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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