1:08pm February 3, 2020

Today, Monday, February 3, 2020, at 1:08pm our Sonya Ahava Zaila, better known as Sonzee, took her last breath in the comfort of her bed, in her room, in the same house she was brought home from the hospital as she was surrounded by family and friends who loved her beyond measure.

She spent 4 years 11 months and 23 days bravely enduring more pain, discomfort, and challenges than any person should have in his/her lifetime, however, she also spent her life accomplishing more than many people will during their lifetimes while having an unlimited amount of amazing experiences.

Sonzee was the 4th of 5 born children and was born on February 11, 2015, at 5:57am in the same hospital as all of her siblings.  She loved her mermie, pacifiers, the color red, being read to, anything shiny, and the sound and feel of crinkle paper.  Her favorite songs were "Hooray for Sonzee" and "The Hampster dance". Sonzee enjoyed using her feet as her hands and was known to kick others just for fun, but would also use her feet to communicate by pressing communication switches with them.  Sonzee had many unique talents, such as being a master at seizing, eating via her intestines and through a central line, and communicating with her eyes.  She milked her queen status by being carried or pushed in an overpriced adaptive stroller due to her limited mobility. 

Sonzee's absolute favorite activity was swimming, however, she could also be found driving up and down the sidewalk and the driveway in her pink adapted sports car.  Sonzee enjoyed ice skating, roller skating, sledding, traveling in general, cold breezes, dancing, and taking long walks in all temperatures.

Though Sonzee never said a single word, she touched the lives of many and will remain a constant inspiration.  She is the reason that a non-profit organization was created to help raise awareness for CDKL5 and to give back to the many organizations that assist in the care and enhancement of quality of life.  Her legacy and impact will continue for years to come in various ways.

February 3, 2020

Day 11 of Hospice

Dear Sonzee, 

The stroke of midnight would begin the longest day of our lives, but your shortest.  3 hours ago we had our in-home shift change and nurse Paige came back to the house after going home to shower and change.  We anticipated you would have already passed away by now, but you were still physically here.  She would sit with us and rotate with moral support since she was officially off the clock.  Auntie A and I stayed by your side doing the medication rotation.  At this point, it was so often neither of us could really sleep.  You continued to breathe and I will leave it at that.  It isn't the type of breathing that makes you feel comfortable hearing or watching as a parent, but it is the type of breathing letting you know that it might end soon.

I forced myself to take a shower at some point.  Aba and I left the room for a bit on purpose.  Auntie A whispered in your ear and even called the time at one point only to say it was a false alarm.  So many tears had fallen I could have sworn my tear ducts would dry up, they hadn't, and they didn't.  

By 2am we sent nurse Paige to sleep in our room, she needed to sleep in case she would be working in the morning.  We told her we would wake her up if anything changed.  She was able to get in a few hours of sleep.  By 3:30am I lost my cool and called hospice.  They came out to listen and to remind us that it could take any amount of time, that you were in charge, and that this really is the awful part but as long as you were comfortable there wasn't anything that could be done.  You were comfortable, I know that...but to be honest, I was far from that.  

We took turns holding you, laying with you, and making sure you knew we were there.  Maybe that was the problem?  I am sorry if we gave you reasons to hang on for so long.  I am sorry if we made you linger when you were ready to leave.

In the morning your siblings decided to stay home from school.  Laeya had been torn about the decision because her class was going to have an event at one of her teachers' houses and she didn't want to miss it, but she also didn't want to leave you.  I could sense her struggle.  By noon we sent her and assured her if anything happened we would send Auntie A to come to tell her.

Our palliative care social worker and nurse came by around 11:30/12.  We all were sitting in your room.  I for the first time in 2 weeks laid you alone on your pillow and sat with my back against the wall.  No one was holding you anymore, we let you rest, but we were all there.  Noam went to take a nap, Meena and Tzvi were just being themselves somewhere else in the house, I am not even sure what they were doing.  The conversation was not focused on you, we were just laughing and talking.

At 1:04pm aba ran into the room.  He climbed into the bed and I remember being slightly annoyed that he was claiming the space directly next to you when I specifically had moved away.  I can't explain why little things irritated me, but they did. We resumed our conversation, and the social worker and nurse were scheduling their next visit.  The social worker kept looking in your direction, I chose to ignore what her eyes were communicating, but I knew she noticed some sort of change.  I had secretly as well, but I just kept focusing on the conversation. 

I looked at you, I looked at the clock, and I remember aba's panic.  I reminded him that you had done the breath-holding multiple times over the last 2 days (but I knew this time what it meant), he began to cry, but I felt a feeling of instant peace mixed with relief that your pain, suffering, seizing, and complications were finally over. At 1:08pm as your baby brother napped in the room next door, as your 2 older siblings were being themselves, as your biggest sister said her part in her class performance that was caught on film at the same exact moment, as life was literally continuing on, and you were satisfied with how it looked from your view, you took your very last breath.

I hope and pray the amount of love we gave you up until your last breath is enough to stay with you for your forever and beyond.  Until next time.

Love always, 

Ema

February 2, 2020

Day 10 of Hospice 

Dear Sonzee, 

Today was the last Sunday you ever lived.  Today was the last complete day you ever finished.  Today was one of the worst days of my life, but I am hoping for you it was close to being one of your best.  Today was a day that your soul was no longer in your body, it was obvious, but yet you continued to breathe and be physically present.  Of all the situations I have ever been faced with as your mother, these next and last 36 hours were by far the absolute worse.

As you know, we weren't given a time line, but I can't tell you how many times I would hear from the new hospice nurse each shift that they would find it hard to believe you would still be alive for x amount of time.  Then that time would pass.  

Aba and I agreed we wanted to remain at home with you.  We hadn't really ever spoken about transferring you to Ryan House during the week, but when I mentioned I wanted to remain at home, he didn't say anything against that and I remember feeling such a sigh of relief.  Nurse Paige worked today, but she was supposed to leave at 4pm. I was petrified of you dying without a nurse present.  Thankfully hospice worked out that one of their amazing nurses would come and spend the time with us.  He sat with us for hours.  He had been privy to some unnecessary family drama over his time in our house, but he lightened the mood when he said it wasn't the first time.  I wonder though if he just said that.

He said he could stay until 8pm, but when it was getting close to that time, you were still with us and I panicked over being alone.  He mentioned your time was limited, so we called Nurse Paige.  She came back.  I think by 9:20pm he left, and nurse Paige wouldn't end up leaving until after you took your last breath.  I was always so thankful for her presence in your life and our life throughout your life, but even more so during your time on hospice, and especially the last few days.

We took more pictures with you and of you today.  The one regret I will always have is after Laeya took a selfie with you I said I didn't want any more pictures.  The picture of you two is so hard for me to look at, but in saying no more pictures, that in turn meant the last pictures of us together occurred today. It would take another two months for me to realize the repercussions of my request.  I wonder if I had allowed pictures if I would wish I hadn't?  I guess we won't ever know, but as another learning experience, I share with those on the same path, take the pictures, you can always erase them or just not look at them.

I won't go into the details of how you presented today.  I think that is something best left to those who have to endure this indescribable experience.  I also don't have the ability to write it out in words.  My last letter from our time on hospice will be tomorrow.  Until then.

Love always,

Ema

February 1, 2020

Day 9 of Hospice

Dear Sonzee, 

Today was Shabbat.  It was the last Shabbat you would spend with us. The day was a horrible, horrible, horrible day.  You had the very last seizure of your life today, and you received the nasal rescue medication I argued too many times about getting with the insurance companies and CVS. Today the hospice team came out a few times to try and help us keep you comfortable.  It was a day filled with many tears.  We finally managed to get you comfortable with round the clock medications.  That was a tiring and awful task, but one that I felt made your life come full circle.  I had always thought at this moment it would be time to move you to Ryan House so I could be just mom, but, in the end, I wanted to just do what I had done your entire life.  It made sense, but I couldn't do it alone.  Auntie A would end up staying up with me all night to help.

Today would be the last day that we would see your eyes open.  Today would start this horrific battle within my mind.  On the one hand, I wanted you to be at peace and comfortable and I would continuously tell you that it was okay to leave, but on the other, I didn't want you leaving.  It is difficult to admit that some of my thoughts led more towards wishing this process would simply speed up.  It was excruciating because at this point I wanted it all over, but I didn't want you dying.  There was no way to have one without the other.  Nothing could ever be worse.  I watched you seize and suffer for close to 5 years, and yet watching you slip deeper into death over the next 48 hours will be something that haunts me for the rest of my life. 

We were told you would likely die soon, but there was no way to know when, and it was completely up to you.  We were told children can be very particular about how everything pans out, some children want their parents by their side, and some capitalize on the one moment escape from the room.  I forced myself to leave you to shower, I tried to make sure you knew it was ok, but I know aba was not really on board.  Our continued conflicting unspoken opinions I am sure made it all the more challenging for you.  I know deep down you knew that neither of us would ever really be ready for you to leave us, but you also probably knew that we were ready for you to stop suffering.  In true Sonzee fashion, you would make sure it was all done the way you wanted.  In true CDKL5 fashion, my type-A personality wouldn't matter.  I wouldn't be privy to any insider information.  I wouldn't have any upper hand in how any of this was going to pan out. I would simply just have to sit back and continue to be a bystander of your life, unable to truly help you.

Until tomorrow.

Love always, 

Ema

52 Weeks

Dear Sonzee, 

52 weeks.  52 Mondays.  2 days away from an entire year on the gregorian calendar.  How? What? Why? I don't understand how it feels like it was this Monday, today, that I held you one last time and gave you a kiss on your cheek.  I can feel your weight in my arms, I can feel the softness of your cheek, I can remember my lips kissing your forehead, whispering in your ear, and the feeling of the curls on your head.  I hope and pray they are things I never forget, no matter how many Mondays continue to pass.

Last Monday I chaired my very first ambulatory PFAC meeting.  I was so nervous and relieved after I finished when everyone told me I did a good job.  I took so many notes for our meeting that is happening today, I am still just as nervous, but maybe I feel calmer after today.  This past week was fairly routine for all of us, except aba went to visit savta so I was flying solo all week.  We all made it through and your siblings even stepped up their games by preparing their snacks, water bottles, and masks the night before school so we don't have to be scrambling in the mornings.  They still enjoy sleeping in every school day and waking up ridiculously early over the weekend, but I don't know if that will ever change.  

We were supposed to go to Bear Pines over the weekend, but your siblings can be really lame sometimes and they decided they didn't want to sit in the car. I went up yesterday with bubbie and there was so much snow piled to the side of the roads, I was in awe.   Our Snowzee that measures the snowfall is completely buried, I had to laugh, clearly, we got a wee bit more snow than she can measure.  Our driveway has a nice clear path thanks to someone we have come and clear that and porch off when there is more than 6inches at a time falling, and the drainage area to the side is completely packed with snow, so it is actually making our driveway a bit bigger.  However, you have to park away from the sides because if not you cannot open the car door.  On that note, the backdoor is pretty comical to look out of, considering the snow is halfway up.  You can hardly see the bridge, and forget the rocks.  I went to the mailbox and laughed as I climbed 3ft up to open the box to check inside.  There are so many icicles hanging from the roof and they are taller than Noam, and maybe even Meena, I took pictures from the side, they could surely cause harm if they fall on anyone.

Today starts FBC returning in person, I am seeing my virtual caseload today, and starting in person tomorrow.  I am planning on going to West Valley, Wednesday, but I am honestly unsure how that might work out.  I may attempt to show up and see how it goes, I just don't know how I will feel, but it might be nice to be there. It's all so hard.  

I still don't have anything planned for Wednesday? What do you even plan? I can't. There is nothing to celebrate, just to honor, and that lately just involves tissues, tears, cheesecake, wine, and painting rocks.  52 weeks of this and I still have nothing figured out, it still feels awful.  I was able to tell someone yesterday that on Wednesday it will be a year since you died.  I didn't cry saying the words, so that was a plus?  The tears started to come shortly after when I continued to tell them about why we named Bear Pines what it is, and why there are bears and red accents. So I guess I can count delayed tears as a positive baby step?

I am torn between waiting for a time that things get easier, or different, and afraid of when that time might occur. It all sucks, it always will, but knowing you are at peace means it isn't sucking for you and that makes me as happy as I could possibly be.  I miss you beyond any words and love you the same.  Until next time.

Love always, 

Ema