Happy 5th Birthday Corrinne

Dear Corrinne, 

Today is such a special day, it is your 5th birthday.  So many of Sonzee's friends have turned 5 since she has passed, but for some reason, today, your birthday is the one hitting me the hardest.  Maybe it is because you were the only friend we had come share in her mock 5th birthday party?  Maybe it is because of the parallels in yours and Sonzee's journey?  Maybe it is because I haven't let myself fully grieve over Sonzee never officially turning 5 and I was so afraid for your family that they would end up like us and today would be happening in a completely different manner?  Maybe it is because I personally feel so invested in you turning 5 that I am a mixture of relieved, ecstatic, and beyond grateful that you have made it to this milestone?  Maybe it is because I know that you being at Bear Pines somehow means Sonzee is celebrating with you and it feels like life is coming full circle?

You are such a special girl to so many.  We have been so blessed to have you and your family in our lives for 4ish years.  Your mother is one of the few people in this world that I can and have shared my darkest fears and feelings with and who has been there to help me feel almost normal the last 7.5 months.  She is for sure your fiercest advocate and a primary reason you are able to celebrate in all of your glory the amazingness that is today.  Sonzee was so blessed to have met you in FBC's Friday group, it was because of your story that we finally took a tour at Ryan House.  You and Sonzee shared a knack of making your (same) GI doctor experience firsts with your insane dysmotility...but you, my friend, continue to just travel along with a divalicious smile, painted nails, beautiful sassiness, and a requirement to travel with a mini fridge.

I am just so thankful that you honored us by accepting the invitation to Bear Pines for your special day. I hope it is your best birthday ever, I don't doubt for a second that you will be and have been spoiled beyond comprehension, and rightly so.  I hope you know how much your life has mattered to ours.  On your 5th birthday, we wish you a year of few hospitalizations, no new diagnoses, calmness, health, happiness, and amazing memories to be made with your friends and family.

   

Love, 

Sonzee's Family

Change

Three days are remaining in May.  I really dislike this month in general because it has always been the month of her 28-day hospital stay.  The number of consecutive days never did get trumped, but there were a few close seconds.  The month of May did have its perks, like the fact that for some reason the last week of the month would start her on some sort of seizure vacation until around the beginning of July.  Sometimes she would go close to the entire month span without a large seizure and only have her millisecond drops or spasms, sometimes it would be days.  Whatever it was, we never had a reason, it is just what happened year after year from 2015-2019, every single end of May.  I hope wherever she is that she has been enjoying seizure freedom for the last 16 weeks 2 days and 21 hours, if not I will have a lot to take up with the upper management.

On Monday it becomes June, another new month to start without her here.  It also happens to fall on what will be another new week without her here.  In 6 days it will be a complete 4 months without her here.  I cannot comprehend how summer is already here.  I really feel like I closed my eyes and it all happened in a blink, but yet it feels like the longest close to 4 months ever that I wish I could have actually slept through. 

Every day since February 3 has brought something new.  Supposedly the first year is the worst because of all the "firsts" you get to experience in a new way, but forget any of the special days, every day for the rest of my life is going to be something new I have to figure out without her here.  I dislike all that comes with that little fact.  Even in the crazy world of CDKL5 and Sonzee, we had a norm, we had a routine, and we had inconsistent consistency.  There was comfort and familiarity in the inconsistent consistency and we even relied on it, or at least I did.  I still feel so lost without her and the chaos as my guide, and I really really dislike all of this change.

To the newly diagnosed parent of a child with a rare disorder

To the newly diagnosed parent of a child with a rare disorder,

I have debated on what to say to you or your family member as you join our support page because the reality is that you are currently seeking something to keep you continue breathing as you are embarking on this journey.  You are wanting a lifeline, you are wanting something tangible, something to actually grab a hold of, you are simply wanting some hope.  That is fair, we all do when we start on this journey.  We search into the depths of every orifice as the journey begins to unfold and we struggle to regain our grounding as life slowly begins to move forward.  I have to warn you about the hope you seek because that word itself will take on various meanings and forms throughout this journey, and I feel it is only fair to warn you, that sometimes, hope ends up being a crapshoot.

Despite what you are considering the potential worst-case to be, the reality is, as you begin this journey you are unable to truly grasp what that even is.  The worst-case will morph along this journey.  You will find yourself thinking at various points that this is it, this is the worst-case, but I can assure you, it can always get worse, and at times, it actually will.  What I can also tell you is that there will always be some sort of lift to help you out of the worst-case cavern you will find yourself in.  Sometimes you will be stuck there for far longer than you anticipated, sometimes you won't even realize you were there until it is over, and at some point, when the real worst-case hits, you will find that you simply have to learn to just sit inside it for some time.  It is just a part of life, and as much as we want to pretend these types of situations don't exist, the reality is, they do.

Despite the potential worst-cases, I implore you to not don't spend your time fixating on what they might end up being.  There are so many amazing cases that you didn't know could even exist that you will also encounter.  What your family has just embarked on is a journey with an ever changing situation and ever-changing emotions, and it is a roller coaster to say the least.  As you all learn to tackle the ups the downs all you can really do is ride the waves with an open mind and open heart, and understand that your life has forever been changed, but you will find a way to survive, even if at times it is simply by taking a deep breath.

From, 
The bereaved mom of a child who was newly diagnosed 5 years ago.

Final episode.

A few weeks ago I started to binge-watch Schitt's Creek.  It was a little slow going, but someone said to stick with it, so that is what I have done.  I have always been selective of the shows I get attached to after my teenage obsession with Dawson's Creek.  The ending of that show while absolutely perfect, left me depressed for ages because that meant the ritual of sitting on the couch, phone in hand waiting to discuss each episode with my friends after each episode had ended.  It has been selective binging ever since.  Since Netflix only has to season 5, that required Sam to get me the final season elsewhere, which he did, last night, and shortly after today I realized there were only three episodes left and the tears filled my eyes.

Let's be honest, it wasn't about the show on the verge of ending that had my emotions on overdrive.  It honestly has practically nothing to do with the show itself.  Sure it has been some great comical relief at night after the kids are in bed as well as it provided hours of occupied but non-think provoking time, but that isn't the reason either.  While I can give some credit to finishing off the night of an as good as could be expected first mother's day without Sonzee, the real credit goes to the fact that the reality is everything eventually comes to an end.  No matter how much you attempt to prepare, no matter how much you know the end is coming, there is nothing you can do to change its course.

Only three episodes are remaining, that means only an hour, maybe more if I have to press pause; but the end is near and in sight.  The tears came out of nowhere.  It sounds so trivial, and maybe even ridiculous to compare the ending of a 6 season show to the final 11 days Sonzee spent in hospice (it feels even more absurd that I can't stop crying over the comparison).  It just flipped a switch within me.  There is no other option but to watch these last three episodes.  I can push off when I watch them to tomorrow night, and maybe even watch only one a night for the next three days, but eventually the show will be over.  There is no way to change the fact that it is coming to an end.  I am sure I will over-analyze the final script and character directions for days to come.  After all, I am not the one who wrote the ending, I will just be the one who has to watch it all play out however the writer sees fit.

That is one reality of the harshness of grieving the loss of your medically complex child.  No matter that we knew her final episode was going to occur during our lifetime, no matter that we had some notification that the ending was becoming closer.  No matter how many warnings you are given, there is still no possible way to actually prepare for when it's the end.  There were only so many nights we could push off her series finally and then eventually we had to press play and watch her final credits roll.

Journey

Before I go into my room for the night I occasionally do a quick scroll through my Facebook newsfeed one last time.  I have found since Sonzee has passed I have a sort of love and hate relationship with it in general.  I love to be connected, I love to see what's new with my friends and their families, but even though I have muted a significant amount, there is still a lot that brings the lumps into my throat and tears into my eyes.  This week there happens to be the added weight of the anticipation of Mother's Day, and all the posts of crafts and projects already being made.  I know my kids are hard at work on theirs for me (they make me close my eyes when they go to show Sam), but this will be the first of many mother's days that will be spent without one of the reasons I will be celebrated. 

Every year for mother's day on the actual day we do a craft that involves all the kids.  They will typically do a small individual craft or card in advance, but my favorite thing that we started with my oldest is the group project that is completed on Mother's Day together.  We have done frames, shadowboxes, canvases, and a lot of pottery.  In the last few weeks, I have been trying to anticipate how I might feel on Sunday, but the reality is that I just won't know until it comes.  I initially felt like it wouldn't bother me, after all, I miss her every day as it is and we always go to see her on Sundays, so it will just be a typical Sunday for the Zaila's.  Then I started to wonder how we would incorporate her if we did an arts and crafts project when she isn't here to do her part.  She can't pick her paint colors or have her hand held to assist.  I have been wreaking my brain wondering how we alter the day to make some sort of accommodation that still honors the day with her siblings but has her included?

I have thought of so many ideas but nothing seems to make sense, and as the day creeps closer I am panicking for its arrival.  It doesn't seem to matter that I have other children to celebrate the day with, a significant part of my motherhood is due to such a crucial piece that is absent and won't be here. There is really no way to ignore the reality that my heart won't ever be whole again and there is now an actual day that ironically will most definitely make it feel even worse than usual.  There is no way to ignore or sugarcoat the fact that Sunday is going to be horribly, tragically, and painfully difficult, but yet amazingly beautiful all mixed together.  A day that will wrap up my dreams come true and inescapable nightmare and be delivered to me in a pretty bow for 24 hours to celebrate the reality of what has become mine and so sadly so many other's journeys of motherhood. 

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.

Humbled

She had two of her long seizures and too many of her cluster seizures to count.  She spent her day awake, wringing her hands, clapping, pushing her glasses off of her face, and content.  She didn't cry in pain at all and she not only stood in her gait trainer, something she has not been afforded the opportunity since the fall, she also took multiple steps.  She was proud of herself, you could see a smirk across her mouth, a look of satisfaction in her eyes, and just sheer joy come over her entire face. Her ability to literally make the best and most of her days, albeit her brain misfiring for over 25 minutes a day has me sipping my coffee in complete admiration as I'm reflecting on what she endures daily.

As her mom, I over analyze every minute of her life in general, but it wasn't until I was staring at her seizing awake from her sleep at 10:45pm that I truly comprehended how incredible of a human being she really is.  I readjusted her pulse oximeter while she seized, her values thankfully staying stable, and I was filled with this feeling of heartbrokenness mixed with complete awe.  Just hours before, we were challenging her fragile, and I am sure exhausted body, to do things the majority of us haven't had to think about doing since we were between 12-24 months old.  She rose to that challenge, she smashed the ball out of the park and gave me renewed faith in her desires.  Then she participated in a girls only dance party after dinner and didn't complain when we didn't move her into her room until after her typical bedtime.  Now here she was convulsively shaking, her limbs contorting, her mouth quivering, her eyes rolling all over, her head thrusting forward and then abruptly pulling back, and this is what she does all the time.  This is her life.

During these moments when I am reminded that her life is not about me or my feelings, or how hard watching her go through it all is, or what her missed milestones mean for me; I feel this overwhelming sense of pride and adoration towards her my heart could physically burst.  I always suspected she would bring me similar joy and delight as her siblings, but I was not sure what it would look like.  I now know that there is nothing that could make me a prouder parent than watching her literally fight to give herself a self-determined quality of life on a daily basis.  For this, I will forever be humbled.