Four years

Dear Sonzee, 

Today at 1:08pm marked 4 years since you left this world. So much has happened in that amount of time, but it doesn't really involve much healing of the hole in my heart. Shifts of emotions sure, and moving forward in numerous ways have occurred, but there is still no sense of peace in your absence. I have however become a master of masking emotions and to quote the Book of Mormon, I can "turn it off, like a light switch, just go click".  I am not sure it counts as moving forward in the intended sense, but it counts as something I suppose?

Four years ago today I gave you one last kiss and carried you out of the house for the last time. I laid you on a gurney and was shocked at how cold it was outside for a February day. I hadn't been outside in weeks and was caught off guard. I flinched at the chill and grabbed a blanket so you wouldn't be cold, and then considered how insane that must have sounded to others. As if temperature mattered to your body any longer. I couldn't stop the mothering though, it was bad enough I was sending you by yourself in the back of a hearse, the least I could do was give you a blanket to ensure you were warm. 

Today I looked at the clock at 1:34 and noted to myself what I was doing at this time 4 years ago. Pacing around a counter, organizing things around the house, feeling confused and unsure of what I was supposed to be doing, while Nurse Paige sat on the couch writing notes. It didn't make sense to me that life was going on around me, just like today it didn't make sense we had just gone back to Morah Zupnick's house for lunch after celebrating a bar mitzvah. I wasn't in the mood for celebrating today, but I sucked it up and played the part. Few people knew what today is anyway, and apparently, because it isn't your yahrtzeit it doesn't count as the day you died (insert me rolling my eyes and wondering why it is I am an observant Jew sometimes). 

It wasn't until this year that I started to feel the whole grief should expire concept from other people. It seems as if life is always moving on around me and there isn't time to wallow in my grief either. I feel torn between focusing on you being gone and focusing on our current day-to-day family life. In the semi-quoted words by Nora McInery, "I want to give you and your memory my best and I want to give my living family my best, and sometimes I think my best is gone and what is left is whomever I am now". Whomever that actually is I have no idea. I wish I did, but I am still lost, even four years later. I just excel at acting like the new me has been found. 

Bubbie and Pop Pop brought Max over for some doggy therapy tonight. It was perfect for my after-shower tears that I had managed to suppress all day long. Now I have some hot tea and a new set of tears to help finish off the night. Your twin girl (who always manages to say and do the right things at the right times) told me that she is sorry that you died and how she notices in my face when I am thinking of you and she is thinking of you too and she wanted me to know that she does miss you a lot. It really was at a perfect time because it was right after I finished writing the sentence above about grief expiring and my next thought was how sometimes it feels like I am the only one who still grieves you. I know people grieve you, and I know they do it their way, and that is fine, but the further away the time has gotten, the more alone the grief feels. I don't like that part of the journey. I don't like how time since death somehow translates to others that it is less hurt and less pain. Or maybe it is just people just don't think it hurts as much? Maybe they think that time has healed the wound? I don't know, but whatever it is, I wish it wasn't. I wish people offered the same check-ins and assistance they did right after you died because honestly, every grieving set of parents still needs support even (yes shockingly) years later. 

In a week and 1 day, you will be turning 9 in heaven. I don't know how to even comprehend you as a 9-year-old when I last saw you as a 4-year-old. From preschool to 3rd grade, that seems unreal(well I guess in a sense it isn't real). I wonder what you would look like now and if your baby face would be gone. Would you have lost teeth? How many windows would there be looking into your mouth? Would your eyes have changed officially to grey and started their journey to green like your older sisters and how your brothers are starting to? 

What have you been up to over this year? Have you made new friends? Do you have a best friend? What are your favorite things to do? Do you get to swim? Do you see Saba and Coach Ed? The one question I really want to know is, When will you feel I am ready to ever see you? 

I am sorry my letters have been lacking over this past year. It seems to be my way of avoiding the reality of your death and absence and on top of that excuse, it is exhausting to grieve.  I am already exhausted from working and having an active life to expend any additional amount of energy on focusing on you not being here just isn't something I am capable of doing daily. I wish I could be, but I just can't. I am sorry. 

I miss you more than words could ever explain. I wish you were here. I wish you were born healthy and able to still be here with our family physically. 

I love you!

Love always and forever.

Until next time. 

Ema

8 Shvat/January 18, 2024

Dear Sonzee,

I have spent the last year trying to figure out how to celebrate your sisters 14th birthday and honor your Hebrew death date anniversary. The timer has ran out and I’m still stuck. I know how the fake the smiles and be physically present at your grave in the morning while singing happy birthday over a cake at dinner, but the honest truth and reality is that it doesn’t make sense. There is that saying that you can be a jack of all trades and master of none; that about sums it up. 

How? Why? I don’t understand. 

Is there a right or wrong way to do either? Do you get the “shaft” because you aren’t physically here? Is that fair? Will you “not know?” Is that even a reason that makes a difference? I’ll know. Do I pretend that all that today is, is the day your oldest sister was born? Does that really give justice to your life and death? Do I honor you another day? I mean inevitably I will. If it were up to me I’d pretend today wasn’t your yahrzeit, but in the Jewish faith, today is the actual day that matters. Lucky me, I get to do this all again in just a few more weeks.

Either way today sucks.  Today on the secular calendar in 2020 you spiked a fever. A fever that didn’t indicate anything other than your organs were beginning to fail and your life was soon to be over. It is a fact that tainted your oldest sister’s milestone 10th birthday. I was honestly frustrated with you, or rather the situation. It was obviously out of your control, but my emotions are hardly ever rational.  

I suppose it is completely fitting that you and your sister were known as “twin girls”. What other people could be as intertwined to represent the cycle of life than you both. To have your souls and spirits tied together on so many future dates that only twins would experience together. 

I would ask you to visit your sister to wish her a happy birthday, but I am sure you have already. I’m sure I’m still the only one who has yet to have a visit from you over the last 4 years. My body still feels a tremendous void with your absence. 

I will save my other thoughts for the Feb 3 date because it gives me a bit more time to “pretend” we aren’t at 4 years without you yet.

Today, on your Hebrew deathaversary I will continue to pray that you are at peace and wish that you have been experiencing everything you weren’t able to while physically here with me. I will give you some more beautifully painted rocks and visit you with everyone who is closest to our family and you. I will head to work and surround myself with children who have so many of your characteristics and keep you in my life in a completely different way than anyone or thing could. I will wipe the tears from my eyes and go on with my day with a smile for your sister and gratitude that today 14 years ago I was afforded the opportunity to become a mother to such a resilient and amazing 5lb 5ounce little girl who never had a choice over the circumstance of her childhood. I will thank hashem for using our family for the benefits only he sees, while continuing to ask you for your Sonzee bear strength to continue putting one foot in front of the other while I continue on I struggle through life after you. 

I love you little bear! 

Love always and forever,

Ema 

March 16, 2015

Since 2015 the month of March has always been a difficult one.  I am pretty sure over the 5 March's Sonzee lived she was hospitalized at least one week out of March every year, and the dates overlapped 3 or 4 of those times.  I dislike the month of March in general, but this afternoon into the evening my body started to feel different.  This is definitely one of those things that is hard to explain, but anyone who has experienced a trauma of some sort in their lives can most probably relate.  Something started to nag at me, I couldn't place it.  I was feeling extra anxious, extra weight in my chest, and while it makes zero sense when I start to get my antsy anxiety I drink a cup of coffee. (Don't worry, it is 10:45pm and I opted for decaf, and yes I know the caffeine isn't helpful for anxiety, now moving on).  I made one of my fancier concoctions of coffee and sat down at my computer knowing I was feeling something Sonzee-related, but not quite sure what. Then as I normally do when I am feeling on the edge, I went to google photos and typed the date, March 16.  I realized quickly why my body was on edge.

March 16, 2015.  The official date that life forever changed.  The first night I would spend staying up all night and into the next morning not sleeping while waiting in the Phoenix Children's Hospital ER.  The night that I decided on my own that I had to trust my gut, the gut everyone else was telling me was just being neurotic.  The first night I recorded a seizure, not even really certain that was what it was, but yet knowing in the recesses of my soul that was exactly what those movements were that Sonzee had been doing.  March 16, 2015, was the night I called the after-hours line for the pediatrician's office and flatly told them I would be taking Sonzee to the ER because she had her second seizure.  They told me to call an ambulance. I told them that felt excessive. Since Sam wasn't home I called my neighbor instead. March 16, 2015, we sat in the overflow area of the old PCH ER during cold and flu season, with a brand new baby who was unvaccinated.  I was panicking. March 16, 2015, was the night I didn't understand how a newborn baby seizing wasn't the highest priority child in the ER, the rest of her life would teach me that.  

It is amazing to me how the body remembers but the mind can move the memories to a hidden bookshelf. 7 years ago today, around this time exactly I took a maybe 7lb little baby to the hospital with a video of her shaking in tow not even thinking further than someone was going to confirm my suspicions, tell me she was seizing, and send us home.  I honestly to this day do not know what I thought was going to happen, but I didn't even pack a hospital bag, (rookie mistake). 7 years ago today I can still feel all the feelings I felt. 7 years ago today I can remember the sites and sounds of that ER.  7 years ago today I could tell you the words spoken to every nurse and doctor. 7 years ago today as she seized again I mentioned to the ER nurse how horrible it was to watch her seize and she responded with "you'll get used to it". 7 years ago today I wanted to punch her in the face, but never thought to ask her how she knew that.  7 years ago today and I know how much that statement is true, eventually, sadly, I did get used to seeing them, but I never got used to not wanting to cry watching her having them. 

March 16, 2015, a day that marked the beginning of a story that wouldn't last more than 4 years 11 months, and 23 days, but also the beginning of reliving the trauma of those 4 years 11 months, and 23 days for my forever. 

Two Years

Dear Sonzee, 

Today marks 732 days since you left our physical presence. It feels like an entirely different lifetime ago because that is exactly what it has been. An entire 2 years that didn't include you with us.  An entire 2 years that we have had to learn how to be a normal family, a task I am unsure we will ever accomplish.  It has been 104 weeks and 4 days learning to navigate being a family that used to have a child with special needs.  It has been 2 years of no longer having to keep a hospital bag packed (although I never unpacked it, even after the flood). Two years that we have no longer needed to coordinate vacations and weekends around nursing schedules, planned admissions, and random 100.4-degree unexpected fevers.  It has been two years not counting seconds and minutes while you seized, two years of no gj tube changes, no central line challenges, and no arguing with insurance companies.  For two years, we have driven by Phoenix Children's Hospital and have not been admitted to the 8th floor with you.

I wish today would mark some finality of the situation, but it doesn't, in fact, it is the opposite.  Today, February 3 marks the end of another 365 days and the beginning of another 365 days that will pass me by without you here.  A day that will forever be the worst day of my life, but yet (what I imagine to be) your best.  How unfair it is that I cannot be there to cheer you on and celebrate all of the Sonzeestones you have finally had the opportunity to accomplish.  I hope you have someone cheering you on front and center, and that you feel the cheers that I promise I would have for you if I knew about what was going on.  I absolutely hate that I have missed out on 2 years of whatever it is you have become and been able to do.  I think that is probably the cruelest part of this all.  We all miss out on life with you and being able to celebrate with you.

For the last two years, countless people have said they couldn't imagine the situations we have had to experience, especially us having to bury you.  I sometimes wonder myself how I have lived through it because I cannot imagine it either.  For four years 11 months and 23 days we lived an insanely unimaginable life, and since you left, we continue to live the life that every family fears they could be.

I am still trying to figure out who I am with the pieces of me that were left here without you.  I anticipate it will take a minimum of two more years to even start to sort that out.  What I know is that it will pass me by with a lengthy blink of the eye, and I will be left wondering how it has been so long but yet still feels like yesterday that you were being held in my arms.  I am thankful, at year two I can still feel you in my arms, and feel the softness of your cheek against mine.  I am so thankful that at two years I can still remember all of the details of the exact moment I last saw you forever.  

My Sonzee bear, it has been 732 days since you were last here with us physically, and missing you is an understatement, but there has not been a moment in the last 732 days that we have not carried you in our hearts and minds.  No matter the number of tears that fall from my eyes because of how much I miss you, I want you to celebrate this day.  Two years ago today you were given freedom, a gift I never could give you.  So please celebrate doing everything you are now able to do (and if that includes coming and visiting me for the first time in 2 years, that would be greatly appreciated.

Until next time my little bear!!!

I Love you and miss you so so much!

Love always.

Ema

Today is D Day...

April 16...we meet again.  3 years ago, today I was handed this piece of paper.  You were electronically signed 5 days ago, but I was blissfully unaware.  

Oh, how I pray that the chain of events leading up to that moment never had to happen.  I wish time could go back to the exact moment that the CDKL5 gene was forming in Sonya's body and do something differently.  If only we knew what or if there was something different that could have been done during that one split second.  I still often wonder why she was the chosen statistic and I am still unable to accept this is part of her life or our life, yet there is still nothing that we can do.

Today my heart is heavy, and it hurts.  I cannot officially say it hurts more than it did 3 years ago, but I can certainly say it is different.  3 years ago, my heart hurt because there was a reason Sonya was experiencing seizures and she never would "outgrow" them.  3 years ago, my heart hurt because we were told our 8-week-old baby girl might not develop in a typical fashion.  We were filled with fear and doubts over the trajectory she would travel.  3 years ago, my heart broke as I watched and heard Sam's break.  3 years ago, our hearts broke because we felt like we were at the bottom of the barrel.  

Today my heart hurts because 3 years have passed, and we watch our Sonzee bear seize multiple times a day.  We give her medications that help to an extent, but will never take away her pains, struggles, or seizures.  My heart hurts today because I have watched Sonzee try so hard to hold up her head, put weight on her legs, and try to sit, but her body still has its limitations.  My heart still hurts over the unknown trajectory of her path and the doubts and fears still present every day.  My heart hurts because I am more aware of what a missing CDKL5 actually means.

Over the past 3 years I have watched so many fellow CDKL5 children suffer and lose their lives and I know how real and likely this scenario is likely to become.  The past 3 years have taught me that while the selfish mom in me wants Sonzee here with me forever, the mom who has been present and watched her suffer for the past 3 years begs she won't have to continue to endure the absolutely horrific trials she has had to every moment of her life for so much longer.  

Over the past 3 years I have learned there is not much good that comes with a CDKL5 diagnosis, but good memories, great moments, and amazing friendships can still be made.  There will never be a moment that CDKL5 will ever be far from my mind.  The impact of this string of characters has been monumental.  There is so much I have learned over the past 3 years and so many changes that have been made.  While I wish with every fiber of my being the events that led up to this day 3 years ago never occurred and we were not the ones who had to learn all the intricacies of living a life with a child who is missing CDKL5 protein, that was not the case and we were...so here is to putting one foot in front of the other, waterproof mascara, a few runs to Starbucks and embracing Diagnosis Day. 

Mommy bloggers, Join me @ Top Mommy Blogs

13 Days

In 13 days we will celebrate the 3-year anniversary of Sonzee's CDKL5 diagnosis.  A day that no matter how much time has passed on a calendar, the details of that day will remain forever etched in my mind.  A day that I can confidently say "changed my life", and one that I feel I should say "for the better", but honestly, I do not believe that.  I can twist this scenario into being something positive.  I can say how my perspective has changed in many areas, or how I am a different,  and or there are people I met because of all of this, and how great these experiences have been, but today I am honoring the part of me that stays tucked away, afraid of being judged.

I loathe April 16.  It ranks up there among the days I wish could be erased from the 2015 calendar.  A day I wish would never have happened.  It is a day that no matter what, will continue to play out for the rest of my life.  It will forever remain a staple.  It is a day that cannot be erased, ignored, or forgotten because it was just a starting point.  It was the day we were first introduced to the string of characters, CDKL5, to a world that was essentially out there and just waiting for us to find.  That day we learned there was a community, an actual family for us that we never realized existed.  There were families that had already been affected by CDKL5 living their daily lives right alongside ours, and we never knew.  There were children who had already lost their lives due to one of the many complications that can arise being diagnosed with CDKL5, and I had spent 31 years oblivious.

Lately, I have found myself trying to envision what life would have been sans anything CDKL5.  It is hard to tell what exactly would be different.  Would I have had 6 pregnancies?  Would we still have had 5 children born?  Would we travel more?  Where else would I be dedicating my time and energy?  Was CDKL5 bestowed upon Sonzee to prevent something else from occurring to one of our other children, Sam, or myself?  I know the answers to these questions will one day be answered and so many more questions will eventually be asked.  After all, during this time 3 years ago somewhere in a science lab, a test was occurring that would give an explanation as to why my newborn baby was seizing, it just was not the one we wanted.

Mommy bloggers, Join me @ Top Mommy Blogs

Go with your gut

When I signed onto Facebook this morning there was a notification telling me that I had 8 memories over the years "on this day".  Naturally I decided to go and see what they were, and I saw Sonzee's one-month picture from 3 years ago.  My caption read "1 month already?!?!".  Looking at this picture I recall vividly how many pictures I took to find the "right" one to post.  It was different than with my other children.  It wasn't because the pictures were not the perfect picture because I was trying to get her to lay a certain way or I wanted more of the background to be a specific way.  It was not because I was trying to find her cutest pose and post that one.  It was because something in my gut was nagging at me.

"Something was not right", I said those words so many times during her first month of life and they fell on deaf ears.  I felt it was so obvious in this picture, and while I wanted someone to agree with me, I was afraid of someone agreeing with me.  Her eyes were facing directly at the camera, but they were not looking at me.  Someone made the comment, "so alert" (for the record, I HATE THAT PHRASE).  I wonder if they could not figure out what was off in that picture, so they chose that overused phrase.  

It was a few days after this picture that I finally ignored others best attempts to tell me "baby's do weird things" or that I was just being crazy, and I decided to go with my gut.  It was within 24 hours that my gut feeling was confirmed.  All those twitches, shakes, and random eye movements were actually seizures, I was not crazy after all.  While there was some validation in knowing I trusted my gut and it was correct, there was not an overwhelming sense of victory when it just confirmed my worst fears.  

The past 3 years have been filled with so many doubts and questions where I continue to question my gut, but time and time again my gut wins.  So many times I challenge my own gut to play devil’s advocate and a lot of the time it is simply done because I want so badly for my gut to be wrong.  I still hold out hope that just once it will be and I tend to cling to that more often than not.  But if I could give anyone starting out on their parenting journey, special needs or not a piece of advice, no matter what others tell you.... go with your gut.

Mommy bloggers, Join me @ Top Mommy Blogs

Happy Diagnosis Day?

Happy Diagnosis Day?  I am typically a fan of celebrating every inch stone, milestone, Sonzee-stone, what have you, so it only seems fitting to somehow adorn our house with balloons and give thanks to CDKL5 being placed into our lives two years ago today.  Since I am not quite ready for that after only two years, I suppose the all-out celebration will have to be placed on a brief hold and reconsidered next year (or the year after?).  Regardless, today marks an important day in our family's life, and so today I am going to explain to every person who reads this blog post and for those of you who share the information written on this blog that CDKL5 does NOT mean your child has a worthless, unmeaningful, depressing, insert any negative connotation type of life.

CDKL5 has brought many challenges for Sonzee and our family.  The diagnosis made our worst fears become a reality in a matter of seconds.  However, two years in and our daughter is still alive and has not given up, so we will not either.  There are many people who pity the life that Sonzee lives.  There are those who decide that her quality of life is not "quality".  There are those who think she would be or that we would be better off without her here.  Yes, having a CDKL5 mutation is not ideal, no, I would never have chosen for my child to have a CDKL5 mutation, but this is how she was given to us and we love her the way she is.  She may be a little girl trapped inside her body, but she is smart and she is aware and she knows what is going on (it only takes one minute of actually being present with her to know all of this).

I pity people who think that having a disability defines a person.  I actually despise people who think that because a child is nonverbal that means they have no idea what is going on.  I feel sorry for people who do not take the time to get to know the child and learn to communicate with them in a different manner.  Every person has a story to tell and it may not be told verbally, and if you do not give a person the chance to tell it in his/her own way, that is not reflective of their cognitive capabilities.  If you meet a child or a person with CDKL5 I challenge you to spend time really getting to know him/her, not just petting their heads, or looking through their eyes.  I promise you will see the light in their eyes and their individual personality shine through, along with their obvious likes and dislikes made abundantly clear.

Having a CDKL5 diagnosis for Sonzee did not give us the answers we wanted, it did not give us closure and it did not give us any specific path to take.  It continues to give us speedbumps, hurdles, and roadblocks that we must creatively maneuver around.  It brings many nights of tears and a lifetime of fears as a parent.  CDKL5 means a life of challenges for Sonzee and a life of defending her capabilities to others who are too blind and closeminded to see them.  CDKL5 has given me various new perspectives, many great friendships, and an extended family that I will forever be grateful for. 

After only two years, the diagnosis is still too raw for me to embrace with open arms, but the strength, perseverance, and bearlike qualities it has given to Sonzee and honestly every other person in our immediate family is helping me to accept it a little more every day.  

So... I guess happy CDKL5 diagnosis day?

Mommy bloggers, Join me @ Top Mommy Blogs

Same place different year

It is 10:45pm on March 20, 2017 and we are in room 8128.  We do not normally face north so this is a nice change of view for me, instead of watching the planes fly into Sky Harbor, I get to watch the cars drive on SR 51.  Since March 2015 during this exact week I have found myself surrounded by the same walls, in various identical rooms, and usually cared on by a friendly face.  With a stroke of luck, it just so happens that tonight we are with one of Sonzee's very first PEMU nurses.  One of the benefits of the experience is when the nurse coming to take you to your room opens the door and says "welcome back" and you see the same smiley face that has been there to wipe your tears in the past.  

There are so many adjectives that I have in my mind to describe being in this predicament; comical takes the lead, followed by unfortunate, nervous, weary, relieved, eager, and my list definitely goes on.  I foolishly started to think that we would slide right past this anniversary without celebrating in Sonzee style.  I suppose that is what I get for getting too overconfident, for thinking that things could actually take a positive spin for little bear.  This is the part that hurts me the very most.  I just cannot understand why my baby girl just cannot catch a break.  Every time I start to see a small glimmer of hope it just gets ripped away.  I really am having a huge challenge comprehending this reoccurring Groundhog Day type of testing.  Clearly something is not being done correctly or it would have stopped repeating already.

This is one of those parts of living the medically complex special needs type of life that makes you muster all that is inside you and push through because there is no other choice.  There is no other way to make it through these times without reminding yourself that there is clearly a reason for all this pain and anguish and it will one day be revealed...unfortunately it was not in 2015, 2016, or 2017...and in 2018 I will just buy Sonzee a cake and schedule an in-home party for the week of March 18.

Mommy bloggers, Join me @ Top Mommy Blogs

Living with rare

80% of rare diseases have their origins rooted in genetics, and 50% of rare diseases occur in children.  Yesterday was World Rare Disease Day.  It is a day that takes place the last day in February every year with its purpose to bring awareness to the 7000 existing rare diseases.  CDKL5 is one of those rare diseases with less than 2000 diagnosed cases worldwide.  Prior to April 2015 our family was unaware of the fun facts the surround rare diseases, facts such as 95% of rare diseases do not have ONE single FDA approved treatment, and 30% of children with rare diseases do NOT live to see their 5th birthday.  The mere fact that a specific day was created to bring awareness to the public and decision makers to eliminate the challenges individuals and families encounter who have rare diseases says enough in and of itself.

Yesterday I wore my grey long sleeve CDKL5 awareness shirt, green leggings, and a jean skirt.  I went about my day as usual, and had the opportunity to pass out two Sonya's Story business cards.  Both of the above were intended to educate others on one rare disease, and let us be honest, it is really the only thing I can do.  CDKL5 is just one rare disease that currently has no known cure and will not during Sonzee's lifetime (sorry but not sorry to write those words out).  It is just one of the rare diseases that does not discriminate who it affects, nor does it spare its inhabitants from vast amounts of heartache.  Sadly, unless you know and love someone who suffers from a rare disease you would spend your life in a blissful state of ignorance (I know, I used to live there).

For the last two years on the last day of February I have celebrated a day I would rather not know existed.  For two years, I have not only learned about CDKL5, but I have become aware of rare.  For two years, I have cried over the loss of too many children whose bodies were just too tired trying to fit into a world that is not adequately prepared for rare.  For two years, I have spent some days pleading with g-d, begging for Sonzee not to leave me, and others asking for her to be set free.  For two years, I have walked a tight rope that has changed who I am, but has given me a direction of where I am going to go.  Looking back on the past two years, I guess it makes sense that one four letter word could be defined by both "not occurring very often" and "unusually good and remarkable", because that about sums up living with rare.

**Information was referenced from www.globalgenes.org, and www.rarediseaseday.org.

Mommy bloggers, Join me @ Top Mommy Blogs

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.

Mommy bloggers, Join me @ Top Mommy Blogs

Another school year begins

Today starts another school year over here in Phoenix, Arizona.  The weather still feels like summer, so besides the fact that we have been home only 12 days and it feels like so much longer because the kids and I are ALL so ready to resume our typical routines, it doesn't feel like a new school year should be beginning.  My back to school shopping concluded with literally half a page of yellow highlighter over the items purchased, as it covered three different grades on the left side of the paper.  This morning we will have a first grader and a kindergartner, and on Monday, we will have a preschooler attending three days a week.  I find myself (as usual) with a mixed set of emotions.

Since the summer of 2011 I have always had at least two children who were two and under by my side on a daily basis.  We have always followed a schedule of activities that kept us all busy, me especially.  There has always been special alone time factored in with each child as much as possible.  The other times were days of special bonding for the remaining siblings at home.  This year will be no different on Tuesday and Thursday, but on Monday, Wednesday, and Friday, it will just be the bear and I flying solo.  I am extremely excited to have this time with her, especially since in a year from now the discussion of preschool for her will be brought up, and that gives us a year to start to figure out what our feelings are on that topic.  At the same time, it is slightly sad for me because the types of alone time I will be sharing with Sonzee will be vastly different from the others.

I am finding myself play the "I wonder what it would be like if Sonzee were a typical 18 month old" game.  I know this does absolutely nothing as far as helping me during this lifetime.  Yet, it is a game I tend to play during these types of events.  I honestly can't stop the images and thoughts take over my mind...and to be honest there are definitely days where I get wrapped up in my daydream and I entertain it a minute too long because it brings me such joy.  It is obviously not the same type of joy she brings into my actual life, but it is similar to one of those fantasy dreams that you wake up from and you think about for another 5 minutes or so imagining how it would be if it were your real life.  Sure, our schedule is packed with therapies and activities for us to enjoy together, as well as quiet time to relax, but I will not even lie to myself and say it will be the same.  

I know Sonzee and I are going to have such a great year together on our "Sonzee & Ema days", going on special dates, going shopping, participating in activities, etc.  I also know it is going to be challenging to participate in the above-mentioned activities because going out with Sonzee is not as simple as going out with a typical 18 month old.  I know there are going to be days that will make me feel more sad than I can even anticipate, but I also know there are going to be days that I will feel happier and more thankful for my title of a mom with a child who has special needs...because no matter what, these times we will share will be absolutely special.

Mommy bloggers, Join me @ Top Mommy Blogs

It's a marathon...not a sprint

I am not a runner by any stretch of the imagination.  The only relationship I even have to the sport is through an old pair of Nike sneakers from high school and the Bumbleride twin-jogging stroller I purchased when we had our first two children.  It was on eBay and I just wanted a discounted stroller.  Running really is not my thing, but if I ever decide to participate in the sport, I am fairly certain I would prefer being a sprinter.  My personality is much more suited for being a sprinter opposed to being a marathon runner.  The finish line is closer, the goal seems more attainable, and the race itself is quick giving you immediate satisfaction and validation for your efforts.  Yes, I would much prefer to participate in sprints.

Sam has said from the beginning that dealing with CDKL5 and Sonzee is a marathon not a sprint.  He reminds me all the time of this statement.  I say the words aloud multiple times a week in hopes of them penetrating deep enough into my brain that I can change all my ways of thinking.  Yet, here I am trying to sprint my way through a marathon.  As I said previously, I am not a runner.  I do not know the first thing about marathon training.  I do know it requires a lot of preparation.  You cannot wake up the morning of the Boston Marathon and just decide to participate, I mean I suppose you could, but I can probably guarantee the outcome will not be desirable.  To run a marathon you need to have a lot of dedication, you need to have patience, strength, and endurance.  You have to be willing to spend months and years adding distance to your daily runs and putting up with all types of weather.  You cannot just become a marathon runner.

I have found that no matter how many times I remind myself that this is going to be a long haul type of event, I am still stuck in my “immediate fix it” type of ways.  This experience has been a HUGE test of my patience.  I have definitely made improvements in that department but wow do I have a long way to go.  I constantly want to do quick fixes for whatever discomfort Sonzee might be facing; unfortunately, there are no quick fixes.  There really are not even fixes.  Her seizures will come when they want, how they want, and in any form that they want.  Her body will get sick when it wants, how often it wants, and in whatever fashion it wants.  There are things I can do for her to provide comfort, but they seem to fall short in being permanent remedies. 

It has been exactly a year since I first stepped foot in the ER and said the words, “I am pretty sure my daughter is having seizures”.  I have now been in my training for 365 days.  I am definitely more knowledgeable than I was a year ago, but I do not have many more answers now to the same questions I have asked or wondered throughout the months.  These next couple of years are going to be difficult, I know this.  I am attempting to prepare myself, but I would much rather fast forward.  I keep saying, “Keep your eyes on the prize”, I do not even really know what that looks like.  I know it involves some semblance of seizure control, but really, I just want the bear to be happy.  I want her smile back and I want her cute little personality to shine through again.  I am having a tough time right now in this part of my training.  It feels like this is an insurmountable task, similar to if you ever asked me if I intended to climb Mt. Everest, Umm…No.

So, here I am in the midst of a marathon I was not prepared for and I am definitely more of a sprinter.

Mommy bloggers, Join me @ Top Mommy Blogs