For now

It's been 11 days since I last officially parented Sonzee.  The numbness of it all is slowly fading, the auto-shutoff mechanism that my brain so kindly installed is beginning to malfunction, and I am having more difficulty figuring this whole portion of the journey out without her.  Yet at the same time whether she is physically present or not, the whole mothering component apparently doesn't go away, it just changes.  Instead of managing her medications, calling doctor's offices and insurance companies, making sure her supplies are arriving and keeping on top of nursing and the billions of other items that I took care of for the previous almost 5 years of her life, my mothering has turned into making sure the pinwheel at her grave points the right direction to spin in the wind, organizing the rocks around her plaque and planning the perfect headstone and accompaniments for her plot.

I honestly never thought about what parenting her would look like after she was no longer here.  I didn't even know it was a thing to consider.  I didn't consider that I would need to find a way to continue being her mom, I didn't consider that I would begin to fear that one day there might not be anything left for me to do for her.  While I did wonder who would take care of her, who would make sure she was looked after, who would play the role of her mom, and who would hold her hand while she crossed the street, I reassured myself that she would not require her medication, physical assistance, or most probably even require supervision.  However, no matter what I tell myself, the innate mothering in me is having some difficulty accepting those facts.

I was only four years 11 months and 22 days into my special needs mom role.  I was finally feeling pretty confident in my ability to mother her.  I was finally feeling that "I got this" attitude because I did.  Looking back I remember those first days of the NICU, those first days of constant doubt, those first days of seizures, those first days after her CDKL5 diagnosis, those first days after every single missed milestone, and those first days after every answer the doctors' gave me didn't quite add up and I was left with doubt.  While I never fully accepted that she was meant to suffer, or that she had a CDKL5 diagnosis, I eventually accepted that my lack of acceptance was ok.  I eventually accepted that I didn't have to agree with the story she was sent here to tell, it wasn't my place. So I know eventually I will accept that I won't accept not mothering her in the same physical manner I will my other kids, but for now, I will give myself another 4 years 11 months and 22 days to even consider it.

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

To Be Continued...

I started making Shutterfly albums in 2008 after Sam's and my honeymoon.  It was the first company I was told of at the time that allowed me to not have to go to the store to get physical prints of the pictures in order to make a scrapbook.  Since I love to document as many of life's events as possible, having a way to create an album from the comfort of my home was fantastic.  After our honeymoon, I continued to use Shutterfly for all of my picture needs.  My intention has been to document as much of our children's lives as possible so when they grow up and move out, they will have these books to remind them of their childhood.  Since each album to me is just a snapshot of a moment in our life waiting for the next album to pick up where the previous one left off, on the back cover of every album I place a picture with the words, "To Be Continued".

While the series of Sonzee's books will have far fewer volumes filled with pictures of her life here with us, there is no way that her story has been spoken for the last time.  There is no way that her impact here on this world in a physical manner has come to an end.  I know that her physical presence is no longer needed here with us for her purpose to be known, but I know that in her short time, she merely planted a seed for whatever her purpose was to be cultivated without her having to struggle alongside. 

As it was pointed out during her funeral in a quote by Terry Pratchet,  "No one is actually dead until the ripples they cause die away", and I realize I do not even know the depths to which Sonya's Story has sent ripples.  For a little girl who never spoke a word she has shared quite an amazing story.  She has positively impacted and inspired so many, that my level of pride and joy has jumped off the charts.  I really hope wherever she is she is able to see how many people love her, miss her, and are forever changed because of her, and because I know she has more to say, just as every one of my albums ends, this one will also include, "To Be Continued".

Part 2: Window

From the moment Sonzee passed I felt a sense of calmness, an immediate peace.  It is a huge relief to know she is no longer suffering, to know she is no longer going to be in pain, to know she is no longer going to be trapped in her body, to know she is free.  That peace and calmness are due to my faith, it is due to the belief that being in heaven (Gan Eden) means she is free from her earthly challenges and limitations, but to be honest, there is a part of me that lacks some confidence in that belief.  There is a part of me that needs to see some proof, there is a part of me that is wondering what exactly she is doing and wonders if she really is ok.

I wish I knew who was there to greet her when she left us last Monday.  I wish I knew who was holding her hand and giving her a tour.  I wish I knew if she was able to check in on us, to see that we are missing her, but hearing us say how grateful we all are that she is no longer suffering.  I wish I knew if she was making new friends and if she was able to meet up with her friends who passed before her.  I wish I knew if she was missing us and scared and who was there to comfort her on her tough days.  I wish I knew who was playing the role of her ema and if they are enough to help her adjust.

Today I spent a large portion of the day curled up in her bed, thinking about how I am going to decorate her grave on Monday for her birthday on Tuesday.  I let the events of the last 3 weeks playout in my mind, reliving every moment, analyzing our decisions, and wondering if there was any way we could have changed the outcome.  I know deep down unless we had a crystal ball last August we never had a chance of changing the course.  I also know even if we had that ball, all that would have done is let us know our time with her was nearing its end, and to be honest, I felt it in my soul anyway.  I know we did our best, I know her body never stood a chance and I know she has to be better off anywhere but here.  But I wish I could sneak a peak in through a tiny window for just 10 seconds to see if she was floating in a pool eating an ice cream sundae or running around with some friends, or sitting in a swing feeling the breeze hit her face...just so my heart could maybe be in the same book as my brain.

Lifetime

As parents, we do our best to soak in every moment we have with our children and make sure to give them as many experiences that we can possibly offer.  Mainly because they are only little once and because the years fly by so quickly, but deep down there is the fact that tomorrow isn't guaranteed for anyone. We provide them with social opportunities, enroll them in extracurricular activities, take them on trips, and try to provide the most caring and loving environment to foster a lifetime of happiness.  No matter the type of child being parented, the situations may need to be adapted, but any loving parent will do their utmost to fill those first 18 or so years of their child's life with what they feel is the best for them.  In return, the payoff is watching your child grow older while developing their own sense of self and eventually one day moving on to do the very same with a family of their own.

Unfortunately, as Sam and I as well as too many other parents to list have learned, sometimes the typical way of life just isn't what is meant for everyone.  The typical parenting experience is derailed and you learn to adjust the opportunities that are provided, but always, the opportunities are provided, always the love is given, and always you watch your child develop their own sense of self in a different sort of way.  It isn't always clearly communicated, it takes a lot of guesswork and supports, but, your child is still the person he or she is as an individual, but one who just requires some level of assistance.  Regardless, you spend your moments with them the same you would as any parent, loving on them, kissing them, talking to them, playing with them...simply, parenting them.

But then there are special situations.  The ones that are unfathomable, the ones that aren't at all able to be processed because they simply don't make sense.  They are the situations that result in an ending that defies the order of operations.  Sometimes, if you are lucky you get a warning, and you get to prepare, whatever that really means.  You quickly make sure to squeeze years of moments into the shortest time possible.  You spend all your time thinking of every memory you might regret not having because you know you aren't ever going to have the chance again to get to them and you find a way of making it actually happen.  You spend all of your time loving on them, hugging them, and kissing them, but all the while wondering, how on earth you are going to get enough to last the rest of your lifetime.