September

I wonder what it is about September and my inability to get my thoughts out of my mind.  I am thinking it is because this month historically tends to bring about undesirable thoughts or just doesn't do much to bring closure to any situations we are currently facing.  I have spent the majority of the previous two weeks not even wanting to sit down and write.  A few times I did consider it, but then decided I wasn't ready to make my thoughts completely public.  One additional time I began to write and two paragraphs in I was met with a barricade and haven't gone back to see if I am able to finish.  Tonight I am watching the time tick by, my eyes are blurry, but for some reason, this piece of paper keeps calling me back to it.

There is a constant lump stuck in my throat and tears that are literally a blink away.  4.5 years ago I couldn't have imagined a more delicate, emotional, and challenging journey to unfold for us.  4.5 years ago she was doing so well comparatively, and we were going to have the child who "broke the mold", who was the outlier, who didn't check off every damn box in the potential for CDKL5 directory.  4.5 years ago I told myself that she probably wouldn't sit, and if she did it would be around 3 as a method of self-preservation, but deep down I rooted for her, and could envision the excitement and party that was definitely going to unfold when she DID meet that milestone.  4.5 years ago we were blissfully unaware of the struggles that were occurring within her body metabolically and gastrointestinally speaking.  4.5 years ago we took it all day by day but woke up each day celebrating whatever Sonzee-stone she met.

Today on the couch in our living room we had another weighted conversation.  This wouldn't be the first of its kind this month, and it certainly won't be the last.  They are conversations that I never anticipated could occur in a casual manner, as we were drinking some cold brew, and while two of our kiddos were running through the house.  Conversations that prompted us to keep sending the one child who was old enough to understand on various expeditions to keep him out of earshot because it probably wasn't the most appropriate conversation for a child to be overhearing.  But as everything else CDKL5 related, we find ourselves dealing with a new normal, of completely abnormal and just going along with it, because that is all there really is for us to do. 

Choices.

A week ago everyone was home from school, the day was perfect to be outdoors, and without even second-guessing anything, we took Sonzee's port needle out and she was able to spend her day in her favorite place, the pool.  Despite losing time on her TPN/Lipids, it was an obvious choice. On Tuesday my phone rang and it was her endocrinologist's nurse.  I can't say I was not expecting this phone call, but I would be lying if I didn't admit that it should have occurred weeks ago and I was just waiting for it to happen.  The insurance kinks of her bone infusion have been worked out (I knew this weeks ago, but didn't rush to tell the office) because we have yet to decide is if it is in Sonzee's best interest for her to undergo the infusion.  On Wednesday Sonzee ended up with a fever and the protocol with the central line is anything over 100.4 becomes an automatic ER trip, yet we didn't exactly rush to take her in, the odds were in her favor that it was "just a virus", and lately the consideration of hospice has been on our minds.

Choices.  This journey presents us with the illusion of choices.  A choice is deciding on what is for lunch or dinner, or what drink you want from Starbucks.  By the way, all of those, thanks to the type of choices we have been presented for the past 4.5 years evoke major anxiety and panic attacks.  How is it even considered a choice to decide if Sonzee should go in the pool and have fun or be given nutrition?  Why do we have to decide to attempt to strengthen her bones to maybe prevent fractures and improve her bone health or keep her from experiencing 6 weeks or more of pain that historically wreaked so much havoc on her body she will cry to be picked up and won't be able to tolerate feeds for weeks?  Why are we even having to consider if we should be switching our 4.5-year-old daughter from palliative care to hospice care? 

None of this makes sense. Processing that this is part of our journey knocks the air out of my lungs. These choices might not have a "right" or "wrong" answer, but the results of each choice impact her life and our family's life.  There is no way around sugar coating the immense amount of weight that we are bearing.  I wish the biggest choices we were faced with were, which after school activities she wanted to be participating in, what lunch she wanted us to pack, and does she want to sleep with a nightlight on in her room?  But, that isn't our reality, and that isn't how life with a CDKL5 mutation works, so I will wipe away my tears, pull on the big girl panties, and try to do this right.

"Giving up"

This meme keeps popping up in my newsfeed.  The first time I read it quickly and passed by it, it was not the right time.  Then, of course, like a wildfire, it began to get copied and pasted by so many parents of CDKL5 kiddos and parents of children with medical complexities, so it popped up more and more.  Each time it emerged I couldn't stop myself from reading it, so each time my eyes would become watery and I would again move off the image.  I knew I wanted to save the image for when I was ready to address the words I kept reading, so eventually, I right-clicked it and pressed "save image", and now approximately a week after the first time I saw it, here I am.

"You're really advocating for someone's quality of life.  That's the moment you realize that you won't give up"

These two sentences take the air out of my lungs.  Maybe they hit home because of what is going on currently, maybe it would have knocked the wind out of me regardless of where we were on this journey had it appeared at another time in my newsfeed?  But all I think after I read the last sentence is, "what is giving up? what does giving up look like, how are those words even part of this picture?"  Advocating for someone's quality life is no small feat.  It looks vastly different for every single person who has to do it.  Advocating on someone's behalf is scary and unknown and when it comes to "quality of life" I feel like the answers are blurry, but the giving up part does not present itself as a single moment when it becomes "more than accommodations".  If you are advocating on behalf of a person there shouldn't be an epiphany where you suddenly realize "that you won't give up", because advocating in and of itself means you are going to represent what is best for that person until you are red in the face and no one has any doubts that you aren't backing down until this person's needs are met.  

Yet, the weight that is placed on those of us who are responsible for advocating for a person's quality of life is unexplainable.  It often brings with itself the inner feeling of wondering if a choice will be considered to be "giving up".  When it comes to "quality of life" in a medically complex child, who is to say what "giving up" looks like?  If the choice you choose on behalf of "quality of life" results in a potentially shorter life is that giving up?  Is it "giving up" if you no longer choose to keep seeking treatments?  If the main goal is "quality of life", then I feel like the words "giving up" should never even enter into our minds, because it has to be known that there is no such thing as "giving up".

When life gives you lemons

When Sonzee was only 10.5 months I wrote a blog post about lemons.  As I read it now I know it was one of those posts that I wrote to try to boost my morale and attempt to be positive.  So much has happened since that blog post, yet there is still the same passionate desire for "her life [to] be easier, less painful, less scary, and less dependent."  I cannot say that these past 3.5 years have brought any of those things, but it certainly was not for the lack of trying.  I know we have made every decision for her based on our desire for her to achieve her best quality of life possible.  I will always wonder if she feels we have been successful or if she wishes we made different choices.  

Last night one of her sisters was at a class at the mall and while I waited I was able to walk around a little.  I have been meaning to get the initial bracelet for her baby brother because my best friend started the tradition when our oldest was born when she sent me the "L".  So when I saw the Alex and Ani store, I walked inside.  After picking up the letter "N", I was taking a look around.  These last few weeks we have been bearing an extremely heavy weight on our shoulders and I wanted to see if anything spoke to me, so when I saw the lemon, my only decision was necklace or bracelet.

I wish I knew what you're supposed to do "when life gives you lemons" because Sam and I don't always agree.  We have tried shelving them, squeezing them, making lemonade, freezing them, throwing them, making margaritas and every other possible alcoholic beverage with them.  Nothing seems to be fulfilling, nothing seems to make me feel like we have done anything correctly, nothing seems to make sense, and nothing seems to have made a damn bit of difference for everything we have done for Sonzee.  The only thing I can say is that we have been doing our absolute best and no matter where this journey goes, there won't ever be regrets.  

So every day I put this necklace around my neck I will remind myself that when life gave us lemons we did everything we could with the information that was given to us, with the support of those who have shared in the ups and downs of this roller coaster ride of a journey, and that really was the best we could do, no matter how short-changed or inadequate it might have felt.

Riverbend

We had the Alexa playing Disney radio this afternoon after Sonzee got home from school.  I feel like more often than not it plays the same exact songs on repeat; songs from Beauty & the Beast, Frozen, Moana, Tarzan, Little Mermaid, and The Lion King are the most often played.  For some reason today I noticed not only once, but at least twice "Riverbend" from Pocahontas came on, I wonder if it has played before and I just didn't hear it, or if today it was just one of those songs that came on because it was so relatable.

I feel like life has given us a swift kick in the behind these days.  These last two weeks especially have been weighing ridiculously heavily on me.  It seems it is just one thing after the other and I have no idea why it feels like everything is crashing down around us.  We have been in the trenches before, but for some reason, this time just feels different. As usual, I have no idea what lies ahead, but this time my heart hurts for different reasons and my gut is yelling at me at the top of its lungs.  It is deafening and suffocating any other thoughts all at the same time. 

It's tough, although I feel like that word doesn't really bring justice to what this whole journey has been and continues to be. But tough is just what it is, and for now "I look once more just around the river bend.  Beyond the shore where the gulls fly free.  Don't know what for what I dream the day might send. Just around the river bend for me"