Confusion

Sam and I have been attending a virtual grief support group for bereaved parents on Monday's every 2 weeks.  I personally find it therapeutic and a safer place to say the thoughts aloud that I might sensor around others who (thankfully) haven't lost a child.  There are just some things you cannot relate to or comprehend unless you have joined this group.  At the end of the group this week we were all asked to use one word to describe where felt we were in the process.  I have a difficult enough time trying to identify with one word as a description on a good day, and of course the minute the question was asked every single word left my internal dictionary.  I started by saying that it really varies depending on the hour, but overall, the word I chose was confusion.  I don't really feel that word does my emotions justice, but I cannot find a better word to explain the myriad of thoughts that consume me.

We spent her life on auto-pilot essentially, trying to find everything and anything to ease her symptoms and make her quality of life even just an ounce better.  We didn't dwell on the situation, in fact, I feel like at times we even embraced it.  My internal motto her entire life was that I didn't have to spend the time worrying about her death or what would happen after because one day it would happen and after that point, I would have all the time in the world to look back and relive it all.  It was one hell of a ride, so many emotions and feelings along the way placed on this virtual back burner.  Now here we are, a week shy of the 5 months marking of her death and that motto couldn't be unfolding more accurately.  We hustled, we made it all work, we balanced it all like it was a profession and then it just stopped.  Our 4 years 11 months and 23 days of making lemonade out of lemons was obliterated in an instant and now there is a calmness in our house that makes absolutely no sense.

I can't figure out how to even make sense of the situation much less any of my thoughts.  Is there even a way to do that?  Life for the rest of us continues to go on, but a hugely significant piece has permanently disappeared.  There are no more fights, emails, or lengthy phone calls between insurance companies, doctors' offices, and pharmacies over medications and procedures that "aren't medically necessary".  There are no more meetings, evaluations, service plans, or any amount of time needing to spend on those items.  No more hours are being spent organizing supplies, ensuring the appropriate supplies are en route or approved.  There are no more appointments, random hospitalizations, or even scheduled ones.  No nurses are opening my garage and letting themselves into the house or sitting next to me in the car listening to all my thoughts and becoming part of our family.  There are no daily medication times, no alarms signaling reminders, no extra precautions that are needing to be taken to go anywhere or do anything.  We aren't limited to when or where we can go anywhere having to consider its location to a large children's hospital.  There are no more sleepless nights due to the fears of seizures or pain disturbing her night. It all stopped, in an instant, and now there is just this deafening silence that is filled with constant replays of a life we no longer live leaving all the emotions once ignored to finally be addressed...and so there is...confusion.

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.

Muddled thoughts

I started to write a post the other night after I came across a picture of a child younger than Sonzee diagnosed with CDKL5 who was sitting.  I couldn't shake the feeling that came over me, so I opened up blogger and scribbled down my thoughts.  In summary, it was happiness panged with being envious that Sonzee's mutation was not affording her the same capabilities.  Naturally, life got in the way so I have not had a chance to finish those initial thoughts.  Then today, completely unexpectedly, it was me witnessing and then posting a video with 13 seconds of my child with CDKL5 sitting.  It wasn't pretty, it wasn't the way any of my typical children began to practice when they were 5-7 months old.  She was completely wobbling, her body awareness was completely off, she required multiple touch cues, and she fell over every single attempt, BUT she sat.

I hesitated about posting it, even though it is only 13 seconds, it is 13 seconds longer than so many children diagnosed with CDKL5 or other various causes to their medical complexity have been able to do.  While it by no means can count as hitting the milestone, I am feeling a pang of milestone guilt for the other mother's who have not experienced these 13 seconds.  I still cannot leave her on the floor to play, sit alone on a couch, put her in a shopping cart, or place her in any other situation that the majority of parents of 6-8 month children get to celebrate doing, it is 13 seconds longer than I expected at this point in her life, and 13 seconds longer than some of my special needs mommy friends haven't been afforded. 

4 years into this life and I feel like I am still figuring out how to make it all work.  The desire to celebrate milestones met by our children's friends, yet silently mourning the fact that our child can't or won't meet them.  The desire to want to celebrate our child's accomplishments without making another parent cry themselves to sleep because of it.  The doubt we feel about what we are doing to support our child when another parent says all that he or she has their child participating in.  The wondering if what we are doing is ever enough.  The confusion of if our choices are right or wrong, and if those choices are the causes of the negative outcomes that ensue.  And the ever-present, always lurking question of despite what we may or may not have our child try, despite them ever officially meeting any standard milestone, does everything we do at least add up to a desired quality of life. 

A wish

I was putting my older girls to bed last night when I decided to ask each of them what they disliked most about CDKL5.  The younger one quickly said "the seizures", and after mulling it over a bit the oldest said "it is sad".  I first asked the younger one, "why do you dislike the seizures?", and she replied by putting her hands up, clenching her jaw, and saying "because you look like this".  I then asked my oldest, "why is it sad?", and I was told "because you cannot talk".  As I am sitting here I am asking myself the same question and I feel like it is similar to being asked, "would you rather be deaf or blind?".  Neither is ideal, both have their challenges, and I would rather none of the above.  However, if I had to choose what I dislike most about Sonzee's CDKL5 mutation my answer would be that she is trapped.

On Monday evening I received an email from one of Sonzee's doctors suggesting we put her back on the pain medication, gabapentin, at a higher dose than last time to help with the visceral hyperalgesia.  What if she doesn't even have stomach or intestinal pain and I am misinterpreting her vocalizations?  What if she is itchy or nauseous?  What if she just has a headache or is dizzy from all of the other medications she is on?  What if she is just a sassy toddler that cannot get her point across and she wants to be doing something else besides what we think she is wanting to do?

If one wish of mine would be granted, I would use it to have a day where Sonya could communicate to me.  A day where we could come up with a system for me to learn her specific movements, facial expressions, and vocalizations so that when our day was done I would still be able to understand her wants and needs.  I would ask her to tell me how she would prefer to be handled during a seizure and how best we could comfort her when it was over.  I would want her to tell me if I have completely missed the mark with my advocating for things I think she wants or my assumptions of her ailments.  There is not much else that is worse than the feeling I have in the pit of my stomach of being wrong about me potentially misinterpreting her discomforts and her being unable to tell me I am wrong.

Mommy bloggers, Join me @ Top Mommy Blogs

Never

In parenting in general I have always tried to avoid using the words "I will never".  I figured eventually I would most likely become a hypocrite because how could I say "never" when the whole experience was something I had never taken part in and therefore knew nothing about to make such a hefty accusation.  I knew in the back of my mind how I wanted certain things to play out, but then life happens and you just never know what choices you thought you would "never" choose.  

The opposite has been the case when it comes to specific anti-seizure medications.  Once you get thrown into the world of seizures and spasms, and various drug names you quickly get a clever idea of the drugs that you would not want to spill on the floor due to the hazards much less put into your child's body.  From the beginning Sam and I were adamant "we would never" give Sonzee the drug Clobozam, also known as Onfi.  It is a "big gun" anti-epileptic medication, known as a sedative and classified as a controlled substance.  The warnings for this drug are printed in bold on Onfi's very own website.

                    

               WARNING: RISKS FROM CONCOMITANT USE WITH OPIODS

See Medication Guide and full Prescribing Information for complete information.

ONFI is a benzodiazepine medicine. Benzodiazepines can cause severe drowsiness, breathing problems (respiratory depression), coma, and death when taken with opioid medicines.

I find that we are at an impossible crossroads.  I cannot in good faith let my child seize multiple times a day for 10+ minutes each time.  She cannot keep sleeping and seizing.  On the other hand, our only choice is a drug that could literally kill her with respiratory issues and/or make her sleep all day long.  As usual the question of "quality of life" presents itself in a more pronounced manner.  She does not have much quality these days with her seizing schedule.  We are at the point where we must take the chance.  We must play Russian roulette with our 2-year-old and we must pray we will not regret going back on our never.

Mommy bloggers, Join me @ Top Mommy Blogs

Trying to find the positive

Whenever I find myself getting sucked into the trenches I try to focus on something positive, even if it is a reach.  There is always a fine line of looking at the bright side of a situation and embracing it, but not fully relying on it remaining that way.  For me I have to be careful because the path of this journey can change in a second (literally) and then the positive reference is no longer.  It is because of the experiences we have had over the past two years, (during springtime especially) that I am having finding it more challenging than usual to find the "right" positive point.

It has been a little over 24 hours since Sonzee's last seizure.  It wasn't one of the scary ones, it didn't require oxygen after it was over, and she didn't sleep for hours on end.  I am so grateful for the past 24 hours, but I know better.  Maybe her medication increases are finally working.  Maybe her brain is being nice to her and giving her a break because it's been a pretty awful week, or maybe it is just giving her some time because of what is yet to come.  I wish I could be as excited as I once was over making it to 24 hours, but two years in and I know while it is a huge deal, the celebration will not last.  I am numb to seizures.  I wait and expect them and am more surprised than not when they do not happen.  Truthfully I prefer knowing they are coming because it is a certainty, something I can "plan", something "reliable", I do not like to be sitting here in anticipation.  So I am trying to focus on the past 24 hours...but I know the clock will reset.

It has been a significant amount of time since Sonzee has been inpatient and last year we spent approximately 3 out of 5 months in the hospital (not consecutively) from January-June.  Her health since her NJ tube was placed has been relatively stable, her feeding continues to be tolerated, her seizures haven't landed us in the emergency room requiring rescue medications.  I am truly appreciative of these blessings, but I know things can change by the time this post publishes.  I know too much of what can happen and I know she is not immune to anything.  I am trying to focus on the positive of all I have listed, but that almost feels as if I am asking for a challenge...and I am not all for tempting fate.

It would be nice if the current situation we were in did not leave me feeling a bit uneasy.  It is as if my brain and body subconsciously know things are going to spiral out of control.  I hope it is merely the fear of history repeating itself.  Since we are in this uncertain limbo, I am going to do my best to focus on the fact that she is stable and continue to try and find the "perfect" positive.
 

Mommy bloggers, Join me @ Top Mommy Blogs

When seizures return...

It's been one of those weeks where life ran me over like a truck.  It's weeks like these where the regular stresses and dealings of family and life mixed together with the dealings of CDKL5, leave me feeling pretty crappy.  As organized as I feel we are, things are falling through the cracks, I feel quite defeated in the parenting department (for all of the kids), and I really dislike this winter cold season.  

As much as I would like to think that having Sonzee doesn't impact us much more so than if she were healthy, it's simply not the case.  My priority is always around the health of my children, but especially on little bear, because the slightest cold can make life hell.  Ensuring she stays the healthiest possible and that her seizures stay at bay is, in reality, not even something I have any control over.  Yet it doesn't stop me from focusing my attention on both of those things daily.  I can tell you from experience, it's nearly impossible to focus on much of anything else when you are consumed with the return of seizures, but I can also tell you it's impossible not to be consumed by them.

I always took her little retreat from seizures with a grain of salt, never once fooling myself into believe it would be permanent.  (In fact I had given up any hope that she would even get an extended break from them-so I'm thankful for the time she had). The fact that they are back doesn't surprise me, nor am I devastated, because it happens.  CDKL5 happens and this is just what comes with the mutation.  However, what I didn't miss and the thing I dread the most is the uncertainty that comes with the seizures. The unknown triggers, the guessing game of when they will happen, the attempt to plan a day when odds are it will NOT go that way, the daunting task of considering medicine changes, wondering what or if anything will help them, not knowing which decision we make will be the one we wish we had not.  All of the above is what I HATE in addition to watching her seize, but lucky for me, it comes as a packaged deal.

I know when seizures are around my ability to focus and be anything other than physically present is gone.  Older kids miss homework, activities are put off or missed, my patience runs thin, my ability to put up with anything is gone, I am simply in a constant state of numbness and just functioning to survive.   So with the warm welcoming we have received from the seizures this past week, I should probably just accept the fact that my best is just not going to be good enough in the weeks/months to come.

Mommy bloggers, Join me @ Top Mommy Blogs

Less than a year ago...

Less than a year ago I read a post on a fellow CDKL5 child's facebook support page that made my heart race and panic set in.  It was the night that Harper's mom Penny wrote that Harper was sick and that she was in the PICU.  I was so beside myself I didn't know what else to do other than write.  It was the only way I knew how to get my thoughts organized and the only way I felt like I could help because others read my blog posts and that would mean more prayers would be sent up.

At this moment I honestly feel like copying and pasting the first four paragraphs of that post.  I have no better way of expressing my thoughts right now.  Again, I find myself empty and broken.  There is yet again another child with CDKL5 being transferred to the children's hospital, in fact this time it is actually Sonzee's children's hospital.  It started as a fever and what we know is that Sonzee's CDKL5 sister, Lily, is very sick.  My brain is again clouded but this time more so with confusion.  How does a "simple" cold/fever become complex in a matter of minutes.  Why do our girls hide things so well?

I have my usual assortment of emotions; fear, panic, and sadness ranking among the top.  The shock component has sadly dissipated after living 20 months of life with a child who has a CDKL5 mutation.  Tonight my heart is breaking specifically for Lily and her family.  Lily's mom Kim was the first CDKL5 mom who I met in person.  She came to PCH during one of Sonzee's first hospitalizations shortly after her diagnosis.  She sat with Sam and I for a long time.  She is one of the sweetest and selfless people I have ever met.

Again I feel helpless and all I can do is pray for a miracle and hope to reach enough people who will do the same.  CDKL5 does not just take away the ability for our children to do daily tasks; it causes many tears and breaks an unnecessary amount of hearts far too often.  

Please pray for Lily and her family tonight.  Please pray that she can overcome this sickness and that my follow up post(s) will only be good news moving forward.  Please pray for the CDKL5 community tonight as we rally around our CDKL5 daughter and sister, Lily, as well as her family.

Mommy bloggers, Join me @ Top Mommy Blogs

Blurred Boundaries

With my three older children I visit their respective pediatricians one to three times a year and once a year my son has a routine cardiologist appointment.  There has never been an issue with either of them (thankfully) that couldn't be handled by the after hours on call doctor or couldn't wait for regular office hours.  I do not have e-mail access nor private phone numbers for them, but that is okay because I do not need this type of special access.  Then there is the Sonze.  I have emails, cell phone numbers, direct office lines, etc to all of her practitioners.  As a daughter of a medical doctor, I do my best to respect that all of her doctors have families and lives outside of their offices, but as a mother of a medically complex child I find myself worrying that I am crossing the line.

I realize I have this access because I am trusted to not abuse the honor and I really do my best not to, but sometimes I wonder if my emails of "urgency" are overstepping the privileges I have been given.  I wonder if I am being too annoying.  I worry that when my email pops up in their inbox at all hours of the day that they roll their eyes or think about "kicking me off of the team".  It is another dilemma I find myself in learning how to maneuver through this special needs parenting world.

Yet here I am at home with little bear and she is in pain.  Pain that I know is related to her GI discomforts, but yet we don't know why it is occurring.  Her crying ebbs and flows, and she has moments of smiles and joy and then immediately they turn to screams of pain.  The screaming can last four hours on end and the only thing I can do is send an email or a text begging for help.  They always offer suggestions and a plan, and I am appreciative her team ALWAYS replies no matter the day or time, I just hope I am not overstepping any boundaries.


Mommy bloggers, Join me @ Top Mommy Blogs