting room thoughts

Today I found myself in one those situations that my brain has not figured out exactly what to make of.  I finally took Sonzee in for her long overdue well visit.  She has been in many times since June for shots, sick visits, and sometimes just because I feel it has been too long since we have seen her pediatrician, but not necessarily for a "well visit".  We are so far behind on her well visits and vaccinations that the form listed this as her "15 month" well check.  Just so we are all on the same page this should have in fact been a delayed "18-month" visit because she is actually 19 months old.  

As I sat in the waiting room, to our left was a baby girl who looked like she was in for her 6-month well visit, and to our right was a brand new hot off the presses baby who was probably in her car seat for the second time since birth.  I looked back and forth between these two babies and of course at Sonzee who was repeatedly trying to remove her tube from her nose, again, for the 100th time.  Depending on which baby I looked at, different thoughts entered into my mind.  

As I looked at the 6 month old I had the biggest grin on my face because she was so cute trying to eat one of those pages from the "can't rip, can't be destroyed" paperback book collection that my children did managed to actually destroy.  She was so excited as she intently looked at the book trying to figure out a way to be successful in her various attempts to complete her mission.  My thoughts started to say, "Phew, at 6 months these parents would know, this baby does not have CDKL5".

To my right, this little baby girl sat snugly in her infant car seat.  She was so much smaller than the seat; it looked as if the seat was swallowing her up.  Her head tilted to the left and she would periodically open her eyes and look around.  She looked so sweet and so perfect.  As I looked at her all my mind could think was, "when Sonzee was that old, we had no idea".  I noticed her parents looking at Sonzee each time I readjusted her tube.  I am completely speculating, but I can bet that at least one of their thoughts wondered why Sonzee had the tube in her nose.  I know I have been guilty in the past of seeing a child and wondering about them and secretly fearful if my child would be in a similar situation.  (I am sure that is not at all surprising about me).  For these parents, if they had asked me, (although rare) this isn't even something I could reassure them wouldn't be the case at their daughter's age.

There was no part of me that felt envious or jealous of those babies.  There was no part of me that was saddened by our situation at all.  I know that means I have changed so much since our little bear’s diagnosis.  I honestly do not know what to make of my thoughts, if there is anything to make of them at all.  I hope the parents of both of those girls celebrate each and every little milestone they make as they grow and develop.  I hope and pray that neither of those babies have any type of genetic mutations in their bodies and they can grow up living happy and healthy lives.  I hope for Sonzee that she continues to bring a smile to my face with her sassy shenanigans, amazing wide mouth numerous tooth grin, and her cutesy personality.  But something I do wonder about, is if there will ever be a time that I will look at things without "pre or post diagnosis" thoughts.

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3am

It is 3:00am and little bear and I are awake.  Lately this has become our middle of the night routine, although the time varies.  Tonight it has been since 2:19am that I heard her breathing change and she made a noise, the type that makes me second-guess her seizure freedom so I run to her crib.  False alarm, little bear is only participating in one of the other fun-filled side effects of having a CDKL5 mutation, sleep disturbances/all night parties.

I put on her red ladybug starlight figuring that since she is awake she might as well take full advantage and work on her vision (and hoping) this will keep her from wanting me.  The time passes and her breathing changes, I of course get up every time (reluctantly because I am scared each time will reveal that in fact she is seizing) and each time (thankfully) she is just chewing on her fingers or sucking her thumb.  Regardless of how many times this continues I cannot seem to shake away the worry and feeling from the pit of my stomach.

As usual in our house both of her sisters seem to be woven into her and of course it has turned into a full on party with little girls calling for us or wanting to cuddle.  (Thank g-d little man loves his sleep far too much to join in).  I have gotten all three back into their respective beds, but I know for sure I will not be back asleep anytime soon.  It is 3:11am, little bear has now kicked off her blankets, and she wants me to put them back on.  I tuck her in (again), give her head a rub, and a kiss, and turn off her ladybug light telling her it is sleepy time.  She literally chuckles at me, makes a little protest, but obliges.

Back in my bed I listen to her breathe.  I know no matter how content and quiet she is I honestly will not fall back asleep until she does.  As if sitting here awake will change whether she has a seizure or not.  I have decided that no matter how long this streak continues, the further in we get, the worse the heartache will be when it is over.  I have tried to create ways to protect my heart, but I know there is not anything I can do to cushion the potential blow.  It is 3:17am; she is not showing any signs of wanting to resume her slumber, despite her bodies attempt to let her know by yawning that maybe sleep would be a fantastic idea.

The worst part about her middle of the night shenanigans is my mind has nothing to do but run wild and free, and it is exhausted so you can only imagine the places it goes.  The silence is a conniving place, you would think it would bring about peace and contentment, but after almost an hour, I have still not recovered from the initial panic and fear her wake up brought me.  It is now 3:27am, every so often, she starts to talk or she gets ultra-excited and starts to kick her feet, I would love to know what she is thinking.  One thing is for sure it has nothing to do with going back to sleep.