Grief Depression

Last week, we celebrated our fifth Rosh Hashana without Sonzee. Sitting by the window the first morning, my brain started to write like it used to. Three days later, I hope to remember what I need to get out of my mind. 

I spoke to someone last week who mentioned they were comfortable enough with me to make a comment that when someone is depressed they just want to give them a list of things to do because that will occupy their time and they won't have time to be depressed. Ha! I thought to myself if you only knew what the true weight of depression feels like. I cannot speak for typical depression, however, I can speak volumes for grief depression. That is if there is even a distinction between the two? I honestly do not know.

It has been 4 years 8 months and 3 days that I have been living with grief depression. I am unsure if that makes me an expert or not, but I feel like it gives me some merit. It has been 3 years 2 months and 3 days since the unspoken time limit of my grief should have ended. (You get a solid 18 months to actively, openly, and without fear of judgment truly grieve your child, after that, the timer on the invisible clock beeps, and the grief and depression of your dead child disappear, as simple as saying "grief and depression be gone!") JUST KDDING, they don't actually disappear, (SURPRISE!) we bereaved parents just become pros at keeping it bottled up, safe for only specific people, or only letting it out accidentally when the emotions become too overwhelming to suppress. 

The truth is, my days are beyond busy. Between working full time, taking care of a home, and working the evening taxi driving shift for the 4 remaining children I have to their various after-school activities you would wonder how I could actually have time to add grief depression to my list. I assure you, like 1000 pounds of bricks sitting on your chest it is there. Suffocating its recipient to the core, making it beyond difficult to literally put one foot in front of the other. There is no real choice in the matter. Can you imagine telling your boss that you aren't coming to work because the weight of a collapsed skyscraper is sitting on your chest not allowing you to move? Do you think your living children would understand if you said, "Sorry honey, no gymnastics today, your dead sister has tied me down to the chair and I am unable to get up to drive you". Grief depression at its lightest is a 5lb bag of flour sitting on your chest. You shift it around in your arms for yourself to make it appear easier to carry, but the reality is, it is not. In the words of a favorite princess, "conceal, don't feel", becomes a daily mantra. 

Life continues to go on and quickly at that. There is little time to wallow in the grief depression, and sometimes wallowing is even too exhausting, but if you wanted to know where I will be for the next week of my fall break, it will be basking in the depression of my grief on my couch playing FarmVille and allowing the weight of the fact that I buried my almost 5-year-old little girl 4 years 8 months and 3 days ago sit right smack dab on the center of my heart, because grief depression is heavy and sometimes you need to relearn how to carry on with it because it moves itself right on back to the very top of the to do list. 

Moving forward

There are days that you experience during your life that you remember so vividly it is as if you could relive them in your mind. They are typically the best days of your life or sadly the worst, but there are those days that are not quite so simple to categorize. The ones that tug at your heart because they represent both a beginning and an end of a period, or an experience. Those moments, similar to the best and the worst also find a way to settle into your mind and sit forever in a crevice. The emotions that come with them are a blend of happy and sad, panic and calmness, a burst of tears and a deep breath, complete opposites like the crashing of a wave and then the receding water back into the ocean, an earthquake that comes lasting for less than a minute and then ends, or a breeze in the wind that slowly fades away.

I've learned over the 4 years 2 months and 4 days that grief is a constant battle of finding the balance of my inner ocean. For the most part, I do my best to keep the crashing waves subtle, but there are days on this journey when the crash is impossible to ignore. There are days when the balance feels insurmountable. Those questionable days become just as significant as the celebrations of her life and the honoring throughout and since her death. These days in a sense aren't negative, but it is difficult to call them positive. They are what others would call moving forward, and yes, in a sense that would be correct. But something that I have also learned on this journey is that when they tell you you won't move on, that you will move forward, that doesn't mean it will be easy and it doesn't mean it won't hurt like you just buried your child all over again. 

I remember the first day I had a conversation within my mind over not going to visit the cemetery for the first time after Sonzee died. I watched the clock tick by knowing as time passed so would my opportunity to sit by her grave. I knew when the clock read the time I needed to leave by to beat the gates closing that if I didn't get up and go I would miss my chance. I sat there and reminded myself that I wasn't going for her, I was going for me, and I was truly "ok" not going and the sadness was the fact that I was ready to not go. I remember the pain that swirled in my chest and the overwhelming sadness that swallowed me whole, the intense guilt that it brought along with it. I did it though, I watched the clock strike 4pm, and I was okay, life was moving forward. 

I remember the first sibling/cousin picture that happened that I "forgot" to put a "stand-in" for Sonzee. I remember reminding myself right after it happened that it meant it was okay, it was part of the process, I was moving forward. I felt panic, sadness, and tears, again with the guilt, and the realization that it was okay, life was moving forward. 

I remember the first time I stopped writing Sonzee weekly letters. Like visiting the cemetery, they too were more for me than her. I found a new way to communicate with her, I didn't need to send her a letter on a blog. The guilt settled in strongly paired with so many other emotions. But, like the other events, I was okay, life was moving forward.

In May of 2020 in the throws of COVID, 3 months after we buried our Sonzee Bear we ventured to Flagstaff, and like much of the things we have done in our marriage, we threw a random dart and did something crazy, we purchased a house in Kachina Village. That home became our Bear Pines, our home away from home, our family retreat, a place Sonzee's baby brother labeled "other home". That home was more than just a house, it was the place that held my sanity together and brought us so many insane memories. It was a place that filled a void and gave so many others a sense of peace to venture to. But, like so many experiences since our Sonzee left us, it has served its purpose. Our family as a whole is ready to move forward. There is hockey and gymnastics and adventures that remove our ability to go up north for the weekend. I know that life continues moving forward, I know that selling Bear Pines is the right thing to do, it is time, and we will be okay because life is moving forward. 

The pit in my stomach and the tears streaming down my face are not because I am sad that we are selling, it is because I know I am ready and it breaks my heart. It's how I felt when we sold 19th street, allowed the insurance company to throw away her wet furniture after the flood, and painted over her medication door. Moving forward is so hard. It is filled with tremendous guilt, questions over how she will be honored now, and fear that eventually, I will leave her completely behind. The tears, the sadness, the red eyes, and the horrid ugly crying is because moving forward is so freaking scary, and I miss her so damn much. But deep down I know, like every time before, it will be okay...because life will continue to move forward. 

Cop out?

During Sonzee's life when someone would outright state or even insinuate that their problems weren't equivalent to what our family was going through, I was always quick to stop them and let them know that it wasn't fair to compare. Everyone has their own challenges and threshold of what they can handle, and it isn't fair to assign weight to them. I always felt that comparing anything besides a comparable life was equivalent to comparing an apple with a pineapple. They share the category of fruit. Diminishing what someone else is experiencing doesn't make what challenges another person any heavier. They both are what they are to each of them. 

Being a parent of a child who died is a unique category. (Thankfully) There are fewer (but really too many) members of this group. I have found myself confused and not confident in the role of parenting after a child's loss. For the last 3 years, I have been confused as to what subcategory of life we have fallen into. Are we still a medically complex family? Are we a hockey family? Are we a typical family? Do we have the right to have accommodations made like they once were when we had a child who was medically complex and then dying? In what category do our surviving children fall? After all, children are resilient, right?! 

When the world returned to normal after Covid, so did we. As if we didn't experience the death of a family member. Unless you know us from before, or unless one of us mentions it after, you wouldn't know. We blend into life. The kids are in extracurricular activities, we travel, we spend our summers away, Sam and I both work, we smile, we laugh, and for all intents and purposes, we act as if we have the perfect family. Sometimes, but rarely our emotions are on our sleeves. Unless people want to travel the grief journey along with us, they too can pretend that our lives are normal. They can stay far enough away from the unimaginable pain they are thankfully able to avoid and tune into the part of our life that we outwardly display. 

Among fellow bereaved mothers, I mentioned my conflict with what is grief? and what is normal? I shared with others the everyday pain, the lack of energy, the lack of motivation, the anger, the frustration, the short tempers, the feeling of being a failure as a parent, the challenges with deciphering what is teen/child typical behavior and what is related to grief. I mentioned that I was torn on if the behaviors my children are exhibiting are typical or if it is grief. Is the grief a cop-out? Is it fair to place the onus on grief? I listed all of the struggles I have felt but didn't want to be told by someone who is not in a similar situation that "of course, it is grief, of course, you're experiencing all of those emotions, you lost a child"

It was at the same moment that I was speaking my thoughts aloud that I started to process the entirety of the last 8 years. The actual significance of parenting a child who was medically complex and whom we knew we would one day bury as a child, but didn't know exactly when. I had a million flashbacks of a life that went by incredibly fast that simultaneously took 4 years 11 months and 23 days of her siblings' lives as well. I listened as a mother responded to me about how she wishes she could surround herself with my bubbliness every day because maybe it would help her feel motivated. I listened as she said she was processing everything I was saying. I listened with tears in my eyes as she said, "but Randi, a cop-out?! Honey, it is not a cop-out, it is your reality, it is your life"

For the last 2.5 hours since she said that sentence to me I have repeated it in my mind while thinking about all those times, I shrugged off the weight of all we have endured. I have thought about the words while thinking about the fact that 3 years ago our children's ages ranged from barely 2 years old to barely 10, none even old enough to sit in the front seat (and due to height, all were still in car seats or boosters). I think about how not only did we have to deal with Covid, but we also had to deal with the death of a significant family member. We buried a child and sibling who didn't go longer than a month of her life going into a hospital. A child who spent close to half of her life in-patient at a hospital. I have thought about it all on repeat. There is no comparison to anyone who has experienced a loss of any kind. There is no it is worse because of "XYZ", there is none of that. But, also, there is no coping out, and there is no cushioning the reality. The reality is that there is no denying that things are different for us and they are harder in many ways, there is just no way to sugar-coat that. There is no coping out because the struggles we have had to face as a family are not normal, they do warrant some extra attention and some extra accommodations, but most importantly, they mostly warrant giving ourselves a little more grace.      

Resurface

The pain that accompanies this experience is one that I am sure will resurface as the years continue to breeze on by. 

I was driving in the car this morning on the way to a toddler gymnastics class with Sonzee's baby brother.  I have been looking forward to starting this class since the minute he was born.  As the months past by I was so eager to enroll him, and finally about 3 weeks ago I did just that.  I confirmed that our beloved Coach Susan was teaching all the morning classes like she did over the previous years.  Halfway to the gym my eyes filled with tears as I was thinking the first time we set foot in this gym was 8 years ago, then our second child followed suit as soon as he was 18 months, followed again by our 3rd, but then our time with Coach Susan came to an end with Sonzee, and now here I am bringing baby #5.  At that moment I remembered I had written a post about that chapter closing.  While not completely surprised I found myself crying again in the car, it still caught me off guard.

My heart finds itself in a constant battle of celebrating these amazing family milestones and broken over Sonzee never being able to be part of them.  Had she been able to bear weight maybe we could have modified the class?  Had she been able to sit maybe we could have had her do the circle exercises?  Had she been able to use her gait trainer when she was younger and in an efficient manner, maybe she could have run in a circle?  Maybe if she hadn't spent her earlier years in excruciating pain we might have learned she loved gymnastics?  No matter how many therapies or activities we have tried her in, it won't ever make up for the things that she has been unable to participate in. 

Lately, my heart has been in so much pain over where we are today.  A giant disaster of a circle that truly is never-ending but yet always seeming to start back up with pain, discomfort, sadness, and difficulties.  I do not understand how much more her little body can take and I do not understand why it has to be this way.  I can't even imagine what else could pop up, but I am sure I won't have to wonder too long because inevitably it will present its unwanted self.  Not surprisingly, but yet at a level of fascination with myself, I cannot believe how spot on I was so early on in this journey to assume all of these emotions would resurface, because they certainly always do.

Becoming wise

I have always been a type A person, and one of my biggest challenges is relinquishing any type of control.  Add that trait to having a medically complex Sonzee where a slip up in the majority of her care could result in catastrophic results, and well you get a neurotic, anxiety-ridden, overprotective, helicopter mom Randi.  I would say it sounds like it could be a good thing, but rereading the previous sentence, it sounds just as crazy as it is.  The reality is that on one hand, it really is a good thing because when life depends on not making mistakes or following procedures specifically, you need to make sure there is one person in charge, the downside is that then it falls to one person, and the fact is, there doesn't have to be just one person doing it all.

Yes, there is a specific protocol for some of Sonzee's medical care that does require a specific set of directions to be followed.  Does that mean it has to be done in the same exact way by every person? No.  Does that mean if it is done slightly different than it is wrong? No.  Does that mean that I am ok with the slightest alteration of my perceived only way? That would be a BIG FAT No!  The truth is, as long as the main components are followed, in theory, she will survive with someone else performing the care, and raw truth time, the fact that I have made it so I have to be in total control has placed an unnecessary burden on me, and created a situation where I am more apt to make a mistake than someone else.

Coming to this revelation over the last couple of months has been both scary and refreshing.  Caregiver burnout is real, it exists, and it can be dangerous for so many reasons.  There is a reason jobs come with paid time off.  There is a reason for fall, spring, winter, and summer vacations.  Everyone needs and deserves a break.  Everyone needs a chance to rest, recharge, and be given the opportunity to come back to work with a fresh pair of hands and a clear set of eyes.  I can just about promise that the majority of moms of special needs hardly consider the fact that they really really really need a break.  But maybe if we all realize it honestly isn't even just for us, but for the well being of the entire family unit, it might be considered more often. 

Now realizing this truth and doing something about it are totally different things, but awareness is key and knowledge is power.  So like everything else I have learned on this journey, it is the inchstones that count.  So this morning while I write my blog post sitting at my best friends kitchen table in Florida while drinking a venti Starbucks coffee, I trust that I have left Sonzee in the most capable hands, with an immense amount of love, and I did it so that I will come back to her better than I left her, with a refreshed point of view and some solid hours of sleep to carry me through until the next time I am wise enough to know that I too need and deserve a break.

It's been 4 years....

It's been 4 years and yet I was caught off guard on Friday.  I would like to say this is rare for me, but for some reason this past week, I have been experiencing all sorts of whacked out crazy sensitivities and emotions.  Maybe it is the accumulated exhaustion of participating in this journey over the last 4 years?  Maybe it is the fact that I prefer to not deal with a lot of my emotions because I tend to write a blog post about how I am feeling in that moment, press post, and then move on.  More often than not that way of living has seemed to work best.  But then there are those moments, like Friday where three concepts slammed into me at full force despite the fact that I have dealt with them multiple times over the last 4 years.

It became extremely clear to me on Friday that I am not over Sonzee receiving her CDKL5 diagnosis.  So for those of you just starting out, 1 year, 2 years, 3 years, 4 years or even more into hearing the string of characters "CDKL5" it is completely normal if you have yet to accept its fate or if today it is just clicking what it might actually mean.  As I sat with Sonzee's epileptologist and she answered the same exact questions I have asked every PEMU stay since 2015, on Friday, it clicked.  Even if we gain some sort of control of her seizures, which we all agree she most likely won't ever be seizure free nor will she likely ever be 90%, it won't change her background and it won't change the fact that CDKL5 is the reason she is able to do what she can and not able to be typical.

This led me into the 2nd revelation; the one where it becomes clear that even though I don't speak the words and I don't put much faith into it, somewhere in my soul I still believe there is hope for her, because it is during moments where I feel the wall slam into me at 500 miles per hour that I realize the slamming feeling is because I was obviously holding onto some sort of hope.  The hope that maybe one of these PEMU stays it will reveal she does not have an abnormal EEG background.   The hope that one of these PEMU stays will reveal she isn't seizing unless we notice and hit the red seizure button.  The hope that one of these days she will wake up and be typical.

Which led me to the final revelation that we are never going to fix her.  We appreciate who she is, we love her the way she is, but honestly, if you told me a specific amount of money would make her be able to become a typical child, I would pay it plus a tip.  I do not know why all these 3 items became clear on Friday.  I have heard the answers before, I am sure of it, and I do not know why, but for some reason, it all clicked and since then it has been weighing me down like a ton of bricks.  I am having an extremely difficult time comprehending that nothing we do for her will ever make her better.  No medication is going to stop her seizures, no medication is going to clear up her background, and no medication is going to fix her...but for some reason knowing this we still cycle through medicine cabinet trying to find the answer....and it's been 4 years.

Revelation

"You can't change the outcome, but you will never get the time back"-Raquel Schnitzer

There have been a lot of different things going on lately, none of which I have any control over, and  naturally that sends my brain into a tailspin.  The fear of the unknown tends to paralyze me in a way that makes me over analyze and panic about every little thing.  No matter what I do it is nearly impossible for me to stay focused in the moment and actually be present because I am dreading what might be.  I dislike the feeling immensely, but also have found it an insurmountable task to focus on anything but, until yesterday.

Yesterday was mother's day.  A day that I have been honoring for myself since 2010 when our first daughter was born.  So much has happened to make me the mom that I currently am over these past 8 years.  Yesterday standing outside a Starbucks after painting pottery Sam took this picture.

I studied this picture over and over, and the quote above struck me like a lightning bolt.  Whatever "big picture" outcome is going to unfold in the lives of my children or myself I will never have a say.  As hard a pill that is to swallow, I cannot do anything about it.  I can assist with the twists and turns, but if I spend all my time and energy worrying about where the roads will lead I am going to miss the entire point and joy of this life.  Eventually the answers to all the questions will be given.  They may or may not be the ones I want, but in the end, what will matter is what we all did together and the fun times we had in the process.  

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Go with your gut

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

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

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

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

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Clarity

Since Sonzee's CDKL5 diagnosis I have always done my best to make sure that she is looked at as "Sonzee", as an individual, as a person first before the 5-character string that sits "quietly" next to her name on every document that I fill out for her.  To be honest when a doctor uses CDKL5 as their reasoning behind whatever symptom or situation we find ourselves in, it infuriates me to no end.  I have at times considered it to be an excuse, a way for them to place a "blame" on something because they probably do not have a reason themselves as to why she is enduring so much difficulty.  

While I have always felt that her medical team has always held her best interest at heart, there have been so many instances that I felt frustrated with them, thinking that they "just didn't get it".  After all, my rationale was that despite caring for her medically, how could they possibly feel the same way about her as myself and Sam.  After all, they have so many patients, they have so many other priorities, they do not have the time to figure her out.  The situations we find ourselves in with her have taken me on one huge never-ending roller coaster of emotions and it seems around this time of year I tend to have an epiphany and continue to travel on this lengthy journey of grief.

There is usually a situation that occurs that brings the epiphany to light and this year it was our trip to the Children's Hospital of Philadelphia.  We went specifically for Gastrointestinal (GI) motility testing.  Of course, the doctors were aware of her seizures and her overall diagnosis of CDKL5, but I "strategically" did not request a neurological consult while there because I wanted us to just discuss her motility.  I did not want the "blame" to be on CDKL5, I wanted to be told something else was responsible for her situation.  I wanted to know that there was a chance that she could maybe, someday, be a bit more "typical" and tolerate food into her stomach.  Dare I say it, I wanted some "hope".

When we left Philadelphia, that is exactly what we left with, hope for the future, hope for her feeding, and hope for her to be gastrointestinally typical.  I held in my hand an extensive list of potential trials and suggestions and with uncertainty, but "hope", Sam and I walked into her Dr's office this past Friday.  We sat and discussed all of the options, we came up with "the perfect game plan", we spent a ridiculous long time asking questions and listening to what our doctor's thoughts on everything were.  These test results gave us information we never had before, a "reason" behind her issues, and simultaneously the infamous "aha moment" filled my mind as I listened to Sam's final question and heard the answer.  

"Just so we can sleep at night. (Well to be honest I have been sleeping fine), but so we can sleep at night, what these test results show is that her dysmotility was not the result of anything we did?  It was not due to us giving her steroids? It was not due to us having the g-tube placed? There was nothing we could have done to prevent this from happening?"

"No, no, nothing you could have done, this was happening regardless, even before you realized it.  This is just the result of her and the effects of CDKL5".  At that moment I realized how much Sonzee's doctor has been on our side this entire time.  It is so easy to be blind when you are living in the trenches, there is limited visibility when you live in this life.  You pick a team that will hopefully eventually help you to see through the forest.  Just as our doctor left to write out the recommendations and send us on our way I looked at Sam and asked him the question we used to never agree on.  

He went into the hallway and saw Sonzee's doctor standing by her desk and began asking her more questions, the questions that yielded the answers we needed to hear, but did not know to ask.  The answers that proved to us that our doctor was always looking out for Sonzee, but she was also supporting us on this journey.  On our quest to separate Sonzee from CDKL5 we are the ones who forgot to consider the "bigger picture".  No, CDKL5 does not define her.  Yes, despite CDKL5 she can make valuable gains.  But despite only being a 5-character string, the complications set forth from a genetic mutation such as CDKL5 create limitations that will always be present and unavoidable.  No matter what our hearts might yearn for, the specific and individual mutation makes our little bear who she is, and it is the reason she is rare, she is special, and she is HER.

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No longer a baby...

We got up and went to the airport yesterday like we have done many times with Sonzee in tow.  We even managed to get there early (yes, even we are capable of doing that on occasion- we just try not to make a habit of it).  We got through security in our usual amount of time with the typical pat-down and analysis of all the supplies we bring for her.  TSA at Phoenix Sky Harbor is always amazing to deal with and we never have any problems, things just take time.  The truth is, no matter how prepared we are, how accommodating everyone is, or how smoothly the process goes, traeveling with a medically complex child is still extremely hard.

Yesterday was the first time we flew with Sonzee in her convertible carseat, in the past she has been in the infant carseat, so of course, there will be a new learning curve.  We were the third in line for preboarding (Sam and the kids came with us) and we were the reason the plane was four minutes late departing.  I will let that sink in with you for a bit.  It took us the entire time of the boarding process to get her carseat installed correctly and we ended up having to forward face her because the distance between the seats would not allow for the proper recline with her seat facing rear.  Yes, Sonzee's one famous skill is her head/neck control, but it is nowhere near what a typical two year old's ability is or should be.  No matter the various supports I tried, her poor neck was flopping forward.  This was not ideal.

When we finally got her situated, the plane pulled back from the gate.  During the chaos of boarding, the pilot (who actually helped carry our bags onto the plane) placed Sonzee's medical bag in the overhead bin while we organized to make things easier and I never had a chance to grab her VNS magnets in all the chaos.  Naturally, it made sense that during our exact pull back from the gate she would have a seizure and her magnets would be out of my reach.  Again, thankful for being with amazing care, we pressed the call button and the flight attendant more than happily grabbed her magnets and checked up on us multiple times within the 6 minutes it took for us to get to the runway to ask if we were okay to take off.

Thank G-d for the amazing staff at Southwest who never once said anything negative, did anything to insinuate we had to rush and were overwhelmingly supportive during our entire experience.  Like I mentioned previously, this all helps, but the fact is this traveling gig is not what pleasant dreams are made of.  We have medical bags complete with essentially a portable hospital; a pulse oximeter, portable oxygen concentrator, feeding pump and supplies, medications and supplemental supplies that go along with her VNS, not to mention the various other supplies that come with having a toddler who is essentially still a baby.

I guess I had not really considered that traveling on a plane as she got older would be significantly more challenging.  Even with her being in the 2% for weight and height I didn't even bother changing her in the small little fold out table in the bathroom because she is too long.  I think the reality is setting in that we are no longer traveling with a baby, we are traveling with a child who has special needs.


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Battles

It is Monday afternoon and I am exhausted.  It was yet again another sleepless night with little bear and her constant screams of pain.  It is beyond frustrating that whatever remedy we find for her works only temporarily.  Her GI doctor has called in another antibiotic that helps with balancing out the bacteria in her gut and her palliative care doctor has told us to go ahead and increase her Gabapentin for the pain.  The GI and neurological systems are so tightly woven that in Sonzee's case the slightest bit of GI movement sends her nerve endings into a tizzy.  I was so naive to think that if we could only control her seizures that her life would be smoother sailing.

Her life is a series of battles.  Every time I think we have tackled one successfully, another one begins.  There is no time to celebrate and there is nothing it seems that we can do to prevent them from happening.  All of these battles keep continuing back to back and we are running out of supplies, I am running out of energy, and my sanity is on the verge of nonexistence having to listen to screaming and crying for hours on end each day.  It is taxing to keep living like this.  I honestly do not know how little bear does it, how do any of these children do it?

I remember when seizures were our biggest fear and threat.  When I thought nothing could possibly be worse than watching her have multiple ones a day.  I was wrong.  What is worse than watching her have constant seizures is having her be miserable screaming in pain for the majority of the day and night.  It is far worse having her cry and me not being able to do anything for her but just listen.  I cannot fix this.  I won't ever be able to fix this.  All of these battles, and there is no chance of ever winning the war.


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Impartial

This week in our CDKL5 support group we welcomed so many new families who have babies.  I now consider anyone younger than Sonzee a baby and I am struggling with the realization that in just three short months she will be two.  This is a challenging concept to wrap my head around for so many reasons; I am having trouble picking the ones to focus on for this post.  With the challenges her 21 months of life have thrown at her, I am really proud and content with the place she is currently, however, I cannot ignore the elephant in the room that says, "None of the past 21 months has been normal, and none of it is fair".  I really think that the best lesson of my life I learned in 5th grade with Miss Bailey when she introduced our class to the word "impartial" with the sentence, "Life is not impartial".  Nothing like a great review of 21 months to say, "Miss Bailey, you were absolutely correct".

Sonzee is alive, she is absorbing food, she is healthy..., but we should not have to think about these things.  I should be chasing a toddler around my house; picking her up from the ground as she falls as she runs after her siblings trying to join in their shenanigans.  I should be enrolling her into dance class with Miss Jenny and Miss Emily.  She should be running around the gym with Coach Susan.  The appointments I make should not be with neurology, gastroenterology, pulmonology, ophthalmology, and/or interventional radiology.  I should not be parking in a handicap parking space and unfolding a stroller with a blue placard that explains it is being used as a wheelchair. 

My favorite part of having three girls is opening up the drawer of clothing and reminiscing over what her sisters did while wearing each outfit, knowing how every fade, stain, and spot was caused.  I love when her sister says "that laeya's?  That not mine.  That Sonzee’s?"  Words I most likely will not ever hear come from Sonzee's mouth.  The clothing will be passed down to her baby cousin, and it will bring me so much joy and happiness to watch her do the things in them that Sonzee has not, but it will also sting.  This is not how it is supposed to be.  My heart hurts.

When I look at Sonzee while she is in the pool with children her age it is completely mind boggling that they are the same age.  When children her age walk up to the stroller it stings when they say "baby", not because they are calling her a "baby", but because they are absolutely correct, she looks and acts like a baby.  It is the truth that hurts.  It is our current situation that is painful.  I do not understand why this had to happen to her.  I honestly do not try to make heads or tails of it, but I wish I knew why she has to suffer.

As each day goes by I am so thankful that she is still here with us, but it also gets scarier for me to think "how much time does she have left".  While I am being honest, there are days when her suffering is just so horrific that I wonder, "Which outcome is better for her?"  There have been days during the past 21 months that I have wondered which box to check off when they ask about 911 or comfort measures.  These are not the type of parenting questions I should be answering about my 21-month-old child.  This is not fair.  

There have been many positives that have occurred over the past 21 months, but none of them came without having to battle.  Nothing since her birth has been easy, and nothing about her future will be either.  Each day since her birth I have lived on a tight rope trying to balance.  The atmosphere in our lives each day over the past 21 months has been dictated by how she feels.  We live in a constant state of limbo while walking on eggshells hoping and praying that no matter what, a rebound will occur.  As I previously stated, today things are going well because things are going well for Sonzee, but it does not change the aching pit in my stomach of how different this life is from the one I envisioned.  I wish our family had never known of CDKL5, but as I learned in grade school about 22 years ago...life is not impartial.


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Lessons of a 28 day hospital stay

**Part of the November writing challenge for themighty.com which has been published here

Our daughter was diagnosed with a rare genetic disorder, CDKL5, when she was only 8 weeks old.  This was preceded by a weeklong NICU stay immediately after birth and seizures that were diagnosed when she was 4 weeks old.  We as a family have endured multiple tough moments during her 20 months of life so far, however, nothing was more eye opening than the lessons I learned after her 28 days in the hospital when she was 15 months old. 

She was solely breastfed from birth until we transitioned her to a bottle in order to receive a special diet for her seizures (ketogenic); whatever she was unable to eat by mouth we fed into her stomach directly via her g-tube.  No matter how much we tried to feed her, she was unable to keep anything down.  Finally I hit my breaking point and brought her to the ER.  When our daughter was admitted to the hospital, she was already marked as Failure to Thrive due to not gaining weight or growing at all from the time she was 6 months old.  It was a scary time not knowing if we would find and fix the problem.  The doctors could not tell us when they anticipated her to be discharged.  As the hours turned into days, and the days into the weeks, there was a cloud of darkness that haunted my brain, and I began to wonder, “Is she going to come home?  
There is nothing scarier, nothing more real, and nothing more humbling than being faced with the reality that the baby you checked into the hospital with might not be coming home with you.  There are times on this journey where I am reminded that I have no control in my daughter’s fate; I am simply here to help her complete her purpose.  This is a challenging concept to accept as a parent, however, I consider myself lucky to have found myself in this situation. 

I watched my daughter receive potassium, phosphorous, albumen, and blood transfusions.  Her stomach was deemed un-useable and her intestines could not handle her nutrition goals.  She was placed on total parenteral nutrition (TPN) via a central line that emptied near her heart.  Her body swelled from water retention and she received diuretics multiple times.  Knowing how close my daughter was to not being physically here with us has made me learn to truly appreciate every moment we have with her.  I have learned to understand what it means to not sweat the small stuff”.  I learned I do not have time for petty inconsequential things because they honestly do not matter.  I continue to have an inner battle in my mind over wanting her to be typical and meet milestones, but to be honest; I am just appreciative when she wakes up each morning.  While I will always be haunted by the experience and limbo of her 28 days in the hospital, I know that without them, I would not be able to put life in perspective. 

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