Thursday, December 7, 2017

Adjusting...

It has been a week since we brought home our new little man.  A week of adjustments for Sonzee and for our parenting of her.  She has been receiving extra love while in and out of the Ryan House and we couldn't be more thankful for having such a facility to help us care for her.  Her seizures have continued to be atrocious and I have already sat on the floor breastfeeding a newborn while consoling her and simultaneously crying.  Honestly the weight of it all at times is a bit much.  I have found myself wondering "why her?" and "why us?" more often than not.  

I know this newborn stage will fly by for our little man and I am torn on wanting to cherish and pause every second of it all and wanting it to fly by to be a bit more manageable for myself.  My heart is in a constant battle with itself bursting with joy and sadness literally in the same seconds.  Watching little man perform a simple task of moving his eyes in a way that Sonzee never did, focusing on my face with the blank newborn look of curiosity, another thing Sonzee never did.  All these small little things that he is doing that had me on edge with Sonzee because "something just wasn't right".  My heart simply hurts for her, for what she must endure, for what she doesn't get to do, for what her siblings won't have with her, for what I can't change or fix, for what we missed out on together.


I know the next couple of weeks will involve a lot of tears, both happy and sad, as we learn how to balance our "new normal".  I know it will be filled with a multitude of smiles and some stings to the heart.  I know it will be filled with a mixture of doubt and worry, deep breaths, and confidence that things will work out positively as I slowly learn to overcome the fears brought on by having a newborn turn out to be a statistic.  I know this part of our journey is going to be filled with difficulties, different trials and errors, and a good portion of mommy guilt...but then I have to ask myself, what journey isn't?

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Friday, December 1, 2017

Facing Facts

I am sitting in my newly renovated master bedroom, listening to the musical sounds coming from a swinging baby cradle swing holding a 67-hour old baby boy, and diagonal from another newly renovated space whose occupant is currently sleeping downtown.  It is probably not a fair week to judge me on my emotions, but my heart is bursting at the seams and simultaneously broken into pieces.  Most of these emotions I expected, but then there are the others, the sneaky ones, the ones that I wasn't aware even existed.

We introduced Sonzee's baby brother to all his siblings when he was about 14 hours old.  He was sleeping and content and doing exactly what a typical newborn baby should be doing.  He wasn't hooked up to any oxygen or receiving any antibiotics, and he didn't provide me with that lingering feeling of "something just is not right".  Our oldest two children were beyond excited to run over to the bassinet and see him inside, while our third child was a bit nervous and reserved.  Then there was Sonzee, sitting in her wheelchair, kicking her feet, moving her body, and I wondered, "Does she know what's going on?".  I quickly moved on from that thought, because honestly what almost three-year-old really understands the gravity of what having a new sibling means?!

Each sibling took turns saying, "hi baby", patting him, and holding him, and before it got too crazy I wanted a picture of my 5 babies, so I gave our oldest our youngest and I snapped about 40 pictures.  My heart exploding the entire time as I sat with them all, and then it was time for everyone to go home and get ready for bed.  After they left I took out my phone and reviewed the pictures of the meet and greet.  They are some of my most favorite pictures on a whole, but then it hit me like running into a brick wall.  4 out of 5 of our kids were sitting on the bed, while Sonzee was in her wheelchair.  In that moment it was a colossal explosion in my brain.  

I could have 10 more children, but none of them are going to make her typical.  Did I subconsciously think that a healthy child would erase the last 2 years and 9 months of pain I have experienced by watching her endure all she has?  Did I think that a new baby would suddenly cure her of her CDKL5 mutation and she would get up and jump on the bed with her siblings?  Did I think the memories of her NICU stay and the initial unknown worry, panic, fear, and confusion surrounding her first hours of life would be replaced by a new experience?  What exactly did I think would happen when this little man was born (g-d willingly) healthy?  


When Sonzee was the youngest her experiences were removed from those of her siblings.  There are years between when she should have completed certain skills and the moments her older siblings mastered them.  When I see other children Sonzee's age it doesn't bring me pain, and I have 3 other typical children I can quickly swap out the experience with, so I am no longer focused on "what if that were Sonzee?".  I don't think I fully realized that by having these amazingly positive experiences as we move forward, I will now have to really deal with the pain and the heartache of what we never had and won't have with our Sonzee.



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Saturday, November 25, 2017

Epilepsy Blog Relay November Post: Creativity & Epilepsy: Poem

This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!

I wish that the seizures would just stop and go away,
They always wreak their havoc whenever she's trying to play.
They make their grand debut in any manner that they please,
Resulting in a watch and wait scenario that causes all to freeze.

When the random jolts and movements have finally come to an end,
We sit and stare and process all that occured trying to comprehend.
Why do they keep occuring? How is this even right? 
It doesn't matter what we do, we seem to keep on losing this futile fight.

As parents we do what we think is best and throw everything we've got,
Medications, surgeries, alternative attempts, anything to give our kids a shot.
Some relief might be temporary but it never lasts long enough,
Thankfully our kids are resilient, brave, and extremely tough.

One day there might come a time when these events will no longer occur,
Unfortunately waiting any more time for this to happen is not something we parents prefer.
In the meantime we will keep on trying to do our very best
to put up with these episodes and continue on our epilepsy halting quest.


NEXT UP: Be sure to check out the next post tomorrow by David Monnerat at www.epilepsydad.com. For the full schedule of bloggers visit Living Well With Epilepsy Blog Relay.
TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.
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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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