When the dust settles

One of the first things to occur following a storm is looking around and assessing the damage.  It is only after the rain has passed and the dust has settled that you can truly gain your bearings.  Though the experience of surveying the damage might be one of the most emotional experiences, it will immediately become clear what has been lost forever and with time what might eventually be fixed.  There will be tears of joy at what remains intact and is salvageable, but there will also be tears over the storm itself and the loss that is now present.  It is only after the dust settles that you realize regardless of where the road takes you, you will continue on the journey that G-d has planned for you equipped with new knowledge under your belt and a new sense of HOPE.

The thing about the aftermath of a personal storm is that it is only then that you are able to analyze every moment, every conversation, and every emotion.  It is only as you are replaying the experience in your mind, on repeat, that you fully accept the emotions that you were putting to the side at the time simply so you could survive the storm itself.  It is only after you are picking up the pieces of the situation that you can fully understand and come to terms with what just happened.  I am a firm believer of allowing myself to feel every emotion.  I think it only fair to give each emotion its’ “moment of glory” so to speak, so that I am able to heal and move on.  In this case, I am processing just how close we really were to losing the bear last week.

This roller coaster of CDKL5 continues to bring its’ highs and lows. We have been feeling like we have been at rock bottom of this ride for some time waiting for our time to climb steadily back up to the top.  For all of those times we thought it could not get worse, it did.  We were flying out of control with the wind in our faces, scared out of our minds, hoping the ride would slow down, hoping we could get a hold on the situation.  If I had to pinpoint the beginning of our decent it was the Topamax wean, followed by the Gtube consult, followed by the diagnosis of hypsarrhythmia, and culminating at the failed gtube surgery attempt which led to a rescheduled PEG tube placement that coincided with a high dose steroid treatment resulting in an infection that almost took our little bear away.

I knew something was not quite right two weeks ago, I am glad I stuck with my guns and pushed the boundaries of neurotic mother and concerned mother of a child who has special needs.  Those two egos tend to battle it out on a regular basis.  It is hard to figure out which of those are “right”.  I have decided that they are both equally important and I really do not care what level of ridiculousness I have to go in order to be heard, even if that means playing the “my dad is a doctor card, please speak to him”.  Drastic times call for drastic measures, and this momma bear is unashamed.  This little bear continues to teach me more about myself every day.  We are so grateful she is such a fighter and that she still has a purpose left in her physical body.  Even though there are times that the “King Solomon mother” part of me wants her pain and suffering to be over, the selfish part of me does not want her to go.  It is such an awful position to be in as a mother.  If I were someone else reading this, my response would be “I can’t even imagine what she is experiencing, and I don’t even want to”.  Being that I am the one in this predicament, my response is “I can’t even imagine what I am experiencing, and I don’t even want to”. 

It has been 3 days since the bear is back in our home.  She is back to being clobbered by her older siblings, back to being physically present in our daily lives.  It has been 3 days since this current nightmare turned into one of the best days of the last year. The perfect storm is clearing up, the winds are settling, and I am left assessing the situation.  One of the greatest parts of what follows after the dust settles, is the restored sense of HOPE that you feel knowing that no matter what, even if the ride is not how you planned, with G-d’s help (and some sangria), you will make it. 

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Waterfalls

I can remember back to the 90's when TLC's song "Waterfalls" came out.  I am pretty sure I had a cassette version of their album and had all night slumber parties singing and dancing along to that song as well as their many others.  I have been sitting here this morning thinking towards the future with Sonzee; her constantly changing medication schedule, overall health, and potential seizure control.  The lyrics of the song managed to find their way out of my mental storage.  It always amazes me how much randomness is stored in the recesses of my brain.  Even though this song was not written with Sonzee bear in mind, the lyrics ring so true to me.

Don't go chasing waterfalls

Please stick to the rivers and the lakes that you're used to

I know that you're gonna have it your way or nothing at all

But I think you're moving too fast

It continues to be extremely easy to get carried away in the extreme tidal wave that is CDKL5.  If my worry isn't directly related to seizure control then it is her overall development or health in general that leaves me with questions.  I am always trying to be one step ahead of the potential madness, always thinking in some way I will be able to outsmart it.  I don't know why I feel I am a match for a genetic anomaly.  Biology and science in general has NEVER been a strong suit of mine.  What I know about genetics has only been brought to my attention in the last year.  There is absolutely NOTHING I can do about her condition.  As a parent this has got to be one of the WORST things.  Knowing that no matter what you do, in this case, it won't ever be good enough.  It can leave you in a constant state of panic, a constant state of worry, and a continuous state of feeling out of control.

We are always trying to figure out what the best medical cocktail would be for Sonze.  It is a fine line to balance seizure control with quality of life.  We want to be aggressive to give her the best chance to be happy and develop as well as she can, but at the same time not put her into a medical coma or expose her to too many harsh side effects.  It is a constant state of weighing pros and cons.  It is a constant back and forth of wondering if what Sonzee's current state is, could actually be made better by a "simple tweak" or if we are only going to make things worse.

It can be rationalized that whatever change that is being fabricated in your head is the better one.  It is so easy to do the "if we do this, this will definitely make a difference in a positive manner because what we are currently doing isn't working".  Sometimes you can find yourself so caught up in "Fix it mode" that you can't see that what you have is actually really great. Only after you implement the change do you realize that not all changes are for the best.  Changes can lead to an unexpected and unwanted negative cascade of events that leaves you thinking, "what did we just do?"  I am not one to regret a decision, but regardless of regret, it is still an awful feeling when you think "maybe it wasn't really broken...maybe we shouldn't have attempted to fix it".  I know that in our situation we will always find ourselves faced with these types of situations.  It will be a constant battle within ourselves to figure out the appropriate time to "jump ship" on whatever course of action we are dealing with.  But, it is always good to have a gentle reminder to "not go chasing waterfalls."

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Brave

I am not quite sure what my thoughts are tonight.  It is definitely unclear where one ends and one begins.  This whole last week has been quite a blur.  I have been saying for some time that I knew Sonzee's toddler years were going to involve many hospitalizations.  I had an idea that she could very possibly come close to leaving us, but knowing deep down she would fight as hard as her little body could in order to stay.  I had no idea what the reality of these situations would entail.  Oh little Sonzee bear…it is so painful to watch her endure everything she has to.  I am not even sure how much a little body can tolerate, but I can tell you, this little girl is one strong little fighter.

I never fully understood what was meant when people called a sick child "brave".  I never had a sick child, so how could I?  This past year of Sonzee's life and especially the last week specifically has shed light on that phrase.  Since last Tuesday, she has had six IVs.  I have honestly lost track of the amount of sticks her little limbs and head have endured in order for those six IVs to be successful, not to mention how many additional blood draws she has had to have because her veins just shut down.  She has finally received "IV TEAM ONLY" status, which signals to every nurse not to touch her.  Her little veins clot so easily that each time she has an IV placed and they take the initial blood return for testing, the vein no longer gives any blood.  This results in more pokes and more bruises.  There is no location on her body untouched.  Even if the IV "works”, they start to agitate her around 24-36 hours after placement and then I have to ask for a new IV to be placed so she is no longer crying in pain.  It is truly heartbreaking to witness and not be able to do anything.

Thankfully, they started to take her to the treatment room for all of the madness; it will hopefully keep her less stressed when she is just hanging out in her crib.  I have that filled with toys and a drawing her "twin girl" biggest sister made for her, as well as blankets she is familiar with.  I am trying to make her days similar to how they are at home and as comfortable as possible.  It has been challenging trying to figure out the culprit to her infection and exactly what is bothering her.  Playing detective is definitely not easy, but the little bear is being a great sport.  I wish she did not have to suffer and go through all of this.  I definitely do not feel as brave or as strong as she is presenting, but she is keeping me in check, for her.  I am pretty sure after all of this is over and the dust settles I will have reached my breaking point, but for now, I will try to do her justice by being as strong and brave as she continues to be.  She is definitely one of the bravest little bears I know.

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It's a marathon...not a sprint

I am not a runner by any stretch of the imagination.  The only relationship I even have to the sport is through an old pair of Nike sneakers from high school and the Bumbleride twin-jogging stroller I purchased when we had our first two children.  It was on eBay and I just wanted a discounted stroller.  Running really is not my thing, but if I ever decide to participate in the sport, I am fairly certain I would prefer being a sprinter.  My personality is much more suited for being a sprinter opposed to being a marathon runner.  The finish line is closer, the goal seems more attainable, and the race itself is quick giving you immediate satisfaction and validation for your efforts.  Yes, I would much prefer to participate in sprints.

Sam has said from the beginning that dealing with CDKL5 and Sonzee is a marathon not a sprint.  He reminds me all the time of this statement.  I say the words aloud multiple times a week in hopes of them penetrating deep enough into my brain that I can change all my ways of thinking.  Yet, here I am trying to sprint my way through a marathon.  As I said previously, I am not a runner.  I do not know the first thing about marathon training.  I do know it requires a lot of preparation.  You cannot wake up the morning of the Boston Marathon and just decide to participate, I mean I suppose you could, but I can probably guarantee the outcome will not be desirable.  To run a marathon you need to have a lot of dedication, you need to have patience, strength, and endurance.  You have to be willing to spend months and years adding distance to your daily runs and putting up with all types of weather.  You cannot just become a marathon runner.

I have found that no matter how many times I remind myself that this is going to be a long haul type of event, I am still stuck in my “immediate fix it” type of ways.  This experience has been a HUGE test of my patience.  I have definitely made improvements in that department but wow do I have a long way to go.  I constantly want to do quick fixes for whatever discomfort Sonzee might be facing; unfortunately, there are no quick fixes.  There really are not even fixes.  Her seizures will come when they want, how they want, and in any form that they want.  Her body will get sick when it wants, how often it wants, and in whatever fashion it wants.  There are things I can do for her to provide comfort, but they seem to fall short in being permanent remedies. 

It has been exactly a year since I first stepped foot in the ER and said the words, “I am pretty sure my daughter is having seizures”.  I have now been in my training for 365 days.  I am definitely more knowledgeable than I was a year ago, but I do not have many more answers now to the same questions I have asked or wondered throughout the months.  These next couple of years are going to be difficult, I know this.  I am attempting to prepare myself, but I would much rather fast forward.  I keep saying, “Keep your eyes on the prize”, I do not even really know what that looks like.  I know it involves some semblance of seizure control, but really, I just want the bear to be happy.  I want her smile back and I want her cute little personality to shine through again.  I am having a tough time right now in this part of my training.  It feels like this is an insurmountable task, similar to if you ever asked me if I intended to climb Mt. Everest, Umm…No.

So, here I am in the midst of a marathon I was not prepared for and I am definitely more of a sprinter.

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A Bucket List

There is a sense of urgency that occurs when your child has a diagnosis that has an undetermined length of life expectancy.  It is really odd when you think about it, because essentially isn't that what we all have?  No one knows when it will be our last day here on earth, yet the majority of us continue with our daily life as if we have a full 100 years to complete our desires.  It is probably safe to say that unless you or a family member has been diagnosed with a terminal illness, you are not living your life as if you were dying.  Sure as you grow older you may realize life isn't going to last forever and so you go on more vacations, you tell people your true feelings, and you may do more of what makes you happy.  But why does it take living half of your life or having a less than desirable outcome to make you realize NOW is all you have?

I have been thinking about all of the things I have wished to do my whole life; travel the world, go on a zip-line, own two homes, (my list goes on) and it made me start to think about what I hope for Sonzee to complete in whatever time she has here on earth.  Of course with her disorder we really don't know how much time she has remaining, and while yes any day could be our last, for her, it might come a lot quicker than any of us are ready for.  I don't want to have any feelings of regret for her.  I don't want to wish that she did more.  So, I have decided that Sonzee needs to have a list of goals for her to start working on completing.  Luckily, for her three siblings, this means that they too will get to benefit.  It should not have taken until my fourth child, nor should it have required her to have a CDKL5 diagnosis for me to have my "aha moment", but here I am.  

I could google bucket lists all night long, but I would much rather that Sonzee have her storytellers to help her complete this task.  I would love you to reply to this post via comments, email, Facebook messages, etc. with what you think should be on Sonzee's bucket list.  There are no restrictions, no limitations; all suggestions are greatly appreciated.  We thank you so much for your support and I cannot wait to publish the outcome!

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