Wednesday, November 30, 2016

Panic attack

"It was a panic attack", I explained to Sam.  It's happened to me before so I know the symptoms and overall feeling.  At the time he told me to sit down, take deep breaths, use my inhaler, and drink some water.  After some time, it worked, and things became balanced.  The problem is I don't know what exactly started it from a psychological perspective and I don't know why I still have remnants of it.  At the time the contributing factor was a coconut based food item and my constant fear that I will develop the same allergy as the rest of my family as I age.  I have seen an allergist and received testing to confirm that I am in fact not allergic and it is "all in my head and due to stress". Yet I can't be around a nut product knowingly and not have it be a trigger.

It's a day shy of a week since the incident and I still have the heavy restricting feeling in my chest.  On occasion my heart races and the panicking gets worse.  Why?  I know there is a lot going on in decision land and I am still preoccupied with the loss of her CDKL5 brother, Jakob.  I just don't know how to shake it off, and I don't know how long it will last.  Will my life always be like this or does it eventually get easier to compartmentalize all of my thoughts and emotions?

I have done so much better the last couple of months taking care of myself and making sure I take me time.  I should probably curb my coffee intake and maybe sleep more than 3 hours a night, but truth be told I don't think either of those are possible right now.  I don't know how to make these attacks stop and I don't think they will on their own...so I guess the next step is just learning how to handle them because they are probably par for the course.



Monday, November 28, 2016

A decision already made...

I wanted to count the number of posts that I have written that involved decision-making, and then I realized there were far too many to count.  The majority of our situations involve making choices between two unfavorable options, yet deciding which will hopefully be the least disruptive to whatever balance we have currently stumbled upon.  I know deep down the results of our choices are not based on whether we made the right or wrong choice, but it never makes me feel any better when the outcome is not what we had hoped.

Here we are again at our friendly little fork in the road.  This one both Sam and myself saw coming, so we have talked about what we think would be best for some time now.  However, discussing the potential scenarios and actually living them are entirely different.  I always think I am prepared until the day comes that the doctor looks at us and says, "I feel comfortable and I think it is time that we go ahead with XYZ, now you and Sam have to make the final decision".  I do not know why all of my confidence flies out of the window and the panic attack sets in at that moment, but it has happened every time without fail.

When Sonzee was placed on intestinal feeds back in May, it was to save her life.  Thankfully it did the job, and so making the decision to have a tube come out of her nose and go through her body was not even a smidgen challenging.  Placing a tube on her face went against everything I had wanted for her, knowing how much it would bother her, knowing that it can cause feeding difficulties in the long run, knowing that it would be an attention grabber while she was out in public and cause excessive staring.  She has lived with a tube on her face for 6 months, and while it is not ideal, we are all used to it.  Truth be told having a blinking sign indicating that I am aware something is wrong with my child actually makes me feel comforted while we are out in public.  


Today we were told that she will not be starting stomach feeding in the foreseeable future and so her GI team feels comfortable with moving the tube off her face and changing her stomach tube to a stomach/intestinal tube.  It is not to say her stomach will not work ever, but CDKL5 has not been kind to her GI system.  We have wanted this tube relocated for so long; I am unsure why I am nauseous at this thought.  I know there is a part of me that is sad that her stomach was not able to start working again by this point.  I know there is a part of me that worries once we do this, it never will.  I know there is a part of me that fears this "outpatient" procedure will go completely wrong, despite the fact that "complications are rare AND it is outpatient".  I know there is a part of me that worries this will only aggravate her stomach more, causing her more pain and discomfort and constant venting (releasing the contents of the stomach so that they don't just sit there).  I know I am afraid of tipping the boat since it has been rocking already for 6 weeks and we are finally getting our happy bear back.  What I think is my biggest challenge right now is knowing what our answer is, but fearing the outcome.




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Friday, November 25, 2016

It is with sadness...

We had a great Thanksgiving day with some close friends of ours and then we put the big kids to sleep.  Sonzee fell asleep in her favorite spot on the floor and then I went onto Facebook.  As one of the admins of the CDKL5 support group I receive notifications when a person makes a post.  I typically pop over to see what information is being shared or what question is being asked...and that's when I read the news.  The news I foreshadowed as the season began to change almost a month ago, the news that the entire CDKL5 family dreads...the news that informs us that we have lost another precious CDKL5 family member.

Instantly my heart begins to ache as it simultaneously breaks, my chest begins to tighten, and my pulse increases.  Unfortunately I know this feeling all too well because our CDKL5 family endures these losses far too often.  It is a mixture of pain for the family, panic that we could be next, relief for the child that he (in this case) is no longer suffering, anger that this child and his family had to deal with CDKL5, and sheer frustration that in 2016 science hasn't found a way to fix or eliminate genetic mutations such as CDKL5.

No matter how optimistic, hopeful, or positive we are as parents of a child with a CDKL5 mutation there is no winning.  We do our best to make our children as happy and loved as possible.  We give them as many opportunities to thrive as we possibly can.  We make decisions that will hopefully only increase our child's quality of life.  But in the end no matter what we do, we can't beat the CDKL5 mutations themselves.

As the holiday season officially begins as well as #GivingTuesday this Tuesday, I ask you all to consider giving a tax deductible donation to Sonya's Story to help fund crucial research (such as keeping Hope4Harper's cell line maintained for a year) so that posts like this one don't have to continue happening.  I ask you to consider buying Sonya's Story and CDKL5 apparel to help spread awareness of CDKL5 (all proceeds from those sales go directly to Sonya's Story to be given to research institutions to help us find a cure).  I encourage you to help us find a cure!


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Thursday, November 24, 2016

Meant to be.




So much has happened in our lives since Thanksgiving of 2015.  As I take a look at our "year in review" it is brings up a multitude of emotions.  There were days that were just so amazing it is challenging to give them justice with only words.  At the same time, there were days I would rather have never had and wish I could forget.  As a family, we participated in some experiences that were no different from years past, but there were also new ones.  No matter what the outcome of each one was, the experience itself continues to mold me, strengthen me, and help me to complete my purpose here on earth.  I know the same holds true for Sonzee and all of our children.  

As I read the quote posted above and I apply it to Sonzee, I am so thankful that she is laying in her favorite position on the floor half in her sensory box with her right thumb in her mouth and asleep.  She has managed to be outpatient for 28 days (hmm, I see that must be our magic number), we may finally have a solution to her GI issues and she has a new activity chair that makes her capable of being an active member of our family.  There are so many things to be thankful for when it comes to how she is doing and I am so thankful that this is where she is meant to be.


I think this is going to be one of those refrigerator magnet types of quotes for me.  While there were many outcomes that occurred for me personally over this past year that I may not have agreed with, they needed to happen for me to be where I am at emotionally, physically, and spiritually.  While all of those are different than where I was typing my Thanksgiving post one year ago, and while I may not be 100% okay with that now or for whatever is in store for me over the next year...it will always be exactly where and how it is meant to be.



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Monday, November 21, 2016

Deja Vu'

Pretty much since I started blogging I have followed a similar routine when it comes time to write my posts.  For the most part, I wait until all of the kids are in bed, I pour myself a glass of wine (or two), and I open YouTube so I can listen to the same song on repeat.  I am unsure if it is because of the message of the song, the notes of the music, or the actual lyrics, but what is a guarantee are the tears that flow on cue when I press play.  I guess that is why this has become the perfect therapeutic outlet for me.

The last month or so has been another tough one over here at Sonya's Story, especially for me.  There has been this lingering feeling of deja vu', I can feel it in my bones.  It is an eerie feeling; I know that we have traveled this path before.  One of Sonzee's biggest battles is with her GI system.  In May, she spent 28 days in the hospital and four days prior to me showing up at the ER frustrated out of my mind I wrote this post.  I am about at the exact same level of frustration, maybe even more because I have lived through that hell once already; I do not want to do it again.  I am just as sad as I am frustrated because I am fearful of my gut.  My gut has said since her labs in August that things are not what they appear.

I am so incredibly broken on the inside because I really do not know if there is anything we can do for her.  This has to be the absolute worst feeling to have as a parent.  I have been in touch with her team daily and/or weekly depending on their involvement, we are trying everything we can, but we do not even know what is really going on inside her complicated little body.  I know she is miserable.  I know she is frustrated we cannot figure out what she is telling us.  I know we are doing our best, but I also know our best just is not good enough, again. 


We are back at the drawing board, we are going to run labs, we are going to see results, but there still might not be anything we can do for her.  My feeling (and biggest fear) is that her intestines are following in the same path as her stomach.  I wish we knew what made her stomach stop working so we could figure out why it is happening to her intestines.  I am feeling like we are headed for a really steep drop on this coaster and I just hope my harness is on tight enough for this one.

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Friday, November 18, 2016

Impartial

This week in our CDKL5 support group we welcomed so many new families who have babies.  I now consider anyone younger than Sonzee a baby and I am struggling with the realization that in just three short months she will be two.  This is a challenging concept to wrap my head around for so many reasons; I am having trouble picking the ones to focus on for this post.  With the challenges her 21 months of life have thrown at her, I am really proud and content with the place she is currently, however, I cannot ignore the elephant in the room that says, "None of the past 21 months has been normal, and none of it is fair".  I really think that the best lesson of my life I learned in 5th grade with Miss Bailey when she introduced our class to the word "impartial" with the sentence, "Life is not impartial".  Nothing like a great review of 21 months to say, "Miss Bailey, you were absolutely correct".

Sonzee is alive, she is absorbing food, she is healthy..., but we should not have to think about these things.  I should be chasing a toddler around my house; picking her up from the ground as she falls as she runs after her siblings trying to join in their shenanigans.  I should be enrolling her into dance class with Miss Jenny and Miss Emily.  She should be running around the gym with Coach Susan.  The appointments I make should not be with neurology, gastroenterology, pulmonology, ophthalmology, and/or interventional radiology.  I should not be parking in a handicap parking space and unfolding a stroller with a blue placard that explains it is being used as a wheelchair. 

My favorite part of having three girls is opening up the drawer of clothing and reminiscing over what her sisters did while wearing each outfit, knowing how every fade, stain, and spot was caused.  I love when her sister says "that laeya's?  That not mine.  That Sonzee’s?"  Words I most likely will not ever hear come from Sonzee's mouth.  The clothing will be passed down to her baby cousin, and it will bring me so much joy and happiness to watch her do the things in them that Sonzee has not, but it will also sting.  This is not how it is supposed to be.  My heart hurts.

When I look at Sonzee while she is in the pool with children her age it is completely mind boggling that they are the same age.  When children her age walk up to the stroller it stings when they say "baby", not because they are calling her a "baby", but because they are absolutely correct, she looks and acts like a baby.  It is the truth that hurts.  It is our current situation that is painful.  I do not understand why this had to happen to her.  I honestly do not try to make heads or tails of it, but I wish I knew why she has to suffer.

As each day goes by I am so thankful that she is still here with us, but it also gets scarier for me to think "how much time does she have left".  While I am being honest, there are days when her suffering is just so horrific that I wonder, "Which outcome is better for her?"  There have been days during the past 21 months that I have wondered which box to check off when they ask about 911 or comfort measures.  These are not the type of parenting questions I should be answering about my 21-month-old child.  This is not fair.  

There have been many positives that have occurred over the past 21 months, but none of them came without having to battle.  Nothing since her birth has been easy, and nothing about her future will be either.  Each day since her birth I have lived on a tight rope trying to balance.  The atmosphere in our lives each day over the past 21 months has been dictated by how she feels.  We live in a constant state of limbo while walking on eggshells hoping and praying that no matter what, a rebound will occur.  As I previously stated, today things are going well because things are going well for Sonzee, but it does not change the aching pit in my stomach of how different this life is from the one I envisioned.  I wish our family had never known of CDKL5, but as I learned in grade school about 22 years ago...life is not impartial.


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Wednesday, November 16, 2016

"Normal"

I was on the brink of needing to cork the good ole' wine bottle prior to getting the older kids into their beds last night when Sonzee was asleep during the prescheduled live video feed of her getting her glasses.  For a good while I was on the verge of tears because "why can't just one thing go the way I planned it".  I sat in the corner of our couch and stared into my phone sending sad faces emojis and negative words to a close friend.  Then I took a cute picture of her peacefully sleeping and made a post to let her story tellers know the live video would be postponed.

After some time went by I looked over at her mat and I saw her eyes were blinking..."YES! She is awake, live feed of glasses is on!"  I am pretty sure I said that aloud as well in my head.  Part of me ecstatic, the other part slightly nervous.  This is the Sonze we are talking about, if she isn't in the mood, well than we might as well stick to regular evening programming because this could get ugly really really fast!

I had spent a good portion of the afternoon thinking about what would be the best position for her to be in, what toys would be best for her "first time seeing" and reminding myself multiple times that this could very well be "disappointing" in terms of her reaction so I shouldn't get my hopes up too high. When it was time to start the live feed I was beyond nervous.  Talking to groups of people isn't exactly my favorite thing AND I had not planned on being in the video, so I apologize about the clothing malfunctions (oops!).

Besides the video itself being more amazing than my wildest dreams could ever have envisioned, when I look back on how the evenings events went I actually am pretty excited about something that I never considered.  I had been down in the dumps about little bear falling asleep, I was a bit nervous when she started to cry when we made our first attempt at getting the glasses on her face, but the fact that it played out the way it did made me smile because it really is normal to have a 21 month old do everything she did!  

What 21 month old naps when you want him/her to? What 21 month old "cooperates"? What 21 month old wants a band around his/her head? (So many people mentioned this was a problem for their child and I merely shrugged it off thinking how Sonzee isn't fazed like typical kids). What 21 month old is happy 24/7?  While there is plenty that is different about Sonzee and all of her same aged peers...just this once it was nice to realize everything she did was just "normal."

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Sunday, November 13, 2016

Leap of faith

There are so many challenging parts of having a child with CDKL5 that I find myself starting a post with "one of the most challenging parts of being a parent to a child with CDKL5" more often than not.  Yet again here I am finding no other way to start today's post...other than...one of the most challenging parts of being a parent to a child who has a CDKL5 mutation is constantly having to take leaps of faith.

There is really no other way to live this life without constantly having to throw your hands up in the air saying "I quit" and just giving in to whatever is instore.  Sometimes you get lucky and the outcome "works in your child's favor", more often than not, you are left angry that you, your family, and especially your child are in this predicament, and that you actually felt the slightest tinge of hope that things would "work out".

It is usually after you have exhausted the 10 most common of solutions that you allow yourself to go to the next level of solutions that you normally wouldn't ever consider, but now you really have nothing to lose.  The sad part is, at this level of options there is always something that is being sacrificed, but it is the lesser of all the evils your child is facing.  It is so infuriating to be placed in this position, but then again nothing is inviting about holding a CDKL5 parenting position.



So here we are...again...being faced with making a decision that doesn't come without a consequence but if it is successful could prove to be one of the MOST beneficial outcomes for our little bear.  The balance of the side effects of her new medication weighed against the possibility that her pain could become obsolete makes it a "no brainer" at this time.  So with the notion that this could be Sonzee's saving grace, we again hold our breath and take another leap of faith.

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Wednesday, November 9, 2016

Annoyed.

In general I try not to take things personally, however when it comes to Sonzee and spreading awareness of her story, CDKL5, and epilepsy in general it tends to be a different story.  I am much more sensitive when people make comments without thinking, it's not that I want to crawl up into a ball and cry, but sometimes the words cut a little deeper than I would like.  I also try to not take offense to people not sharing or liking Facebook posts.  I can appreciate that Facebook and social media in general can become overwhelming and people do not like their news feeds being inundated with random children's "sad life stories".  However, I cannot lie and say it does not make me super peeved and annoyed when I see people have hidden or unliked a "Sonya's Story" post.  

I know everyone has their soapbox, their personal agenda, and personal struggles, but what I want to ask is what happens when it is THEIR child, THEIR best friend’s child, or THEIR family member who becomes a victim to epilepsy or a rare genetic disorder?  How would YOU feel when an important purpose that YOU stand for, that YOU want others to care about is ignored?  Sonya's Story and ALL of the Facebook teams that represent a fight for a cure, an illness, and/or a cause, they are about REAL PEOPLE!  They are children, they are siblings, they are moms and dads, and they are people worth more than just hitting "ignore post".


As Sonzee gets older, she will not be as cute as she is or was when she was a brand new baby who people oogled and ogled over.  As time goes by people won't look at her and feel as driven to help find a cure or support the cause, but right now I really don't understand how people can hide her cute pictures (okay, maybe I am biased?)  and not want to help find a cure or spread awareness for CDKL5.  I wish Facebook told me who was hiding posts and unliking her Facebook page so I could defriend them.  Maybe I am being a little too sensitive about the issue, but can I tell you how many of my Facebook friends Jamberry, Mary Kay, Luloroe, Arbonne, Rodan & Fields, Scentsy (I can go on) groups I belong to?  What does it hurt to follow a page?  I don't ask for people to like a post, nor does anyone have to share it, but I wish people would follow her story because they won’t ever know when it might help someone they know and love in the future.

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Tuesday, November 8, 2016

Angry/Sad

I am in one of my negative phases of being a special needs mom.  I am sad that my child is constantly in pain and suffering, I am angry because it is my child this happened to.  I know there are others in the same boat and I know you get it.  I know this is just par for the course and that I am not experiencing anything ultra special, but I HATE IT.  I hate that I cannot just be living a regular mundane boring life where my biggest concern is how many hours my children will spend in after school activities.  I miss the days of normalcy we once had and I miss that I cannot even think of one of those "huge issues" I used to think was huge because now it has become insignificant.  I miss the days where a decision did not directly relate to Sonzee's quality or length of life.

It breaks my heart that a cold/virus that a typical resilient child bounces back from overnight will take my little girl approximately 6 weeks to get back to her baseline.  I hate that waiting that long does not grant guarantees.  I am so angry she has to suffer all the time.  There is nothing that is easy for her, nothing that comes free.  After we meet with a specialist, she is sent home with eight lines of home care instructions where three are for pain medications, three are to try to determine the cause, and two are simply to keep doing what we are doing with her.  


It is absolutely draining as a parent to constantly feel like you failure because you cannot make things right, there is no way to fix any of this.  There is no doctor that has an answer, there is no child with CDKL5 who has been given a cure, and there is NOTHING that we can do but treat whatever issue arises with our best hand of cards...and pray it is enough.


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Thursday, November 3, 2016

Lessons of a 28 day hospital stay

**Part of the November writing challenge for themighty.com which has been published here

Our daughter was diagnosed with a rare genetic disorder, CDKL5, when she was only 8 weeks old.  This was preceded by a weeklong NICU stay immediately after birth and seizures that were diagnosed when she was 4 weeks old.  We as a family have endured multiple tough moments during her 20 months of life so far, however, nothing was more eye opening than the lessons I learned after her 28 days in the hospital when she was 15 months old. 

She was solely breastfed from birth until we transitioned her to a bottle in order to receive a special diet for her seizures (ketogenic); whatever she was unable to eat by mouth we fed into her stomach directly via her g-tube.  No matter how much we tried to feed her, she was unable to keep anything down.  Finally I hit my breaking point and brought her to the ER.  When our daughter was admitted to the hospital, she was already marked as Failure to Thrive due to not gaining weight or growing at all from the time she was 6 months old.  It was a scary time not knowing if we would find and fix the problem.  The doctors could not tell us when they anticipated her to be discharged.  As the hours turned into days, and the days into the weeks, there was a cloud of darkness that haunted my brain, and I began to wonder, “Is she going to come home?  
There is nothing scarier, nothing more real, and nothing more humbling than being faced with the reality that the baby you checked into the hospital with might not be coming home with you.  There are times on this journey where I am reminded that I have no control in my daughter’s fate; I am simply here to help her complete her purpose.  This is a challenging concept to accept as a parent, however, I consider myself lucky to have found myself in this situation.
 

I watched my daughter receive potassium, phosphorous, albumen, and blood transfusions.  Her stomach was deemed un-useable and her intestines could not handle her nutrition goals.  She was placed on total parenteral nutrition (TPN) via a central line that emptied near her heart.  Her body swelled from water retention and she received diuretics multiple times.  Knowing how close my daughter was to not being physically here with us has made me learn to truly appreciate every moment we have with her.  I have learned to understand what it means to not sweat the small stuff”.  I learned I do not have time for petty inconsequential things because they honestly do not matter.  I continue to have an inner battle in my mind over wanting her to be typical and meet milestones, but to be honest; I am just appreciative when she wakes up each morning.  While I will always be haunted by the experience and limbo of her 28 days in the hospital, I know that without them, I would not be able to put life in perspective. 

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Wednesday, November 2, 2016

Comparisons

It happens all the time after I tell someone about Sonzee.  The innocent follow up question is always "what do the doctors say for the long term?”  This usually results in me telling them while the spectrum of her disorder varies, most children with her disorder do not walk, talk, or feed themselves on their own.  I always state we will do whatever we can for her, we are not saying never, but her disorder is limiting, in all ways.  This is then followed by the seemingly innocent comparison.  The one where the person is trying to maybe instill some hope into my life by saying that their child, a friend’s child, or a child of a second cousin twice removed has epilepsy and they are graduating from Yale or some other Ivy League college.  (To be honest, Ivy League schools are not really on my wish list for any of my children, but I digress).

While the statement seems "benign", what I would love people to know is that the comparison to your child, your friend's child, or your cousin's child twice removed, is actually unfair.  CDKL5 and many genetic disorders are limiting in the fact that they are genetic.  When a gene in a body is incomplete, missing, or has an error it has a catastrophic impact on all areas of development.  There is no medication that can fix it; there is no "system reboot" that can be completed.  There is absolutely nothing that can be done to actually make the bodywork normally.  Symptoms can be treated to an extent, maybe Sonya's seizures will one day be completely under control, but even if that happens, she will always have an abnormal mutation on her CDKL5 gene.  This means that the comparison might as well be apples to oranges.

We can spend thousands of dollars on therapies, we can place her in every therapy the world has to offer, and they will help her, but they will not ever make her act like or be a typical child.  When I am told that "doctors can be wrong", yes they can be, but not with CDKL5.  I wish people did not feel the need to create small talk by saying "you never know what might happen".  You are absolutely correct, I do not, however unless it involves a vial of CDKL5 capable of replacing the frameshift mutation on Sonzee's, than I am 99% certain that attending (an Ivy League) college will not be in her cards (but she will be happy to accept an honorary degree from one).


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Sonzee's Slideshow