Cop out?

During Sonzee's life when someone would outright state or even insinuate that their problems weren't equivalent to what our family was going through, I was always quick to stop them and let them know that it wasn't fair to compare. Everyone has their own challenges and threshold of what they can handle, and it isn't fair to assign weight to them. I always felt that comparing anything besides a comparable life was equivalent to comparing an apple with a pineapple. They share the category of fruit. Diminishing what someone else is experiencing doesn't make what challenges another person any heavier. They both are what they are to each of them. 

Being a parent of a child who died is a unique category. (Thankfully) There are fewer (but really too many) members of this group. I have found myself confused and not confident in the role of parenting after a child's loss. For the last 3 years, I have been confused as to what subcategory of life we have fallen into. Are we still a medically complex family? Are we a hockey family? Are we a typical family? Do we have the right to have accommodations made like they once were when we had a child who was medically complex and then dying? In what category do our surviving children fall? After all, children are resilient, right?! 

When the world returned to normal after Covid, so did we. As if we didn't experience the death of a family member. Unless you know us from before, or unless one of us mentions it after, you wouldn't know. We blend into life. The kids are in extracurricular activities, we travel, we spend our summers away, Sam and I both work, we smile, we laugh, and for all intents and purposes, we act as if we have the perfect family. Sometimes, but rarely our emotions are on our sleeves. Unless people want to travel the grief journey along with us, they too can pretend that our lives are normal. They can stay far enough away from the unimaginable pain they are thankfully able to avoid and tune into the part of our life that we outwardly display. 

Among fellow bereaved mothers, I mentioned my conflict with what is grief? and what is normal? I shared with others the everyday pain, the lack of energy, the lack of motivation, the anger, the frustration, the short tempers, the feeling of being a failure as a parent, the challenges with deciphering what is teen/child typical behavior and what is related to grief. I mentioned that I was torn on if the behaviors my children are exhibiting are typical or if it is grief. Is the grief a cop-out? Is it fair to place the onus on grief? I listed all of the struggles I have felt but didn't want to be told by someone who is not in a similar situation that "of course, it is grief, of course, you're experiencing all of those emotions, you lost a child"

It was at the same moment that I was speaking my thoughts aloud that I started to process the entirety of the last 8 years. The actual significance of parenting a child who was medically complex and whom we knew we would one day bury as a child, but didn't know exactly when. I had a million flashbacks of a life that went by incredibly fast that simultaneously took 4 years 11 months and 23 days of her siblings' lives as well. I listened as a mother responded to me about how she wishes she could surround herself with my bubbliness every day because maybe it would help her feel motivated. I listened as she said she was processing everything I was saying. I listened with tears in my eyes as she said, "but Randi, a cop-out?! Honey, it is not a cop-out, it is your reality, it is your life"

For the last 2.5 hours since she said that sentence to me I have repeated it in my mind while thinking about all those times, I shrugged off the weight of all we have endured. I have thought about the words while thinking about the fact that 3 years ago our children's ages ranged from barely 2 years old to barely 10, none even old enough to sit in the front seat (and due to height, all were still in car seats or boosters). I think about how not only did we have to deal with Covid, but we also had to deal with the death of a significant family member. We buried a child and sibling who didn't go longer than a month of her life going into a hospital. A child who spent close to half of her life in-patient at a hospital. I have thought about it all on repeat. There is no comparison to anyone who has experienced a loss of any kind. There is no it is worse because of "XYZ", there is none of that. But, also, there is no coping out, and there is no cushioning the reality. The reality is that there is no denying that things are different for us and they are harder in many ways, there is just no way to sugar-coat that. There is no coping out because the struggles we have had to face as a family are not normal, they do warrant some extra attention and some extra accommodations, but most importantly, they mostly warrant giving ourselves a little more grace.      

2 years 2 months...and 2 days (April 5, 2022)

Dear Sonzee, 

It happened.  I anticipated it would happen, but I didn't realize how soon it would occur.  Today, is April 5, 2022.  Today is 2 years 2 months and 2 days since you died.  Today is the first day I realized that the 3rd already happened. This was the first month in 2 years that the 3rd of the month was another day.  In fact, it was actually Elle's birthday.  A date that used to stand alone, but for 2 of those years I am pretty sure I didn't think of the day as hers anymore.  It was a day that meant another significant amount of time had passed without you here.  While that is still the truth, this month was the first time that it wasn't the only truth.

There is still a lump in my throat when it comes to thinking about you not being here.  There are still many moments that catch me off guard and bring me to tears in front of crowds of people.  There is still this huge empty space in my heart.  There is are still moments when I can't breathe thinking about you being gone for as much time as you have been and knowing that there will be such a significant amount of time ahead.  There is still so much pain. There is still so much anger and frustration over your life and death.  There is still panic that all of this will never end.  But, for the first time in 2 years, there is also a tiny beam of sunlight that is peaking through showing me that it is true, there is a way to merge the before, during, and after and life does actually form a new normal that isn't horrible. 

After 2 years I am actually starting to learn how to balance our life with your death (I can't lie, it isn't without help).  It sometimes feels impossible, but at the same time, it sometimes seems like it was so easy.  As I think back to how I spent the monthaversary to the day of your death compared to now, I can only compare it to how we used to celebrate your seizure-free days at the beginning of your life.  In the beginning, each seizure-free moment was honored, each hour that went by was a celebration, but the period always ended, the chalkboard was always erased, and the next period of time would start all over again. I even went through a phase where I considered just celebrating your seizures themselves because they happened more often than not.  

When you first died I couldn't leave the cemetery for hours.  I sat getting burnt and eventually Valley Fever from all of the dust that would blow.  Each month I painted you a rock to mark the date.  They were always completed in advance and I made a point to make going to the cemetery part of my day at whatever cost.  I was so afraid of going to NY in the summer of 2021 because I didn't know how I would handle not seeing you every day, but it turns out, I survived.  After I came back going to see your grave was worse than not.  I would still decorate rocks and have aba bring them to you, but the intense feeling that drew me to your grave initially started to dissipate.  I would still give a nod to the significant days that would pass, but there came a shift where I knew I didn't need to go to the cemetery for you to know I was thinking about you 24/7.  The reality of you not being there started to feel true, and having to see your name on a stone wasn't something I needed to put myself through over bereaved mom guilt. 

After 2 years 2 months and 2 days, I feel like I am starting a new part of this journey. I won't say it is acceptance because I struggle with that word and your life all the time.  To accept it in my mind means it is okay, and nothing about you having CDKL5 and dying before you turned 5 is ok. But I am at a place where I can accept that our lives without you here physically are going on, but spiritually you really are still here, always.

So happy 2 years 2 months and 2 days of freedom baby girl!!!  I hope one day to see you in my dreams.

Until next time.

Love always, 

Ema 

But just because

As we finished our three day holiday weekend, my older kiddos and I sat on the couch deciding what book I would read to them.  I have an Alice in Wonderland series from my childhood and originally I grabbed that.  Naturally, that opened the way to my son announcing it was "girlie", and my oldest daughter wanting me to read a "Babysitter's Club" book instead, and me saying "It's not girlie, and no we aren't reading the Babysitter's club".  As I opened the book to begin reading my son ran excitedly over to me, handed me "The Phantom Tollbooth", and I said, "Oh, yes, this will be great".

I have to admit I have always known about this book, but honestly have never read it, so part of my desire to oblige my son completely came from the fact that I wanted to read this.  So the four of us sat down together and I began to read.  As I turned each page and read the words I kept thinking how amazingly quotable this book is.  It seemed as if every other line was one I wanted to burn into my mind to reference at a future point. Some of the phrases were cute, some made me chuckle, and others I felt spoke to me in a different way.  We only got 4 chapters in when it was time for the kids to get ready for bed, but I knew there was a quote I had not come across that somehow would be the perfect quote for me to relate to Sonzee.

I posted a picture on Sonya's Facebook page and mentioned how I had hoped Sonzee wouldn't have another seizure but of course within 10 minutes of posting that my hopes were dismantled.  During the 10th day of CDKL5 Awareness month, during neither her first nor most likely last 13+ minute seizure of the day, my mind wandered.   Should I post one of her seizures? Does posting one actually brings more awareness or just bring about pity?  If I posted it would people even want to watch it? I am pretty sure those of us who have to, would much rather not.  If people watch the video would someone comment about our lack of giving her a rescue med 2 minutes in?  I responded in my mind to that comment with the blatant fact that rescue meds do not stop her seizures any quicker than her body chooses to finish them and inevitably within 4-5 hours another one would occur again.  

Returning back from "seizure land", I was wondering if it was time to email her epileptologist and ask for the new medication titration schedule.  Feeling all sorts of weight from watching her endure all that she just had and not even feeling a glimmer of hope that we would ever stop her from this sort of suffering I came across the most clarifying quote.  Maybe CDKL5 won't ever be a string of characters that is known to everyone or will make the daily news in every city, in every state, in ever country, or on every continent.  Maybe there won't ever be a child with a CDKL5 mutation who makes it onto Ellen or is born to a world figure, actor, or famous athlete.  Maybe seizure control or the ability to be more typical won't ever be in Sonzee's cards, and Maybe finding a cure for CDKL5 won't, sadly, fall during her lifetime...

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.

Now

Yesterday was Sonzee's 5-year-old sister's birthday celebration.  It was a planned "girls only" party.  8 girls including the birthday girl were going to spend the morning getting their hair, nails, and makeup done.  My heart yearned for an inclusive experience for Sonzee.  I was apprehensive from the time of booking how this would play out, but I knew it was out of my hands.  I have learned to set the standards high for Sonzee, but to keep my expectations low to protect myself from the potential pain that comes with the "special needs life disappointment".  So, when we arrived at the facility and the girls began to rotate into their respective stations I continuously mentioned that we would try Sonzee, but that it was okay if it did not work out.  I yearned for her to take part without it being stressful for her, without her being upset, and without me wishing the outcome had turned out differently.  

Finally, it was her turn.  I was nervous about how the staffing girls doing hair, makeup, and nails would react to her continuous body movements.  It did require Sonzee's sister and myself to hold her hands and feet to get her nails done due to her kicking her feet around and her desire to want to eat her fingers throughout, but once she realized she was being pampered she settled right down and only got a little nail polish on her shorts and inner thigh.  She did not argue one time while the girl put gel in or combed her hair, or spent time doing a french braid side pony tail.  She loved the glitter shower at the end.  I helped make a beaded necklace with her, to be honest she was not overly thrilled (but those beads are tiny, and I honestly do not care for the patience it takes either).  She danced with her sister, and it brought me such an immense amount of joy watching her be included.  The staff included her, the girls included her, her sisters included her.  My heart was not prepared for the amazingness that occurred.

Lately things have not been the best.  We try to focus on the positive, but the weight of CDKL5 has been increasingly heavy over here.  There is the false sense of security because things have been going okay with the big picture, but the little things are what make the floor fall out from under us in an instant.  When will that happen?  The uncertainty of everything remains only a small thought away, and it takes a toll the further into this journey we travel.  It is easy to get caught up in that ball of yarn.  Yesterday while celebrating the past 5 amazing years I was reminded about happiness and joy.  I was reminded that life passes by in an instant and it will not be slowing down.  I was reminded about Sonzee-stones, simplicity, and the little things.  I was reminded that there is nothing I can do about the future, nothing I can do to fix the past, and that I need to be present in the now.

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Revelation

"You can't change the outcome, but you will never get the time back"-Raquel Schnitzer

There have been a lot of different things going on lately, none of which I have any control over, and  naturally that sends my brain into a tailspin.  The fear of the unknown tends to paralyze me in a way that makes me over analyze and panic about every little thing.  No matter what I do it is nearly impossible for me to stay focused in the moment and actually be present because I am dreading what might be.  I dislike the feeling immensely, but also have found it an insurmountable task to focus on anything but, until yesterday.

Yesterday was mother's day.  A day that I have been honoring for myself since 2010 when our first daughter was born.  So much has happened to make me the mom that I currently am over these past 8 years.  Yesterday standing outside a Starbucks after painting pottery Sam took this picture.

I studied this picture over and over, and the quote above struck me like a lightning bolt.  Whatever "big picture" outcome is going to unfold in the lives of my children or myself I will never have a say.  As hard a pill that is to swallow, I cannot do anything about it.  I can assist with the twists and turns, but if I spend all my time and energy worrying about where the roads will lead I am going to miss the entire point and joy of this life.  Eventually the answers to all the questions will be given.  They may or may not be the ones I want, but in the end, what will matter is what we all did together and the fun times we had in the process.  

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Doing alright

Once I find myself at the bottom of the dark holes CDKL5 places in front of me, it is really challenging for me to pull myself up and out.  It is almost too easy to just keep falling further and losing all of my ability to see the light from above.  Every day that Sonzee seizes, whimpers in pain, is unable to communicate her wants and needs is another day I feel suffocated and a failure as her mother.  Then there are these fleeting moments where I am able to see that she really is truly content with the life she has been given and that she really doesn't know any differently and I realize that I should not be discouraged.

I had one of those mommy moments during Sonzee's swim class this week where the world around us did not exist and we were in a dream.  It was one of those great moments that caught me off guard and brought some tears to my eyes, a ridiculous smile to my face, and for a split second I forgot about her troubles.   For a good half an hour I watched her in her element; not in any pain, smiling on and off, looks of content across her face, just pure happiness exuded from her as she kicked her feet, went under water, and worked on back floating.  Lately I feel as if these situations are rare and I wanted time to stand still so we could be frozen in the moment for a little longer.  I live for these moments, they are what make hallmark movies and P&G Olympic commercials. 

The other day one of my special needs mommy friends mentioned she keeps her daughter on palliative care because it is "care-ative" medicine vs "curative" medicine, the line resonated with me immediately, but it was not until today watching Sonzee play in the water that I felt its true meaning.  We will never cure Sonzee of seizures or the lack of CDKL5 protein that is present in her body, we won't ever be able to cure her GI issues or make her able to function like a typical person does in our society.  We are only able to care for her in a way that shows her we get her, we understand her essence, we only want her comfortable and happy and during her swim class I felt it was her way of giving me a pat on the back and telling me "Ema, thank you, you are doing alright". 

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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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No longer a baby...

We got up and went to the airport yesterday like we have done many times with Sonzee in tow.  We even managed to get there early (yes, even we are capable of doing that on occasion- we just try not to make a habit of it).  We got through security in our usual amount of time with the typical pat-down and analysis of all the supplies we bring for her.  TSA at Phoenix Sky Harbor is always amazing to deal with and we never have any problems, things just take time.  The truth is, no matter how prepared we are, how accommodating everyone is, or how smoothly the process goes, traeveling with a medically complex child is still extremely hard.

Yesterday was the first time we flew with Sonzee in her convertible carseat, in the past she has been in the infant carseat, so of course, there will be a new learning curve.  We were the third in line for preboarding (Sam and the kids came with us) and we were the reason the plane was four minutes late departing.  I will let that sink in with you for a bit.  It took us the entire time of the boarding process to get her carseat installed correctly and we ended up having to forward face her because the distance between the seats would not allow for the proper recline with her seat facing rear.  Yes, Sonzee's one famous skill is her head/neck control, but it is nowhere near what a typical two year old's ability is or should be.  No matter the various supports I tried, her poor neck was flopping forward.  This was not ideal.

When we finally got her situated, the plane pulled back from the gate.  During the chaos of boarding, the pilot (who actually helped carry our bags onto the plane) placed Sonzee's medical bag in the overhead bin while we organized to make things easier and I never had a chance to grab her VNS magnets in all the chaos.  Naturally, it made sense that during our exact pull back from the gate she would have a seizure and her magnets would be out of my reach.  Again, thankful for being with amazing care, we pressed the call button and the flight attendant more than happily grabbed her magnets and checked up on us multiple times within the 6 minutes it took for us to get to the runway to ask if we were okay to take off.

Thank G-d for the amazing staff at Southwest who never once said anything negative, did anything to insinuate we had to rush and were overwhelmingly supportive during our entire experience.  Like I mentioned previously, this all helps, but the fact is this traveling gig is not what pleasant dreams are made of.  We have medical bags complete with essentially a portable hospital; a pulse oximeter, portable oxygen concentrator, feeding pump and supplies, medications and supplemental supplies that go along with her VNS, not to mention the various other supplies that come with having a toddler who is essentially still a baby.

I guess I had not really considered that traveling on a plane as she got older would be significantly more challenging.  Even with her being in the 2% for weight and height I didn't even bother changing her in the small little fold out table in the bathroom because she is too long.  I think the reality is setting in that we are no longer traveling with a baby, we are traveling with a child who has special needs.


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Reminders

When you find yourself living a life with a special needs child, things that were once "unimaginable" become part of your daily routine, so much so, that your typical does not seem so atypical...to you.  Then almost randomly you have these "aha moments" where you realize just how not normal your life, your family's life and your child's life has become.  For me one of those series of "aha moments" came while preparing for and during our in-home district nursing evaluation to see if Sonzee qualified for nursing respite vs standard respite.  

It is not that I am at all shocked or surprised she qualified for the nursing part of respite.  I am more slapped into reality over the fact that her seizure log from January 25 includes 124 seizures and those are not counting the ones that happened while she was in the PEMU or in the last 16 hours.  It also does not include an exact count of spasms/multiple seizures that can happen during a 5-7-minute event, it is simply representing the number of episodes she has had in the past 3 months.  The fact that this is our normal, our "no big deal" does not faze me daily.  We do not bother with rescue medications because they will not do anything positive for her long term, they will only make her dependent, so our "comfort" is 15-21 minutes a day of her seizing.  I honestly do not even process that the seizures themselves could render lifeless, it is as if the entire concept of what a seizure actually is has fallen on deaf ears.  I am pretty sure this would be a proper time to insert the confused emoji face.

I think about the children and families of CDKL5 children who have lost their lives often, but I do not let it consume me or I would be unable to function.  Then suddenly, the news spreads that another child's body just could not compete with the challenges of a CDKL5 mutation and it becomes all too close to home.  The distance of that reality is no longer so far away and the weight of what Sonzee is dealing with on a daily basis is thrust into the spotlight.  Living with a CDKL5 mutation is not just dealing with developmental delays and seizures, these children are literally fighting just to survive daily.  I guess I forgot that?

I do not know what is the "safer" way of living this sort of life.  For me it has always been best to keep the fear and reality in the distance but aware that we are not immune, however, on the days these reminders float in it takes a lot of strength to remember to breathe.   

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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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Aha moment

As Sonzee continues to get older we encounter new experiences in a special needs world that we honestly never gave much thought to prior.  Sure I've seen handicapped restrooms and of course the parking spaces.  I never personally considered these to be "conveniences" to those who need them, but there are times now that I definitely consider them a perk.  A consolation prize if you will.  The thing is that while there are these "prizes" there are the obstacles I never once considered.  

We boarded our flight to Florida this morning and I recently realized that we could take advantage of the pre-boarding option with Sonze.  The added benefit of her medical supplies not counting as a bag would have been spectacular except that we flew southwest, so all of our bags flew free regardless.  Nevertheless, I consider that in the future to be a definite plus.  The flight was actually amazing, all children earned gold stars and Sonzee played in her seat and occasionally took little naps, a perfect traveler in my book.  During the flight I decided to change Sonzee's diaper and so feeding bag and all, we made our way to the back of the plane.

There is one restroom that has an infant changing table..."table" is honestly being kind as its really a 16 x 20 plastic fold out tray.  While Sonzee has grown, it's one of those times I am actually thankful for her "Failure to thrive" diagnoses.  In the small confined space is when it dawns on me, "what do we do when she's bigger?"  I step out of the restroom and ask the 3 flight attendants in the rear my question, "My daughter has special needs, what do I do when she isn't able to fit on the changing table?  Are we not able to fly anymore?" (There was no sarcasm in that last part) All of them gave me puzzled expressions while admitting it was a great question, but they honestly couldn't give me a straight answer.  One suggested the floor, while the other said "maybe in a row".  My next question, "is it even allowed to change a child in the seat?".  The conversation ended with I should call southwest, but that it was a great question. Yay?!?

Sometime later one of the flight attendants came to me and gave me phone numbers for the disability department.  I am honestly preparing myself for them to tell me that at a certain point changing a diaper mid flight will no longer be an option for us so we should consider smaller flights or connections.  It's during these more "aha moments" that no perk of this life is actually a perk.  It's all just heartbreaking.  It isn't even about the fact that she won't be potty trained for a decade or if for her at all.  It is just a reminder of all of the challenges she and therefore we will face as she continues to get older.  The realization of what it truly means to always have a baby.  The fear, heartbreak, and multitude of emotions that accompany this realization are just a lot to take in.  So for now we will enjoy this trip to Florida and take the future as it comes, but for sure in baby steps.

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