Sonzee "turns" 8

Dear Sonzee, 

Today, 8 years ago you came quickly into our lives, but 3 years and 8 days ago you slowly left. Making it your 4th birthday we have had to celebrate without you here. It doesn't make sense to celebrate a day when the reason, you, is missing, yet here we are, again. The truth is, this year was the easiest. All of your many signs over the last few weeks have been a significant help with that.

A bit over a year ago a friend of mine realized her father shared the same yahrzeit as you, the 8 of Shvat. She came with us to say kaddish at your grave. While she was there she also noticed that you and her father also shared an English birthday. Aba says the chances of that are about 1 in 40,000. We know how well you understand rare.

On Thursday this week, this friend invited us for Shabbas lunch today. At the time neither of us was thinking about the date. On Thursday night, before leaving for hockey with Tzvi aba asked me if I wanted to celebrate your birthday with a cake. As usual, when aba asks me about plans to honor one of your dates I snapped. Why would I want to have a cake? We have never had a cake, why start this year? He gave reasons why, but I continued to be annoyed. The conversation ended.

Yesterday morning I received a text. It read that my friend's children and she were going to be making a cake for her father, would I like her to add your name to the cake because birthdays can be so hard. I paused. I had forgotten that you and her father shared your birthdays. I immediately smiled and said yes, that would be amazing. It's funny how that came together. I knew that it was meant to be after that text, after all, I am sure you were involved in this orchestration. 

8 years ago you came into this world and everything we ever knew about life and parenting went out the window. Usually, on a person's birthday, they make a wish, they get gifts, and they are celebrated. For 4 years your wishes were your secret only. For 4 years the gifts you got weren't anything you could have asked for. For 4 years you were celebrated the best way we knew how. For 4 years I wished that you would no longer suffer, that you would find peace, and that you would be able to be free. For 4 years you gave me the gift of your life. For 4 years you let us celebrate you with hugs, kisses, and love, the only way we knew how. For the last 4 years, you have made my wish come true. For the last 4 years, you have given me the gift of believing in faith, in signs, and a new beginning of trust in Hashem. For the last 4 years, you have given me the ability to continue to celebrate you.

Thank you for choosing us to be your parents, for allowing us the greatest opportunity of trusting us to help you complete your earthly mission, and for helping me to see that you are never really as far away as it some days feels. 

I hope your actual wishes can be spoken, be heard, and have come true, and I pray when the time is meant to be, that I am given the gift of seeing you live them, so we can celebrate together.

Happy 8th birthday baby girl!

Until next time.

Love always, 

Ema

Sonzee "turns" 6

Dear Sonzee Bear, 

Another birthday we didn't get to celebrate together, it seems wrong to have a day on the calendar in honor of the birth of you when you are no longer here.  Aba made a statement about how he didn't want to celebrate today because a birthday is the celebration of life, and now there is nothing to celebrate.  Valid (horrifically painful) point.  Man, this sucks.  I wish I could say this year was easier than last year, but it isn't, it is far worse.  I hope it was the exact opposite for you.

I wore my usual birthday outfit in honor of you despite the circumstances.  Had I actually ventured out into public and had a conversation about the balloon leggings, I am sure it would have been fantastic to mention I was wearing them in honor of my dead daughter. I spent this morning with Corrinne's mommy.  We spent the time literally sitting on you, drinking our Starbucks in some beautiful Phoenix weather.  It was the perfect way to spend your day.  I can imagine you had an extravagant party considering so many of your friends are with you for this one.  I hope they made you feel beyond special.  I hope you ate cake and ice cream and ran around in a beautiful wonderland with your curly pigtails and no doubt, a cute outfit.  You have probably another year until you would be too old to wear the pigtails without rolling your eyes at me.

Besides decorating your grave, I am sorry we didn't do anything to celebrate you.  No one here even mentioned cake or cupcakes in your honor.  I mean, to be honest, besides that horrible keto cupcake I made for your first birthday, you never had more than a lick or bite of food anyway, so what would have been the point?! Meena made a sign for you and hung it on the front window.  Today she finally got her "Sonzee and I" book.  Now all of your siblings have a book of you and them individually.  

I spent some time today, as much as I could before it was just simply way too difficult, looking at your birthday pictures.  I realized that for 4 years we were distracted with the reality of what today really was.  You were here, so the focus became on celebrating you, and now you are not, so the focus went back to the day we first met. You were able to meet your siblings one by one, and I have some of the sweetest pictures of them standing on stools to be able to touch you, but it wasn't the first meeting I had envisioned.  There was a picture of the lab results the NICU team wrote on paper, at the time I didn't understand any of it, but it makes me chuckle now that I can talk medical slang like it's my job.  It was such an emotionally draining day, but it turned out to be the most accurate foreshadowing of your life.  Me with you in a hospital, scared and unsure of what was going on and going to come for a lengthy period of time, and aba at home with your siblings.  

Oh, my little girl, I wish there was some compromise I could make with g-d to be able to peak through a window into your world.  I trust you are beyond amazing.  I trust you are free and your soul has elevated to the highest place possible, and maybe even beyond because of your incredibleness. But I am just so lost without knowing the specifics.  You can go ahead and laugh at how my gut isn't enough for me anymore and I need the proof.  

I wish you another incredible year full of comfort and peace, and I selfishly wish that you would find a way to help me find just a little of that for myself without you being here.

Happiest of what would have been your sparkly, shining, glitzy 6th birthday my love.

Love always, 

Ema

Sonzee turns five

Dear Sonzee,

I am sorry I am a day late writing you a letter, but yesterday, on what should have been your fifth birthday was a really really "horrible, no good very bad day."  I wish there was a word in the English language to describe what I am feeling, but as of this moment, there is nothing sufficient.  I am still extremely elated that you are no longer suffering.  That is honestly the main focus I have when the times are really tough, just a quick reminder that you are not in pain, not seizing, and not locked inside your body, and the panic of you gone melts away.  As a consolation, all those years aba and I said we wish we could take away your pain and suffering and have it be us who feels it, well that is about where we are, and honestly, it makes us proud to be the ones to do that for you, but it puts the experience of your pain and suffering on an entirely different level, I am still so sorry for you having to go through it all.

I hope you were able to see we decorated your grave.  I placed Mayzie's pinwheel from her celebration of life by your name plaque, it brightens up the entire cemetery, well that and the giant red "5" balloon that I attached to the garden flag pole.  I originally wanted a new birthday burlap flag for you, but Amazon had a fail, and despite the two nice gentlemen at Amazon who heard all about the need to decorate your grave, they couldn't figure out where in Phoenix the package was, so, in the end, I brought you the house cupcake burlap and hung it, which honestly worked out for the best.

The rabbi told me after your funeral that your soul would linger in the house for a bit and then slowly leave by the end of shiva.  I originally asked him if I would be able to notice and if it would make me feel better, he couldn't answer that, thankfully having no experience in this specific department, however, I can now.  I continued to sleep in your bed after you were no longer here, I cannot explain why, but that is where I went every night.  I swear I felt you hovering over the bed the first couple of nights, which by the way, (didn't we discuss ema has a thing about that).  By Sunday night I wasn't being physically pulled to your room, and Aba and I got up to walk around the block on Monday.  I slept in your bed on Monday night, but last night for the first time in 3 weeks, I didn't feel the need.  I take it as a sign that you are moving through whatever the process really is, and I am thankful I have not held you back.

Noam sang happy birthday specifically to you in the car yesterday on his own, unprompted after we were about 1/2 way home from the cemetery.  I was able to catch it on video and it was so sweet.  He knows you aren't here, so while he takes every opportunity to find you in pictures and talk about you he hasn't run into your room searching for you.  I am a bit relieved about that honestly.  Your older siblings are working through it all similarly to aba and I, not really sure how to process it all, feeling your absence, but so happy you aren't suffering.  Laeya wanted to know if eating the ice cream made you wonder why you took so long to go to Gan Eden in the first place.  Don't worry, we are not giving Meena your bedroom no matter how much she has begged, and she does miss you.  Eventually, I have a great plan for your room so we all will have a space to come be with you, and we are probably going to keep your Rifton chair so you can continue to be an awesome goalie for Tzviki.

 I have been going through videos and pictures of your life to create a video for your celebration that we have in about 3 weeks, that process has brought such a smile on my face seeing how smiley and happy you were during your first year and a half.  I have to really sit down and figure out the specifics of the event to make sure we do it justice for you.  I am channeling my inner Sonzee bear strength minute by minute and I thank you for sharing some with me.  I hope you are settling into your new home well and that you are having the time of your life.  So many people reached out to me yesterday and wished you a happy birthday.  We have received so many notifications of donations being made in your honor, gifts, "thank you's" for bringing awareness and sharing your story, and Mimi and Miki even planted a huge avocado tree in their yard in your honor.  I honestly do not know how to properly thank everyone for all of their love and support, and I hope you feel the love wherever you are.

I hope your birthday was as spectacular as I imagined it to be for you.  I hope someone takes it as seriously as I do and you didn't feel like you were missing out.  We did have cupcakes and cake in your honor as we would have if you were here.  We miss you every second of every day and please feel free to send me signs you are doing ok (just please don't hover over the bed like your siblings do in the middle of the night).

With love always,
Ema

The Same

We are a month and 5 days away from Sonzee turning 5.  I really am trying my best to focus on the sheer fact that she will be turning five, that she is here to celebrate such a milestone; but the human side of me says that still is not enough.  It is honestly just not enough to be celebrating a milestone that I am not even sure she realizes is occurring.  The doubt in that fact alone is enough to bring tears into my eyes.  Watching her seize and sleep her days away otherwise is enough to release the tears straight down my face.  It just isn't fair.

We are a month and 5 days away from our youngest being officially more than 2.5 years younger chronologically from Sonzee, but developmentally 2 years more advanced than she will ever be, with an ever-growing gap as each day passes.  It hurts. It hurts in such an incredibly unexpected way.  Watching him as he gains every little skill.  As he speaks more words each day.   With each and every smile he flashes my way.  With every gentle pat and snuggle he gives her and concern he extends toward his bigger sister.  It just isn't how the roles are supposed to be.

I sometimes wonder if I will ever really wrap my head around the fact that this is the life she is destined to live.  I wonder if I will ever truly be able to accept that this is how it is supposed to be.  I wonder if I will one day truly believe she really is who she is and it was a purposeful genetic mistake, or rather not even really a mistake.  I wonder if I will ever be able to give up on what I still honestly secretly wish she could achieve, and the dreams of normalcy I wish her to have.  I wonder if there is ever going to be a way that I can look at her siblings and not have a cloud dampen it because Sonzee isn't or won't be able to do xyz.  The minutes and hours are ticking by.  The days are going by faster than I can keep up.  The years are speeding by at a rate I feel I am not even able to process, but Sonzee, she always stays the same. 

13 weeks

In 10 weeks our oldest daughter turns 10. That means in 13 weeks Sonzee should be turning 5. It’s a birthday I have never prepared for, a day I wasn’t sure would ever come, a year I told myself we might not get to experience with her. As it creeps close I am torn between potential excitement at all that turning 5 represents and fear that letting my mental protective guard down will only prove to be catastrophic should my worst fears become our reality.

When Sonzee was diagnosed with CDKL5 when she was only 8 weeks old I immediately joined the CDKL5 parent support page. The first 10 months was filled with so many infant, toddler, and less than double-digit aged deaths that it shook me to my core. Whenever I have been asked about Sonzee’s prognosis and if there was an “age limit” I would answer, “it is unknown, there seem to be benchmarks that you can semi sigh of relief if the kiddos pass them, but I honestly have told myself 5”.

Within a month of celebrating Sonzee’s 4th birthday I had a dream, that I had finally allowed myself to plan for her 5th birthday, I went on Etsy and purchased one of those birthday shirts that had the number 5 and of course had it personalized. Then she passed. I never have been able to tell if that dream was a premonition or just my anxiety but we have watched her decline tremendously since summer and I honestly don’t know where her little body stands.  I don't know where my mind stands.

As each day passes and February 11 comes closer I am internally torn. I want to plan for her birthday celebration, I want to look forward to her preschool/kindergarten transition, I want to know with certainty that 2020 will bring me a 5-year-old, but like with so many things over the last 4.5 years I’m cautiously optimistic, but preparing for the worst. My sister semi joked that I should just avoid buying her a shirt on Etsy, if only that could dictate her fate and if only I could allow myself to plan.  But instead, I hesitantly look towards the next few months with hope yet filled with this indescribable weight of something lurking in the distance that is completely out of my control.

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.

Dear Sonzee (3)

Dear Sonzee,

Today marks 4 years since we first met.  Besides your sister who we planned to meet really early, you came into this world earlier than we had psychologically planned for.  Your father had me convinced you were going to be another boy and with my history of being wrong 100%, I didn't even argue.  I  even stupidly went so far as to think, "we will have the perfect family; two boys, and two girls".  Honestly, I did not even entertain the possibility you would be a girl until two weeks prior to your actual arrival, I had a mini panic attack wondering how three girls would share one bedroom, but then reminded myself there was "no way" you were going to be a girl.  Bubbie was the only one who knew, but she kept that a well-kept secret and made you your baby blanket with a matching hat and bow.  She bought all of the items I had flagged in the "if baby Z is a girl" Etsy store.  In hindsight, I would have picked a different color yarn for your blanket and spent more time carefully choosing outfits and bows.

Nothing about your arrival was expected or planned.  By the time I was in triage and you were born it was a whopping 40 minutes and your doctor couldn't get there quick enough, he missed the entire thing, and two nurses argued over who was going to catch you, while you decided you weren't waiting for either and the next thing I knew I had you in my arms.  I knew from the first moment "something wasn't right".  To be honest, the nagging pit in my stomach anxious feeling has never left over the last 4 years, it just becomes muffled every once and a while.  The constant worrying, panic, tear-filled moments over what is best for you have never left either, and none of it has gotten any easier.

I have shared in your three older siblings celebrating this milestone and the achievements that have brought you to today are ones they thankfully have never had to endure and I apologize that you must.  I am so sorry you are celebrating today being carried from various pieces of equipment by your father, myself, and nurse Karen.  I am so sorry that we might accidentally place your body in a position that could ultimately lead to another fracture for you.  I am so sorry you are unable to run excitedly out of your room to see your gifts on the counter.  I am so sorry that your gifts have to be signs, pillow cases, pacifiers, pacifier clips, and clothing versus the latest trending four-year-old hot commodity.  I am sorry we will not be celebrating you with a party of your favorite characters, and I am so incredibly sorry I have no idea who they might even be.

I am sorry you have spent 6+ weeks total since September 16 sleeping in a bed on the eighth floor of Phoenix Children's Hospital, and it breaks my heart that undoubtedly you will spend many more during this upcoming year.  I am sorry that you have spent so many minutes this past week seizing and in pain or sleeping due to those seizures.  I wish my prayers and begging would have at some point over these past four years changed any of what you endure on a daily basis.  I am sorry that our love for you has not changed any of how your story has unfolded or will continue to do so.  I wish and pray that we could do something more for you.

My dear Sonzee bear I hope you know if it had ever been up to me alone, I would have done whatever was asked of me to ensure this was NOT the lottery you would win.  I hope you know how much your siblings love you and pray for you to not have to deal with the sad parts of having a CDKL5 mutation.  I hope you know that we all live for your smile and moments of happiness and contentedness.  I hope you know that we treasure every moment you share with us and while not the ideal lessons of parenthood I would have asked for, I thank you for them all. 

And so as you turn 4 and enter into your next year, my wish for you is that this is your best year ahead.  One that will be filled with your fewest seizures and least hospitalizations.  Your most smiles and endless moments of laughter.  A year that you will feel less pain and suffer less.  I pray that this year we solve more problems while creating fewer (or no) new ones and that you will only experience positive gains.  I hope you will cry fewer tears and that your bones will strengthen, and that you will continue with more sassy days.  I hope that your personality continues to shine through and that we learn to help you to communicate so we are better able to be there for you in the capacity that you actually want and need. What I really want to give you for your 4th birthday is a cure to this madness, but since that is not a possibility what I am offering to you is an unFOURgettable year ahead. 

Love always,
Ema

In six days

For three weeks every year, my kids are all "two years apart".  I can respond to the how old are your kids?  question with an even response; and these past three weeks it has been "1, 3, 5, 7, and 9".  The birthday that changes things up occurs in 7 days and the honor is given to Sonzee.  In one week my "toddler" becomes a "preschooler", by age and in theory, but not in our reality.  So this birthday is one I meet with an "inner conflict" for lack of a better term.

Four years old.  Another birthday we are beyond grateful for her to celebrate.  Another birthday we are beyond torn on what she would want to have happen.  Four is that first year where kids are excited about a theme and make specific requests.  Maybe it would be Elsa/Anna, Minnie, or My little pony?  I find the task of determining what she really wants to be daunting, overwhelming, and quite honestly suffocating.  It is another birthday we cannot offer her even a taste of cake or she will suffer.  It is another birthday she does not get to celebrate like a "typical Sonzee" would.  Her gifts are all needs based because honestly how many light up/musical switch adapted toys can one girl have that end up sitting on the shelf?!

In six days I will decorate her door with streamers and wake her up by singing "Happy Birthday".  The "new and improved Sonzee" will smirk ear to ear with all of the doting and attention.  She will give us her adorable crooked smiles and hopefully have a day filled with more time awake than spent seizing.  She will hopefully know the day is a day we are honoring her and when her port needle is removed Tuesday we will have a family pool party in her honor in her swim spa after school.  In 6 days it will be February 11, and while 4 years ago on that day I had no idea we would have embarked on this journey, it will be another February 11 that I will be thankful we are getting to spend with her here.

It is not the same

Sunday marked the official beginning of "Birthday Week".  To be honest I still have not decorated the chalk board wall in the playroom, and I have yet to hang the birthday cupcake door sign.  Birthdays are a source of excitement in our house, it is one of those things I pride myself on.  The joy that comes from the birthday child is easy to feed off of and something that helps hold me accountable for "birthday week" follow through.  Besides me saying that it is "birthday week" Sonzee is not showing any source of excitement.  She doesn't run to the playroom to see that the wall is ready for her to pose for pictures.  She doesn't ask who the presents on the shelf in the garage are for.  She is not able to show if she is even fully aware that it is her birthday this weekend.

I have no idea why, but the weight of all these events and milestones have been much more challenging for me to accept recently.  Maybe it is because 3 is typically that age where a lot of things just click for a child.  It is the age that represents so much change, so much more "maturity" than the first years of life.  It is the year that all those amazing personality traits develop, and that individual personality becomes more known.  Sure, we have a glimpse of Sonzee, but sometimes I feel like I am completely off the mark.  I often wonder if her eye rolls and head turns are not sass, but rather just her oculomotor apraxia and muscle weakness?  

I have been watching videos of her first years of life, she was so happy her first year, so full of smiles and life.  If she could be stuck in a Groundhog Day for a year I would choose that first year of her life.  The year before her EEG background turned to hypsarrhythmia, before her seizures became so much longer and so much more often, before we really dealt with her GI issues, before feeding tubes and the ketogenic diet, before her ridiculously high 2-month steroid treatment, before multiple medication changes, before we started to really gamble, before she lost her true Sonzee happiness.  I think my heart hurts worse now than it did then, and I remember thinking that was not possible.  

I am going to get her wall decorated, and before this post is published the cupcake birthday sign will be hanging on the front door.  The final items for her birthday dinner will be delivered tomorrow and by Friday night the tables will be set, and the house will look like a party city.  Sonzee's siblings will be my source of birthday week motivation and Sonzee will have no choice but to embrace this celebration and know it is completely for her.  However, for tonight, I am going to take a brief pity party time out and cry over all the things she and therefore I miss out on all due to CDKL5.

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Dear Sonzee Bear (2)

Dear Sonzee,

The last letter I wrote to you was the day before you turned one.  I can remember so many if not all of the feelings I had that day as I reflected on your first year of life.  The joys and sorrows that filled each and every moment of your first year are etched into my mind.  To be honest little girl, the years have continued to pass by and the same types of feelings fill my heart and mind as your third birthday inches closer.  I feel I have grown as a mom and as a person in more ways than I could have ever imagined, but I also feel I have lost portions of myself I fear I won't ever be able to recover.  It is purely due to the situations that I have been faced with while on this journey with you, but it is due to no fault of your own.

I sit here tonight with a huge lump in my throat and tears in my eyes as I think about all you have gone through over the past almost three years of your life.  I honestly wonder about what the next three have in store for you, and I pray no matter where we are in all of this, you will have been given some reprieve to the suffering you are constantly forced to endure.  I do not want this to become about me, because this is your journey, this is all in the name of your soul's special purpose, but g-d do I wish your purpose was not at the expense that you are currently paying.  I wish I could have an ounce of your grace and ability to cope in the manner that you do with everything that has been thrown your way, because you my little bear live up to and beyond the spirit of the fighting bear you represent.

My heart aches for all that you are required to deal with, my mind is pained for the inability we all have at understanding your methods of communication, I feel suffocated as i watch your daily struggles to make the smallest movements, and my body is physically tired from watching you take part in the seizures you are constantly enduring.  I wish you didn't have to experience any of the hardships or limitations you have been given, but I must commend you on your absolute strength and determination not to let any of these things take you down.  I wish with every ounce of who I am that you did not have to live the life of a child missing such an important genetic protein.  There are so many times I feel so selfish for wanting you to keep pushing on despite all that you go through, but I also hope you understand that I would never want you to keep pushing on if you ever felt it is just too much to do.

You continue to bring out such joy and happiness to so many people.  You, yourself, all 20 pounds of you have made me an inspiration to others.  Do you know how many people have been able to make that sort of impact by the time they are three years old?   I will let you in on a little secret, very few.  You are a beautiful, strong, endearing, fierce little girl.  You amaze everyone who truly gets to know you, and you have influenced so many more people than you will ever know.  As painful as this journey has been so far, I cannot imagine where I would be, where our family would be without you.  I am so excited to be in the final planning stages of celebrating these past three years and am eagerly awaiting birthday week to begin in two days.

As always I am fervently praying that the next chapter of your story will be one filled with more ease and less days of hardships; but if it is not, I know you will be up for whatever challenge is sent your way and I hope you know I will be right there holding your hand, stroking your face, and kissing your forehead along the way.

Happy almost third birthday Sonzee Bear.


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Focus

In 27 days we will be celebrating Sonzee turning three years old.  There are so many emotions accompanying my preparation for this day.  Three years.  It will have been three years from the day our family began the wildest ride of our lives and the day our little bear began a life full of hardships no person should ever have to endure, much less a baby/toddler/preschooler.  It will also be a day we weren't sure she would be here to celebrate with us, so I am doing my best to focus on this as the theme and toss out the heartache that comes with celebrating another year of struggles she will be sure to endure.

I cannot lie, there is honestly so much heartache that every moment is a struggle to remain focused on the fact that she is here with us; simply because of the daily price she pays.  I do not know why it is currently weighing so heavily recently.  I can only attribute it to watching her seize so often and be locked inside her body for her entire life to date.  I have this constant lump in my throat as I force myself to hold back tears over these thoughts, but mama bears heart feels like it has been stabbed a million times, and sadly I know one day it will fully break.  As we get deeper into this journey, it all gets harder to accept.

On paper Sonzee is turning three in just 27 days, but there is nothing that represents that fact if you see her in person.  She is an almost 23-pound, 34 inch three-year-old who cannot sit unassisted, has limited control over her body's purposeful movements, and is nonverbal.  It is not about "needing to focus on the positives", these are simply the facts.  Facts that are making this soon to be birthday celebration a bit clouded.  I wish I knew how to have tunnel vision, but for now I suppose part of this journey is learning to accept what each moment throws at me and deal with it in the best way I can.

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Twenty Days

Twenty days, two weeks and 6 days, 480 hours, three different ways to countdown the amount of time remaining until Sonzee turns two.  A birthday I am so grateful to be celebrating, yet anxious about occurring.  Her outfits have been purchased and are sitting in our home, yet I sit here with a lump in my throat as I think about Sonzee as a two-year-old, a toddler; merely a year away from becoming a preschooler.  I know I should focus on the positive, but the fact is I am going to have a toddler who does not roll consistently, does not sit unsupported, does not reach out for me, does not talk, and does not crawl.  I am going to have a toddler who does not eat by mouth and who cannot chew solid foods.  My youngest is going to be a toddler and this is not at all how I imagined it would be.

As Sonzee gets older I must consciously remind myself that she is not actually a baby.  If it were not for the labels in her clothing or the fact that her birth certificate is dated 2015 this would be something I would argue.  I watched her in her bouncer as she was chewing on her hand and all I could do was imagine who she might have been.  I suppose some would say that is not fair, and there are some who are more capable than I am at accepting what they are given, but that is not me, at least not today.  I assumed things in all aspects would get more challenging as she got older, but it is one thing to assume and another to actually live it.  It is the latter that is far more difficult no matter how much mental preparation I try to give myself.

Another year of Sonzee's life is about to be in the story books, and it is one that I never would have imagined writing.  So many chapters were challenging to get through, and there are times I look back and wonder how we all made it to where we are today.  It is when I think of those times that I feel even more blessed of what we are about to celebrate.  Then there are the words that have yet to be written regarding her development, and it leaves my heart feeling weighted.  This is one of those times on this journey where the weight of it all sits heavily on my chest and makes it hard to breathe.  I sit here wondering how is it I will have the strength to continue doing this up and down on the see-saw for years to come.  I am sure as the years pass I will look back and think how naive I was to think that "that time" was the hardest.

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A tribute to Sonzee's oldest sister on her 7th birthday

I grew up as the middle child, smack in the middle of a big brother and a little sister, so besides the typical "middle child syndrome", I honestly do not recall ever being in the shadows to my siblings.  We all took the spotlight at one time or another and as a true testament to our great parents, they both attended everything that we ever took part in.  I never realized how lucky I should have felt nor how lucky I truly was to not have to live in the shadows of a medically complex sibling.

Today the baby girl who made me a ema is celebrating her 7th birthday.  I am an emotional mess as my heart bursts at the flashback of seven years of amazing memories flooding my vision as well as the heartache I feel over how much I have missed over the past two years of her life.  The sacrifices that have been made because of her birth order and thankfully fortunate health.  I think the life of a special needs sibling can be overlooked or passed over easily because "kids are resilient", but it should never be taken for granted.

As the oldest of four, the personal responsibility that our Laeya has placed on herself to take care of her siblings has been beautiful to watch unfold over the years.  She has always been a doting big sister eager to help, hold, and teach her brother and sisters.  She was given a special soul that shares a deep and unique bond with Sonzee that brings me to tears on a daily basis.  She ignores any grouchiness and just loves on her no matter the situation.  They have a connection unlike anything I have ever seen.  She tells us all the time that after she gets married Sonzee will come and live with her.  I cannot tell you how much joy and overwhelming peace it brings to my heart and mind because I know should this ever come to fruition, it will be the case.

While there is no shortage to the positive experiences having a special needs sibling has brought, there are similarly and sadly the same amount of less desirable situations.  No matter how much we try to protect her from the reality of the situation, she is not a baby, a seven-year-old "gets it".  There are situations she has sadly come to understand and expect and it breaks my heart that some of them are now routine.  No matter how routine it has become to miss holidays as a family or not be home for bedtime, she does not even show it, if that bothers her, she takes it all in stride.  She is one resilient, intelligent, sassy, loving, sensitive, and sweet girl.

My dearest Laeya, on today, your seventh birthday I want you to know that you have and will continue to bring a huge smile to my face and tears to my eyes as I watch you excel and grow into the beautiful person you are destined to be.  You will always be our Laeya bear, you will always be our first child, the one who we make constant mistakes on and learn from daily.  You will continue to challenge us and make us better parents (for that your siblings will thank you and probably hold a small grudge).  You will continue to outshine your previous performance in all aspects of life and I cannot tell you how much of honor it has been to be your ema over the past seven years.  I hope no matter how much physical time apart we may be forced to have over the years or how much time is spent "with Sonzee", that you truly understand that you are just as important and as valuable as her.  We love you and I hope this year will be your best yet!

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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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Sonzee Bear turns ONE

Beginning around the time Sonzee turned 10 months it really set in that she most likely would not be sitting by her first birthday.  From the day of her first seizure and when we later learned she would most likely have developmental delays, I still held onto the hope and vision of her sitting in her high chair with a cupcake in front her.  I pictured her like all of my other children hesitantly reaching out to touch the frosting and then taking a taste making a huge mess on her face.  I have loved the pictures of the messy smash cakes that I have of her siblings, I wanted to add to that collection.  As the day quickly approached, I knew it was not necessary to purchase a mat to place under the high chair.  I knew she would not be participating in this "coming of age" event, at least not for this birthday.  

Her birthday celebration was a perfect day in the sense that our closest friends and family surrounded us.  Sonzee participated in her favorite event of sleeping, and I suppose she had a right to celebrate her birthday in that fashion.  She had the most spasm episodes in the past week of course all throughout the day and that of course was disappointing to say the least.  I wish she did not have to suffer all the time.  I was distracted by everyone in attendance so I did not have a chance to get emotional about everything that was not going the way I had envisioned.  To be honest, the only time I almost cried in front of everyone was when I brought out the cupcakes and everyone began to eat them, but we had not even sang "Happy Birthday".  At the same moment, I looked over at the bear and she was peacefully asleep.  I was hit with a mixed bag of emotions all at once.

The little bear decided to grace us with her presence shortly after.  We ended up being able to take a picture of Sam and me holding her as I held her special cupcake.  There are no cutesy pictures of her diving into the cake with carelessness.  There are no pictures of her all smiley or crawling around in a mixture of cake batter and pink/white frosting.  On the positive side, that is not something that NEEDS to happen with every first birthday, it is just something that I like to have happen.  I can focus on the fact that she enjoyed her special day the way she loves to spend her days.  I have pictures of her cuddling with various people.  I have pictures of her looking beautiful in her birthday outfit.  If I am honest with you, even focusing on the positive still has me left with an empty feeling in my stomach and some tears in my eyes.  However, I still have hope that on her second birthday, she will be sitting on the ground and able to smash into a cake for me to take a million pictures, and I have a whole 365 days to picture this momentous occasion.

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Dear Sonzee Bear

Dear Sonzee Bear,

In less than a day, you will be ONE year old.  That is completely unbelievable to me.  It is not because I cannot believe how quickly the year has gone, but more that I cannot believe how much one little person can manage to do in just one year.  You my dear little bear have been through more in your almost 365 days than I personally have in my 32 years of life.  You were born into a beautiful body that is so bewildered by your special and unique soul that it pushes you to your limits 24/7.  There are not many like you with the strength, perseverance, determination, and patience to be up for such insurmountable daily challenges, and even on your bad days, you deal with it all minute by minute with such grace.  

I have spent the majority of this past year siphoning through my feelings regarding this predicament our family has been placed into.  The predicament of welcoming into our family our fourth child, our third daughter, our second beautiful blue-eyed girl, our first child with a CDKL5 mutation.  The predicament of watching our little baby girl seize multiple times a day, while being unable to do anything to stop it, and feeling completely and utterly helpless.  I will not lie and say that the past 525,600 minutes have been spent with only laughter, smiles, and eagerness as we watched you develop into the special little one year old you are about to become.  I will not say that the only tears I shed were those of happiness as I watched you get to know and bond with your older brother and sisters.  I am unable to say that this past year was filled with watching you learn and explore this crazy world you were born into.

What I can say with certainty as I reflect on your FIRST year of life is that while it was not filled with the completion of typical firsts for you, you gave me the opportunity to experience many firsts of my own.  The first time I had to leave a child in the NICU.  The first time I had to spend multiple nights sleeping on a hospital "bed" next to one of my children.  The first time I saw a baby or a person for that matter have a seizure.  The first time I learned about epilepsy and CDKL5.  The first time I would learn about epileptologists, geneticists, and a long list of other medical specialists that I did not even realize existed.  It was the first time our family would be broken more times than I thought was possible.  The first time I had a glimpse of rock bottom and what it feels like to feel despair and hopelessness.  It has been a year of experiencing raw, pure, unfiltered emotions to their fullest, both good and bad,     

A wise woman whom I hope to be able to meet in person one day has said "I believe every person has a purpose...even if that purpose is to change you...then they serve their purpose."  Thank you Sonya Ahava for pushing me towards my purpose.  You have allowed me to be more open and vulnerable in all of my interactions.  You have taught me to truly not sweat the small stuff, and I know your siblings and father are most appreciative of this accomplishment.  You make me realize what is truly important in the smaller picture of "right here and right now" and what it means to be "living in the moment".  You make me want to take each day and make the most of it.  The two most powerful firsts I have accomplished since your arrival, are ones that took just about the entire year.  You have given me the ability to use my voice confidently AND you have taught me to trust my gut.  Both of these are skills I will continue to work on improving to make sure I do right by you and of course your siblings.

You have spent the first year of your life trying to do your best every day.  You get tired easily, but you pick up where you left off, always pushing yourself to go further.  You have an appreciation for the tiniest things, and while others may not understand, you see things in a different light.  You love to just take in the sights while sucking your thumb.  You love to be around your siblings, and crave social interactions.  You are improving with your physical skills and overall development.  With your achievements slow and steady, it has given us all close to you the ability to appreciate them that much more.  

As we all look towards your second year, I hope it is filled with the accomplishments of many physical goals as well as appreciation towards your capabilities.  I hope your upcoming year is spent with more happiness and less seizures.  I hope you continue to be content, but strive for more.  I want you to continue to grow socially and emotionally and I look forward to getting to know more about your cute little personality.  I hope you grace us with more and more of your smiles and we get to hear your laughter.  While I would gladly trade places with you in a heartbeat, that unfortunately will not ever be up to me.  Nevertheless, I will continue to do what it takes to help you continue to write the pages of your story.

Happy FIRST Birthday Sonzee Bear!!

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One Week

A lot can happen in just one week.  For Sonzee, one week is the amount of time she spent in the NICU after she was born.  It is the length of her first hospital stay the first time she was admitted for what I was certain were seizures.  A week is the length of time that goes by when we add up and tally the events of her seizure log.  A week is the amount of time that is left before my baby is no longer considered "a baby" in terms of her age.  In just one week, I will put my baby to bed and she will wake up "a toddler".  I am so torn with my emotions.  

On the one hand, I am so excited to celebrate HER and her birthday.  I cannot wait to celebrate ALL that she has overcome in the previous year of her life.  I am looking forward to the new year ahead and all that is in store for her specific cognitive, emotional, and social development.  I am so overly excited that we have her here to celebrate this day with us.  These are the facts that I try to focus on, that I try to repeat in my mind as her first birthday continues to creep closer, because there is the other hand.

On the other hand, her birthday is a reminder of the milestones she has not yet accomplished.  It is an unfriendly reminder that the goals that we created for her are still not mastered.  My soon to be toddler is unable to sit unassisted, and truthfully, even assisted she has difficulty.  My almost one year old does not have any words to communicate her wants or needs.  My soon to be one year old cannot hold her head up while she is on her tummy for more than a couple of seconds and she cannot crawl.  When she wakes up on her birthday, she will still look like a tiny 6-month-old, but she will be ONE.

In many of the ways, the blank canvas of her year to come is no different from any other child's, but in many ways, it is.  I am fearful of the year that lies ahead.  I dread the awkward looks and uncomfortable situations that will follow after people ask me her age.  I am scared for the new medical experiences we are going to be facing.  I am nervous about her first surgery and if it will be her only one.  I am petrified for what is in store for her seizure activity and all of the other things I do not even know are to come.  

At the same time, I am anxious to see if the ketogenic diet and RSHO control her seizures enough for us to wean off her remaining pharmaceutical.  I am optimistic that this year will be amazing for her growth in all areas.  I am excited at the potential of meeting our baby girl who is trapped inside her body.  I am eager to see if this year will be the year we can check off some of her milestones.  

In one week, I will decorate our bedroom door, where Sonzee sleeps, as I do for all of my children on their birthdays.  I will place a sticker on her onesie that says "12 months" and take a picture of her in front of the chalkboard sign in our playroom.  In one week, I will sing happy birthday and give her a keto-fied cupcake for her to taste.  In just one week, I will give her a present that she will hopefully find interesting and enjoy.  In one week, family will fly into town to celebrate a year that has gone by that was unlike any other our family has experienced.  We will gather around the Bear and celebrate all that she has accomplished in 12 months of life, and look forward to all that she will accomplish in the year to come.  In one week there will be a lot of smiles as we celebrate this joyous and momentous occasion, but truth be told, at the same time, there will also be a decent amount of tears.

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