2019

I have been thinking about this post for the last couple of days, thinking how different this one feels to write compared to the previous four year in review posts.  While it has been just another year filled with too many doctors visits to count, approximately 15 or more ER visits, multiple procedures, two potential sepsis' due to central line hospital admissions, PEMU stays, routine meetings, nursing challenges, out of state hospital adventures, and the usual major decision making, it has also been a year that has provided some more specific directions for how we continue our care for Sonzee.

This year we were able to find a seizure tracking device that is actually able to detect Sonzee's bigger seizure types due to a company that was willing to give us a company laptop and the go-ahead to keep it until we figured out the best algorithm for it.  We are so appreciative for this peace of mind we have been given.  2019 was by far the worst year of seizures for her, and despite my firm stance on not trialing another medication, I gave in and it sadly turned out the way I anticipated.  She has had twice the amount of seizures than she did in 2016 and over 160 more than last year.  We end the year with her on 2 high doses of anti-epileptic medications, a rapid cycling VNS, and still no seizure freedom in view. 

2019 was the first entire year of her life she spent with a central line and one that was accessed 269 days of the year.  Having a port afforded her the opportunity of adequate nutrition, the ability to avoid multiple hospital admissions due to the ability to treat her with fluids at home, 1.5 times her hydration needs, and to still spend approximately 60 days in the pool getting her swim on; however, it resulted in at least 52 needle insertions and allergic or adverse reactions to numbing creams and antimicrobial patches.  Via her port Sonzee received Total Parenteral Nutrition (TPN) and Lipids in addition to her intestinal feeds and gained 4.2 pounds and approximately 7 centimeters.  However, nothing is ever without a cost, and so we also learned this year that she is anemic and for the majority of the year was Fatty acid deficient.  She is currently on or has had treatments to ensure neither becomes a problem in the future.

In 2019 it was confirmed her bone density is due solely to her CDKL5 mutation as her other genetic panels revealed no other genetic mutations.  Throughout 2019 she only suffered two new spinal fractures and one tibia fracture in January, but as of her March scans all bones were healing appropriately and she has (thankfully) not suffered ANY fractures that we are aware of.  In 2019 we learned her DEXA score is -11.8, which places her in the severe osteoporosis category (anything -2.5 and beyond is osteoporosis) and she is her endocrinologist's all-time 2nd worse DEXA scoring patient (yay?!)  During 2019 Sonzee traveled for the 3rd time to the CDKL5 Clinic of Excellence in Denver Colorado, gained a new interventional radiologist at Columbia Presbyterian in NYC, and added another orthopedic doctor here in Phoenix.

During 2019 Sonzee gained a new home health nurse and then 8 months later lost that same nurse so she can could further her career, but her favorite and first nurse since she started with home health nursing became her main and only nurse.  We also sadly lost our favorite clinical nursing supervisor with our agency due to scheduling, and also had yet another change with her DDD supervisor, but we are learning to adapt to these types of changes better.

In 2019 we learned that Sonzee's CVI score drastically fell from a 5 or 6 down to a 1 or 2 despite the fact that CVI scores do not typically worsen (unless there are extenuating circumstances), but she has managed to thankfully be a solid 2 out of 10 based on her December Opthalmology visit.  This, unfortunately, has left her with limited desire/ability to utilize her Tobii eye gaze device and so it sadly sits collecting dust in her room.  During her recent eye visit, we were also given instructions to begin patching again to try and help her better utilize what sight she has with fewer distractions.

The most challenging part of 2019 was watching Sonzee begin a steady decline in all areas of her health and visible zest for life.  2019 led Sam and I to many difficult tear-filled discussions and arguments with multiple professionals in order to determine what is really the best for Sonzee.  We signed a DNR and made the decision to treat her at home and avoid the hospital at all costs.  While the decisions were not easy to make and put a lump in my throat, we know this is for the best for her.  2019 was the year we fully began to fully embrace palliative care on a different level.  It was the year we refused treatments based on our confidence in knowing Sonzee best and with no regret, but with a tinge of sadness lingering in the air over the situation itself.

It is hard to say whether 2019 was Sonzee's worst year, she has had so many rough times during each of her years, I cannot say one full year was actually the worst, but I can say this year was certainly not her best.  I can say with assurance that as we close out this year, it is the one that leaves me feeling the saddest about where we currently stand, and extremely hesitant for what will come.  I feel like 2019 took a lot from our little bear, and along with it a lot of my faith, hope, and what limited positive outlook I might have been hanging on to.  2019 is another chapter I am glad to be turning the page on, but if I am honest, scared to be doing at the same time.  We have enough years under our belts to know better than to ask for calmness or for CDKL5 to be kinder to us, so for 2020, I will ask that whatever happens, I am able to see and truly believe happened for the best.

May 23

May 23 seems to be a difficult day every year.  It is really odd considering it is the birthday of Sonzee's middle sister, so you would think it would only be a day of complete celebration, but that is mainly the reason that it is not.  This date every year has become one of those reminder days.  A day that reminds me of how much our kids, especially our 3rd have had to sacrifice since the birth of Sonzee.  A birthday that was celebrated only one time before Sonzee was here.  Which means this year it has been 5 middle sister birthday's that have gone by since.  Which equates to essentially her early childhood years (and even her birthday itself in 2016) have been spent in and out of hospitals as a sibling in tow.

Sonzee's middle sister has always taken the role of big sister seriously.  Prior to even turning 2 or being potty trained, she learned how to identify and notify us of Sonzee having a seizure.  That means on top of the typical things she has learned over the last 6 years, she has spent over 4 of them gaining medical and life knowledge she should not be exposed to.  Due to her being so young and not not in school in 2015, she was the only sibling to see Sonzee outside of the NICU the day she was born before she was sent up 2 hours after her birth.  She bonded with her in 2 different NICU level nurseries and in 2 different hospitals before she celebrated her 2nd birthday.  There are numerous pictures and videos of her kissing, coddling, cheering, dancing, and playing with her.  These captured memories make me so happy to watch and yet so sad because they aren't showing what should have been typical sisterly bonding moments. 

Each year on May 23 I am reminded of how many years have truly gone by.  It is the first immediate family birthday after Sonzee's.  It is the birthday that not only ages her middle sister but also ages Sonzee.  It is the day that I am forced to realize how old everyone in this house really is.  It is the day that falls at the end of the school year where we say aloud how crazy it is that each child is going into grade xyz next year, thus making it unavoidable to realize that where Sonzee is going physically does not match up to her developmental status. May 23 is a day we recognize another journey around the sun has occurred for our middle daughter, we accept that it means it was another year she was forced to grow up sooner than we had planned, and it is just another day that CDKL5 barges in and makes itself known in a random and unexpected way.

Humbled

She had two of her long seizures and too many of her cluster seizures to count.  She spent her day awake, wringing her hands, clapping, pushing her glasses off of her face, and content.  She didn't cry in pain at all and she not only stood in her gait trainer, something she has not been afforded the opportunity since the fall, she also took multiple steps.  She was proud of herself, you could see a smirk across her mouth, a look of satisfaction in her eyes, and just sheer joy come over her entire face. Her ability to literally make the best and most of her days, albeit her brain misfiring for over 25 minutes a day has me sipping my coffee in complete admiration as I'm reflecting on what she endures daily.

As her mom, I over analyze every minute of her life in general, but it wasn't until I was staring at her seizing awake from her sleep at 10:45pm that I truly comprehended how incredible of a human being she really is.  I readjusted her pulse oximeter while she seized, her values thankfully staying stable, and I was filled with this feeling of heartbrokenness mixed with complete awe.  Just hours before, we were challenging her fragile, and I am sure exhausted body, to do things the majority of us haven't had to think about doing since we were between 12-24 months old.  She rose to that challenge, she smashed the ball out of the park and gave me renewed faith in her desires.  Then she participated in a girls only dance party after dinner and didn't complain when we didn't move her into her room until after her typical bedtime.  Now here she was convulsively shaking, her limbs contorting, her mouth quivering, her eyes rolling all over, her head thrusting forward and then abruptly pulling back, and this is what she does all the time.  This is her life.

During these moments when I am reminded that her life is not about me or my feelings, or how hard watching her go through it all is, or what her missed milestones mean for me; I feel this overwhelming sense of pride and adoration towards her my heart could physically burst.  I always suspected she would bring me similar joy and delight as her siblings, but I was not sure what it would look like.  I now know that there is nothing that could make me a prouder parent than watching her literally fight to give herself a self-determined quality of life on a daily basis.  For this, I will forever be humbled.

Heartbreak again...

We got home from a wedding not too long ago and everyone dropped like flies right into bed after their showers.  That is everyone but me.  Sonzee needed her food refilled and her TPN started, so after I took care of that I came to my computer and thought about writing a blog post.  I was clicking through the years tab on the side of my screen to see how many posts I wrote in March over the years since I began blogging and then it dawned on me that in 30 minutes it will become April.  My heart skipped a beat at this realization and that pesky weight in my chest that I manage to push aside resurfaced.  It means in just 15 days it will have been 4 years since we first heard about CDKL5. 

Diagnosis Day, is probably one of my least favorite days of the year.  It is one of those anniversaries that I feel requires celebration, but yet it is a day I feel should never be honored.  Such a mixed bag of emotions.  I often wonder how it becomes April so quickly each year.  As if 365 days manage to literally speed by just to reach April 16.  It is one of those days like the birth of a child or Kindergarten graduation that you remember every detail as if it just happened yesterday.   A profound day in Sonzee's journey as well as our lives that gave us answers and a weird sense of closure yet at the same time an introduction into a world full of uncertainty, fear, and heartache that we had no idea existed. 

4 years ago we had no idea about the world that would soon be introduced to us.  A world that was existing concurrently but yet completely oblivious to our family.  A world where children were dealing with challenges we would never have even considered children would be forced to live with.  And a world where parents were making decisions that no parent should ever have to consider.  A world that I never dreamed existed because you don't even consider this sort of world will reveal itself to you or your family. 

I think about the 4 years that have gone by and I cannot even imagine what life was like without our knowledge of CDKL5.  Just 4 years ago we were strangers to the world we now only know as our world.  A world that once spoke a foreign language but yet is now the only language we understand.  A world that we couldn't comprehend and we weren't sure where we quite fit in, but yet the only world we now feel comfortable and understood.  A world where the bonds we make with others on the same or similar journey will far surpass those that could ever be created between those who can't imagine. 

Prior to April 16, 2015, I couldn't imagine, rather didn't want to imagine what CDKL5 was, or how a parent could parent a child diagnosed with something as challenging and horrific.  Yet, here I am, and here we are just 15 days away from the day that changed our lives forever.  While I feel grateful we didn't have to wait long to get our answer, I am still just as devastated, just as clueless, and just as broken as I was sitting in the car reading the list of items Sonzee most probably wouldn't do in her lifetime, because sadly...for us...for her...it was all true.

2017

As 2017 is hours away from coming to an end, so is yet another chapter in Sonya's Story.  Sitting here reviewing the past 365 days in my mind takes me on a virtual roller coaster ride complete with flashbacks.  It is always amazing to me how quickly the time has flown but how slow it feels like it is moving at the same time.  Just a year ago I was sitting at my computer writing 2016's end of the year post without a brand new baby in my arms, unsure of the trajectory of 2017, but hopeful because as of press time 2016 Sonzee was seizure free 71 days 8 hours and 26 minutes and she was alive after a touch and go 2016.  Her seizure control would last another 10 days and over the course of 6 weeks we would slowly lose any semblance of control.

Her struggles this year were different than in the years past and while they didn't require many emergent hospitalizations, it is hard to say that the year was any easier.  She did have her fewest emergent hospitalizations with the longest stay being only 8 consecutive days and only a handful of scheduled inpatient stays throughout the year.  Her health overall was relatively stable and while we didn't receive answers for everything, we did learn that her stomach dismotility was not a result of Sam's or my decisions and just part of the luck that came with her CDKL5 mutation.  The jury is still out on if that brings me any sort of peace.

In 2017 Sonzee's CVI score remained unchanged from 4/5 out of 10, and we learned she developed optic nerve damage in her eye due to her 6-month stint on Sabril.  She wore her glasses regularly and we patched her eyes 15 minutes each every day.  Her physical development was mainly unchanged with some decreases in head control and overall strength.  While it is challenging to say if was due to her mutation limitations, medications, or seizures none of the above aided with her gaining skills.  She is still able to roll back and forth, but I leave 2017 slightly disappointed with how that turned out.

2017 was the year we lost complete control of her seizures, going from 310 episodes in 2016 to 595 episodes.  While numb to watching these episodes on repeat daily, this was the year the deep-rooted fear of "is this the seizure that takes her" mixed with the pleads of "please take all of this away from her" planted themselves into my mind.  It was the year we were forced to use her rescue meds for the first time, and (sadly) now have to use on a weekly basis.  It was a year Sonzee failed an additional 3 seizure medications, we had to finally accept CBD wouldn't be her miracle and she underwent surgery to have the Vagal Nerve Stimulator (VNS) implanted.  It was the year we essentially threw everything we had at her seizures and inevitably fell completely short.

2017 was the year Sonzee turned two and officially became a toddler thus entering the dreaded CDKL5 toddler years.  It was the year she received her first pair of AFOs and Spio suit, two items that will provide her body added support.  She was approved for a communication device and she communicated to us she loves Bruno Mars.  It was the year she went to the dentist for the first time, experienced her first cross country road trip, and met Harper's amazing family in person.  2017 was the year Sam made me realize that no amounts of physical or alternative therapies no matter how expensive, will change who Sonzee is and we decided to encourage her love of being in pool and stopped therapies that won't necessarily be beneficial to her.  

2017 was a year that trampled my spirit to the core and the year I wrote my fewest blog posts.  It was a year that tested every single aspect of my faith and left me with pieces of doubt and many questions.  It was a year that I wanted to admit defeat and just give up on trying to beat CDKL5.  It was a year that I constantly questioned who allows a child to suffer so often and in so many ways.  It was a year that left me feeling continuously broken and challenged to find any ray of hope.  As we close out 2017 I feel my strength has been depleted and just like turning the page to the next chapter in any good book, I will wake up tomorrow in the new year of 2018, eager to see what will be written on the pages ahead.

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Clarity

Since Sonzee's CDKL5 diagnosis I have always done my best to make sure that she is looked at as "Sonzee", as an individual, as a person first before the 5-character string that sits "quietly" next to her name on every document that I fill out for her.  To be honest when a doctor uses CDKL5 as their reasoning behind whatever symptom or situation we find ourselves in, it infuriates me to no end.  I have at times considered it to be an excuse, a way for them to place a "blame" on something because they probably do not have a reason themselves as to why she is enduring so much difficulty.  

While I have always felt that her medical team has always held her best interest at heart, there have been so many instances that I felt frustrated with them, thinking that they "just didn't get it".  After all, my rationale was that despite caring for her medically, how could they possibly feel the same way about her as myself and Sam.  After all, they have so many patients, they have so many other priorities, they do not have the time to figure her out.  The situations we find ourselves in with her have taken me on one huge never-ending roller coaster of emotions and it seems around this time of year I tend to have an epiphany and continue to travel on this lengthy journey of grief.

There is usually a situation that occurs that brings the epiphany to light and this year it was our trip to the Children's Hospital of Philadelphia.  We went specifically for Gastrointestinal (GI) motility testing.  Of course, the doctors were aware of her seizures and her overall diagnosis of CDKL5, but I "strategically" did not request a neurological consult while there because I wanted us to just discuss her motility.  I did not want the "blame" to be on CDKL5, I wanted to be told something else was responsible for her situation.  I wanted to know that there was a chance that she could maybe, someday, be a bit more "typical" and tolerate food into her stomach.  Dare I say it, I wanted some "hope".

When we left Philadelphia, that is exactly what we left with, hope for the future, hope for her feeding, and hope for her to be gastrointestinally typical.  I held in my hand an extensive list of potential trials and suggestions and with uncertainty, but "hope", Sam and I walked into her Dr's office this past Friday.  We sat and discussed all of the options, we came up with "the perfect game plan", we spent a ridiculous long time asking questions and listening to what our doctor's thoughts on everything were.  These test results gave us information we never had before, a "reason" behind her issues, and simultaneously the infamous "aha moment" filled my mind as I listened to Sam's final question and heard the answer.  

"Just so we can sleep at night. (Well to be honest I have been sleeping fine), but so we can sleep at night, what these test results show is that her dysmotility was not the result of anything we did?  It was not due to us giving her steroids? It was not due to us having the g-tube placed? There was nothing we could have done to prevent this from happening?"

"No, no, nothing you could have done, this was happening regardless, even before you realized it.  This is just the result of her and the effects of CDKL5".  At that moment I realized how much Sonzee's doctor has been on our side this entire time.  It is so easy to be blind when you are living in the trenches, there is limited visibility when you live in this life.  You pick a team that will hopefully eventually help you to see through the forest.  Just as our doctor left to write out the recommendations and send us on our way I looked at Sam and asked him the question we used to never agree on.  

He went into the hallway and saw Sonzee's doctor standing by her desk and began asking her more questions, the questions that yielded the answers we needed to hear, but did not know to ask.  The answers that proved to us that our doctor was always looking out for Sonzee, but she was also supporting us on this journey.  On our quest to separate Sonzee from CDKL5 we are the ones who forgot to consider the "bigger picture".  No, CDKL5 does not define her.  Yes, despite CDKL5 she can make valuable gains.  But despite only being a 5-character string, the complications set forth from a genetic mutation such as CDKL5 create limitations that will always be present and unavoidable.  No matter what our hearts might yearn for, the specific and individual mutation makes our little bear who she is, and it is the reason she is rare, she is special, and she is HER.

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I wish...

Sometimes I wish I was a better, stronger person.  The type of person that so many special needs parents are.  The type of parent who is content with their child's progress simply because she is doing her absolute best.  The type of parent who not only finds the blessing in the life that were handed, but also appreciates it to the fullest degree.  The type of person who is not bothered by the fact that other children with their child's diagnosis have it easier or are capable of so much more.  Sometimes I wish I was a better, stronger person.

Sometimes I wish I could look at this all as a "gift".  That I am fortunate because my life now has a purpose and plenty of people live their lives without knowing what theirs is or was.  I wish I was one of those people out there who not only says or thinks that, but one who actually believes it.  I wish I did not feel like I have absolutely no control over anything in my life anymore, but more importantly, I wish I was okay with that.  I wish I could look at this all as a "gift".

Sometimes I wish I had more faith and more hope.  I wish I had more trust that things will work themselves out, and maybe even in a positive manner.  I wish I believed that even if the outcome turns out not to be what I had planned or envisioned that it is what is for the best.  I wish I had it in me to be okay with it all.  I wish I could be like so many other parents who just accept everything is what it is.  I wish I had more faith and more hope.

Sometime I wish I had four healthy children and was never introduced into this world of special needs parenting.  I wish I was not aware of the intimate details of rare disorders that happen as "flukes" or any genetic mutation for that matter.  I wish I could go back to the way it was when I had that new parent ignorance and just the slight fear that a life like this could happen to me.  I wish I did not have to try to mentally prepare myself for all the possible turns this journey might take, because honestly it is futile and the preparation will always be inadequate.  I wish that things were different, and I wish I had four healthy children.

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Feeding Tube Awareness Week 2017: Comfort with the unlikely

Over the past two years I have found comfort in the most unlikely places, in a world I never knew existed, with items I did not know how to say or spell just two years ago.  One of the most challenging things we had to do for Sonzee was get her a feeding tube.  To do so we had to overcome our doubts, our judgements, our misconceptions, our fears, and all the negative connotations that come with a piece of medical equipment used to feed a child.  I personally struggled with what people would say, how she would look, the fear of her never eating by mouth again, and the fact that even though I knew deep down it was necessary, it was not so obvious to others, creating a huge cause of disagreement between Sam and me.  

It is almost a year from the day we nearly lost Sonzee while in the pre-operation room waiting for her gtube to be placed, immediately we doubted our decision leading me to want to forget the day that led to this post.  I wish the memories of that day were not so vivid in my mind.  I will not ever be certain that the chain of events that were set into motion from that day are not responsible for the battles she now faces with her stomach.  However, I do not know if we will ever be able to hold anything other than "CDKL5" responsible for the fact that she no longer can process food in her stomach.  The disaster of the original failed gtube surgery and later complications of the PEG tube placement did nothing to calm any of the negativity I felt towards feeding tubes, after all, Sonzee's condition only worsened after its placement.  Then in May as her life hung in the balances yet again, while being placed on temporary TPN, we had no choice but to allow the doctors to try the intestinal tube that goes through her nose into her jejunum.  

I was vehemently against any feeding tube that went into the nose and would be on Sonzee's face.  My background in speech therapy led me to know that there was a higher likelihood of her losing interest in eating by mouth, and the mom in me still wanting life to appear "typical" to others, knew that a tube on a child's face would be no different than walking around with a flashing red blinking sign.  It broke my heart to know people would look at her and at once feel pity, stare, or feel uncomfortable.  Ironically 8.5 months later I cannot imagine her being alive without this tube and the comfort and security I feel because of the tube on her face for others to see is the opposite of my earlier fears.  

As I take her out of the car, when I park in a handicapped parking space, I proudly place her in her stroller with her stroller=handicap blue placard that is hanging.  It is obvious we belong in the spot and that there is something not typical about her.  My fear of stares has turned into comfort and excitement that I will have the opportunity to spread awareness of CDKL5 and find comradery among others who have traveled a feeding tube journey.  For me, the tube that goes from her nose into her intestine has become a safety net, one that I am actually afraid of ever taking away.  For her, she does not know much before the tube, and she does not express any discomfort from it.  Her desire to eat is no less because of it, and she would eat all day if her stomach allowed her to.  While I wish her body did not need this tube for survival, there will always be gratitude and appreciation towards this piece of a rubber tubing that continuously saves our Sonzee bear daily.

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Sippy cups and such

I've always considered us fortunate that Sonzee was our 4th child and 3rd daughter.  After all, that left us with three typical children and two other daughters who we could get all the standard girlie experiences with.  I have always felt that by having all four of ours we are "well rounded" because we get to experience all that parenthood and life really does have to offer.  In the past 23 months, I have never felt that I was missing out on anything because I have other children who fulfill those potential voids.  Our oldest is on the competitive dance team, she gives us a run for our money in all ways as we continue to use her as our guinea pig for learning how to parent.  Our son is into ice hockey and is our one big man on campus, so we get to learn the ropes of parenting a boy with him and all the thrills that are sure to come with that.  Our third has been rightfully nicknamed a spitfire and if you know her you are smiling at this reference because this just explains her completely.  A fun little independent ball of spunk who continues to show us we still don’t have a clue at this parenting gig.  With these three you can imagine the thrills and experiences we are getting as parents.  Getting to live through all my older children's activities, personalities, and experiences has always been "sufficient"...and then there was this past weekend.

When you have a typically healthy child who rarely gets sick, but then does and she wants to cuddle and you are already sick you just throw back the covers and invite her in.  As I laid in bed on Saturday morning with child #3, she asked me for a drink of water so I got up and went into the kitchen and found a Frozen themed sippy cup with a pink lid that I knew didn't spill or leak and brought it back filled with "cold water".  After she drank from the cup she started to talk.

M: "This is Laeya's Frozen cup, hers is pink, mine is purple" E: "Oh ya you are right this is her sippy cup" M: "Where is my purple sippy cup?" E: "You know, I am not sure where yours is" M: "Mine has Ana and Laeya's has Elsa" E: "When we feel better we will have to look for your purple Ana sippy cup".

Halfway through the conversation is when the new "aha moment" hit me.  It was as I continued to lay in bed while she drifted off to sleep that it really sunk in.  We can give Sonzee a device to communicate, and maybe (hopefully) she will eventually be able to say (or use her device to say) multiple word phrases to indicate her wants her and needs, but we most likely will never have a conversation about various sippy cups just because.  We won't be sitting in silence only to have it broken by a random conversation of her telling us that she would prefer a Shopkins or Pony birthday party in three weeks when she turns two.  There are so many conversations I realize now that I never thought I wouldn't be having with her.  I have always believed Sonzee's birth position to be a blessing, and yes there is still much belief in that, however, I never considered had she been our first or our only that I wouldn't be aware of some of the things that I would be missing.

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Resolutions

This morning despite Sonzee's friendly demeanor I decided to take her to the parent-to-parent group that meets on Friday's at the Foundation for Blind Children here in Phoenix.  Full disclosure, Sonzee really doesn't care for the introductory 30-minute music class and only 30% of the time enjoys the centers, because she would rather cuddle with Miss Barb or be pushed in her stroller by Mr. Justin until she falls asleep, so, we really go for me.  I have formed some amazing bonds with the Foundation staff and the parents I have met have become invaluable resources whom I feel like I have known my entire life.  There is a comfort to being around people who "just get it".  Today in the parent meeting we were asked what (and if) we had a new year’s resolution, and when it was my turn I replied that I don't/didn't make new year’s resolutions.  Later, as a general follow up question it was asked, "if you don't make a resolution, why?" 

Since this parent meeting to me is a safe place to let out all my thoughts I jumped on the opportunity to share my reasoning.  About three words into my reason I realized the tissue boxes located on the center of the table (that were kindly pushed to my direction) were going to be necessary to finish my thoughts.  I honestly cannot remember if I made resolutions prior to Sonze, but I am fairly certain it has never really been my thing.  In general, if I want to accomplish something I don't need a new year to make me do it, and if I have no intentions of doing something, then creating a "goal" isn't going to motivate my (lack of) interest in making the goal be completed.  Since Sonzee however, I have found that it is just far too painful to make any type of goals or plans on a broad level because then I am left with such a void and heartache within me if they are unable to be completed.

There are so many things that I wish I could do better, but I also know I don't have the energy or willpower to get them completed.  While it would probably feel rewarding if I did set my bar high and complete a task (such as making dinner every night of the week, packing lunches for the kids, being on time to appointments, you know do what every mom should because she is a mom), I am just don't have the wherewith-all to do them.   I am incapable of these "basic mundane tasks" since Sonzee's lengthy hospitalization in May.  Sure, it would be great to hold myself to a higher standard when it comes to being present every moment of the day, but my heart isn't always in that.  I cannot explain it, but my energy level is typically around a "blah".  Having Sonzee has broadened my horizons in so many areas, and living in the day to day with no set expectations is the only way I can survive.  I would rather withhold my participation in resolution making until it won't be setting myself up for failure.

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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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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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30 days and 12 hours (9/18/16 at 9pm)

It has been 30 days and 12 hours since our little bear had a seizure (as of this post being written, and I hope by the time this publishes I do not have to make any corrections.)  I can still remember the exact way she looked, where we were, who else was present, and the emotions that flooded through me.  I have a feeling that no matter what length of time that may pass, the details of her past seizures will always be there in my mind and haunt me.  Every body movement, eye roll, and sound that she makes sends a jolt through me that takes my breath away.  I often wonder if that will ever subside.

She is doing absolutely fantastic in so many ways.  Her head control is the best it has been in her life.  People that do not often see her make comments on how healthy she looks and how big she has gotten.  While she does not look directly at people who walk up to her, if someone talks to her in an excited manner and they wait patiently, she will give them one of her signature smiles.  It does depend on her mood how big or small the grin is, but she loves to give them out.  She loves to be around people and to interact.  In the past when she was upset, she preferred to be left to herself, but yesterday I did my usual "try anyway" approach, and she actually fell asleep while we were cuddling in my bed.  A moment that may never occur again, but was photographed and etched into my mind forever.  How long will this last?

Others have asked me this question AND I cannot lie, I wonder the answer myself.  I also wonder if I actually want to know the answer.  There used to be a part of me that would say "yes", please tell me how much longer our Sonzee bear has of being free from the havoc of seizures.  I would rationalize that I would need to know so I could enjoy every second and truly cherish the moments.  If I was at a different point on this journey, my answer might not be the answer I am comfortable with right now.  However, I know what is different and I know why.  

Not so long ago I wrote a post about change and how the entire concept confused me in regards to what roll "change" had on me.  I look back at the past four months, I can see how I am different, and I can even tell you why.  I can tell you that during Sonzee's 28-day hospitalization at Phoenix Children's Hospital there were days I actually pictured walking out of the doors without her coming home.  The thoughts I had during some of those days are honestly too challenging to relive just yet, but I can tell you they did make a positive impact to the me of now.  So if you ask me now if I want to know when this dream will end, the answer is NO!  I can promise you that I am enjoying every moment to the fullest, and I am cherishing every typical and atypical Sonzee moment she has to offer.  Even the Type A part of me is quietly hushed in the corner knowing all too well that her opinion does not matter.  

Whatever amount of time we are afforded with our bear in general and as a bonus with her being seizure free we will take with gratitude and appreciation.  Despite the bated breath that each movement, eye roll, and sound she makes brings to me I will continue to be grateful for each minute that she is not in pain and that she is not seizing.  No matter what happens to her seizure control, no one can take away the past 30 days and 12 hours of pure peace and joy that we have all been fortunate enough to experience.

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363 Days

As I sat down to write my post I could not remember the topic that I had been planning on sharing.  That happens more often than not these days with the lack of sleep I am getting and the usual typical mommy brain.  So I looked back a year to see where my mind was and I came across a post titled who is she?  Similar to the other "I wonder if we are making the best decision" posts, I was worried that we were the ones preventing her personality from coming out because of the side effects of the medications she was taking.  I was worried about the harm all of her medications were causing her.

September 9. 2015

"If one of the side effects of keppra weren't irritability, would she be a baby with a constant toothless grin?!  If it weren't for topamax would she be a bit quicker cognitively?!  How much of the Sonzee bear that we know and love is actually Sonya?!  How much of her are we missing out on?!"

While I think it is "safe" to say that we won't ever be able to differentiate whether all of her personality is due to a specific drug she is currently taking, a long lasting side effect from one she is no longer taking, or if she is acting just as a non-medicated Sonzee bear would, I have so much to say to the me from one year ago.  Sonzee is practically on a non-therapeutic dose of Keppra as we continue to wean her slowly.  At her highest dose over the past 17 months, she was on three times the amount she is currently taking.  She is on Sabril and RSHO hemp oil and is experiencing the best seizure control of her life (poo poo poo, chamsa chamsa, knock on wood, and every other possible superstitious saying from every culture) at 23 days 13 hours and 15 minutes (as of the writing of this post).  She is the happiest little girl, with the most beautiful and amazing open-mouthed tooth filled smile.  She attempts to giggle and makes a Sonzee exclusive little laugh.  She plays with her feet and interacts with everyone.  She loves to be silly and her personality is shining.  She has been off Topamax for 6 months and immediately we saw her cognitive abilities enhance with the elimination of that drug.  HOWEVER, 100% of the Sonzee bear that we have known and loved IS ACTUALLY THE SONZEE BEAR.  

All of the medical choices we make on this journey we obviously make for her, so she can be the best little bear that her little body allows her to be.  Every smile, every laugh, every milestone she achieves is due to her being her no matter what medication she is on, no matter what obstacle that drug puts in her way and no matter how amazing it helps to make her.  Every tear, every setback, and every hurdle she has to overcome and reattempt are all because of who she is.  I want my old self to know that we were not missing out on anything that she had not shown us because at that specific time, that was not who our little bear was. 

There will come a time when I know this post will serve me well.  I hope that when I reread the words I am writing I am taken back to this specific moment in time.  The time when our days were filled with less tears of sadness and more tears of joy.  The time when we started to meet our little bear like we would any typical 19-month-old child of ours.  The time when we celebrated every little tiny moment of positive outcome as if it was going to be the last, but hung to the hope that it would not be.  The time when we worried that our days such as this could very well be numbered, but we would rather experience them this way regardless.

It has been 363 days (give or take) since I wondered who my fourth child was.  I wondered who she could be without the assistance of an anti-epileptic drug, yet would never allow myself to give the okay of letting her not take one.  Today, I am celebrating who our little Sonzee bear is DUE to the seizure control she has been blessed with while also on a drug that I once worried would take so much of her away.  To that, all I have to say is what a difference a year can make.

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Eighteen Months

My dearest Sonzee Bear, 

I do not even know how to begin this letter to you.  As I sit here the rain is pounding on the skylight, you and your siblings are sleeping, and your father is out at ice hockey.  I have so many emotions running through me right now I do not even know where to begin.  This has been a prominent occurrence during the past 18 months of your life.  I find myself constantly straddling two worlds simultaneously, the one where I am fighting back the tears because of sadness, and the one where I am fighting back the tears because of happiness.  One thing seems for certain, there are always tears.

In one more hour it will be exactly 18 months since I first ignored the signs that you would be making your debut 2 weeks prior to your due date.  A day after the day your father joked that you would be arriving.  In true Sonzee fashion, you had your own agenda planned.  Luckily, for the both of us, you did not make me wait long once you decided it was time.  In just 8 hours, it will be 18 months since I first held you in my arms.  18 months since you made us a family of six, a family of four girls and two boys.  18 months since our lives became part of a storm, similar to the one that is going on outside.  So much has changed since those first moments, yet so much has remained the same.

Since your arrival I have received many new titles; a mom of 4 beautiful children, a NICU mom, a mom of a child with epilepsy, a mom of a child with a CDKL5 mutation, a mom of a special needs child.  I embrace my positions with a smile, but sometimes they mask the pain that I feel for your suffering.  While I am thankful that we are celebrating this momentous occasion with you in our presence, it pains me exponentially that undoubtedly you will have at least one seizure today and you will struggle to communicate your wants and needs.  This day of celebration is clouded with the fact that you will be in pain in some form or another and just like every day for the past 18 months, there is nothing I can do for you to make it go away.

I have been waiting in anticipation for this day as I did with your siblings.  You of course have a specific outfit that was purchased with your personality in mind.  I had distant dreams of the accomplishments you might have achieved, but thankfully, I always keep the backdrop blurry so that you never feel like you have let us down.  I push you like I do your siblings, and while there are days that I am frustrated with the situation, I want you to know that you could never disappoint me.  I am just so thankful for your current capabilities and your consistent determination.  

These last 18 months have been so hard on me for a multitude of reasons, one of them being the constant worry that I am not honoring your wishes.  I just want you to live the life that makes you the most happy.  I sometimes wonder if that is just letting you lay on the green mat so you can roll off it 100 times while you secretly enjoy making me walk over to place you back on it.  You have such a strong fighting warrior spirit, which has become evident; as we have watched, you hover over the fine line of life and death far too many times for my liking.   

While there is no guarantee for anyone, celebrating birthday moments like this is bittersweet to me, as I live in constant fear that it will be the last.  So I apologize now (not really) for the insane amount of pictures and poses I will undoubtedly be making you participate in.  18 months is a date I was uncertain we would even reach with you a couple of months ago and yet it snuck up on me so quickly.  These last 18 months have been one big contradiction; I cannot believe how a year and a half has flown by and dragged on all at the same time. 

Thank you my little bear for helping me work on my patience, and for giving me strength I did not know existed.  Thank you for helping me find my voice and making me a better parent.  Thank you for helping me unlock a hidden desire and passion of writing, that without you would never have come to fruition.  Thank you for brightening my day with your crooked adorable wide mouth smile (when you are in the mood to do one).  Thank you for allowing me to hear your sweet little voice and even your not so sweet and loud cries.  Thank you for being a great teacher and student to your siblings who love you so so very much.  Most importantly, thank you for being YOU.

I hope and pray that these next days, weeks, months, and years of your life will be filled with more joys and accomplishments than seizures, pain, and sadness.  I wish for you many more "ema made" celebrations so we can see your cuteness as you are forced to wear ridiculous customized outfits that bring me so much joy and happiness.  I hope you have an idea of how much you are loved by us all.  

Moreover, thank you for the past 18 months.

Love always, forever and a day, 
Ema

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Over thinking

When it comes to little bear there are few items that tend to fall in the "treat this as a typical baby" category.  Since Sonzee entered our lives, the decisions we have had to make have required an intense amount of deliberation and reevaluation to ensure the best answer was reached.  The topics tend to revolve around medications, feeding, pretty much everything that would involve keeping a child alive and giving her the best chance at living healthily.  Now that thankfully she is growing and thriving, we are actually being faced with the more typical baby/toddler dilemmas.  In turn, I recently realized (as in yesterday) that due to this way of thinking that we have been forced into, I still treat each item regardless of its importance in the same manner.

One of the more challenging things for me has been how I treat Sonzee as far as her cognitive capabilities.  Her body size and what she is capable of expressively has always been significantly younger than what her actual age is.  To give you a good idea, if I had to give her physical capabilities a respective age, I would say she is around 3-4 months old.  This is tricky on my brain, as I have to remember that she is actually 18 months old, and if you asked me what her cognitive age is, I would say it is definitely close if not right around 18 months old.  I know she understands what we say, and I know her challenges come from trying to express that to us.  She may not be able to control her body in the manner she wishes, but she knows what she wants and what she does not want and she does very typical 18-month-old things.

My problem is that because of this challenge I tend to overthink everything I do when it comes to her instead of treating her like I would if she were a typical 18 month old.  It is so hard for me to give her a consequence for her actions because what if I am wrong?  What if she doesn't understand when I think she does?  She demonstrates daily what she understands.  Yesterday specifically she was lying on her tummy, I referred to her tushy, and she wiggled it.  If I talk about her feet, she will attempt to grab for them.  I think this one of those gray areas of special needs parenting that I am going to need finagle my way through.  The best part of this...it is no different from being a parent of a typical kiddo.

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Some things do get easier

When your child receives a diagnosis such as one as involved as CDKL5 it is easy to get swept away in fears, doubts, and worry towards the future.  You immediately want to take the disorder by the horns and defeat it...there might even be a part of you that naively thinks you can.  You immediately go into "fix-it" mode.  Wrapping your head around the fact that fixing things is simply impossible is one of those concepts that is more challenging to "accept".  I can say for me at this point when I look toward the future I don't ever see myself being content with  not being able to do whatever I can to fix the effects of an incomplete CDKL5 gene, but I am learning that not everything needs to be "fixed".  

When Sonzee was first diagnosed everything to me about her future seemed to be equally depressing.  I would look at the older kids who also had the diagnosis and wonder if Sonzee would present with the same physical delays.  It was honestly really challenging to look at my 2-month-old baby and picture that her body would grow bigger, but her capabilities would remain the same as they were.  

As her journey continues to unfold I am less and less phased by her physical limitations but watching her having seizures....the seizures are for me by far the worst effect.  As I look toward the future, imagining her in an older form seizing uncontrollably makes my stomach to flips and flops.  I have no other way to describe the feeling other than just plain helplessness and sadness.  I can see how much 15 months of a diagnosis has changed my perspective and feelings and to be honest, it isn't all bad.

A year ago Sam and I took Sonzee to the CDKL5 clinic in Denver, Colorado.  We met other families and they all had much older children.  They were beautiful girls, quiet, content, and in wheelchairs.  There was one boy who was walking around and Sam was eager to learn more about him.  To be honest, we didn't find ourselves wanting to be around the other families, it was really difficult to take it all in.  It sounds so awful, but it was really challenging.  I honestly didn't even realize the psychological toll that it would take on us when I originally planned the visit.  Behind the closed doors during our visit both Sam and I were optimistic as the doctors told us to keep doing what we were doing with Sonzee because she was doing things that "other children with a CDKL5 diagnosis weren't doing".  We wondered if it was simply because Sonzee was the youngest diagnosed child and they didn't have children to compare to her at that age or if in fact, we had a rare gem in the world of CDKL5.  We left feeling a false sense of hope and with a false sense of confidence.  It wouldn't take us long to realize that Sonzee was just like every other child, and she wasn't going to be known in the CDKL5 world because of her extra special exemplary skills.

While it continues to be an inner struggle at times seeing pictures of children who also have a CDKL5 mutation complete milestones Sonzee isn't ready for, a year later I can say that things have actually gotten easier.  If I asked myself a year ago if I thought my mindset would be any different in regards to acceptance I would have told you "no, it won't get easier", but that isn't entirely true.  

On Sunday we found ourselves fortunate to meet with another little girl with a CDKL5 mutation.  Talk about becoming instant family friends (at least on our end).  As we spent time with her parents it was similar to seeing a childhood friend who you haven't seen in years, but instantly pick back up from where things were left off.  The hours flew by as we talked and let all of our children bond.  How special it was that our older children had other children who also have a sibling that has seizures, delays, and are different...but they all have a bond because they "get it".  I don't even know if they realize at their young ages how unique and special their relationship will be as they grow up.  It isn't even a doubt in my mind that they will remain in contact in some way.

Besides the amazing tips and information we took away from our visit, what stands out the most to me is how much I have actually begun to "accept" CDKL5.  **I don't know if full acceptance will ever occur, but this is a start.  The girls are almost exactly a year apart.  Her skills slightly more advanced than Sonzee but on the whole, they were very similar.  As I looked at Sonzee's CDKL5 sister, I could envision Sonzee in another year, it was at that moment that I realized I wasn't phased by what the future looked like.  This time, instead of being fearful about what Sonzee might not be doing I saw the possibilities of what she might be.  Here in front of us was a beautiful 2.5-year-old with a love for belly dancing scarves, who is smiley as can be, and communicates when she is upset and happy.  A happy little girl who is content with just hanging out and who enjoys being on her playmat.  I saw a glimpse into our potential near future and I could easily see Sonzee in her as if I was a pregnant woman looking at a newborn baby and imagining she was mine.  The same excitement and anticipation came over me as it would wondering what my other children will do when they turn a year older.  It was at this moment that I realized that while this journey as a whole is not going to be a walk in the park, there are definitely areas that will get easier.  There is a reason our motto is HOPE-LOVE-CURE, and I don't think I truly understand the meaning behind these words until yesterday, and I owe that to our new extended family in Blue Bell, Pennsylvania.

Dear seizures

Dear seizures, 

I have been penning this letter for some time, waiting for the moment that I had enough courage to express accurately my dislike, anger, and overall hatred for you.  I hope this note reaches you when you least expect it, when you are relaxing from your long day of atrocious hard work, after you are finally settling in to rest and you are completely unaware of what is about to come at you.  I hope you are shaken to the core and completely sucker punched; you know, similar to what you do daily to my 17-month-old daughter and ALL of the children that suffer from the sudden abnormal electrical activity you love to share.

You are simply unrelenting as we, the defenders, play a delicate game of "walk the tight rope", balancing between medicating enough to maybe put you at bay and keeping our daughter's essence alive.  You have taken so much already from our daughter that your continued presence simply sickens me.  Each second of every episode that you infiltrate my daughter's beautiful body is another second I spend loathing your mere existence.  Today, alone, that was approximately 900 seconds.  That is 15 minutes of my life I spent feeling utterly helpless, fighting back tears with my heart torn into pieces watching as you took over the body of a helpless child.  It is so beyond frustrating and challenging to find the accurate words to express to you the complete and utter disdain I have for you.  I wish you were tangible so I could find you and give you the reciprocity you so deserve.  

I wish there was a magic potion I could find that would make you vanish from this world so no other parent, caregiver, sibling, or person in general has to witness what I do on a daily basis.  Most importantly, I wish there was a remedy mainly so no person has to succumb to the negative power you possess.  Too many parents have watched you take pieces of their children away from them far too often.  Too many parents have watched you literally suck the life out of their child.  Too many parents have you to thank for the disabilities their children experience and the daily struggles they endure.  Too much heartache and too many tears have been wasted because of you!

What I want you to know is that despite all the negativity you represent, and all the hurdles you place in my way my mission will remain constant and I WILL NEVER QUIT.

I will never give up the fight for a cure to stop your electrical misfiring.  You should spend each moment in constant fear that TODAY will be your LAST seizure.  You should live in a constant state of panic and worry that you will be obsolete from existence and that your damage will NEVER continue.  You should never get to the point that you feel you are a match to every drug manufactured, because my daughter and every other child and person who deals with you on a daily basis is far more resilient.  Most importantly, what you should remember is that every person you are attacking has a momma bear on the defense, and so my friend, you are the one whose days are numbered.

Good luck, 

From a fierce unrelenting momma bear warrior whose life mission is to eradicate you

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Do not fear the tube

Every time we make a decision, we wonder if said decision will result in a positive outcome.  There have been so many times along this journey that the decisions have resulted in a domino game effect with literally no end in sight.  Along the way we have almost become numb to the negative outcomes, I say almost, because even though we say we are numb, we are simultaneously saddened and frustrated with the choice that led to the undesired outcome.  Despite the fact that even though I can assure and reassure myself "we made the best decision with the information that was presented at the time" it never quite seems to soften the blow.  However, there are definitely rare times throughout this adventure that we happened to make a decision that 100% was unarguably the best decision ever. 

Usually the results of our choices do not present themselves immediately because in the land of CDKL5 you can be assured that the term patience will hold an entirely new meaning.  Then one day something will occur and it will dawn on you that "yes indeed that was the best decision ever".  The decision for us to give Sonzee a feeding tube was never one we entered into lightly.  In summary, after months of little bear not gaining adequate weight we had a consultation for a feeding tube to be placed in her stomach.  Prior to her surgery she had a negative reaction to IV fluids that were ran too quickly and almost killed her.  During that hospitalization, she was diagnosed with an abnormal background on her EEG and Infantile Spasms that resulted in high dose steroids and so the surgery was postponed.  After many days of back and forth between many medical professionals, it was decided that Sonzee should have a PEG tube placed.  After the PEG tube was placed, we were uncertain if this was actually the best decision for the bear.  She was not gaining weight, she was having severe reflux, increasing irritability, and difficulty with not vomiting up everything she consumed.  Finally, in May we hit our breaking point and she was hospitalized for a month resulting in us leaving with an intestinal feeding tube (NJ tube).  

Sonzee has been discharged from the hospital for one month and 17 days.  She has grown at least 2 inches and has gained at least 4 pounds.  Finally, our little bear is getting adequate nutrition and she is beginning to thrive in so many areas.  I look back on my concerns regarding this feeding tube adventure and fear was ranked high, followed closely by wondering if a tube would even help or how this would negatively impact her quality of life.  So many parents have asked me if we think we made the right decision in pursuing a feeding tube for Sonzee, and I used to waver in my replies.  If you ask me today how we feel about Sonzee not eating by mouth and having all of her nutrients be given solely through a feeding tube, we will answer "Undeniably the BEST decision we have made.  Do NOT fear the tube."

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What's wrong with her?

They warn you to brace yourself; to be sure you are ready for that dreaded moment.  The moment that will come out of the blue, unexpected and will catch you completely off guard.  The one where you are simply just being a typical mom and then the innocent question presents itself.  "What's wrong with her"?  If you have a child with special needs, you might have even prepared a script for when this moment might occur.  Odds are even if you did, you will forget it when the time comes anyway and in some instances that might not be the worst thing.  What is not always shared is that sometimes this question will actually evoke a feeling inside you not of anger nor of sadness, but actually of pride and happiness.

There we were at a playground on Saturday afternoon.  Two seven-year-old girls playing with Sonzee's older sister walked over to the stroller.  They looked at little bear and they said, "What's wrong with her?" as they pointed to the feeding tube coming out from her nose.  A look of curiosity and confusion filled their faces.  I did not feel the punch in the gut that I would have expected.  I did not panic, and I did not want to crawl inside a cave.  I wanted to celebrate.  I wanted to educate.  I wanted to explain as much as they wanted to know.

What courage it took these girls to ask and not point, stare, and walk away.  They were so interested in what I told them, they continued to ask questions.  They looked at her and said "Hi", of course, Sonzee did not give a bright-toothed grin, nor did she even acknowledge they were there.  "How old is she?", "17 months"...Does she talk?”  ..."no, she can't", I still turned to Sonzee and I said, "Say hi Sonzee"...."How does she say hi if she can't talk?”  ...I am still figuring a good answer for that question and it has been 2 days.  I explained her feeding tube in the best way possible so that two young girls who probably have never thought about their anatomy involving the digestion of food could understand.  They walked away satisfied with my replies.  I felt relief at how the exchange occurred.  I felt excited they cared enough to ask questions.

I anticipated a moment like this to leave me choking back tears and feeling discouraged.  Instead, I found myself beaming with pride and happiness that Sonzee mattered.  There are so many times that I am asked, "How old is she?”  I reply "17 months"....silence follows.  I often wonder if I lied and said she was 7 months would people then reply, "Oh she is so cute", "Look at her little rolls", "She is just so yummy".  I can see the discomfort on the faces of many when they walk over and see the tube in her nose.  I know they want to know why.  I so wish they would ask.  I will continue to brace myself for the day that a question rubs me the wrong way, but celebrate the opportunity to educate another person.

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