The stars

One of my mom friends, Bridget, who also has a child on a medically complex journey posted a song on Facebook with the words, "Might seem strange, but sometimes a romantic song can actually change its meaning when you have a child", she went on to say "If you're a mommy of a non-verbal child; this one's for you."  For the past couple of weeks, our house has been slightly obsessed with listening to "The Greatest Showman" songs on Spotify, on the house Alexa, on YouTube, literally, anywhere we can get the songs playing.  I love all the songs on the soundtrack, however, "Rewrite the Stars" is the one that if you pull up next to me driving, you can bet money I will be belting out the words as loud and off-key as possible with tears in my eyes or rolling down my face.  

It seems to be the perfect duet with Sonzee these days.  Almost every single phrase I can relate to her life and our situation.  From the heartbreaking reality that "Fate is pulling you miles away And out of reach from me", But you're here in my heart".  To the literal facts that I am sure she feels, "You think it's easy You think I don't want to run to you But there are mountains And there are doors that we can't walk through".  Which leads me to the basic question, "How do we rewrite the stars?"  

Oh gosh, if only we could, if only it actually was possible.  No matter how many times I listen to the song the words crawl inside my heart and just sit there.  These last few weeks have been ridiculously brutal on Sonzee, on Sam and me, on our marriage and general family life.  The situation we are placed in is not normal and shouldn't even be considered normal in our special needs, medically complex, "atypical" world.  Decisions have been made, choices have been made, but there is no winner.  There is no winning in this lottery.

"No one can rewrite the stars", but "Say that the world can be ours".  "Say that it is possible, because "It feels impossible...We're bound to break and my hands are tied".

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"

Undesirable Mess

My thoughts today have been all over the place, in fact, every other thought I have is contradicting itself, which isn't exactly helping me sort anything out.  I cannot pinpoint if there is one specific thing that is causing the chaos, but I am feeling a bit like a cranky overtired toddler who is trying to prove that it is not bedtime while falling asleep in a highchair crying.

I am trying to find positives in all the negative situations that Sonzee is dealing with and besides the fact that the task itself is exhausting, there is a part of me that does not want to find any positives.  I just want to wallow.  But I can't.  Or I should say, I shouldn't.  That isn't what I am supposed to do.  Those of us in this life are supposed to look at the good, and to feel/recognize/acknowledge that our children are gifts.  We are supposed to see the silver lining, or the bright side, and not get caught up in the dark hole tornado pulling us down.  We aren't supposed to focus on the negatives because it isn't healthy, because G-d is good.

But nothing about this life is actually healthy, and personally speaking, I don't know if it matters whether G-d is good.

There is nothing healthy about watching your child seize multiple times a day for a minimum of 15 minutes each time.  There is nothing healthy about having your child be fed into her intestines or via a central line going into her bloodstream because her stomach shut down years ago.  There is nothing healthy about giving your child non-FDA approved for her age grown man medication dosages that are equivalent to water in terms of how her body reacts to them.  There is nothing healthy about making life-altering choices and then wondering if those choices were, in fact, the "best" choice and or what would have happened if the other choice was made.

Like I said.  Nothing about this life is actually healthy.

So while I want to give myself a pep talk and throw some inspirational words on the screen and press "post", that isn't what is going to occur.  Today I am just going to honor the undesirable mess that was thrown at us 4 years ago after the spontaneous de novo CDKL5 mutation happened to occur at some point while Sonzee was in utero by letting myself grieve all that has been lost and will inevitably be lost as we continue on this journey.

Searching

After April 16, 2015, I never anticipated that we would ever have a question again as to the "cause" of Sonzee's symptoms.  That was the day we were given a summary for her life.  It was the reason for her uncontrollable seizures, her "eyes doing weird things", her cortical vision impairment, and all of her developmental delays.  8 months later it was the reason for her failure to thrive, for the need to get a g-tube, for her to start the ketogenic diet, and for the hypsarrhythmia found in her EEG background. 13 months from that original April date it was the reason for why her stomach just stopped working and why she needed TPN for the first time.  Despite always searching for various answers for her different presentations of GI issues and never needing to search further for the reasons behind her atrocious seizures, CDKL5 has always been our answer...

Until it wasn't.

In September after Sonzee received her personal gait trainer and began to practice more weight bearing we learned she had 5 fractures all in various stages of healing.  I considered every possible cause, but ultimately CDKL5 received the blame.  There are a handful of kiddos who have a CDKL5 diagnosis who also require extensive bone monitoring and supplements, so like her severe presentation of GI issues, I just considered her to have been impacted more in the area of her bone health.  Honestly, besides blaming the formula she is on, it makes perfect sense to place the burden of this on CDKL5.  She is non-ambulatory, she has severe seizures, and she has osteopenia, of course, it could be CDKL5.  Not one of her doctors felt there was any other explanation, so I let it go.

It wasn't until her most recent fracture within the last two weeks and multiple private messages from followers that a voice of doubt began to get louder in my mind.  It doesn't make sense, (my guess is) 95% of kiddos diagnosed with CDKL5 are non-ambulatory, the majority are non-weight bearing, the same percentage if not more have atrocious seizures, it just doesn't make sense!  How did she get a compression fracture when she cannot even sit? How did she get a buckle fracture in her right ankle when she hasn't even put AFO's on in months?  What caused all of her fractures in September?  These are small fractures, they do not require any casting or surgery.  I decided to call the CDKL5 clinic and ask for orthopedics and endocrinology to consult when we go in 2 weeks.  I was told that they will consult with orthopedics, but this is not a CDKL5 issue and they recommend further testing.  I immediately emailed Sonzee's geneticist and explained the situation, who after hearing CDKL5 clinic recommended the testing said she had no problem starting with the sequencing panel for brittle bones.

In 2015 when genetic testing was offered to "find the cause of Sonzee's seizures", I didn't understand what that truly meant.  I have always been thankful that we didn't have to spend years of her life wondering "why" she was the way she was, but I feel like it has prevented us from seeing clearly.  I don't know how I am supposed to be feeling right now, but it is a mixture of hope for a clear cut answer, of sadness over what that answer is likely to reveal, and fear over what it will mean for her.  The days before we were told CDKL5 I said I needed an answer, and as long as we had one I could deal with it.  I feel like I am at that point again...I need an answer and we will deal with whatever it is.

"As long as one keeps searching, the answers come"-Joan Baez

Adrenaline

Over the past 3 years and almost 11 months I have experienced a lot of internal emotions.  At the beginning, it was much easier to keep things bottled inside.  Her seizures didn't happen during the day for the first year or so of her life.  I didn't have to have conversations about her, because most people weren't aware that anything was going on.  I was more outwardly private starting out on this journey.  I have never liked to wear my emotions on my sleeves and I had not experienced enough to lose my ability to keep my emotions together.  I was a completely different person than the person I am now.

I am unsure if it is good or bad, but my ability to keep my emotions in check has lessened and lessened.  There are days if I am looked at the wrong way I get tears in my eyes.  If a song plays on the radio that strikes a cord, my eyes become watery.  If things are feeling overwhelming and someone says the "wrong" thing my patience runs thin, and I really, really, really have zero patience for stupidity.

It is amazing to me the amount of adrenaline that can course through a persons veins, accumulating, just waiting for the perfect moment to make you completely erupt, and trust me, you really do need to get it all out.  However, you are never quite sure when the moment will happen that you will become old faithful.  But at some point all of the emotions, all of the anxiety compounded with the entire weight of life will come together and form the perfect storm. 

And then one day, you may find yourself sitting at a table with a group of friends, listening to a semi heated conversation, not knowing if you should be laughing or crying at the exchange that is going on.  You won't be aware of the fact that you are holding your breath during the entire exchange.  Suddenly it becomes obvious your hands are shaking and that you aren't sure if air is moving in or out of your lungs.  You will accept the fact that you have no control over anything that is going on and you know you are having trouble catching your breath.  You will start to laugh and cry simultaneously while trying to actually breathe, and focusing on it will only make you more overwhelmed.  You might feel semi embarrassed that everything is occuring in public but at the same time, the space feels safe and small and you are thankful and relieved that you are finally letting every little thing out.

And in that moment you realize that it is not just about what is going on at that moment.  You subconsciously realize you are in a safe space, with people who care about you and who are there for you.  They may not fully be able to comprehend the situation you are in, but they are still ready, willing, and always there by your side in some way shape or form during this insane journey, over and over again, no matter how much of history repeats or how often.  And after things begin to calm down, and the entire show in all of its glory comes to a close, you now know who to call that the next time you need to have that months long buildup release get out of your system so you can start to mentally heal.  


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