2024

My hands hover over the keyboard, my mind empty of thoughts. I'm stuck, at a loss for words. This feels fitting because, since I started this blog in 2015, 2024 is the first year I've written only seven entries. The more I try to focus on finding words, the more tears fill my eyes, and that familiar discomfort in my chest grows.

Maybe it’s because there are no new words to share, no brilliance to offer, and nothing more I can say to myself that hasn’t already been said a million times since she died.

2024 marks another year that Sonzee never started and will never finish. There were no new milestones to celebrate, no fresh photos to share, no new moments to commemorate. We did, however, honor her with street cleanups and the completion of a new playground in her name.

2024 also brought more painted rocks for Sonzee, some of which have faded after four years, the paint and messages worn away. The cemetery continues to grow, with more people and more rocks scattered around. I wonder, when new visitors walk among the graves, if they know the rocks originated because of our little Sonzee Bear.

This year, Sonzee received more keychains and gifts from our family travels—perhaps the most since she left us. Keeping the top of her gravestone orderly has become more difficult, but I do it anyway.

2024 hasn’t made it any easier to answer questions about how many children I have. With confidence, I say “five,” but it’s the details that bring hesitation and inner conflict.

This past year, I’ve allowed myself to sit with my grief more often, though I still tend to suppress it, to my own detriment. I’ve felt more sadness, more emptiness, and more silence in my mind because of Sonzee’s absence. But I’m still uncertain what to do with all of it.

In 2024, I accepted that there’s no "fixing" grief. I came to terms with this in the same way I had to accept that a cure would never make Sonzee an active participant in her own life. I accept grief for what it is: permanent, ever-changing, and woven into the fabric of my existence. I accept that it will influence everything I do, every day. I accept that others, even family members, may never fully grasp the depth of grief’s impact. And I accept that there will always be a void—one that nothing can fill. It’s larger than everything else, and though it sometimes shrinks, it is never gone. It can swell at any moment, without warning, and consume everything. I accept grief, but I don’t like it.

2024 was the last year Sonzee should have been in single digits. It marked the beginning of “10 Weeks Until 10,” and I started leaving painted stepping stones at her grave. I hope, wherever she is, she’s able to step on them.

2024 is also the last year she lived longer than she will be gone. A concept my mind struggles to accept.

2024 was simply 4 years 10 months and 29 days without our little bear.

2023

As tonight turns into tomorrow, the 3rd full year will be complete without Sonzee physically with us. It has been 4 years since she was last alive at some point in a year. Tonight, 5 years ago was the last New Years eve Sonzee was alive. My last paragraph of my 2019 post leaves me, still, hollowed to my core, as it has done in other yearly recaps starting in 2020.

It is hard to say whether 2019 was Sonzee's worst year, she has had so many rough times during each of her years, I cannot say one full year was actually the worst, but I can say this year was certainly not her best.  I can say with assurance that as we close out this year, it is the one that leaves me feeling the saddest about where we currently stand, and extremely hesitant for what will come.  I feel like 2019 took a lot from our little bear, and along with it a lot of my faith, hope, and what limited positive outlook I might have been hanging on to.  2019 is another chapter I am glad to be turning the page on, but if I am honest, scared to be doing at the same time.  We have enough years under our belts to know better than to ask for calmness or for CDKL5 to be kinder to us, so for 2020, I will ask that whatever happens, I am able to see and truly believe happened for the best.

2023 was the year that I wrote my fewest blog posts. 46 (counting this one) to be exact. It was a year I learned the truth of that fancy saying I would say is my mother's most famous quote, "less is more". I wrote fewer letters to Sonzee on her blog this year than ever in her life and death, but more were written in my head. I shared less about my feelings and less about my grief, but the emotions of my grief were the largest they have ever been. I visited her grave less this year but felt her closer to me more than I have since she died. 

In 2023 I learned that although I have a lot of her items, the tangible items I have bring me less comfort than they once did. This year I truly learned she is with me more often than I want to give her credit for (or rather give myself credit for believing). I learned that signs are always there if I let go of the fear of others' opinions because I need to remember unless you have buried a child, you really do not get it. Clouds in the shapes of hearts and rays of light in a picture might be crazy for others to believe are my dead daughter, but it doesn't matter, because in 2023, I realized if it helps me that is what matters. 

2023 was a year I spoke about her less, but when I did, I didn't feel my 2022 or earlier need to justify her death. She was 4, she was my 3rd daughter, she was my 4th child, she died, and that is horrific. I learned that I don't need to soften anyone else's blow or ease their discomfort by stating that she had a genetic disorder. It isn't any less tragic because she never was typical, I don't know why I ever felt the need to make her death sound any less awful than what it is. 

2023 was the year that I was able to talk about her more with less tears. The tears still come, the pain is still present, but a lot of the time, talking about her over the last year just made me happy. 2023 was a year I was still presented with challenges when asked how many children I have. Sam seems to find it so easy to simply say, "Four kids here physically, and 1 in heaven". Huh, so simple, yet still for me, so complicated. 

In 2023 I became less angry about her loss and sadder about her absence. Avoidance was a significant part of 2023 because the pain is still present. I am still not ready to fully allow myself to grieve when it hits me, and I only sit with it for a little before I tell myself another day. Less is more is certainly true when it comes to grief. The less you allow yourself to do it, the more it returns. Maybe I'll learn how to accept the grief in 2024?

In 2023 I spoke to Sonzee's epileptologist and 2 of her 1:1 nurses, and many others who were part of Sonzee's life, honoring the message I read to her the day she was buried. In 2023 I introduced Sonzee to people who now bring her up to me and feel comfortable talking about her. 

To finish off my last letter of 2023, I will quote myself from the same letter referenced above. 

While I wish I wasn’t writing you a letter I am unsure you can even hear, my words will never be able to fully express how extremely grateful I am that you are no longer going to have to experience a millisecond of discomfort again, and that is what is going to be my forever comfort and allow me to put one foot in front of the other, because knowing you will now forever be at peace is worth every ounce of pain that will come my way.

As we close out 2023 and enter into a year that will become the last year of her death that will be less than the number of years that Sonzee was alive, I hope and pray that I will find a way to cope with this challenging reality. But I will continue to be indebted to Hashem, that she is living freely among many of her friends and will never experience any level of discomfort again...and so for that, I will gladly continue to take all the pain that comes my way as I struggle to live without my little bear.

2022

Two years ago today was the day Sonzee's stone was unveiled for the first time. It was the day I last read a letter to her out loud, it was this letter. Two years ago today was the last day of the last year she was ever part of.  As the clock changes from tonight to tomorrow, from 2022 to 2023, it will complete the 2nd full year without her ever physically being part of it. Tomorrow will be the start of the 3rd. In less than a month, 3 full years will have passed without her here. I wish the time passing by would get easier to process, and easier to manage, but it hasn't. 

2021 was a year filled with many firsts, but firsts in the land of grief I have realized only give way to the 2nds (and eventually the 3rd's), and the main difference between them I have learned is that the denial and the fog have vanished. It is still difficult to comprehend that this was the 2nd complete year I never stepped off the elevator at PCH and resided in any rooms on the 8th floor. It doesn't quite make sense that I haven't made the "please don't kill my daughter" cookies in over 2 years and brought them to Interventional Radiology on the 4th floor. I no longer would know the residents or interns, so many changes in just 2 years, but some things still remain the exact same.

2022 was the year I finished serving on the PCH ambulatory/inpatient outpatient PFAC, a position I took right before she died. After completing my 3rd term I realize it was time that I left that part of my life in the past. I no longer know the ins and outs of PCH. I no longer frequent any of the departments in the same manner. 2022 was the year I stated to accept that I no longer fit in that world. 

2022 was the first year I went more than days, weeks, and even at times, months from visiting Sonzee's grave. It became a place that honestly saddens me more than brings me the peace it once brought. It was the first year coloring her rocks happened at an infrequent rate, and somewhere along the way, even the monthly rocks stopped being made. 

2022 was the year that our family started to settle into newness, but for me, with a constant nagging at the back of my mind of how it would have been different with Sonzee here. It was also the year that I wish she would have visited me more. (Although I have no real idea how much she actually has been around) It was the year we settled into our new home, one that Sonzee never knew or lived in.  It is a home that would never have worked had she been alive still. I have often found myself wondering if there would have ever been a way to make it work, would we have ever decided to leave our first home had she never died? 

2022 was the year that I started to truly comprehend that grief is going to last forever. There is no getting over it. There is no moving on. Honestly, there is hardly any moving forward, but yet there is, at a significantly slow turtle pace. 2022 was still a tough year emotionally and physically.

In 2022 I found the most represented stage of grief was anger. I am still angry with her initial diagnosis, and I am certainly still angry she isn't here. I am at peace knowing or rather, assuming, that she is free from the pain, suffering, and horribly challenging life she was forced to live. Despite her assumed new found freedom, I am still upset and angry that this was the hand of cards our family was dealt. 

2022 didn't help me answer the question of how many children I have, nor did it help me to be ok actively parenting 4 rather than the 5 children I should be. I wish I could say that 2022 was the year I was ok with families of 5 or more children, but to be honest, I am still envious of what they have.

2022 was the year that allowed myelf to experience grief in all of its glory. It was the year I started to admit to others that sometimes medication is needed to be able to function after the loss of a child. It is the year I started to be less ashamed that I need that type of help. I hope acknowledging this myself will be a source of comfort and strength in others needing the same validation. 

This year was horribly painful in the world of grief. It was a long year that flew by quicker than I would have liked but yet not fast enough so that I can see Sonzee again. I have no idea what the nex year will bring in terms of grief and life after Sonzee. I wish I could end with some amazing quote that was inspirational, but all I have got is the words from Cord Overstreet...

I swear to love you all my life

Hold on, I still need you

I don't wanna let go

I know I'm not that strong

 

2021

Two days ago while in the shower, the words for this blog post began to fill my mind.  The first complete year spent as a physical family of 6, as a parent of 4 physically present children, as a "once special needs parent". As with most years, it was a year filled with many different firsts.

2021 was the first year since 2015 that I didn't ever live in a room on the 8th floor of Phoenix Children's Hospital.  It was the first year I learned just how challenging living in your grief can actually be. It was the year I woke up from the grief fog and fought the world of denial.  If I am being honest, I will enter into 2022 still not mastering the art of accepting and still struggling to allow myself to sit in my grief.

2021 was the year I struggled to balance the parent I once was, with the parent I am not and give myself grace because I won't ever be the parent I expected myself to be.  I spent a lot of 2021 learning to give myself grace in general, allowing myself to acknowledge that being a grieving mother isn't easy and to truly believe it is okay if I own that and fall apart. 

2021 was the year I began to truly listen to my body and my mind and make my limits known to others when necessary.  It was the first year I stop caring as much about other peoples' opinions and at times even expressed that their lives clearly didn't have enough challenges if they were so focused on the frivolous parts of life. Maybe that wasn't the most positive part of 2021, but on the other hand, it is extremely freeing to be able to file so many items under someone elses' "personal problem".

2021 was the year that Sonzee's siblings started to figure out the role she would play in their lives.  Some of them mention her and some of them don't, and I spent 2021 doing my best to accept that everyone grieves differently, and telling myself that it is ok.  It was the year that I wasn't sure how much her little brother remembered of her, but I learned he misses her a lot.

2021 taught me that the phrase "it's just stuff", while true, is still a challenge to accept in both heart and mind. Memories thankfully remain vivid in my mind, and while I fear the day they might no longer, for now, I continue to play them on a continuous repetitive playlist.  

2021 was a year I experienced every emotion of grief and then some.  Continuously.  In random order.  Over and over again.  2021 is the year I started to realize that being a grieving mom is really never going to hurt any less than it did the day it started.  The experiences that trigger the tremendous downfalls will change, but the love is far too great that the pain won't ever dull. That is okay.

2021 was the year that I spent the first 7 months posting throwback pictures of Sonzee's life only to realize one day it was far too painful to look at a single picture of her.  It was the year where I started to experience this grief lethargy that made doing typical parenting and daily tasks feel daunting and nearly impossible.  There is a constant lack of energy that makes anything Sonzee related almost impossible to do.  It was the year I stopped being able to paint as many rocks for her, to visit her grave, and in general to deal with anything related to her life.

2021 was the year that forced me back into a sort of reality with the start of the reopening of the world that essentially closed simultaneously with her death.  Then much like the journey of grief, the inconsistency and unknown path of where life with Covid will continue to take us in 2022, it is sure to introduce me to new challenges, new realities, and new acceptances.  Much like last year's uncertainty of how to celebrate the last year that we had her alive, I am unsure how to honor the first entire year without her ever being part of it.  As we head into 2022, I know she will grace me with her Sonzee bear essence and hopefully, it will be enough to carry me through another 52 weeks of life without her.

2020

A year ago I sat at my desk trying to find a way to convey my deepest rooted fears and feelings in my yearly recap without saying too much.  My heart felt this impending fear that 2020 was going to be Sonzee's last year.  I couldn't quite articulate my feelings without feeling like I sounded insane or as if I was premediating something not even humanly fathomable, but I can still feel the uneasy emptiness that consumed me as I wrote these words

I can say with assurance that as we close out this year, it is the one that leaves me feeling the saddest about where we currently stand, and extremely hesitant for what will come.  I feel like 2019 took a lot from our little bear, and along with it a lot of my faith, hope, and what limited positive outlook I might have been hanging on to.  2019 is another chapter I am glad to be turning the page on, but if I am honest, scared to be doing at the same time.  We have enough years under our belts to know better than to ask for calmness or for CDKL5 to be kinder to us, so for 2020, I will ask that whatever happens, I am able to see and truly believe happened for the best."

Rereading those words I take a deep breath and try to swallow the lump permanently stuck in my throat.  I try to use my magical powers to push the pain and heaviness that now permanently sits on my chest to the space that I am still trying to create within so I can learn how to live with it.

2020 was the year that definitely began with uncertainty.  I spent the first 17 days burying the pit that sat in the bottom of my stomach.  Sonzee went to her usual beginning of the month TPN appointment and we even visited with her palliative care dr and the community palliative care social worker.  We had gotten to the point where Sam and I required that buffer so we wouldn't end up in an all-out brawl over the vastly differently viewed same situation we were both in.  A day after her visit she had her routine GJ tube change where I received a call a classmate had been diagnosed with the flu.  I shrugged, nothing we could do now. 2 days later and 18 days into 2020 Sonzee spiked a fever.  Her sister's 10th birthday was now tainted with the potential of it being canceled.  3 days later, with a fluid retaining Sonzee,  and a negative flu swab (done to confirm my real fears) it was evident (to me and I am fairly certain nurse Paige) CDKL5 was going to win.

2020 was the year I learned far more than I could have ever wanted, thought of, or knew was possible about watching someone die.  2020 was the year I learned that the movies aren't accurate in their depiction of death and hospice.  After 5 times and 10 years of calling out birth times, 2020 was the year I called a time of death for my 4th child.  It was also the year I became a mom of 4 live children and 1 child in heaven.  

2020 became a year that my discussions changed from "I have a child who has special needs" to "Well, actually I have 5 children, but one of them passed away and she had special needs".  It was a year I spent trying to figure out how to parent a child no longer here while trying to figure out how to keep her spirit alive and continue to parent the children still left in my care.  

2020 was filled with more tears than I thought could be humanly possible to have.  It was also a year with so much love and support from those in our community both near and far that that fact alone brings me an overwhelming abundance of happy tears. 2020 was also the year that I learned you can actually run out of tears, but that becomes short-lived and they will inevitably find their way back into your eyes.

2020 the world shut down for a virus that kills less than the percentage of the likelihood of having a Sonzee, and I admittedly spent a large portion of my time struggling with that fact.  To escape the reality we bought a house in 2020 for ourselves in honor of Sonzee.  It is a place like a cemetery in that I know her spirit is there, but there are no active memories of her presence, so it's a dual-edged sword.

There was definitely laughter and smiles throughout the year and many positive gains all because of our Sonzee bear.  In 2020 Sonzee's outdoor classroom was created in her honor, as well as Sonzee's PEMU PJ closet gave out its first pairs of pajamas at Phoenix Children's Hospital.  Our relationships with our close friends became even closer as we now share a closer bond due to the loss of our little girls.  On the same token, because of Sonzee's death, I was able to share my expertise with a close friend of mine as she went through the same heartbreaking experience, making things come essentially full circle. 

I am unsure how to celebrate the end of the last year Sonzee ever lived.  I am even less sure of how to welcome a brand new year that she won't ever be part of, but one thing is for sure.  While 2020 was the ending of volume 1 of Sonya's Story it is only the beginning of the amazingly beautiful legacy that one little nonverbal, immobile, and a medically complex little girl started all on her own after living just 4 years 11 months and 23 days of one hell of a roller coaster of a life.

2019

I have been thinking about this post for the last couple of days, thinking how different this one feels to write compared to the previous four year in review posts.  While it has been just another year filled with too many doctors visits to count, approximately 15 or more ER visits, multiple procedures, two potential sepsis' due to central line hospital admissions, PEMU stays, routine meetings, nursing challenges, out of state hospital adventures, and the usual major decision making, it has also been a year that has provided some more specific directions for how we continue our care for Sonzee.

This year we were able to find a seizure tracking device that is actually able to detect Sonzee's bigger seizure types due to a company that was willing to give us a company laptop and the go-ahead to keep it until we figured out the best algorithm for it.  We are so appreciative for this peace of mind we have been given.  2019 was by far the worst year of seizures for her, and despite my firm stance on not trialing another medication, I gave in and it sadly turned out the way I anticipated.  She has had twice the amount of seizures than she did in 2016 and over 160 more than last year.  We end the year with her on 2 high doses of anti-epileptic medications, a rapid cycling VNS, and still no seizure freedom in view. 

2019 was the first entire year of her life she spent with a central line and one that was accessed 269 days of the year.  Having a port afforded her the opportunity of adequate nutrition, the ability to avoid multiple hospital admissions due to the ability to treat her with fluids at home, 1.5 times her hydration needs, and to still spend approximately 60 days in the pool getting her swim on; however, it resulted in at least 52 needle insertions and allergic or adverse reactions to numbing creams and antimicrobial patches.  Via her port Sonzee received Total Parenteral Nutrition (TPN) and Lipids in addition to her intestinal feeds and gained 4.2 pounds and approximately 7 centimeters.  However, nothing is ever without a cost, and so we also learned this year that she is anemic and for the majority of the year was Fatty acid deficient.  She is currently on or has had treatments to ensure neither becomes a problem in the future.

In 2019 it was confirmed her bone density is due solely to her CDKL5 mutation as her other genetic panels revealed no other genetic mutations.  Throughout 2019 she only suffered two new spinal fractures and one tibia fracture in January, but as of her March scans all bones were healing appropriately and she has (thankfully) not suffered ANY fractures that we are aware of.  In 2019 we learned her DEXA score is -11.8, which places her in the severe osteoporosis category (anything -2.5 and beyond is osteoporosis) and she is her endocrinologist's all-time 2nd worse DEXA scoring patient (yay?!)  During 2019 Sonzee traveled for the 3rd time to the CDKL5 Clinic of Excellence in Denver Colorado, gained a new interventional radiologist at Columbia Presbyterian in NYC, and added another orthopedic doctor here in Phoenix.

During 2019 Sonzee gained a new home health nurse and then 8 months later lost that same nurse so she can could further her career, but her favorite and first nurse since she started with home health nursing became her main and only nurse.  We also sadly lost our favorite clinical nursing supervisor with our agency due to scheduling, and also had yet another change with her DDD supervisor, but we are learning to adapt to these types of changes better.

In 2019 we learned that Sonzee's CVI score drastically fell from a 5 or 6 down to a 1 or 2 despite the fact that CVI scores do not typically worsen (unless there are extenuating circumstances), but she has managed to thankfully be a solid 2 out of 10 based on her December Opthalmology visit.  This, unfortunately, has left her with limited desire/ability to utilize her Tobii eye gaze device and so it sadly sits collecting dust in her room.  During her recent eye visit, we were also given instructions to begin patching again to try and help her better utilize what sight she has with fewer distractions.

The most challenging part of 2019 was watching Sonzee begin a steady decline in all areas of her health and visible zest for life.  2019 led Sam and I to many difficult tear-filled discussions and arguments with multiple professionals in order to determine what is really the best for Sonzee.  We signed a DNR and made the decision to treat her at home and avoid the hospital at all costs.  While the decisions were not easy to make and put a lump in my throat, we know this is for the best for her.  2019 was the year we fully began to fully embrace palliative care on a different level.  It was the year we refused treatments based on our confidence in knowing Sonzee best and with no regret, but with a tinge of sadness lingering in the air over the situation itself.

It is hard to say whether 2019 was Sonzee's worst year, she has had so many rough times during each of her years, I cannot say one full year was actually the worst, but I can say this year was certainly not her best.  I can say with assurance that as we close out this year, it is the one that leaves me feeling the saddest about where we currently stand, and extremely hesitant for what will come.  I feel like 2019 took a lot from our little bear, and along with it a lot of my faith, hope, and what limited positive outlook I might have been hanging on to.  2019 is another chapter I am glad to be turning the page on, but if I am honest, scared to be doing at the same time.  We have enough years under our belts to know better than to ask for calmness or for CDKL5 to be kinder to us, so for 2020, I will ask that whatever happens, I am able to see and truly believe happened for the best.

2018

I am sitting here at 12:34am on December 31, 2018, and wondering how another calendar year is coming to a close.  I looked back on my other New Years Eve posts and they all convey the inner conflict with wondering how another year has flown by as fast but has gone just as slow.  This year, however, I feel as if I couldn't quite keep up with all of the changes.  It seems like 2018 was a year with the most change, with the most ups and downs, and filled with the most uncertainty.  Without sounding as defeated as I feel, I feel 2018 was the year that I realized there really are some things that are impossible to overcome.  It isn't to say that 2018 was the year I gave up, but more the year I realized some things just need to be set free.

2018 was the year of more hospitalizations than 2017, with the longest one being 22 days.  It was the year she experienced her first ambulance ride and the year she experienced her first status epilepticus event due to a 2-hour long seizure.  It was the year I felt like my disappointment towards CDKL5 as an entity grew leaps and bounds due to the limitations this lack of protein has caused for her body.  In 2018 her overall health was all over the place and it is hard to make heads or tails of what if anything it might mean for what could potentially be in store for us.

In 2018 we added a new Endocrinologist to her already lengthy list of doctors.  It was the year we found out she had 5 active fractures at one time and they weren't from anything someone did to her.  It was the year she was diagnosed with having osteoporosis and having the bones of a 90-year-old woman.  It was also the year we were attempting to strengthen her physical capabilities and were left with a beautiful gait trainer sitting in the garage with her brand new only worn twice AFOs sitting on the handlebars due to her inability to weight bear because of her still unhealed wedge compression fracture on her spine.  2018 was the year we agreed for her to have a bisphosphonate infusion in the hopes it would help improve her bone strength, but instead, she is sadly still experiencing the side effects. 

2018 was the year she was granted the ability for her to be in her happy place more often than not by being gifted her very own swim spa in our backyard by Make a Wish.  It was the first year we participated in Make a Wish's "Walk for Wishes" and raised $2,000 for them.  It was the year we donated a wagon to Phoenix Children's Hospital and had a license plate placed with CDKL5 so we can continue to raise awareness of a growing but still rare community needing research to help those who are impacted.

In 2018 we learned Sonzee's CVI score fell tremendously; a score that is known to not waiver, yet she has suffered so many seizures, had so many medication changes, and experienced so much over the year that it is not so surprising that her vision would be negatively impacted.  She wore her glasses regularly and patched various amounts throughout the year.

2018 was not her smiliest year, but it was during the year that her smile came back when I wasn't sure we would ever see her real ones again. It was the year she went ice skating, started school for the very first time, and went to Dutch Wonderland in PA. 

In 2018 we had to start venting her stomach 24/7 as she was unable to tolerate even her own stomach acid.  She tried botox in her pylorus in hopes of helping with her motility.  She trialed multiple GI medications, and it was also the year that we finally demanded we do something more to address her GI pain.  2018 was the year she began TPN for an undetermined amount of time.  It was after 3 weeks her GI system appeared to thank us for the assistance and for making that decision.

During 2018, Sonzee went through (and failed) an additional four seizure medications.  It was the year we broke our rule of not having her take more than two seizure medications simultaneously and she ended the year on four.  It was the year we tried CBD (again) and maybe this time it will help her!?

2018 was a year that for some reason hit me down really hard.  It was a year that I feel drained what little hope I might have had, yet attempted to restore it in bits and pieces in various ways.  It was the year I feel took a huge toll on my psyche, my anxiety, and my spirit.  2018 was a really tough year in a lot of ways and it is a year I am ready to close the chapter of.  Moving into the next chapter of 2019 with CDKL5 by our side is a fearful prospect because we really don't know if it will make 2018 and all the years prior look like a huge blessing.  It is a gamble we have no choice but to make, and one I will take with a fake smile on my face in hopes that the days of 2019 will be kind to our little bear and make it become real. 

While I am apprehensive to see what lies ahead for Sonya's Story in the new chapter of 2019, I am also eager for the potential.  I am hopeful that 2019 will grace us with some semblance of calmness and be kind to us among whatever chaos is thrown our way.  I am hesitantly looking forward to the blank pages that lay before us and pray that only happiness, joy, and positive reporting will fill the next 365 pages.

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2017

As 2017 is hours away from coming to an end, so is yet another chapter in Sonya's Story.  Sitting here reviewing the past 365 days in my mind takes me on a virtual roller coaster ride complete with flashbacks.  It is always amazing to me how quickly the time has flown but how slow it feels like it is moving at the same time.  Just a year ago I was sitting at my computer writing 2016's end of the year post without a brand new baby in my arms, unsure of the trajectory of 2017, but hopeful because as of press time 2016 Sonzee was seizure free 71 days 8 hours and 26 minutes and she was alive after a touch and go 2016.  Her seizure control would last another 10 days and over the course of 6 weeks we would slowly lose any semblance of control.

Her struggles this year were different than in the years past and while they didn't require many emergent hospitalizations, it is hard to say that the year was any easier.  She did have her fewest emergent hospitalizations with the longest stay being only 8 consecutive days and only a handful of scheduled inpatient stays throughout the year.  Her health overall was relatively stable and while we didn't receive answers for everything, we did learn that her stomach dismotility was not a result of Sam's or my decisions and just part of the luck that came with her CDKL5 mutation.  The jury is still out on if that brings me any sort of peace.

In 2017 Sonzee's CVI score remained unchanged from 4/5 out of 10, and we learned she developed optic nerve damage in her eye due to her 6-month stint on Sabril.  She wore her glasses regularly and we patched her eyes 15 minutes each every day.  Her physical development was mainly unchanged with some decreases in head control and overall strength.  While it is challenging to say if was due to her mutation limitations, medications, or seizures none of the above aided with her gaining skills.  She is still able to roll back and forth, but I leave 2017 slightly disappointed with how that turned out.

2017 was the year we lost complete control of her seizures, going from 310 episodes in 2016 to 595 episodes.  While numb to watching these episodes on repeat daily, this was the year the deep-rooted fear of "is this the seizure that takes her" mixed with the pleads of "please take all of this away from her" planted themselves into my mind.  It was the year we were forced to use her rescue meds for the first time, and (sadly) now have to use on a weekly basis.  It was a year Sonzee failed an additional 3 seizure medications, we had to finally accept CBD wouldn't be her miracle and she underwent surgery to have the Vagal Nerve Stimulator (VNS) implanted.  It was the year we essentially threw everything we had at her seizures and inevitably fell completely short.

2017 was the year Sonzee turned two and officially became a toddler thus entering the dreaded CDKL5 toddler years.  It was the year she received her first pair of AFOs and Spio suit, two items that will provide her body added support.  She was approved for a communication device and she communicated to us she loves Bruno Mars.  It was the year she went to the dentist for the first time, experienced her first cross country road trip, and met Harper's amazing family in person.  2017 was the year Sam made me realize that no amounts of physical or alternative therapies no matter how expensive, will change who Sonzee is and we decided to encourage her love of being in pool and stopped therapies that won't necessarily be beneficial to her.  

2017 was a year that trampled my spirit to the core and the year I wrote my fewest blog posts.  It was a year that tested every single aspect of my faith and left me with pieces of doubt and many questions.  It was a year that I wanted to admit defeat and just give up on trying to beat CDKL5.  It was a year that I constantly questioned who allows a child to suffer so often and in so many ways.  It was a year that left me feeling continuously broken and challenged to find any ray of hope.  As we close out 2017 I feel my strength has been depleted and just like turning the page to the next chapter in any good book, I will wake up tomorrow in the new year of 2018, eager to see what will be written on the pages ahead.

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Resolutions

This morning despite Sonzee's friendly demeanor I decided to take her to the parent-to-parent group that meets on Friday's at the Foundation for Blind Children here in Phoenix.  Full disclosure, Sonzee really doesn't care for the introductory 30-minute music class and only 30% of the time enjoys the centers, because she would rather cuddle with Miss Barb or be pushed in her stroller by Mr. Justin until she falls asleep, so, we really go for me.  I have formed some amazing bonds with the Foundation staff and the parents I have met have become invaluable resources whom I feel like I have known my entire life.  There is a comfort to being around people who "just get it".  Today in the parent meeting we were asked what (and if) we had a new year’s resolution, and when it was my turn I replied that I don't/didn't make new year’s resolutions.  Later, as a general follow up question it was asked, "if you don't make a resolution, why?" 

Since this parent meeting to me is a safe place to let out all my thoughts I jumped on the opportunity to share my reasoning.  About three words into my reason I realized the tissue boxes located on the center of the table (that were kindly pushed to my direction) were going to be necessary to finish my thoughts.  I honestly cannot remember if I made resolutions prior to Sonze, but I am fairly certain it has never really been my thing.  In general, if I want to accomplish something I don't need a new year to make me do it, and if I have no intentions of doing something, then creating a "goal" isn't going to motivate my (lack of) interest in making the goal be completed.  Since Sonzee however, I have found that it is just far too painful to make any type of goals or plans on a broad level because then I am left with such a void and heartache within me if they are unable to be completed.

There are so many things that I wish I could do better, but I also know I don't have the energy or willpower to get them completed.  While it would probably feel rewarding if I did set my bar high and complete a task (such as making dinner every night of the week, packing lunches for the kids, being on time to appointments, you know do what every mom should because she is a mom), I am just don't have the wherewith-all to do them.   I am incapable of these "basic mundane tasks" since Sonzee's lengthy hospitalization in May.  Sure, it would be great to hold myself to a higher standard when it comes to being present every moment of the day, but my heart isn't always in that.  I cannot explain it, but my energy level is typically around a "blah".  Having Sonzee has broadened my horizons in so many areas, and living in the day to day with no set expectations is the only way I can survive.  I would rather withhold my participation in resolution making until it won't be setting myself up for failure.

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2016

As I sit here with just two hours remaining in 2016 I am left wondering (yet again) how another year has flown by so quickly.  I swear each year the days must shave off a minute or two at a time because I remember writing my 2015 post like it was yesterday.  Another chapter of Sonya's Story is coming to a close as a new one is just beginning.  Similar to last year, as I sit here reflecting on the months that have passed I am unsure what to make of it all.  The year of 2016 has left me with memories to cherish and ones I wish would not be etched into my mind as if it was stone.  2016 brought about many new introductions, emotions, and experiences as we continue to navigate through the world of special needs.  It was also a year of tremendous loss for our CDKL5 family, and maybe 2017 will not bring the same nightmares to any of our families.

2016 was a year of learning the ins and outs of the gastrointestinal system.  In addition to Sonzee's battle with seizures, she spent the majority of this past year simply trying to maintain nourishment and battle being failure to thrive.  We learned about alternative methods of feeding such as Total Parenteral Nutrition (TPN), a Gastrostomy tube (G-tube), and a Nasojejunal tube (NJ) all of which would ultimately save Sonzee's life and maintain it.  2016 brought about the labels of gastroparesis and small bowl bacterial overgrowth, which now have her on daily antibiotics to restore the good gut bacteria.

For seizures 2016 brought about hypsarrythmia (an abnormal interictal pattern, consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity seen on electroencephalogram) and infantile spasms, resulting in 2 months of a high dose steroid treatment and side effects that were horrific and some she will likely never outgrow.  2016 introduced us to various formulas and diets and brought about a brief stint on the ketogenic diet, which we learned, was not beneficial to combating her seizures.  Thankfully, after multiple medication and various medical marijuana trials, we found Sonzee's magic seizure combo (for now) of Sabril and RSHO hemp oil.  She continues to remain seizure free 71 days 8 hours and 26 minutes.

In 2016, Sonzee encountered her most hospital admissions (6 times) and longest lengths of stays at a hospital (28 days), countless bouts of viruses, colds, and infections, and longest consecutive time spent on antibiotics.  Sonzee spent too many hours in pain and uncomfortable for me to want to remember.  Overall 2016 was not a healthy year for Sonze.

2016 was the year Sonzee's CVI (cortical vision impairment) improved from a 2/10 to 6/10, and she received her first pair of glasses.  While there are no huge developmental milestones for little bear, her core strength has improved tremendously and the bottoms of her feet have some resistance when they are pushed against.  She continues to roll in both directions and she is able to grasp hanging objects and hit them.  With the gains she has made this year there is no saying where she will be in the year to come.

As 2016 comes to a close, I am left with immense gratitude that Sonzee is able to physically welcome 2017 with us, because there are too many mothers tonight not afforded this opportunity.  To all of those whom I know, my heart is thinking of you and your baby's tonight.  2016 is not a year I wish to repeat, but as I sit here tonight, I am filled with a renewed sense of strength and hope for where 2017 will take us and I look forward to this chapter of Sonya's Story and hope you come along with us. 

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