Thursday, December 14, 2017


On Wednesday I took little man to his 2 week checkup.  As we walked into the room the nurse asked me if I had any concerns.  I paused for a moment as I formed the thoughts in my mind to attempt a coherent sentence aloud, and then muttered the words, "Concerns?  umm...I don't know if I would classify anything as a concern...nope".  We did the typical weigh in, head circumference, and height check, and then she said that our pediatrician would be in shortly. 

When our doctor walked in we engaged in our typical small talk and she looked over little man.  I don't know why, but every second felt like an eternity, as if her thoroughness meant she was going to tell me something was "off".  Besides commenting on his clogged tear duct and writing a script for some eye ointment, she never mentioned a concern.  Near the end of our visit I mustered the courage to bring up my "not really concerns, concerns"...

Me: "Ok, the "typical baby shakes" when do they end?" (I was relieved when her face said "you aren't crazy")
Dr. K: "Oh, those can be a couple of months",
Me: "Ok, because they are honestly making me crazy, even though they are completely different than Sonzee's 'shakes'".
Dr. K: "Well you can always send me a video"
Me: "You'll just tell me it's normal
Dr. K: "But if it makes you feel better..."
Will anything short of a PEMU stay, genetic testing, and time actually make me feel better?  Despite trusting ALL of Sonzee's doctors as much as I am capable of trusting a medical professional, words without anything tangible to back up claims will not calm my mind or fears.  Almost 3 years ago I told multiple doctors and nurses my concerns over my 20 minute old daughter and none of them listened.  The NICU nurses and doctors while amazing, never entertained seizures and Sonzee's original pediatrician also told me "you have a healthy baby" and "babies do weird things".  I don't fault any of these professionals, Sonzee is rare, early onset seizures are NOT typical, CDKL5 is NOT common; but besides having to rely on my (conflicted) gut, time, faith, and hope, I am not sure there is anything that will give me actual comfort.

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Monday, December 11, 2017

It's not just me...

Our lives forever changed when our Sonzee bear entered into this world.  It wasn't just mine and Sam's, it was also her two sisters and one brother who became immersed in a world of medical jargon, hospitalizations, and talk that is not exactly suitable for children.  They (as most children do) adapted quickly to our normal and made us as parents even more proud than we knew was possible as we watched them interact and include Sonzee in their sibling activities.  No matter what though, it never was the older sibling experience that they would have asked for.  Sonzee's oldest sister wanted (and still wants) nothing more than to hold her and walk around, or hold her hand and help her walk, or get on all fours and chase her around.  All of these experiences have just not been possible, and while sad, our oldest as resilient as anything, has made the best out of the situation.

When our oldest found out we were expecting this time she was so excited, I was so excited at the hope of providing her a new healthy sibling that she could tote around and interact with in a more typical manner.  Apprehensive but optimistic we answered her with "g-d willingly yes", and "hopefully that will be the case", as she asked if she would be able to do all the things she isn't able to with Sonzee.  Fast forward to 3am on the morning her baby brother was born.  She was too tired to sleep once she woke up and found our baby sitter in our house and so when Sam went home to grab some items the first question he was met with was, "Does baby have CDKL5?"

We did a screening during our pregnancy which indicated at 97% her baby brother does not have CDKL5, so Sam told her g-d willingly no.  I don't think I mentioned to anyone that our oldest asked that question because I was honestly so heartbroken about it.  I wasn't heartbroken that she was concerned or that she asked in general, I was heart broken because with her asking that question it showed me just how impacted she has been by her sisters diagnosis.  In her almost 8 year old way, she let us know she too is scared of her baby brother not being typical and or healthy.  I honestly can't and don't blame her, as a parent I am petrified of anything being "off" with this little dude.  It is just part of the everlasting scarring that is brought into a family once they become a rare statistic.

As my oldest holds the baby and he makes random, jerking movements more than once she has either stated "that looks like a seizure ema", or "is that a seizure".  I have to admit my heart skips a beat each time she mentions it, yet attribute it to any potential denial or overt confidence in my gut, but I assure her that "babies do weird things".  I am continually talking myself off the proverbial ledge of panic attacks, and have managed to have only 1.5 in his 12 days of life, I will take that as a success.  Thankfully our pediatrician understands and is quick to reply to my messages of panic.  I think it is going to take us all some time to accept that our little guy is (appearing) healthy and (g-d willingly) typical.  While there is some comfort that it is not just me, I so wish it wasn't my 7 year old who is laced with this same burden.

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Thursday, December 7, 2017


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 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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