Monday, October 15, 2018

So it begins....

Literally every year since we have been part of the CDKL5 family fall has become a season I have grown to loathe almost as much as all of the challenges mutations of CDKL5 bring to every family affected.  It is with the changing colors of leaves (in every other place besides Arizona and Florida), with the breezier air, and with the near end but almost strongest hurricanes of the season, that our tiny little family is reminded of just how relentless CDKL5 mutations can be.  Fall is when we all get the friendly reminder that is never very far from our minds; that our children can be taken from us quickly, without warning, and with no real justification as to why they had to suffer or have challenges in the first place.

Yesterday Sonzee had a miserable morning and afternoon, until we placed her into her spa.  Our happy little bear returned.  She swam with her big siblings, Auntie A, and her dad, while baby brother took a bottle, and I took in the gallons of water being splashed out of the spa while attempting to try and take pictures.  After we all got out I signed into Facebook to post about the fun she had and instead what I opened was post after post asking for prayers for one of Sonzee's CDKL5 brother's family because he had passed away.  Immediately, my heart broke, and sharing the afternoon of smiles did not seem very appropriate.

STRONGLY DISLIKE everything about life with CDKL5.  I HATE that my other children must grow up knowing and worrying about seizures, GJ tubes, surgeries, hospitals, therapies, a sick sister, medications, and everything else that CDKL5 has taught them.  I absolutely LOATHE parenting a child who has a CDKL5 mutation because I find it hard to believe there could be anything worse than watching your child suffer his/her entire life and knowing that you will eventually be burying them.  

There is no escape.  There is only the false sense of security brought to you by better days and healthy moments, along with the denial that it will not happen to your child, paired with the fact that they have already (somehow) made it out of the most unlikely situations a time or two before, so of course he/she always will.  It is the comfort in seizure alerts and oxygen/heart rate machines while he or she sleeps at night because naturally when you are alerted you "will be able to intervene".  The panic, the fear, the uncertainty, it never really was gone from any of our minds no matter that we did not post any messages asking for thoughts and prayers to a CDKL5 family, but now that we are settling into fall, so it begins again.


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Friday, October 12, 2018

Unexplainable joy

One of the greatest joys of being a parent is watching your child participate in something he/she loves and be able to express that love in an outward manner complete with giggles, a grin as wide as the width of his or her face, and an invisible aura that radiates from the soul.  If you are not a parent, I am sure you have at least experienced seeing a child engage in an activity that resulted in obvious happiness that it was contagious enough to enlighten your mood.  There are very few "life of a medically complex special needs parent" experiences that I feel I am lucky to experience, yet if you have never met a child who has difficulty outwardly expressing his or her emotions and then you witness him/her outwardly display joy, there is really little justice with words that can explain the affect it has.  It is one of those "you have to experience yourself" types of situations.

Over the past 3 years and 8 months there has not been one smile, peaceful or calm day, seizure free period, pain free time that has been taken for granted.  Every time our family is blessed with an obvious joyful day for Sonzee it is felt by everyone.  I personally can feel the happiness course through my blood and down to my bones.  It brings chills and tears to my eyes.  I have to fight the tears the same way I do when I am overwhelmed by negative emotions.  It is as if my brain does not know how to correctly process the information, I go into system overload.


I am sitting here tonight re watching the videos and pictures I have taken over the past 3 days of Sonzee in her Make-A-Wish spa and the tears are hard to hold back.  So many emotions wash over me.  Besides the obvious momentary bliss and joy being in the water brings to her, it is validation, we did it...we understand her...we did something right...we have not completely failed her...we can help her be happy.  I will not ever be able to adequately express how much of a positive impact this 2400-gallon rectangle of water has brought to this house, our family, and our little bear.  We will forever be grateful to Make-A-Wish and everyone in Arizona who made this possible.  This momma might actually get some sound sleep for the first time in 3 years and 8 months...


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Wednesday, October 10, 2018

weight

It is midnight.

My eyelids are beyond heavy and my eyes are blurry and dry, but as usual I am awake to welcome in the new day as the date changes on my watch.  My stomach feels a bit off and it is not any sort of stomach bug or illness.  My mind is a thought away from sending my eyes a memo that a flood is incoming and my chest a second away from skipping a beat.  I have been hitting refresh on one of Sonzee's CDKL5 sister's mom's Facebook page.  I hate this game.

Waiting is the worst part.  I try to tell myself no news is good news, it is the truth, right?  After all, it has been 10 hours since she last posted, and every other tag of her name on her profile page is her original post tagged, so I am sticking with my original thought.  The alternative is just too much.  I have lost count of how many of our CDKL5 siblings have been lost this year and it makes my heart feel excruciatingly heavy.


Today is one of those days that makes CDKL5 feel suffocating and inescapable.  I replay in my mind and on my camera images of Sonzee smiling in her spa during her first swim.  While the images bring me immense joy, the reality behind why there is an aquatic training vessel in my backyard and the organization that gifted it to us, paired with her CDKL5 sister in the ICU makes me want to run towards the trash can and then afterward partake in some ugly crying.  There are certainly times that the weight of this life is just beyond any earthly comprehension and I can tell you 12:40am is one of those times...

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Monday, October 8, 2018

Light


One of the most important lessons I have learned while being part of Sonya's story is that moment to moment everything can change and without warning.  One minute we were celebrating seizure freedom and the next we had the seizure tracker app opened and the timer ticking by.  One minute we were trying to give her a little taste of ice cream or frosting and the next we were changing her clothing and cleaning up the mess brought on by a miniscule amount of food.  One minute we were relishing the fact that she was able to roll from side to tummy, and the next we had to worry about potential bone she could be fracturing.  Trying to keep the imaginary see-saw of positive and less desirable balanced is a skill we have not yet mastered, yet we continually strive for.

As we near on two weeks since our 10 days in the hospital I am slowly coming closer to crawling out of the hole I fell into.  Every day home is another day our family gets to rebuild.  It is another day we can make memories together and another day we can attempt to celebrate the successes, whether big or small for each specific moment that occurs.  The further we get from day #1 of admission is another day to reflect on something potentially positive that is happening, which is honestly a daily struggle for me, but I do try.  I have to constantly fight within my mind to focus on happy thoughts and push away the ones that ultimately bring on fear, panic, and anxiety.  Then the rain came this past week to Phoenix.

Heavy downpours came from the sky, roads were flooded, debris was scattered into the streets and then just as fast as the storms came in, they passed.  They left behind floods in some areas, but overall, the sun came out and light blue sky returned along with 65-70-degree weather.  Then today, Sonzee smiled.  The breeze hit her face as I placed her into her wheelchair while I took her out of the house for her first activity since September 16 and our little bear smiled.  She smiled throughout the entire 2 hours she was with her (best) buddy Emma and she smiled when she came home.  Today was just another reminder that the storms will undoubtedly be back, but the image of her quirky little grin while holding her pacifier in her mouth will make the next one a little more bearable.

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Thursday, October 4, 2018

Recovery

It has been one week and a day and a half since we have been back home.  It seems that every time this chapter repeats, the recovery is always different and becomes more difficult.  I wish I knew why.  Maybe because the reasons behind the initial admission are rarely ever the same.  Maybe it is because the situation, and life surrounded with the complexities of CDKL5 in general effects every family member in a different way.  Maybe it is just because we are all exhausted from everything that is constantly thrown our way.  I can throw out my guesses from now until I am blue in the face, but odds are the reason will just be added to my never ending list of things I won't ever understand and lengthy list of "we won't ever know why".

These situations literally drain the life out of my body and take me weeks, really months, to truthfully be back to okay, or whatever okay has even become over the last 3 years and 7.5 months.  It is usually just enough time for another floor to be pulled out from under us so we can start sliding down into the dark CDKL5 abyss.  This past week after my rock bottom moment Sam reminded me that if I am feeling overwhelmed then odds are everyone in the house is feeling it too because this life is not normal.  It is true, nothing about any of the situations we find ourselves in when it comes to Sonzee and her life is normal.  None of them are fair and none of them do or ever will make any semblance of sense.

Yet here we are again playing the same game but with different specifics.  The all too familiar chaos that unearths another consideration, another complication, another source of suffering for Sonzee, and another bout of muddy clarity for the rest of us.  I wish I really knew what all of these hospitalizations and inconsistent crazy home life was doing for Sonzee's siblings.  I wish I really knew and was able to truly understand what Sonzee's perspective and overall desires over everything were.  Are we still making the correct decisions and are they the ones she really wants?  Most importantly, will we ever truly know the truth to that last one and what would we do if she disagreed?

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Wednesday, September 26, 2018

Hollow

It's Monday night and I am finding myself in a situation I know all too well.  Around 3:30pm they transferred her from our past weeks residence of 8118 to PEMU room 8138, to get a behind the scenes look at her seizures.  I have now spent the past 4 hours hitting buttons and documenting potential activity.  The familiarity and absurdity of this life rerun catches me after the last button pressing.  She has been whimpering for 20 minutes now, almost an ironclad confirmation that the reason I hit the button was validated, I will know for certain in 12-14 hours.  As I look into her blue/green eyes they taunt me; that was stupidly the wish I made the whole time I was pregnant, "please let me have another blueish eyed baby".  I see the glossiness in her eyes as she whimpers and the emotions build behind mine. 

I don't understand.  I really do not think I ever will.  Why her?  Why me? Why us?  We should be home with her siblings, with Sam, in our house.  I should not have to be here alone during another holiday.  It hasn't even felt like one to be honest.  Since Saturday I have read more than 500 pages of a book I never would have considered opening, finished 5 magazines from cover to cover, timed airplanes taking off and landing, and studied the arrival and departure of cars from every parking lot that is within my view.  This is not my first time completing the tasks that I just listed.  In fact, I am pretty sure I have resided in each of these rooms at least one other time over the last 3.5 years and have partaken in other meaningless time eating activities.  At least I got the rooms with the bed.

My heart hurts for Sonzee in so many ways.  Another specialist now added to her list, more diagnoses added to her already lengthy compilation, and more pain.  Always pain.  Why couldn't her CDKL5 mutation give a lifetime of laughter and trouble with being too happy?  Why couldn't she just not have a CDKL5 mutation to start?  Instead we have nights of pressing buttons that result in more taunting alarms that are triggers in and of themselves, taking me back to the very first stay when she was only 4 weeks old.  I can still picture everything about that stay, as I stared at her image on the screen in the video I even saw her look the ages she has at each PEMU hospitalization, these wounds won't ever heal.  The room itself is taunting as it gives us new information but rehashes the old. 

A CDKL5 mutation for her is the gift that keeps on giving...or rather really doesn't give anything appropriate in order for her to be pain free and content.  When I think she has hit rock bottom I quickly learn there was so much further she could go, because she has hit it now.  That is until the next byproduct of having a CDKL5 mutation comes sneaking out from the depths.


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Tuesday, September 18, 2018

Thought but never said...

I should be folding the massive amounts of clean laundry sitting in the hampers; besides seeing the other kiddos, that was my 2nd reason for allowing Sam to switch "night duty with Sonzee" for tonight.  I have somehow managed to order two Shutterfly books, one 16 x 20 canvas of our most recent family photo shoot, made and stored the baby his food, ate some amazing dinner brought to us by our longest Phoenix friends (and amazing cook), answered a lot of texts, watched our 2nd oldest yank out another tooth (gross, it is always so gross) but still have not folded the dang laundry.  Instead an earlier text conversation is repeating itself in my mind.

"It must be so incredibly hard to watch your child go through this..."
The replies I wrote and erased:

Watching her seize I am honestly used to, except on occasions.
I am used to it all.
Eh, she has been in pain for so long, it doesn't even phase us anymore.

I settled with:
"It sucks :-("
I debated sugar coating my reply.  That is usually my " go to".  I try to pretend.  I do not know why, who am I actually fooling?  I settled on the middle ground, with a quick and succinct reply of "It sucks...(semi cushioned) with the sad face".  It is the truth, it does suck, and the sad face is how I have felt the majority of the time when it comes to all things Sonzee.  The reality is this is so incredibly hard.  In fact it is so beyond incredibly hard there really are no words to do any of the feelings justice, and unless you are a parent of a child with CDKL5 or some other disability or genetic mutation that results in a nonverbal child along with every potential pitfall that could possibly occur in life, then there really is nothing comparable to offer the situation to.  

I cannot even find a way to express the extreme guilt, sadness, anger, and broken heartedness I have felt since Sunday.  Before now I could not really imagine feeling worse than I already have over the past 3.5 years of her life.  These last 30ish hours have brought on an entirely new level of all of my feelings.  More than 5 people today reached out to me concerned they were the ones who potentially hurt Sonzee, they are not even related to her, so I can assure you telling me any similar phrase to "Do not be hard on yourself", is never going to make a difference.  I am her mom, I should be able to know what, how, or if ever, (and g-d forbid) who is hurting her.  The depressing reality is, I DON'T AND I REALLY DO NOT THINK I EVER WILL.

This feels like the heaviest blanket of extreme parenting failure there ever could be.  In addition is the paralyzing fear of wondering what if we cannot find an actual fix? Not a band aid, but an actual useful, ongoing, actual real permanent fix?  What if she keeps getting hurt?  What if we wait too long to bring her in?  What if we keep causing her to suffer more and more?  Doesn't she suffer enough as it is?  

So if you ever find yourself thinking "It must be so incredibly hard to watch your child go through this..." the brutal honest answer is that it is something I wish and pray for with every ounce of my being that you never have to ever learn about, think about, imagine, or experience, because no parent should ever have to experience this form of parenting and from the bottom of my heart to every parent who does..."It sucks :-(". 


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Thursday, September 13, 2018

Cycles

Her alarm was going off loudly.  Her nurse was in the room with her and I was trying to get dinner on the kids plates after a long day.  I do not know why, but after 3 rings of the alarm I start to get irritated that someone couldn't just press "snooze".  I have a list of potential reasons, but I am sure I would have to really dig deeper to find the real root, and honestly it just annoys me, there really is zero harm in it continuing to sound.  Regardless I stop putting food on the plates and I walk to the room.  I don't get the door to the hallway closed behind me before I hear "It's ok, it's alright Sonzee, I am here, it's ok". 

I walk through the space between her two bedroom doors and walk next to her bed.  Nurse Teri says, "Ya, it's a seizure, we are at 1 minute...it's ok Sonzee".  I bend down next to her feet, rub her ankle, and then rest my face against her foot because every once and awhile these damn seizures get the best of me and no matter that I have watched her seize over an hour between the past two days, this 1 minute causes the tears to just swell in my eyes.  I wait for a pause in nurse Teri's consolations and then say "No Sonzee, it isn't okay that you are seizing, nothing about this is ok, but nurse Teri and I are here...", then I give her a kiss and have to walk out because I don't want nurse Teri to see my face. 

I get into the hallway, close the door after walking out and take a deep breath before I walk back into the kitchen.  I manage to get the tears out of my eyes before getting back to the girls.  They know Sonzee was/is having a seizure because we are all used the alarm by now, and her oldest sister decides she wants to say how she feels bad for Sonzee because of the seizures and that she does not go to the same school as them.  I honestly do not remember what her sister replied to her with because I was in preservation mode and just wanted to do whatever I could to not face them, not hear them, and not have to talk to them.  The one skill I am still (barely) holding onto is not crying and being emotionally upset in front of them, so that was only my priority, well that and getting them fed and in bed so I could get the tears out of my system.

So here I am at 10:51pm with my YouTube music on in the background, my individual serving of cake as my dinner, and my desk looking like a toddler emptied a box of tissues for fun.  It seems that not only does Sonzee's GI system and seizure presentation follow a pattern, but my emotions share a similar cycle.  I wonder how long it will take for this history to stop repeating itself because clearly it is more than 3 years 7 months and 1 day, and I should probably ensure my Amazon subscribe and save has extra tissues next September.

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Wednesday, September 12, 2018

A "new year"

This past Monday and Tuesday we celebrated Rosh Hashana (the Jewish New Year).  On Monday morning Sam and I debated whether we would be bringing Sonzee to the synagogue in order to hear the shofar (blowing of the ram's horn).  In general I am usually the one that is in favor of bringing her along to family events, while Sam tends to play devils advocate and suggest that Sonzee would much rather not walk .3 tenths of a mile in 105 degrees and sit in a loudish room, "stuck in her chair".  On most occasions she will be in pain, just have had a seizure, or present in some other manner that will make me side with Sam, but on Monday morning, I simply did not care.

Her first seizure of the morning was at 7:57am, seizure number two came a little after 9am, Sam was holding strong with his opinion, but I am more stubborn, and after all this is Rosh Hashana, SHE IS GOING WITH US.  Sam left with the older kids, and I put her baby brother for a nap while she was sleeping the seizure off.  A little after 11 her brother woke up and I was getting everything into the stroller and I told myself I was going to check her one more time to see if she was awake, and if not, I would leave her home.  G-d threw me a bone, she was just waking up, so I told her nurse to get her up because she was coming with us to synagogue, and off we went.

Seizure number three happened in the back of the synagogue, but she was there, she got to hear the shofar sound, and she received the (Cohen Gadol blessing) priestly blessing while she slept in her wheelchair.  We were going to be eating lunch at friends and we decided she and her nurse would come with us and hang out there versus going home.  It was on big seizure four of the day (within 6 hours from her first) that she was given her loading dose of keppra and snuggled on the couch with her nurse.  What a way to welcome a new year...good thing the secular calendar has another celebration in 3.5 months that we can hit refresh for.

I will admit her presence with us all day was 100% selfishly directed, but is it too much to want some normalcy?   As Sam left with the older kids yesterday, he said "see you at 11:30", I yelled back, "no you won't".  He said "You have to hear the shofar", "So does Sonzee", I retorted.  I will admit that I threw myself a toddler tantrum and refused to go to synagogue because "If Sonzee was not going, neither was I".  I was angry, to be honest, I still am.  While she had fewer seizures today, (thanks 3200mg of Keppra, VNS, and Fycompa for doing what you're designed to do?) I am still a bit bitter.  I just hope Monday is not going to indicative of what is in store for her year to come, but I suppose if it is, it isn't anything we aren't used to. 

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Wednesday, September 5, 2018

...

Every so often I will open a blog post from a year earlier to see where we were on this journey and see what, if anything, has changed and if so, in what manner.  I didn't remember that in September of last year I only wrote one blog post.  It gave me a chuckle that it's title was "muddy water".  I couldn't remember based on those words what the post was about so I opened it up and was reminded that a year ago Sonzee and I traveled to Children's Hospital of Philadelphia to try and figure out her GI issues.  In another "funny" coincidence I sent her GI doctor here in Phoenix an e-mail 5 hours prior to rereading the post.  I swear the days pass by but her story remains similar to the hamster on its wheel...attempting to run full speed somewhere, never getting anywhere, and ending up just completely exhausted.

It has been a month since we've met with her GI doctor.  Part of me feels like it was just yesterday, while another side of me feels like it was an eternity ago.  We have followed through with our temporary game plan, and in the mean time her seizures have returned into their usual end of summer beginning of fall nightmare.  No matter what we do now for her GI system it would not be possible to judge the outcome fairly because her seizures "dull" everything away.  It is a perpetual cycle.  A cycle that we have come to know and one I was pushing hard NOT to repeat.  I thought by pushing for care conferences beginning in Feb/March was a sure way to "outsmart" her body systems.  I should have known better, but I really thought we might actually get somewhere in my little game of beat the clock.

I lost. 
We lost.
She lost.


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Monday, September 3, 2018

Sonzee's Spa

Yesterday was one of those days that was strictly driven by an excess of adrenalin.  It will certainly take some time to fully decompress.  It was a day full of abundant smiles, an overflow of happy emotions, and a couple of moments of hidden happy tears.  It was a day that you can only dream of experiencing but honestly as a parent you never actually dream of happening to your family.  Forget when the reality of it all sneaks up on you much like the situation that brought you to the same point did in the first place.  It is one thing when you tell your children to close their eyes on their birthday and "make a wish" while blowing out their candles, but when you dream up a wish that you know will bring an immense amount of joy to every remaining day of your 3.5 year old daughter's life from this point forward (no matter how many more there will be) it hits you like a ton of bricks when it comes to fruition.

The sheer magnitude of yesterday is almost too much to actually comprehend.  There is a 22,450lb aquatic training vessel sitting on a slab of concrete in our backyard.  Typing those words brings tears to my eyes and a lump in my throat.  I did not even process that we have a child who qualified for a "Make a Wish", and now I cannot process that when I look into our backyard there is now "Sonzee's Spa".  Much like the day we were handed a packet about epilepsy and told to take our then 5.5-week-old daughter, who was still having at least 12 seizures a day while on medication, home from the hospital, Sam and I felt completely overwhelmed with the spa, the spa manual, and the chemical routine we were given.  

I wonder how it is supposed to feel when you have a "Wish Kid".  We know the reality of having a medically complex child.  Nothing has changed in a day, but oddly after yesterday it weighs a bit heavier on my shoulders.  If I am honest every day that passes by I get a little more scared about how many that means we might have left.  I choose to keep these thoughts in the recesses of my mind, yet answer honestly when asked about her prognosis by others.  I know there are different philosophies of how best to "handle" this reality, and every parent who finds him or herself in this position has their individual way they feel is best.  For me it is to acknowledge the reality but not become suffocated.  I will compare my thoughts to the brown water in Sonzee's Spa.  Yesterday the water was as dark brown as possible, but the chemicals will slowly work amazing magic and by next week our little mermaid will find herself enjoying daily swims.  The threat of the water going brown will always remain, but we will do our best to keep it as clear as possible so she can enjoy herself as much as possible.  Yesterday the reality of what it means that my child is a "Wish Kid" hit me hard, but by next week the harshness will dissipate and left behind will be the same slight nagging presence that we have felt since April of 2015.


There really is no clear way to express the thoughts going on in my mind.  We will forever be grateful to Marquis spa's, Stafford Tower Crane, Make a Wish Arizona, all of our friends and family that were present with us virtually and in person, and everyone that played a role in making Sonzee's Spa become a reality.  


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Monday, August 27, 2018

Dear Newly Diagnosed Parent

Dear Newly Diagnosed Parent, 

Welcome.  Today is the first of many days that your heart will simultaneously break and be put back together at the same time.  After all, when you agreed to the testing that has led you to this moment you did not really expect for the results to bring you here, to this point, an answer.  An answer that will undoubtedly leave you with more questions then you even know to ask and one that will never actually bring you any real type of closure.  

Whether you have reached this point while your child is still in-utero, hours, days, weeks, or years old, those of us who are already on this journey will become your best friends.  We have all worn a similar pair of shoes and while our children may not have the same diagnosis or the same presentation of the same disorder, we all get it in a way that others will never be able to.  No matter how far along we all may be on our own individual journeys I can assure you, we are all still grieving at various times and even if we look put together, we continue to take our turns falling apart.  

While I wish I could offer you a way to heal your now broken heart, that my friend will only come with time and in ways you aren't capable of grasping today.  Today is the beginning of your new journey, please try to wade through the waters slowly, and at your own pace.  The waves will come crashing at you and you may feel like you are drowning, be sure to grasp onto that life line even if it leaves just your nose and mouth out of the water.  Take deep slow breaths and remind yourself that nothing has changed since the moment you were actually told there was a reason for what your child has been going through.

My new friend, what I want you to know is that no matter how much time continues to pass from this day the emotions will remain raw and triggering moments will catch you off guard and always when you least expect them to do so.  You will welcome new parents into this club more than you would prefer, and each time it will be a moment mixed with excitement and sadness.  You will want to tell them everything you have learned since you first stood in their place, but you will remember back to that exact time and you will take a deep breath and just tell them to contact you when they are ready. 

One of the most important lessons I have been taught on this journey is that some things we all have to learn on our own and at our own pace, but eventually we all learn it.  There is no right or wrong way to sift through the cobwebs you have found yourself tangled in, so find a good circle of support, grab multiple boxes of tissues, and tell yourself that you will survive, it will not be easy, but "the greater your storm, the brighter the rainbow" - original author unknown.

Sincerely, 
A mom to a child who was diagnosed 3 years 4 months, and 11 days ago




Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Monday, August 20, 2018

Lost

On Sam's and my first date the discussion of the number of children came up.  We were "laying it all on the table" from the start, limiting the amount of potential surprises I suppose.  We both said between 4-6, however, if Sam had his way it would be enough to complete a full hockey team lineup.  Ironically, my one stipulation was that I wanted as many as possible before I was in my mid thirties with the reasoning that the older I got, there was a "higher chance" of having a child with a disability.  I will just insert that perplexed face emoji here and take a moment to pause. 

After our first daughter was born she of course became the center of our universe.  I was so shocked when I quickly became pregnant with our 2nd when she was only 8 months old.  We vowed from the beginning to make sure we carved out "dates" with her and ensure she always felt special.  Towards the end of my 2nd pregnancy we learned that her brother was going to be born with a heart defect, but we would have to wait until he was born to learn specifics and severity.  I honestly do not remember if I feared the logistics of how we would manage because soon enough he was born.  He spent a blink of time in the NICU and thankfully he required (and still continues to require) minimal medical needs.  With just the two of them, I was always so proud we were able to continue with our individual dates for her and then soon our son as well.

Throughout pregnancy #3 I was so nervous about how we would manage our sanity and being outnumbered, forget about that inidividual date time with each child.  When our daughter was born it was overwhelming, but we somehow managed again to fit in our special dates.  I felt so proud that we were continuing to make it all work.  When we became pregnant with Sonzee, while I was nervous about a 4th child in general, I was not especially concerned about making sure we would each have our dates, because we had kept making it work.  And then...

Life happened.

I am unsure where exactly it happened, but all of a sudden "we need to plan a date with [insert child's name here]" became something that continuously needed to be scheduled to happen, but was not actually happening.  We were doing our best to squeeze in a date here and there after each child's respective after school activity and utilizing organizations that provide tickets for us to take our other children to, however, somehow over the past year our oldest has managed to fall through the cracks.  Her love for dance disappeared close to 18 months ago and so our built in alone time vanished just the same.  Her oldest sibling mentality and personality in general led us to the false belief that she was fine

Recently I noticed a shift in her behavior and after mentioning it to Sam he agreed.  We decided last week instead of a Sam and Randi date night we would invite our daughter along.  We kept it a surprise and at last minute told her to get dressed because she was joining us on date night.  She got dressed up and had our amazing babysitter do pigtail braids.  She chose the restaurant and away we went.  At dinner I asked her if there was anything that Sam and I could do more of or that we weren't doing at all, to which she replied, "to be honest ema, I don't mean to be not nice, but I am really missing this...going on dates.  I want more alone time".

The reality of the confirmation weighed heavily, yet knowing we stumbled upon the discovery before more time slipped away paves way to some relief.  We all know the impact of a child with medical and or special needs is heavy on the entire family unit.  We know the positive outcomes that can come from having a sibling with medical or special needs.  As a parent, one of my biggest fears is the potential resentment that my typical children could develop towards Sonzee or Sam and myself over our preferential treatment of her needs.  It can be easy to forget that it isn't just Sonzee, Sam or myself that loses pieces of themselves during this special needs journey.  I know what it is like to parent a child with significant disabilities and am simultaneously learning how to parent the siblings of said child.  However, fortunately, but unfortunately for my children, I am left saying and thinking "I can only imagine what it must be like to be a sibling to a child with a profound disability". and so I hope none of my kids become lost.

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Tuesday, August 14, 2018

Napkins


During dinners during the week we make sure that we ask our kids a couple of questions about their day or week that will elicit more than a yes/no response.  They have become so accustomed to this tradition that if a couple of minutes go by during Taco Tuesday or Meatless Monday one or more of them will excitedly announce they are going to answer first.  While in New York I came across a brand of napkins that advertised their napkins were "conversation starters", and after a quick glance at the examples they were placed excitedly into the cart.

During one of our most recent meals one of our children received "Swap Day...Who would you switch with and why?"  A sideways lip and squinted eye along with "hmmmmm" was hummed while the answer was being thought over when another child said
"I know who I wouldn't want to be....I wouldn't want to be Sonzee, because she is missing her CDKL5 and it is sad"
I cannot remember Sam nor my exact reaction, but I do recall saying that I agreed it is really sad.  To be honest the statement did not catch me off guard, nor did it make me upset.  In hindsight if anything is sadder than that purely innocently stated truth, it was the fact that Sonzee was sitting by the table with us and there was not a look of hurt or even awareness that this conversation was occurring mere inches from her.

Last night I attended an event with an amazing speaker who touched briefly on the subject of grief in regards to child loss and infertility.  She mentioned that you can have children and grieve that you do not have more, that you can grieve that you became a parent but maybe not following the path you had envisioned, that you can feel grateful for the family you do have while mourning the family you might have planned.  Her words so perfectly spoken, I am sure resonated with every person in the room despite their individual circumstance.  For me, there were multiple times during her discussion I pushed away the tears that filled by eyes. A few times because I did not realize I had buried a lot of the emotions from our entire "becoming parents" journey, other times because I have never really thought to grieve over the miscarriage we experienced after Sonzee, and mainly because of the grief I have yet to settle within my heart over our family not turning out at all how I dreamed.

I never expected nor wished to have a child with a profound disability and I certainly never wanted any of my children to experience parts of the childhood they have had to, nor inevitably will.  However, I am beyond grateful they are learning one of life's most valuable lessons, that life is not fair, and it is how they handle the situation that is important.  They are learning to cope with challenges that will surely enrich them and at the very least enhance how they grow.  What I cannot adequately express is how thankful I am for their openness, innocence, honesty, and vulnerability.  In addition, the gratitude I have towards the creators of these conversational napkins should not go unrecognized because sometimes you need a prompt to a safe place to let your true feelings be known.


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Tuesday, August 7, 2018

Firsts

Yesterday was Sonzee's first day of the 2018-2019 school year.  Since she does not wear a uniform she of course was wearing an adorable "first day of school" outfit, complete with a rhinestone centered hair bow.  She took her first day of school picture in front of the chalkboard wall in the playroom and when it came time, she was escorted by an entourage into her classroom.  Since she attends school with her same at home nurses, I am left with little to no anxiety about the process.  We found her cubby, placed her items inside, explained to her teacher the stationary note I will send to school daily to keep her updated on how things were after the previous school day and the current morning before school, gave Sonzee a kiss, and off we went.

I walked down Utah Dr (which is the street in her building that her classroom is on) while I saw and heard the sounds of a more "typical" drop off experience.  Children sad to see their family members leaving, parents quickly running out in hopes that it would make it easier for the distraction to begin so their child would calm down, and me too preoccupied to give anything a second thought, while trying to hurdle the other kids I had with me out of the building so we could get to our next checklist item.

Due to every school day this week being a half day, a mere 2 hours and 45 min later, with the entourage in tow, we went excitedly to hear all about Sonzee's first day.  Maybe it was because of how wonderful things were last year during school, I did not give any thought to the possibility that her day would or could go any other way besides perfect for her.  I honestly do not know why with all of discomfort, cries, and pain she has been experiencing at home, I assumed that being away from home and back in school would make her magically better.  I do not know why I was taken off guard when her nurse told me how miserable she was and how she wishes something would work for her because she cannot spend her days like this.  I know all of this.  We have been living it all summer.  We have lived this so many times before.  


Last night as I sat thinking about Sonzee's first day of school I was brought back to a position of frustration.  Frustration that yet again, another first for her has to be tainted.  Frustration that another day for her was spent in pain and that we are failing her by having no answers or giving her any relief.  Frustration that this has become our normal.  Frustration that whatever band aid we do provide will likely result in more pain in a different way.   There is not winning and no matter how much normalcy we attempt to provide for her, it is nearly impossible for her to just experience a first. 

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Friday, August 3, 2018

Chasing

She’s out on the corner trying to catch a glimpse
Nothing’s making sense
She’s been chasing an answer
A sign lost in the abyss, this Metropolis

It has been a little over 2 years since we first and last dealt with Sonzee's GI issues.  We have never really gotten a clear answer as to what is going on besides CDKL5, and the bandaids we have used always seem to fall off.  It has never sat well with me, but after searching in and out of state and with multiple professionals, "You are doing amazing with making the best out of a less than ideal situation" has always been how we have ended nearly every discussion on the topic.  Maybe that phrase is supposed to make me feel better over what little bit I feel we have been able to do to comfort her?  Maybe it is supposed to make me actually believe we have and are doing everything we can for her?  Maybe.

Here we are two years later, no better off, but not for any lack of trying.  If only that made our current situation any different.  We will be having another care conference, and for some reason I feel the same way I did on March 15, 2015 before I realized we were going to live a real-life nightmare.  Finding myself completely caught off guard despite knowing deep in my gut what the situation is.  No idea what I expect to happen but knowing something must happen.  Praying I am wrong while hoping the situation will just fix itself all on its own despite history proving repeatedly that will not be the case.  There is a heavy rock sitting in the pit of my stomach leaving me unsure what best/right choice will lift it and wondering about unanswerable questions.

I will never understand why our Sonzee must suffer the way she does.  I will never stop praying for the suffering to end, despite where that leaves me on this journey.  I will continue to tell myself and attempt to believe there is some real significant meaningful purpose behind all that she has to endure and hope one day it will be visibly revealed and that the bitterness inside me has not eaten me alive by that point.  


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Tuesday, July 31, 2018

Packing

Over the past two days the townhouse we have been renting has been filled with half filled plastic bins, boxes, and suitcases.  The last loads of laundry are being completed, counters wiped down, and floors swept.  I have been putting off packing until the absolute last minute because I am not exactly ready to leave.  My mind knows that I cannot stay here forever, but there is something about this place that has my heart, I think it is the combination of mountain air and the most amazing friends we have continued to make and strengthen bonds with over the years.  So today we will walk down the steps of TH49 and drive down Town House Road one final time for 2018, and yes there will most likely be some choking back of tears.  This day every year is always bitter sweet as it marks the end of our summer retreat but paves the way for the next 10 months. 

I am always amazed at how quickly 6 weeks passes by.  Sonzee made it another summer with minimal interventions required.  She got to spend time in the pool, outside, bouncing in her bouncy seat, and relaxing.  I will be honest, she did minimal therapeutic activities and minimal work.  We can just pretend that her eyes were patched daily and that she worked on weight bearing after the 2nd week.  She did get 40 nights of sisterly snuggles, naps in the arms of Sam and myself, and a multitude of conversations with so many people who care about her.  She went to a new amusement park, returned to familiar places, witnesses a couple family lip sync contests and dance offs, and got to meet new people.  Her GI issues earned her a visit to the local hospital ER, but luckily she was not given a tour of the actual inpatient rooms.

Overall, in my eyes, I know her summer was a success.  This is small town in New York has turned into our safe zone, the place where reality is muted and life adjusts to a calmer, slower, and serene way.  So today we will pack up our bags and memories from summer 2018 and hope that google photos and my mind will do them justice and carry us through the tougher times that will inevitably come our way. 

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Monday, July 23, 2018

8 days

Our summer in NY comes to a close in just 8 short days.  I am wondering how some days feel so long but time continues to pass me by with record breaking speed.  By the end of this week Sonzee's oldest brother will have turned 7 years old and her youngest brother 8 months.  I would pray for time to stand still except for the fact that for the next 8 days I can confidently say that Sonzee will be uncomfortable and in some sort of pain, and so each day is one day closer to being able to address her needs in a more suitable environment.

I wish I could say that once we return home her issues will be remedied, but I am more realistic, and we have danced this dance a time or two.  In the recesses of my mind there is hope that our next solution will be successful, but it will not come without a hefty price tag of potential yet guaranteed challenges.  While Sam and I are finally on the same page, the pit in my stomach, weight on my chest, fear in my mind, and pain in my heart are all too much to handle. 

This summer as usual has provided the support I have needed to rest and recharge so I am able to tackle what inevitably lays ahead.  It has allowed me on a certain level to ignore life and choose what we want to focus on.  Being away has kept me from emailing doctors daily, kept us out of inpatient stays, and allowed us to provide some semblance of stability for Sonzee's siblings while keeping Sonzee as comfortable as best we could.  We have 8 more days to live in our version of fantasy, to go on our 3rd annual trip to Hershey Park that Sonzee's siblings have spent a year anticipating, and to continue creating family memories.  So while the next 8 days will be filled with bitter sweet moments we will do our best to highlight the sweet ones and overcome the bitter ones.


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Tuesday, July 17, 2018

Given

Last night I heard one of the most heartbreaking stories that happened to another person and their family.  It made falling asleep even more challenging for me, and that is typically not one of my strengths in general.  While texting with a friend, my mind started racing with a ridiculous amount of thoughts.   Among them was "g-d only gives you what you can handle".  We finished the conversation with me saying "thank g-d I clearly couldn't handle that, because we know how g-d likes to give me what I can handle". 

Honestly, I am one of the first people to roll my eyes when someone says "g-d only gives you what you can handle", and in 2016 I wrote a post about religious doubts and how that statement didn't make me feel so great.  After last nights story I started to think about other circumstances that I personally have not been faced with and the weight of the phrase sat on my shoulders in a different manner.

Not all of us are born knowing what we can supposedly handle.  A lot of us are introduced via various circumstances that we encounter on our own personal journeys.  Initially we are shocked and in disbelief that whatever is happening, is in fact happening.  We wonder how we will make it through, and then somehow you look around and realize you are already waist high in the situation "handling it".  Some situations are "more challenging" than others, but to each person their specific challenge is seemingly insurmountable at the beginning and then people push through and we somehow persevere (however that ends up looking).  I think the majority of us are always grateful for the challenges we are given vs the ones dished out to someone else, because "we couldn't imagine", and truthfully we don't want to imagine.

I am left sitting here today thinking about and being grateful for what I am able to handle, because as much as I think I cannot handle it, there are clearly other things that I cannot handle and I am so grateful I have not been given them to handle.  As for what I have been given...well I think I have enough confidence to admit I am doing a pretty good job at somehow remaining afloat and handling it.

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Wednesday, July 11, 2018

One minute 45 seconds

Lately I have been really struggling with my beliefs and the concept of hope in general.  I do my very best to try and be optimistic but the "real me" is more of a realist, which tends to come across as "Debbie downer".  I can own that about myself, and honestly, I do not feel like I am in a place to jump ship on the "perceived negativity" at this current juncture, because it is safer for me to be closer to the bottom.  When I find myself in one of these lull periods, it is as if I am more receptive to the shimmer of hope that might actually exist.  

In the middle of the night between Monday and Tuesday morning I had what will always remain one of the top 5 moments between Sonzee and myself.  As I went to start her back on her 20 hours of continuous intestinal feeds I turned my phone flashlight on and caught a smirking faced Sonzee looking over at me.  My immediate reaction was a huge smile and of course to begin recording this magic moment.  I honestly do not remember the last time I have felt her portray such giddiness and happiness outwardly, not to mention an actual "dialogue", my heart was literally exploding.  It was near one minute and 45 seconds where my 3-year-old acted like a 3-year-old.  One minute and 45 seconds so genuinely appreciated and not taken for granted that even typing this brings tears to my eyes.


Many minutes, hours, and days spent with Sonzee are surrounded by question marks.  Is she happy?  What is she saying?  Does she understand?  How can we help her?  Is she in pain?  Why are the simple things in life so challenging for her?  Those are just preliminary; my list is far more lengthy and complex.  I often feel like I am drowning with hefty decision making and uncertain repercussions.  Then randomly out of nowhere I am truly given a gift from G-d, as if he knows this is exactly what I am needing.  This one minute and 45 seconds was chicken soup for my soul and will certainly keep me company as we continue through this next phase of uncertainty along this special needs journey.  


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Monday, July 9, 2018

Peek-a-boo

Yesterday we did our annual summer day trip to Kelder's Farm.  My older kids absolutely love berry picking and going on the hayride and trampoline, feeding the animals, and milking the cow.  It is always a fun day and we share the experience with our family friends who have three children; their oldest is older than all of mine, their middle one is the same age as my oldest, and their youngest is a couple of months younger than Sonzee.  Over the years being around their youngest daughter has not really made me sad, just always leaves me in awe thinking of where Sonzee might be if she were typical.  However, this year as she is closer to being three it stings in a different sort of way.

Sonzee's older sister who is 5 has been playing with their youngest daughter almost every day.  They are so cute, and because my daughter is petite, they look close to being the same age, and make the cutest set of pals; hugging each other, laughing, and being silly together.  I was looking back through my pictures from our day at the farm and could not help but feel a pang in my chest as I saw all the pictures of the two of them on the trampoline and holding each other in the smiley-est embraces.  


Those pictures shouted at me "Someone is missing", "She is supposed to be 'Sonzee's friend'", "I should be settling the argument that she could be both of their friends".  It is always these random insignificant moments that crawl into my heart and tug at it in a way I could not have expected.  I have come to know these situations will occur, but since they are unpredictable in a sense, I am never quite prepared for how they will present themselves.  It is on the most perfect fun filled family days that the reality of who Sonzee was not afforded the opportunity to be, sneaks up unexpectedly and says "peek-a-boo".  

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Monday, July 2, 2018

"A cure"

No automatic alt text available.

This slide has been popping up all over my news feed from the CDKL5 conference this past weekend.  I do not know why specifically, but every time I see it pop up it sends my inner core into fight or flight and instant anxiety ensues.  I know that if I had been present and had all the information regarding the context of this slide I would most likely feel less threatened by such words, but as it stands, I just feel "vulnerable" to the potential of hope it should elicit.

After the 6th time I saw this image I turned to Sam and asked him why I was so angry over it.  It was and does give me such a strong negative feeling in the pit of my stomach, and I wish I could read it with the excitement of those who posted it.  I am unsure of the exact reasoning, but while trying to focus on a calming game of Sudoku, I couldn't squelch the numerous questions that came into my mind.  Firstly, is this really a cure for ALL of our children who have a CDKL5 mutation or will it only work for some?  Will Sonzee be alive in 2025?  Is it even possible to really cure a genetic mutation?  What would a cure actually look like?  Who presented this slide?  Does the presenter have a child with a CDKL5 mutation and if not, do they understand the weight that these words carry? and What really is the meaning behind the words on this slide?

It has, is, and always will be a challenge for me to truly embrace the words hope.  I wish I could say the word and actually believe in it.  I wish I could allow myself to be open to the idea of what hope represents, and allow myself to be vulnerable to every component.  I wish I was not so afraid, but that is really what it comes down to.  A bottom of the barrel, crippling, scary, dark, deeply rooted seed of fear that throws up this clear Plexiglas wall so that I can see what is on the other side, but am unable to be part of it.  I want to believe, I want to have hope, but I do not want to be hurt, I do not want to be crushed, and I do not want to be disappointed.  After all, this isn't about hoping for the sun to shine on a rainy day, this is about my 3 year old not suffering, potentially becoming a functioning member of society, and me not having to come to terms with the fact that I will most likely be burying her at some point in my life.

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Friday, June 29, 2018

Conference 2018

This weekend is the Biennial CDKL5 conference taking place in Denver, Colorado.  From the looks of my Facebook feed and the parent support page, the majority of our CDKL5 family will be present.  This is the second conference to take place since we have known of Sonzee's diagnosis and the second conference we will miss.  The obvious reason is because the weekend has coincided with our second weekend in New York both times, but if I am honest, the more psychological reasoning is a bit deeper in nature.

I would be lying if I said I wasn't a bit envious of everyone who is there.  A part of me that is sitting here in New York aching to meet all of my virtual family in person and to meet the children and siblings who went with their families.  There is a big part of me who would love Sonzee to be around children who are the most like her, just in case there are times she may feel like she is the "only one".  There is a piece of me wondering if I went if this would be the mom group that I would finally feel like I fit in most with.

Despite my envy of those at the conference, there is a significant portion of me that is not ready to be in the room with so many parents whose children also suffer from the effects of a CDKL5 deficiency.  I cannot physically see so many impacted children, in what would feel to me, a small confined space.  It breaks my heart that this is all of our reality, that such a debilitating deficiency exists.  I just will not ever understand and maybe avoidance is my way of dealing, because I realize more and more every day, I am still unable, incapable, and unwilling to fully accept the diagnosis. 

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Wednesday, June 27, 2018

Drifting

It is the night before the first day of camp.  My kids excitedly packed their bags as soon as they each got out of the shower before dinner.  I am used to doing this act myself, and while the Type A part of me cringed letting them throw everything haphazardly into their bags, I took a deep breath and just observed.  I couldn't keep up with their excitement as I was ensuring they each packed their own sunscreens, goggles, towels, and every other item they will need in their backpacks.  I was glancing over the "camphouse" items for Sonzee's bigger sister and trying not to think about the fact that tomorrow should be Sonzee's first day of camp as well.  I know that Sonzee was able to experience Friendship Circle camp in May, but that is not the camp experience I am mourning tonight.

I found my mind drifting off into the distance, to a life that is not mine; what I would refer to as my alter-reality.  It was there I was packing a 4th backpack with two bathing suits and two towels.  Sadly even in my fictitious reality I have no idea what backpack Sonzee would be sporting or what bathing suit style she would prefer.  I think the saddest part of this daydream is that I cannot imagine anything about who Sonzee would have been had she been the typical child we anticipated.  It almost makes me more angry that I cannot even mourn properly, because this deficiency has taken away everything that I should know about my 3 year old.  I am left simply guessing and insinuating about her personality and preferences, but the truth is, she is unable to tell me specifics so even my dreams leave me anxious about the potential disservice I am causing.

There are nights like tonight where I wish Sonzee's CDKL5 deficiency did not exist.  Where we were just a boring, typical family with no obvious outward struggles and I didn't know anything about CDKL5, childhood epilepsy, or have any significant first hand knowledge about a profound developmental disability.  While this is and always will be the path our family must travel, there is still a significant part of my mind that is traveling an imaginary parallel journey filled with the "could haves", "would haves", and "should haves".


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Monday, June 25, 2018

Summer

Last Thursday we boarded the plane for summer 2018 in New York.  This is our family's 3rd consecutive year and 4th year in general that we we will be spending the summer in the Catskills.  Every year when the summer ends I eagerly await its return, because there is just something about this place.  A change from the hustle and bustle of our typical, crazy, everyday life.  The mountain air, gorgeous scenery, and lack of doctors offices and hospitals gives me enough fuel to keep me going through the rest of the year.  Then when summer rolls around, we gamble that Sonzee will behave and we won't have to visit any doctors or hospitals. For the most part we have been lucky, and even though inevitably our luck will run out soon, the trade off will always be worth it.

We have been here 3 days and I already feel like time is going by way too quickly.  My list of "To-Do's" and prospective achievements for Sonzee are lengthy, and as usual despite the lack of scheduled activities, it does not appear that any of it will be completed.  No matter that we changed scenery, my brain never leaves the chaos and world of CDKL5.  There are medical letters of necessity that need to be written, prescriptions that need to be filled, questionnaires and studies that need to be started and finished.  We just can't seem to escape what comes with the life of CDKL5 Deficiency Disorder.  Yet, the thing about being in the mountains, during the summer, with the entire family is that all of my long lists of To-Do's tend to get pushed off, and I am partially okay with that.


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Monday, June 18, 2018

Epilepsy Blog Relay: Subtle Seizures


This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018.  Follow along!

When our daughter had her first seizure it was not in a way I would have thought a seizure would look like.  It was subtle, quick, and questionable.  I honestly wonder how many seizures in her first days I missed, or how many I saw but attributed to something else.  I often wonder if I felt them in utero, or if her first one occurred right after birth.  In hindsight, the "wonky eye movement" we saw, that was attributed to just being "weird baby" have become her trademark.  So many times her simple eye roll will be missed by those who are unfamiliar with her, and to be honest even those who know her extremely well can still miss these types, or just think she is being sassy.  They are so fast that epileptologists who are not her own have missed them on an EEG.  They happen when you turn your head to pick something up, when you blink, when you open the fridge, or when you rub your eyes.  They are less than a second and look benign.

So many times when I point out a seizure to someone who has just met Sonzee the responses are always the same, "Oh wow, I never would have known that was seizure" and "How did you know that was a seizure?" The worst part about her trademark eye rolls are that they are just as devastating to her brain as her other types.  They tend to occur in clusters, seconds apart, and for lengthy periods of time.  They are the most difficult type for us to stop.  It is this type that resulted in a call to 911, multiple rescue medications, and at the time a new to her fancy diagnosis of "non-convulsive status epilepticus".   

Before 2015 I had never thought about seizures much less known anything significant about how they might present.  Our family has now seen so many various presentations of seizures that our family is quite proficient in identifying most (if not all) types of seizure activity.  It is amazing that our 5, 6, and 8 year old can tell you the intricacies of different types of seizures.  What is so important to know about seizures is that they are not always obvious and they are not what you might envision.  

NEXT UP: Be sure to check out the next post by Abby Gustus Alford at www.livingwellwithepilepsy.com
TWITTER CHAT: Save the date for the  #LivingWellChat on June 30 at 7PM ET.


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Sunday, June 17, 2018

1 in 46,000


One of Sonzee's CDKL5 sister's mom created the image above.  I saw it circulate in our parent support page about 4 days ago and to be honest I kept scrolling.  I am unsure what deep rooted psychological reason it might be due to, but the "easy" answer is just that it seemed almost unheard of to believe 2 children a week could possibly be diagnosed with CDKL5.  It is rare after all, that number makes it feel much, much, much more common.  I let the image go out of my mind for a bit, and then Friday afternoon I reached out to the mom and asked her more about the statistic.  She directed me to the CDKL5 UK FAQ page and then I reached out to another parent for confirmation.  1 in 46,000. 

1 in 46,000, the amount of innocent children, and by default, their families end up learning the ins and outs of living life with a CDKL5 Deficiency Disorder.  This is based on a reliable testing agency in Europe that estimates incidence.  To be honest after I learned this, it just made me angry.  Why is this number as high as it is?  De Novo mutations are the main kind of CDKL5 mutations, meaning that while genetic, neither mother nor father has the mutation themselves and so "no one is responsible", yet 1 in 46,000 times this is estimated to occur.  Do not get me wrong, 1 in 46,000 is still considered "rare", and for comparison sake, the incidence of Rett Syndrome is 1 in 10,000, but welcoming an average of two new families a week to our CDKL5 family just hurts my heart.

Today, like every June 17 of Sonzee's life I will give homage to this day.  It is bitter sweet as I am grateful we have a designated day due to the advances of science, but angry that such a day even has to exist.  This year, our day of awareness coincides with Father's Day in America, and for the first time since 2015, I have not told my kids that today is awareness day.  We spend every day during the year living, breathing, witnessing, and being aware of the effects and impact of CDKL5, so today we will honor Sam and be thankful that Sonzee has an amazing dad and tomorrow we will back to spreading awareness of CDKL5.



Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Wednesday, June 13, 2018

Holding

Over the last couple of weeks Sonzee's baby brother had a massive burst with his skill acquisition.  He went from being a little "behind" to right on target with just some little kinks that he will have to iron out as he continues to grow.  He is 6.5 months old and he is rolling around and able to sit on his own for increasing lengths of time.  He is reaching out for and exploring his toys more often and his personality is shining through.  My most and least favorite part of the effects of his current gains is blended into one.  Nothing has ever brought me as much joy as the relationships I have watched develop between my children.  However, this week nothing hurt quite as much as watching my older kiddos run passed Sonzee after they came home and over to their brother, who was sitting up, so eager to see them with a grin wider than his little face could handle.

In one instance I was hit with so many emotions.  They smothered him in kisses and hugs while picking up his hands and getting excited with him.  After close to a minute of watching them interact, I said from behind the counter, "Did you say hi to Sonzee?"  My oldest daughter quickly turned around and went right over to Sonzee and gave her kisses and asked about her day, but the damage was done.  I was not upset or mad at my older children, these situations happen.  I understand what it is like to be drawn to those toothless smiles, the sweet coos, and the reciprocity of a more typical child.  Yet my heart broke for Sonzee.  She had to have known.  She used to be the one they ran to when they came in the door.  Three years into this journey and it amazes me each time I experience something new that brings about the "old" feelings of anger, frustration, sadness, and grief over the loss of what should have been a healthy 4th child.

As this journey continues it does not get any easier, but rather the feelings just ebb and flow.  Some days the weight is almost unbearable and the pain feels as fresh as it did back in 2015.  Then there are times when I am unphased by our situation and "it is what it is".  There is no way of knowing what each day will bring, and I wish I knew in advance because more often than not I am just holding on and barely holding on at the same time.

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Wednesday, June 6, 2018

A wish

I was putting my older girls to bed last night when I decided to ask each of them what they disliked most about CDKL5.  The younger one quickly said "the seizures", and after mulling it over a bit the oldest said "it is sad".  I first asked the younger one, "why do you dislike the seizures?", and she replied by putting her hands up, clenching her jaw, and saying "because you look like this".  I then asked my oldest, "why is it sad?", and I was told "because you cannot talk".  As I am sitting here I am asking myself the same question and I feel like it is similar to being asked, "would you rather be deaf or blind?".  Neither is ideal, both have their challenges, and I would rather none of the above.  However, if I had to choose what I dislike most about Sonzee's CDKL5 mutation my answer would be that she is trapped.

On Monday evening I received an email from one of Sonzee's doctors suggesting we put her back on the pain medication, gabapentin, at a higher dose than last time to help with the visceral hyperalgesia.  What if she doesn't even have stomach or intestinal pain and I am misinterpreting her vocalizations?  What if she is itchy or nauseous?  What if she just has a headache or is dizzy from all of the other medications she is on?  What if she is just a sassy toddler that cannot get her point across and she wants to be doing something else besides what we think she is wanting to do?

If one wish of mine would be granted, I would use it to have a day where Sonya could communicate to me.  A day where we could come up with a system for me to learn her specific movements, facial expressions, and vocalizations so that when our day was done I would still be able to understand her wants and needs.  I would ask her to tell me how she would prefer to be handled during a seizure and how best we could comfort her when it was over.  I would want her to tell me if I have completely missed the mark with my advocating for things I think she wants or my assumptions of her ailments.  There is not much else that is worse than the feeling I have in the pit of my stomach of being wrong about me potentially misinterpreting her discomforts and her being unable to tell me I am wrong.

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers