Friday, November 17, 2017

A new form of guilt....

Within the next 2 weeks or so our little bear is going to become a big sister.  I am eager and excited about this new addition to our family, yet I have not even packed my bag.  (Full disclosure, I packed for Sonzee while in labor and running out the door).  I really am looking forward to everything that comes with having a newborn baby, but despite the typical massive amount of pregnancy hormones circulating within my body,  there is a cloud of guilt and sadness hanging over me.  I do not want to assume everyone who follows Sonya's Story understands the needs of a child like our dear Sonzee bear.  I do not want to assume everyone knows how much care she requires.  I try not to mention the sleepless nights encountered due to her constant alarming pulse oximeter letting me know her heartrate has skyrocketted (or on some occasions her oxygen has plumetted) and she is having another seizure.  She is dependent on every level.  She is unable to be left alone, she has to be buckled into swings and bouncers at all times.  She is unable to be placed on the ground in a seated position "for just one minute" so something can be grabbed.  She is unable to feed herself, and in fact in her case, her food bypasses her stomach and goes directly into her intestines so she doesn't eat in the typical fashion.  Her tube feedings are prepared in advanced and placed in the fridge and refilled periodically throughout the day and the night due to a continuous 20 hour a day feed.   She requires medications, patching, and various position changes throughout the day on top of the daily needs of a child.  Her needs are that of a newborn baby, in all ways, literally.   

It was decided shortly after we found out I was pregnant that we would need extra help around baby's arrival.  When you have a Sonzee bear, you can't rely on family to take care of her needs, it wouldn't be fair with everything they have going on.  Thankfully here in Phoenix we have a place I have mentioned previously called, The Ryan House, where you can send your child if he/she is diagnosed with a "life limiting" journey.  They give you 28 days a year where you can send your child and he/she can be surrounded by nurses and volunteers in a loving/caring environment who will give your child the 24 hour care required to provide some respite to families.  Since they fill up quickly, back in May I called up and booked Sonzee for the last week of November, a weekend at home, and then the first week of December.  We had our phone call with the head nurse Wednesday, we updated her medication list, and we are now down to her first check-in in just 10 days, and my heart is breaking.

I realize my limitations of being able to care for 3 typical older children, a Sonzee, and a newborn baby simultaneously in the first couple of weeks.  I know deep down this is the best place for her to ensure she receives the care she deserves and requires and all of our other children do as well.  We are able to take her in and out of the Ryan House as long as she returns to sleep.  Her nurses are able to be with her on their regular schedules.  She is literally in the building next to the hospital I will be delivering the baby at.  There is really nothing negative about the setup, except the amount of guilt I feel over having to place one of my children outside of my house to welcome a new one.  I am not the only person to have a special needs child, other children, and be welcoming a new baby...I feel like I should be able to handle it all.

For 2 years and 8 months my older children have made sacrifices because of their sister.  They have had to endure experiences no children should ever have to, and they have done it with amazing stride.  They had no choice, none of us had any choice when it came to Sonzee's diagnosis, and I have not stopped feeling an immence amount of guilt because of it all.  Yet as the days get closer to welcoming this new little person, I am scared of how it will all play out.  This is different because Sam and I made a choice to have another child despite having a Sonzee and 3 other children and with it comes a whole new form of guilt.

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Monday, November 13, 2017

I do not know the specific amount of times I have uttered the words "I quit" over the past 4 weeks.  I have actually perfected my knack for finding the perfect gif to accompany my "quitting" depending on what exactly Sonzee seizure related issue has driven me to fall to the depths.  I keep being told I am not allowed to quit, but honestly, I am losing my ability to keep running this marathon.  Consider me the person on the side in a tent drinking a very large bottle of water, procrastinating continuing the race, needing a very long pep-talk, and also a huge push to get back on the path (there inevitably was a bribe of a large glass of wine, mounds of comfort food, and someone pulling my hand).

There is no problem being persuaded to not quit, truth be told I say it because I have no other words to say, but no matter what I cannot quit.  Even though I won't ever end with the best time, and realistically there won't ever be a happy finish, giving up isn't really a viable option.  It wouldn't even make me feel good in the long run.  In my mind it is useless to keep up fighting the useless seizure control battle, but it is also impossible to not keep attempting to break them down.  

I know this is a losing battle.  I know we are up against a beast that is just not capable of being tamed.  I know the havoc these episodes cause to her little brain are irreversible and detrimental.  I know how all of these medications we give to her are just poisoning her body and even if they are helping to an extent, they aren't a solid match.   The constant battle of having a CDKL5 mutation will always be one filled with the painstaking process of trial and error, but quitting isn't going to change that.

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Thursday, November 2, 2017

Spoken Words

Before we left the PEMU last week our epileptologist came in to discuss the results of the previous 24 hours.  To say we love her is an understatement because there are no words that could adequately express our true feelings towards her dedication and treatment towards us and Sonzee since we transfered to her care following a PEMU stay in July of 2015.  She is no ordinary doctor; she spends so much time talking with us one on one, answering emails, and visiting us in person when she isn't even the doctor on call.  I am not sure if it is just her personality or all epileptologists in general, but I am so thankful every day that she is the one we have on our side during this journey.

As we were discussing the clusters of epileptic spasms that "she doesn't like", but that we "shouldn't treat with rescue meds" because there are so many and all it would do is have Sonzee fall asleep and wake up and repeat; as a team we decided to turn off Sonzee's VNS, and maybe a 2 week reboot of her system would somehow do the trick and get her some semblance of control.  Within 5 minutes of turning off the device, Sonzee had one of her "typical" big seizures.  These are our normal, part of our daily routine, "whatever, this is our life" type of seizure and so I continue to carry on the conversation while Sonzee seizes and I stroke her body.  Her doctor looks at me and has a vacant, heart broken look on her face, and says "I don't know how you do this, and I am so sorry".  I shrugged my sholders and said "eh, this is life", and then thought about her words as my heart broke for her.

I did not choose to have a child who would experience these atrocious events.  I did not go grow up and wish to be a parent of a special needs child.  This was all given to me.  This is just part of my journey for whatever reason G-d felt necessary.  Yet here is a woman, who chose to study neurology, who decided to study an extra 2+ years to specialize in pediatric epilepsy, who takes the most challenging and complex seizure cases, who has years and years of experience, watching what I can only assume to be her billionth seizure of a child, and it's her job to find the best course of action to stop my child from seizing, but she can't, and so she tells me she is sorry.  I felt more broken for her than I ever have for myself.   I hope she realizes how amazing she really is and if I had that moment again I would look at her and say "I don't know how you do this, and I am so sorry".

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Monday, October 30, 2017


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

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

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

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

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

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Thursday, October 19, 2017


Tuesday was the first time in a long time that I waited for Sam to get home from an activity with Sonzee's sister, so I could take little bear over to the ER.  It had been so long, but the motions were so routine it was as if this was part of our daily schedule.  The same wave of feelings crashed over me, which was basically a contradiction in and of itself; a slow motion out of body experience of not wanting to go, paired with the rush of having to get there before the stranger somewhere else in the Valley who was inevitably racing to beat me, so we could both "beat the rush".  I have learned over the past 2 years and 8 months that it doesn't matter how long it has been since we have been to an ER, stayed in patient, gone for a routine appointment, the emotions and memories within won't ever go away.

You can literally see the top lights of the children's hospital from our street as you pull out of the driveway.  The drive itself is at most 10 minutes covering 4.9 miles.  Our house backs up to the freeway, so it only involves the street lights to get on and off, other than that it is a straight drive, 4 exits.  There is no thinking involved, except for the thoughts that inevitably push their way to the front of my mind.  The thoughts that bring the cloud of tears that I spend a good majority of my time pretending don't exist.  The thoughts that tear at my heart and remind me that our life won't ever resemble typical.  

It was how I scarfed down dinner and three children gave us both hugs and kisses goodnight, while one asked in a blunt manner if Sonzee would be coming home.  How none of them were phased by this event.  How I got to the second set of lights prior to turning into the hospital and I had a complete breakdown of fear wondering how this was going to work with a brand-new baby in just a few more weeks.  All these thoughts compounded with the worry of whether going was the best decision and what could possibly be causing one of her first fevers that wouldn't settle even with alternating Tylenol and Motrin.  

It was a bombardment of thoughts that wouldn't let up, the ones that don't give you a second to catch your breath, the ones that are far enough away on a daily basis that you don't feel their constant weight sitting on your chest, thankfully because it allows you to breathe.  In a simple moment you realize they never really went away, they were just hidden in a compartment to keep you sane and functioning.  It doesn't matter how much time passes or how "good things may be going", they are there like a swift punch to the gut to bring you back to the reality of the special needs life you are part of, the one that no matter what, you won't ever be able to escape.

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