Saturday, December 31, 2016

2016

As I sit here with just two hours remaining in 2016 I am left wondering (yet again) how another year has flown by so quickly.  I swear each year the days must shave off a minute or two at a time because I remember writing my 2015 post like it was yesterday.  Another chapter of Sonya's Story is coming to a close as a new one is just beginning.  Similar to last year, as I sit here reflecting on the months that have passed I am unsure what to make of it all.  The year of 2016 has left me with memories to cherish and ones I wish would not be etched into my mind as if it was stone.  2016 brought about many new introductions, emotions, and experiences as we continue to navigate through the world of special needs.  It was also a year of tremendous loss for our CDKL5 family, and maybe 2017 will not bring the same nightmares to any of our families.

2016 was a year of learning the ins and outs of the gastrointestinal system.  In addition to Sonzee's battle with seizures, she spent the majority of this past year simply trying to maintain nourishment and battle being failure to thrive.  We learned about alternative methods of feeding such as Total Parenteral Nutrition (TPN), a Gastrostomy tube (G-tube), and a Nasojejunal tube (NJ) all of which would ultimately save Sonzee's life and maintain it.  2016 brought about the labels of gastroparesis and small bowl bacterial overgrowth, which now have her on daily antibiotics to restore the good gut bacteria.

For seizures 2016 brought about hypsarrythmia (an abnormal interictal pattern, consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity seen on electroencephalogram) and infantile spasms, resulting in 2 months of a high dose steroid treatment and side effects that were horrific and some she will likely never outgrow.  2016 introduced us to various formulas and diets and brought about a brief stint on the ketogenic diet, which we learned, was not beneficial to combating her seizures.  Thankfully, after multiple medication and various medical marijuana trials, we found Sonzee's magic seizure combo (for now) of Sabril and RSHO hemp oil.  She continues to remain seizure free 71 days 8 hours and 26 minutes.

In 2016, Sonzee encountered her most hospital admissions (6 times) and longest lengths of stays at a hospital (28 days), countless bouts of viruses, colds, and infections, and longest consecutive time spent on antibiotics.  Sonzee spent too many hours in pain and uncomfortable for me to want to remember.  Overall 2016 was not a healthy year for Sonze.

2016 was the year Sonzee's CVI (cortical vision impairment) improved from a 2/10 to 6/10, and she received her first pair of glasses.  While there are no huge developmental milestones for little bear, her core strength has improved tremendously and the bottoms of her feet have some resistance when they are pushed against.  She continues to roll in both directions and she is able to grasp hanging objects and hit them.  With the gains she has made this year there is no saying where she will be in the year to come.


As 2016 comes to a close, I am left with immense gratitude that Sonzee is able to physically welcome 2017 with us, because there are too many mothers tonight not afforded this opportunity.  To all of those whom I know, my heart is thinking of you and your baby's tonight.  2016 is not a year I wish to repeat, but as I sit here tonight, I am filled with a renewed sense of strength and hope for where 2017 will take us and I look forward to this chapter of Sonya's Story and hope you come along with us. 


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Wednesday, December 28, 2016

It is what it is...for now

It's been 22.5 months since Sonzee started us on this unique journey of ours. It didn't start out as a special needs lifestyle, just as a "sick child" journey, but quickly turned into one.  Along the way my relationships with others have changed and I assume they will continuously.  Having a special needs child does that.  It pretty much takes the life you were living and thought you would live and exchanges it for something...different.

It is a weird place I have found myself in.  I want to have friends who have typical children in my life, but some days I don't want to see all of the "normal" parenting issues.  On some days it takes a special amount of strength to be empathetic to a friend who only has typical children.  It's also challenging to maintain relationships with others who don't have a medically complex kid because no matter what they just don't understand our position.  

On the other hand, it is suffocating to live in the land of medically complex.  There are only so many times my brain can process a child's death or the detrimental way a common cold can impact a child with complex needs.  I cannot be sane if all I am exposed to are the negative realities of sick children.  Yet these moms are the only ones who do get it on all levels.  We may not have children with the same conditions, but we all understand life in a different way than prior to what we live now.

I continue to see my Facebook feed fill up with brand new healthy babies, I am so happy for my friends, but I also wonder "why us?"and "What would our life look like had Sonzee been born without the mutation?"  I am not jealous in the sense that I wish Sonzee wasn't Sonzee, but I do have days of resentment.  Maybe that makes me a bad person?  Maybe over time that will change?  For now I guess, it is what it is.


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Sunday, December 25, 2016

Aha moment

As Sonzee continues to get older we encounter new experiences in a special needs world that we honestly never gave much thought to prior.  Sure I've seen handicapped restrooms and of course the parking spaces.  I never personally considered these to be "conveniences" to those who need them, but there are times now that I definitely consider them a perk.  A consolation prize if you will.  The thing is that while there are these "prizes" there are the obstacles I never once considered.  

We boarded our flight to Florida this morning and I recently realized that we could take advantage of the pre-boarding option with Sonze.  The added benefit of her medical supplies not counting as a bag would have been spectacular except that we flew southwest, so all of our bags flew free regardless.  Nevertheless, I consider that in the future to be a definite plus.  The flight was actually amazing, all children earned gold stars and Sonzee played in her seat and occasionally took little naps, a perfect traveler in my book.  During the flight I decided to change Sonzee's diaper and so feeding bag and all, we made our way to the back of the plane.

There is one restroom that has an infant changing table..."table" is honestly being kind as its really a 16 x 20 plastic fold out tray.  While Sonzee has grown, it's one of those times I am actually thankful for her "Failure to thrive" diagnoses.  In the small confined space is when it dawns on me, "what do we do when she's bigger?"  I step out of the restroom and ask the 3 flight attendants in the rear my question, "My daughter has special needs, what do I do when she isn't able to fit on the changing table?  Are we not able to fly anymore?" (There was no sarcasm in that last part) All of them gave me puzzled expressions while admitting it was a great question, but they honestly couldn't give me a straight answer.  One suggested the floor, while the other said "maybe in a row".  My next question, "is it even allowed to change a child in the seat?".  The conversation ended with I should call southwest, but that it was a great question. Yay?!?

Sometime later one of the flight attendants came to me and gave me phone numbers for the disability department.  I am honestly preparing myself for them to tell me that at a certain point changing a diaper mid flight will no longer be an option for us so we should consider smaller flights or connections.  It's during these more "aha moments" that no perk of this life is actually a perk.  It's all just heartbreaking.  It isn't even about the fact that she won't be potty trained for a decade or if for her at all.  It is just a reminder of all of the challenges she and therefore we will face as she continues to get older.  The realization of what it truly means to always have a baby.  The fear, heartbreak, and multitude of emotions that accompany this realization are just a lot to take in.  So for now we will enjoy this trip to Florida and take the future as it comes, but for sure in baby steps.

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Wednesday, December 21, 2016

Tough times...

It's another one of the times while on this journey that I don't dare think "it can't get worse", but rather wonder what exactly it will look like this time.  Whenever the incessant crying begins things always go down hill and rather quickly.  Maybe it is because I am grappling for something to hold onto that makes the fall feel that much quicker or maybe it is just that my patience and ability to cope at this point has evaporated even faster.  This. Is. Hard.  (Yes, I did just write one word sentences)  I never assumed that it would be easy, but I didn't really understand this version of hard.  Sadly, there is a mom reading this with a tear in her eyes thinking..."you have no idea".

This is such a painful journey.  It hurts on a physical and emotional level like nothing else and sadly there is no outcome that could change that.  I cherish the days that are good and result in Sonzee smiles and giggles, just as much as I loathe the ones spent on hours long crying sprees.  It is beyond horrific to have to see her be in such agony.  The worst part is there really is nothing we can do...we are doing everything we can, it is just that nothing is good enough, nothing works for any acceptable amount of time.  I dislike that everything with CDKL5 is trial and error, I want the "tried and true", the "sure thing".  Why doesn't that exist?

I would say "I don't know how much more of this we could all take", but I know that we will take it for as long as we have to and for as long as this is the best it can get.  I just really really hope that a happier alternative will emerge sooner rather than later.


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Monday, December 19, 2016

Blur of a week

This last week has been a complete blur. Whenever Sonzee has an intensive week of therapy the intensity isn't just during the sessions.  She has two sessions a day for five days and they are 45 minutes each, with two hours inbetween the first and second.  The sessions themselves take place in a home that is about 32 miles from our home.  We are lucky to have close friends near the area so I usually pop over inbetween and she is gracious enough to host Sonzee's older sister for a play date with her son on Tuesdays each time.  With the rest of the usual weekly insanity of kids schedules and Sonzee's appointments my ability to have a fully functioning brain at the end of the day is a tall order.  Therefore writing blog posts during those weeks are extremely challenging.  It takes me time to recoupe from intensive weeks, so much so that I can't even figure out what my thoughts are this week.  

There is so much going on with Sonzee that I am tackling each thing individually as if her life is a checklist.  This week she has multiple X-rays to check on a colon marker study that will determine the amount of time it takes for her body to process food.  She consumed 24 little round markers this morning and we will check on Wednesday to see if there are 6 or more remaining. Of course she has been screaming the majority of the time since she has eaten them and she has spit up twice.  I didn't see any markers come out though, so hopefully they stay in.  It has been four hours, I am holding my breath as this is the time in the past that her stomach decides to rid itself of its contents.  It was only an ounce at most of sweet potatoes, so I am crossing my fingers.

We have another two weeks or so for us to decide what we are going to do with switching her NJ tube (nose to intestine) to a GJ tube (stomach and intestine tube).  The pro of switching are that there will be no tube on her face and she already has the G portion, so adding in the J "shouldn't be difficult". The cons list is a bit longer.  Her current NJ tube is an 8French, which means it is very small.  The GJ tube size will be 14French at the smallest size.  With this size the opening between her stomach and intestines (pylorus) will be close to twice the size it currently is opened, which means there is a higher chance of her intestinal feeds backing up into her stomach and causing her to be in pain or to continuously vomit.  We won't know until we try, but once we do, there really is no going back.



In addition to the "typical" cdkl5 dealings we are leaving for Florida for a week and so I am trying to make sure all gifts and supplies are packed and actually remembered.  I am even packing in advance (whoah I know!).  Luckily Florida is still in the US so even if I happen to forget something we should be able to get it relatively easily.  "Lastly", I am also starting to sort through my emotions on little bear turning two in less than 2 months...but I think I am just going to put that on hold for a bit and focus on the next couple of days because my brain is only capable of so much.

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Wednesday, December 14, 2016

CBD and the DEA

As of today the DEA "has made CBD oil a little more federally illegal..." by clarifying and "reinforcing their original position that cannabis extracts, including CBD oil are all considered schedule 1 substances."  While we live in a state that allows for the use of medical marijuana with the  proper licensure and the CBD oil that Sonya uses is a hemp based CBD that imports it's seed and stock from Europe and this clarification might not impact is, it does for many of other children using whole plant products produced in the US. 

Prior to the birth of Sonzee, Sam and I watched a documentary on a marijuana based epilepsy treatment developed by the Stanley brothers in Colorado for a little girl named Charlotte who suffered from 300+ seizures daily due to Dravet syndrome.  I remember watching the documentary and feeling heart broken for the family.  


After Sonya developed seizures and the pharmaceuticals couldn't put up even a decent fight, Sam and I immediately discussed medical marijuana as an option.  Her first neurologist was less than helpful, we decided it didn't matter.  We received support from family and friends.  We didn't need either, but it was appreciated as it made us feel less dirty.  I often wonder why some people might question our parenting choices of using a marijuana or hemp based cbd medicine but don't mind that her FDA approved meds come with huge red stickers with the words HAZARDOUS written on them.

What I would love to ask a person against cbd products for children is simply, are you a parent?  If you are a parent, what wouldn't you do for your child?  If you don't have a medically involved child this next question could be a challenge, but I want you to put yourself in the place of a desperate parent.  YOU have to watch your child suffer, YOU have followed all of the doctors recommendations, and YOU are told that there is NOTHING else they have to offer you.  Are you going to tell me honestly that your religious or whatever values you hold to would keep you from HELPING your child?? 

I would never wish a sick child on anyone, but I do wish there was more empathy amongst our lawmakers.

Please share this post to help spread awareness!

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Monday, December 12, 2016

Less than a year ago...

Less than a year ago I read a post on a fellow CDKL5 child's facebook support page that made my heart race and panic set in.  It was the night that Harper's mom Penny wrote that Harper was sick and that she was in the PICU.  I was so beside myself I didn't know what else to do other than write.  It was the only way I knew how to get my thoughts organized and the only way I felt like I could help because others read my blog posts and that would mean more prayers would be sent up.

At this moment I honestly feel like copying and pasting the first four paragraphs of that post.  I have no better way of expressing my thoughts right now.  Again, I find myself empty and broken.  There is yet again another child with CDKL5 being transferred to the children's hospital, in fact this time it is actually Sonzee's children's hospital.  It started as a fever and what we know is that Sonzee's CDKL5 sister, Lily, is very sick.  My brain is again clouded but this time more so with confusion.  How does a "simple" cold/fever become complex in a matter of minutes.  Why do our girls hide things so well?

I have my usual assortment of emotions; fear, panic, and sadness ranking among the top.  The shock component has sadly dissipated after living 20 months of life with a child who has a CDKL5 mutation.  Tonight my heart is breaking specifically for Lily and her family.  Lily's mom Kim was the first CDKL5 mom who I met in person.  She came to PCH during one of Sonzee's first hospitalizations shortly after her diagnosis.  She sat with Sam and I for a long time.  She is one of the sweetest and selfless people I have ever met.

Again I feel helpless and all I can do is pray for a miracle and hope to reach enough people who will do the same.  CDKL5 does not just take away the ability for our children to do daily tasks; it causes many tears and breaks an unnecessary amount of hearts far too often.  

Please pray for Lily and her family tonight.  Please pray that she can overcome this sickness and that my follow up post(s) will only be good news moving forward.  Please pray for the CDKL5 community tonight as we rally around our CDKL5 daughter and sister, Lily, as well as her family.


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Thursday, December 8, 2016

Tears

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

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

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


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

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Wednesday, December 7, 2016

Blurred Boundaries

With my three older children I visit their respective pediatricians one to three times a year and once a year my son has a routine cardiologist appointment.  There has never been an issue with either of them (thankfully) that couldn't be handled by the after hours on call doctor or couldn't wait for regular office hours.  I do not have e-mail access nor private phone numbers for them, but that is okay because I do not need this type of special access.  Then there is the Sonze.  I have emails, cell phone numbers, direct office lines, etc to all of her practitioners.  As a daughter of a medical doctor, I do my best to respect that all of her doctors have families and lives outside of their offices, but as a mother of a medically complex child I find myself worrying that I am crossing the line.

I realize I have this access because I am trusted to not abuse the honor and I really do my best not to, but sometimes I wonder if my emails of "urgency" are overstepping the privileges I have been given.  I wonder if I am being too annoying.  I worry that when my email pops up in their inbox at all hours of the day that they roll their eyes or think about "kicking me off of the team".  It is another dilemma I find myself in learning how to maneuver through this special needs parenting world.

Yet here I am at home with little bear and she is in pain.  Pain that I know is related to her GI discomforts, but yet we don't know why it is occurring.  Her crying ebbs and flows, and she has moments of smiles and joy and then immediately they turn to screams of pain.  The screaming can last four hours on end and the only thing I can do is send an email or a text begging for help.  They always offer suggestions and a plan, and I am appreciative her team ALWAYS replies no matter the day or time, I just hope I am not overstepping any boundaries.


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Monday, December 5, 2016

Battles

It is Monday afternoon and I am exhausted.  It was yet again another sleepless night with little bear and her constant screams of pain.  It is beyond frustrating that whatever remedy we find for her works only temporarily.  Her GI doctor has called in another antibiotic that helps with balancing out the bacteria in her gut and her palliative care doctor has told us to go ahead and increase her Gabapentin for the pain.  The GI and neurological systems are so tightly woven that in Sonzee's case the slightest bit of GI movement sends her nerve endings into a tizzy.  I was so naive to think that if we could only control her seizures that her life would be smoother sailing.

Her life is a series of battles.  Every time I think we have tackled one successfully, another one begins.  There is no time to celebrate and there is nothing it seems that we can do to prevent them from happening.  All of these battles keep continuing back to back and we are running out of supplies, I am running out of energy, and my sanity is on the verge of nonexistence having to listen to screaming and crying for hours on end each day.  It is taxing to keep living like this.  I honestly do not know how little bear does it, how do any of these children do it?

I remember when seizures were our biggest fear and threat.  When I thought nothing could possibly be worse than watching her have multiple ones a day.  I was wrong.  What is worse than watching her have constant seizures is having her be miserable screaming in pain for the majority of the day and night.  It is far worse having her cry and me not being able to do anything for her but just listen.  I cannot fix this.  I won't ever be able to fix this.  All of these battles, and there is no chance of ever winning the war.


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Friday, December 2, 2016

Off the sidelines

I follow a lot of stories of children who have terminal illnesses, developmental disabilities, chromosomal abnormalities, rare genetic disorders, etc.  I try not to become too involved because living a similar life as some of the families can make it challenging for me to separate our life from theirs.  It can be suffocating to see a child dying from a similar disorder as Sonze, and it can be equally challenging to see a child who has been affected far less than her.  So for my sanity, I try to at a minimum show support and pop in because I do genuinely care about each child, but I don't get too involved.

A common theme among all of us special needs parents is the overall feeling of helplessness.  There is nothing I have experienced in my lifetime as unbearable as watching your child suffer but not being able to do anything about it.  You literally have to sit by and watch.  I remember when my first child began to walk and she ran into walls, when she went to the park and I was afraid she would fall.  The feeling is the same,  you know you have to let them learn on their own, but your first instinct is just in and "save" them.  It's similar but much worse when you are watching your child suffer from pain, when you watch your child have seizures, when you watch them deteriorate before your eyes, and I don't want to imagine, but can only assume as you watch your child slowly slip away, and not be able to do anything to stop any of the above.



One of my main purposes of Sonya's Story is to raise awareness.  I hope that all of you understand the reasons behind when I or another parent of a "rare" or sick child asks for donations, asks for you to buy/wear apparel, or bombards you to with pictures or stories explaining their child's condition and overall progress.  For me, it is a way to feel like I am doing my part to not just stand by and watch.  I hope you can put yourselves in my/our position and TRULY KNOW that YOU would be doing the exact same thing.  During this holiday season you might begin to see more campaigns to help support rare disorders or to help a child in need.  You might be asked to support more causes financially or to share posts and information.  This is one way of how we as parents cope with the helplessness.  It is the way we hope to bring awareness and maybe it will bring us a cure.  It is the way we feel like we might actually be doing more than just sitting on the sidelines.  

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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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Monday, October 31, 2016

Complicated expectations

Often times my posts are written in my head while I am out and about as the random thoughts filter through my mind.  Some of the time I actually find myself smirking realizing all of the craziness that is occurring in my head during that time.  It is completely baffling to me how one minute I am "worried" about Sonzee's developmental milestone achievement and then a moment later her milestones are the most distant thoughts as I am overwhelmed with happiness that she is just breathing and we aren't at the top of the coaster looking at the end of the track.

This honestly happens multiple times throughout my day.  Thoughts that contradict themselves bombard my brain and confuse me to the nth degree.  To give it a visual representation, imagine that you are standing in a dark room and there are thousands of words flying at you from all angles.  Some of the words are huge, others are tiny, but all of them are white and bright.  They go by so quickly it can be hard to make out what they say.  It makes processing what I really feel an extremely daunting task.  I have to yell at myself to focus if I want to make any sense out of the situation.  Then I start to dissect my thoughts.  "Should I think this?"  "Shouldn't I just be happy with where things are?"  "There are other children worse off.  She has been worse off."  Etc. Etc. Etc.

It is when things are seemingly stable that I am less afraid to admit to myself that I wish my 20 month old would be able to sit on her own.  I know I am allowed to acknowledge this feeling, and I know it is acceptable, but I feel petty a lot of the time for caring about her accomplishing milestones.  For each thought that pops into my mind, its counterpart is right there by its side.  "I wish she would not succumb to the typical stereotypies and sensory issues of having a CDKL5 disorder, such as hand chewing."  (That really is so benign, why does it bother me?)  "I wish she would bear weight on her legs", (they are getting stronger).  "I wish she would notice me when I look at her face", (but if I make noise she does).  "I wish she would show her siblings that she loves them", (On occasions when our oldest plays with her arms and talks to her excitedly, Sonzee gives her the biggest grin).  My mind is constantly playing devil’s advocate with itself.  The reality of this life and the guilt for feeling unsatisfied at times are so intertwined with one another.


I want her to just be normal, but I want her to be who she is meant to be.  I really do not have any specific expectations when it comes to what Sonzee will achieve in her lifetime.  We meet every 6 months to create goals for her and most of the time we just keep them the same because they have not been met.  I have hopes and dreams galore, but who knows when or if they will be accomplished.  I do not want her to ever feel like she has let me down nor do I want to place unnecessary pressure on her, and I want what any parent wants from their child...for her to grow up and be happy.  It is annoying to me that every single aspect of her life has to be so complicated.  


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Friday, October 28, 2016

Fall

We are officially a little over a month into the fall season.  Earlier sunsets, leaves changing color and air temperatures are becoming cooler.  Pumpkin spiced lattes and various apple-flavored items have taken over every menu.  October has almost concluded, Halloween is around the corner, then Thanksgiving, and in a blink of an eye the holiday season will upon us.  You can feel the joy in the air, the eagerness, and anticipation of holiday shopping, but scrolling through our CDKL5 parent support page things are not the same.  Fall to me is the season where the fear of the unpredictable course of CDKL5 starts to say, "beware".

Last fall and winter were by far the worst seasons for many families in our CDKL5 community.  Fall is when the health of many of our children starts to change.  It is when illnesses run rampant and that "simple sniffle" and "common cold" become deadly for many of our children.  As the days pass, more parents of the children in our CDKL5 family are asking for prayers as their child is being transported to the hospital for increased seizure activity, lethargy, and health issues in general.  It is the season (for me) that I wait with baited breath to see which family will become part of the elite group that no one wants to join.  I am not naive to think it will not be us, but like the rest of our extended CDKL5 family, we pray this year we will be spared.


It is morbid, yes, but for families with medically complex and fragile children it is our reality.  I am not by any means consumed with these thoughts 24/7, but I cannot lie and pretend that I am not slightly panicking on the inside.  I cannot say that with Sonzee's complete 180 degree turn in the past week that I am not haunted with the thoughts that I am missing something.  A curse of CDKL5 is how our warrior children can present so well but be so broken on the inside.  I fear what I could be missing.  In 95% of life staying simple is a pathway to success, but when dealing with CDKL5 nothing is ever simple.

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Wednesday, October 26, 2016

Not Today.

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

This week sucks.

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

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

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

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