Something's got to give

I'm sitting here in Atlanta awaiting my next flight.  The flight that I scheduled on a  "I need to get away and have some mandatory much needed girls vacay and cuddle a brand new baby while reminiscing about the good old college days with my sorority little sister and best friend" whim.  The flight that I knew if I didn't book the minute I did, I never would.  The trip that was planned to be taken solo but as the week approached I realized that there was no way I would even be able to breathe much less enjoy myself if I didn't have a close eye on Sonzee bear.  So here I am at gate A05 in Atlanta's Hartsfield Airport waiting on our last leg of the trip to Ft. Myers...smelling of vomit and holding back tears.

I'm at such a loss.  For starters the tears might not be so forth coming had I even slept 30 minutes on the red eye portion of the trip.  Between Sonzee laying across me, me trying to keep her comfortable so she could sleep and also allow everyone else on the flight the chance to do the same, and my inability to sleep on airplanes, here I am...red eyed and choking back the tears as I write.

It's been weeks since Sonzee has been able to keep her food down.  Weeks.  Her poor tummy just can not digest the food she takes in at a normal rate.  She is constantly crying in pain and we are always trying to vent her tube (let the air out of her stomach directly) to little avail.  If we are successful then she keeps her food in, but she isn't able to consume the amount she needs in order to grow and gain adequate weight.  This tube was supposed to help her and solve all the weight issues, but like everything else with the bear...it's never that straight forward.

Gah!

Here I am sitting here at the gate waiting to board the next flight and she threw up again!  I am out of changes of clothing, she is sopping wet, my hair and clothing smell like her nasty formula concoction.  She is finally asleep and most likely won't eat for a good majority of the day.  I'll attempt to get some calories in her or at least hydration, which will work for the day- but in another two we will be back in the same predicament. 

We have a call into the GI office, but unfortunately their first appointment is August 8...AUGUST 8...WHAT?! It is May 1.  How is this girl supposed to wait until August with these issues???  How am I supposed to keep watching her suffer?  This is beyond awful and I'm broken again.  

Her recently unveiled personality abundant with smiles and sweet sounds are the only things that are keeping this portion of the coaster bearable.  I love her personality and I love her new capabilities.  She is so happy and it makes my heart swell with amazement and pride.  My heart aches simultaneously because she can not seem to catch a break...there is always something with the Sonze, and honestly, something has got to give.

Moments

There have been plenty of moments along this journey that have left my face hurt from the amount of smiling that has occurred.  Genuine happy smiles brought about from being an extremely proud mom.  The times that definitely involve me grabbing Sonzee, squeezing her so tightly, and planting hundreds of thousands of kisses on her yummy yummy cheeks in a celebratory manner.  These types of moments are thrown in sporadically, and sometimes if we are lucky, they can last longer than a blink of the eye.  I like to think of these times as G-d's way of saying..."Hang on Randi, I haven't forgotten about Sonzee".  No matter how utterly incredible these moments are there are challenges that coincide with these types of moments.  

On the positive side they are a blessing in their impeccable timing, typically occurring around the more challenging times.  The times when I feel we are at the bottom of the coaster.  The times when I feel a little lost and insecure about her development.  The times I feel like she is only child with CDKL5 not accomplishing any goals.  These moments serve as a necessary pick-me-up granting me motivation and inspiration to tackle what is next along this pebbled path.  I cherish these moments in a manner that as usual for me, is difficult to articulate.  I feel almost swollen with joy and pride.  These times essentially wipe the slate clean and mark a new beginning for Sonzee's story.  

Then there is the dreaded negative side.  The side that most people do not want to admit exists, but we all know does.  A horrible effect of these moments is that they are also a huge slap in the face.  They are a stark reminder that even with the most optimistic parenting in the world, a life with CDKL5 can realistically only bring moments of euphoria.  It is a reminder that these joyous moments are unfortunately not our normal.  They are rare enough that they have taught me to actually appreciate them in a manner I never knew was possible just a year ago.  These moments represent that at any moment the elated cloud 9 unbelievably happy; heart stirring, overwhelming, spine tingling moment can simply be popped like a latex balloon (my least favorite and most feared item).

While there is something to be said for living in the moment, it is definitely not always rainbows and butterflies.  In the past year, I have really learned to understand what it truly means to "live in the moment".  All you really have is a single moment to feel whatever emotion is present, because in a split second it is gone; the moment is gone, the thoughts you have are gone, and the feeling you are experiencing is gone.  The easiest part of "living in the moment" is saying the phrase.  The more difficult part of "living in the moment" is carrying out the action.  The most arduous part, that I am still struggling to master, is truly embracing the moment without fearing what is to come following the moments end.  

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Small victories

I often joke that Sonzee's pediatrician's office should create a standing appointment on either Monday or Friday of each week at 12 noon, because the last couple of weeks we have taken the noon spot on one of those days.  To say I speak with her pediatrician at least once a week would be conservative, as she so graciously answers my text messages multiple times throughout the week in order to try to keep Sonzee out of the potentially germ infested office.  As I have previously stated, we have an amazing pediatrician (it is okay to be envious).  Last week when the little bear started to act a little off the first thing I did was take her to her pediatrician on Monday.  

We decided that minus Sonzee's low-grade fever and little cough, that it was safe for her to ride out whatever cold she had without the aid of antibiotics.  Her chest sounded perfectly clear, she was tolerating her feeds well, and her older sister had a runny nose so we assumed it was just par for the course.  I left the office with the directions to keep an eye on her and to be in touch if necessary.  Every night for the past couple of months Sonzee has slept attached to a pulse oximeter that measures both her oxygen saturation levels and her heartrate.  Let's be honest, my neurotic self has wanted one of these handy little devices since I became a mother, so it was a small jackpot when I was finally able to score one for baby #4.  Once we got one, it was time to commence an attempt at a decent night sleep.  My lack of sleep since we got this was now no longer due to my fear of her stopping to breath in the middle of the night.

On Tuesday night, every couple of minutes the alarm would ring when Sonzee's oxygen level dipped below 90.  It was honestly getting frustrating hearing the alarm ring when it was only for 10 seconds or so and then it would pop right back up.  I ended up changing the settings to only alert me if the levels fell below 89 because that was the number it consistently was falling to.  On Wednesday morning I texted her pediatrician and asked her at what point I should put the oxygen on Sonzee.  I gave her an update on how things were and we were both still not concerned about how the bear was doing.  It was not until Wednesday night when Sam and I started to think that maybe things were headed in an unwanted direction.

It was around 1:30am Thursday morning when I realized I was not going to get any sleep because the alarm was constantly ringing.  How my dear husband sleeps through that sound is something I will never understand.  This time I watched the clock as time seemed to stand still because not only were the numbers in the low to mid 80s, but they remained there between 5-10 minutes each time they dropped.  Per her pediatricians directions, if the numbers were in the 80s for a significant amount of time (5-10 minutes) it was time to place the bear on oxygen.  It was at this time I yelled at Sam to wake up and told him that I thought it was time we hook her up to the oxygen.  I was not quite sure how to use the machine because when it was dropped off I had just gotten home from the hospital and my attention span for learning about an oxygen machine was nonexistent.  Sam got it set up and then we were all able to get some sleep.

By Thursday morning, her cough sounded awful and we attempted to turn off the oxygen, but her levels dropped immediately.  I panicked on the inside thinking that our Passover holiday was for sure going to be spent as a split family, with myself and Sonze at the hospital and Sam and the other kids at our friends' as previously planned.  I spoke with her pediatrician to fill her in on the situation and we came up with a game plan.  Sonzee started antibiotics and we continued with the oxygen.  

I have to admit that in the recesses of my brain I was fearful that this was going to be the cold that started her never-ending requirement of full time oxygen.  I kept that thought locked far away so it would not be one of those self-fulfilled prophecies.  Sonzee did look adorable even with the cannula in her nose, but I was not "prepared" for this to be her new every day look.  Sure, I became pretty swift with my maneuvering around with both her oxygen and her feeding tube bag while on the go, but this was not something I anticipated when she first showed signs of being sick.  We slowly began to lower her oxygen levels on Saturday.  When she was awake, she was able to go short periods without requiring any oxygen to be given.  I slowly started to breathe.  By the middle of the night on Sunday, she was removing the cannula in her sleep and was really aggravated that I was continuously putting it back in her nose.  I finally gave in and figured I would see what happened if I turned it almost completely off.  Sure enough, her oxygen level remained above 95, so I turned it off.  By Sunday afternoon, I was even able to say my previous fear aloud, as I realized my little bear prevailed yet again, and she was not going to require the oxygen 24/7...at least not now.

This little girl is definitely a force to be reckoned with.  She is a grizzly, polar, and brown bear all rolled into one Sonzee Bear package (complete with an adorable outfit and of course a matching bow).  She fights each little battle with such determination.  She is so strong and deserves such praise when she comes out victorious.  This cold could have easily sent us packing our bags to the hospital; the outcome could have been completely different.  Today we celebrate the small victory of being able to treat a cold at home.  We celebrate that we were and are able to continue to celebrate the Passover holiday as a family, all together, and in a home.  Today we celebrate another win for the home team.

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You are not alone

Everyone faces a struggle at some point within his or her life.  Whether it is socially, emotionally, or physically, no one has a life without being faced with a challenge.  No matter what you may be experiencing whether it is feelings of isolation, feelings of removal, and feelings of withdrawal or just simply feeling alone, it can lead to an overall feeling of helplessness.  You may feel like no one cares, as if no one understands, or that the burden of the weight of the world is yours alone hold.  Maybe you have a physical support system in place, maybe you have an online support group, or maybe you would just rather keep to yourself.  Please know, no matter which category you feel you fit, even if it is a category that I have not listed, YOU ARE NOT ALONE.

Believe it or not there is at least one other person out there going through a similar struggle.  They may not be handling the situation in the same way as you, but they can relate and they do understand.  While no two experiences are the same because multiple variables play a roll, someone has worn a pair of similar shoes.  There are those who will spend hours out of their day ensuring you do not have to endure your journey by yourself.  Do not be afraid to reach out to others.  Even if the person you choose to share your emotions with has not traveled your path, you can bet they have experienced their own types of pain that can be of value to you.  Let people in.  Share your story with at least one other person; it can be truly therapeutic in a manner you did not even know was possible.  In doing so you allow others to know that, they too are not alone and it can remove an invisible weight that you may not have even known you were holding.  Remember, YOU ARE NOT ALONE.

If you are one of those independent, strong willed, never lets anyone see you cry type of personality, needs to put on the brave face (<-hint...this would be me), YOU ARE NOT ALONE.  It is OKAY to cry, it is OKAY to break down, and it is OKAY to be a hot mess.  Most of us do all of those things in private regardless of whether we admit it or not, so again please know YOU ARE NOT ALONE.

Whether you are having a great day, a good day, a mediocre day, a bad day, or an awful day, please always remember YOU ARE NOT ALONE.

 

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Keep going

I am pretty sure it was quite obvious that by the end of last week I hit a personal low.  Those times are never easy to acknowledge or admit aloud, but thankfully this blog and all of the support that accompanies it has allowed me to really feel and embrace the emotions that come with being a parent of a child who has special needs.  There is always beauty in this chaotic and insane life I am a part of, but some days I do not want to see it.  Some days I just want to schedule some me time to wallow in self-pity, eat unhealthy foods, drink a glass a wine (or a frozen margarita) and just feel all of the pain that I work so hard to keep bottled up inside.  I feel like every once and a while it is okay to take a day to feel sorry for myself, but then I need to come back to reality and embrace the position that I have been placed into.

It is usually after I experience the darker days that I am more rejuvenated to get back on the horse.  I feel a sense of eagerness and excitement to tackle the tough times, embrace the joy, and celebrate the tiniest fetes.  It is as if my old blood has been replaced with healthier more positive blood that helps me to better function.  Once I "return" there is a sense of ease that sits within me, a new appreciation for the role I am playing in this life.  It is at this point, where I give in to the fact that I have no control over what the future holds and I just need to buckle up.

After a year, I can say this is my favorite part of the coaster.  The part right after the harness comes down across my chest and I tug it slightly to ensure it is secure and the coaster car pulls away to embark on the slow ascend to the top.  This is the part where I get to dangle my feet and think about everything that lies ahead with a sense of eagerness and slight tinge of fear.  The part where the course of the coaster is unknown but knowing deep down it is sure to be a thrilling ride.  It is during this time that I feel every emotion in me, but the sheer energy within me brings about a huge smile.  It is at this point when the Rascal Flatts song "Stand" fills my head and I just have to brace myself for the descent of the coaster.

"when push comes to shove

You taste what you're made of

You might bend till you break

'Cause it's all you can take

On your knees, you look up

Decide you've had enough

You get mad, you get strong

Wipe your hands, shake it off

Then you stand, then you stand"

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