Return to "normal"

As of Friday, Arizona's "stay at home" orders will be lifted, and just like that the state will be returning to normal.  Whatever that new normal is anyway.  I am on the ledge with my feelings, I have been from the very beginning.  On the one hand, the entire 4 years 11 months and 23 days of Sonzee's life we spent in a sort of quarantine.  We were extra diligent about who we allowed in the house and where we went.  Anyone close to us was aware that our restrictions followed Pheonix Children's Hospital, and that meant between December and May you weren't allowed in our house and we weren't going into yours.  We did our best to protect her, and if I push any potential "mom guilt" aside, we did a pretty damn good job of it.  Pre-covid19 times were for us, spent as if the virus was around because Sonzee was around, and now, now we are told to return to normal, yet I don't have the slightest idea what that even means because this was our normal.

Today, for the first time in 5 years we are packing up the car with four children for a weekend getaway that we booked yesterday.  A spontaneous trip to the cooler weather for us to go to be in a different location, to continue to do what is familiar to us yet completely unknown because there was no need for preparation.  There are no deliveries to work around, no fear of being 3-4 hours away from the nearest children's hospital, and no nurses to convince that they too need a weekend getaway.  There are no pressures to return to the normalcy of stores, sports, activities, or even socialization because we are going to hide away in the woods, and seclude ourselves even further.  The only decisions I anticipate to make this weekend are whether to sit outdoors or go for a walk.

I can't lie, the entire quarantine period has been a significant relief for us not having to figure out what our new normal is going to look like.  The fear of having to start to face that reality as soon as Friday is making me feel completely suffocated.  I don't know what is best for our family because we aren't the same family we once were.  The horribly sad reality is that we don't have to make all of the sacrifices we once used to make (without even thinking twice), yet that brings on its own form of heaviness.  I don't know what normal is, or what it is supposed to be.  I don't know if I am even ready for any new anything, much less a normal that doesn't revolve around a medically complex child.  What I do know, is that since I am not ready to deal with whatever normal might be, we are going to head over to Sonzee, tell her I will be back to see her Monday and let her know that she can come to join us in 20-degree cooler weather.  All the while I am going to be reminding myself that this weekend getaway is not going to give me any concrete answers or feelings of normalcy no matter how much I would love to fool myself into thinking that it could or would.

Keep on moving

3 years 5 months and 11 days ago Sam and I made the "controversial" decision to start our then 7-month-old baby Sonzee on her first dose of CBD oil.  I remember giving her the oil via a dropper into her mouth under her tongue a couple of times a day, and especially while she slept.  I remember the fear of dosing her incorrectly, the initial skepticism over whether it would work, and the curiosity of whether it would actually work for her.  I remember being cautiously optimistic, but at the same time, there was a very large part of me waiting behind the scenes to pull the cord that sent the room into a full-blown celebration when it would be the answer, HER answer.  I remember the initial feeling of defeat when that was not the outcome, HER outcome.

Over the course of 2 years, she would try multiple brands of oils, pastes, and types.  After each unsuccessful attempt, we were hit with mixed emotions.  Was it the brands we were choosing? Was it the dosing?  Was it the type?  Was it an allergy to the carrier oil/base? We felt disappointed because we felt surrounded by so many success stories, why couldn't she be one of them?  In my dreams, I planned on purchasing a billboard to join the bandwagon of spreading how medical marijuana was medicine, how it really does work, and how much better it is than pharmaceuticals.  Yet every time we found ourselves let down, trying to rationalize why it didn't work.  Then someone would share their success with another brand and we would talk ourselves into trying it again.

For the majority of 2018 we said we were done with any CBD oil, but then Epidiolex came to the market.  The jury was inconsistent even among kiddos with CDKL5, but it seemed again the vast majority who were on the trials had amazing success, so naturally we had to try it.  The day the FDA approved doctors for prescribing Epdiolex was the day Sonzee's epileptologist wrote the script.  With eagerness and anticipation, she too was curious and excited to see how Sonzee would do, we were her first patient to finally get it and start it in December.  As usual, I didn't allow my mind to run too far off into the land of CDKL5 miracles, but I definitely put more than one egg into the basket.  Which is why my heart is hurting and feeling a heavy-weight as we are in the process of weaning what was her "hail mary".

I wish I could convey in words to those of you not parenting a child with refractory epilepsy exactly how it feels to know there is absolutely nothing you can give your child that will ever stop her seizures.  I wish I could express the heavy-weight mixed with airlessness that resides in my chest over the fact that nothing will ever work, but yet we are incapable of not trying more cocktails, more useless combinations of pharmaceuticals, or potential new hail mary's that will pop up along the way.  I wish I could adequately explain the pain and suffocation that never goes away because as long as she is alive she is suffering multiple times a day for 10+ minutes each time and there is nothing we can do for her.  Nothing exists to correct the awfulness that ONE little misspelling on ONE gene has caused.

Sadly, our chapter with CBD is coming to an end.  Part of me doesn't want to believe that, and the other part of me says "just let it go."  It has nothing to do with her age, with the brand, with the dosing, with type, and/or with the base.  It is just like every other epileptic medicine (natural or not) that works for some and doesn't for others.  Even though we have been down this path before with so many medications, breaking up doesn't get any easier.  We will eventually get over this loss, it will take us some time for us to allow ourselves to believe something out there will work.  But eventually the disappointment won't feel as fresh and the optimism (while never as high as it once started) will slowly build its way back up, and no matter how many more times we will inevitably find ourselves traveling down the same exact path, we will do it with a smile. Because, as Albert Einstein said, "Life is like riding a bicycle.  To keep your balance you must keep moving."

Adjustments

Every time Sonzee goes inpatient it always takes time for us all to readjust to being home.  The first day is usually filled with equal amounts of excitement and stress.  Excitement because of the obvious, and stress because life at home has been literally going with enough to get by and hospital life has had me missing so much of what has gone on at home that blending the two worlds usually results in the inevitable first night "Randi tantrum".  It is usually filled with everything a three year old would be giddy with excitement over witnessing, and everything a mother would be cringing her teeth over; but I would hate to disappoint either.

Overall I really do honor the motto "do not sweat the small stuff", but after coming back into real life pretty much all of the small stuff turns into insurmountable stuff; including but certainly not limited to items on the counter that have literally been sitting in the same spot for three weeks, laundry in the washing machine but the machine not turned on, and or toys sitting out or put in the wrong location.  I can feel the tension building up inside as 100 bags that have been accumulated from the hospital as if we went on a vacation and hit the gift shop spider web sit on the floor taunting me.  The kids are of course rambunctious and wanting to release their energy by either arguing with one another or playing with the least appropriate indoor toy.  I am exhausted and completely overwhelmed with everything, and then after walking by the filled but not running washing machine, or item sitting in the same spot, like a branch on a tree, I just snap.

They are certainly not my finest parenting/wife moments, and I hate that they happen, but sometimes Sonzee isn't the only fragile one in the house.  There are so many adjustments that come from each of her hospitalizations and it isn't like there is any easying into the situation.  It is like being thrown into the middle of the ocean where there are only sharks swimming around and you have watched a couple videos of people swimming but have never received any actual swimming lessons.  The fear of drowning, being eaten alive, or whatever else you haven't even considered is at the forefront of your mind.  You have no way of knowing the outcome or if the information you have learned will make any difference, all you can do is just close your eyes and pray you make it through.

Mommy bloggers, Join me @ Top Mommy Blogs

Avoidance

It's 10:15 on Sunday night and I am sitting by my desk at home.  It is the one night a week I allow myself to sleep at home when Sonzee goes inpatient, specifically because it is Sunday night.  Not much happens on a Sunday night at the hospital, so it is "safe" to let Sam stay.  I only sent one reminder text to have him make sure the nurses wore their masks when they changed the tubing on her central line, so I think I am doing well.  The washing machine and dryer are running their cycles, there are lullabies playing in the kids rooms, and everything is calm; except I have already stopped myself twice after I swore I heard Sonzee's seizure sounds and I felt my stomach fall. 

This happens every Sunday that she is inpatient and I sleep at home.  I don't understand why my mind cannot take even a few hours off.  Once I hear the sound, the panic fills my body and it takes so long for me to talk myself down.  My thoughts start to bounce all over the place.  I sent Sam a text and of course she's snoring away with some soft music playing in the background, calm as can be, so that should give me some comfort.  Yet I feel like it is never really about the "seizure sound" when she isn't around.

The "seizure sound" is merely a lightning bolt that matches the internal struggle of chaos I feel over every admission she undergoes.  Most probably because they are never straight forward simple admissions.  They are always weighted and involve "small" but really massive changes.  Her admissions are the times I am unable to ignore the medical complexities that are very much a part of her daily life.  I have no choice but to actually face reality when she is in the hospital, and I would much prefer to stick on my smile and say "she's okay", "she's Sonzee", or some other simple pacifying phrase.  I dislike the nagging panicky feeling that accompany the majority of the situations with her life, and I really dislike when there is no way to avoid dealing with them.

Mommy bloggers, Join me @ Top Mommy Blogs

That one time...

I am not the most comfortable when it comes to direct sales, it makes me uncomfortable to send personal messages on Facebook, send texts on my phone and put myself out there, yet I became a Younique consultant over the summer.  Truthfully it was really just because I wanted a discount on the makeup products I was going to be buying anyway.  My sister thought it would be fun to do live videos on Facebook, and we started off doing them semi often, but then life continued to happen and we really haven't been doing any.  They are honestly fun to do together and we have a good laugh or two, which is really the entire point, neither of us really emphasized the selling component of the makeup, but if it happened, it's a perk.  Then about 3 weeks ago a friend of mine who has purchased mascara from me told me about a vendor fair that was going to be taking place yesterday, and for some reason I said "This sounds like a great idea".

Over the last two weeks a lot has been loaded on our plate in regards to the direction of Sonzee's care.  It seemed as if things were unknown and up in the air for so long and then all of a sudden the logistics came together, yet mentally nothing is actually cohesive.  I would be lying if I said everything was surprise, yet I would also be lying if I said everything was not.  While some of what lays ahead are based on the recent situation where we became aware of just how fragile her bones actually are, the other things are based off of conversations and care conferences that have been occurring for months, and topics that have been discussed for literally years.  In addition to everything that is going to occur she has been sick and missed an entire week of school, and my emotions and thoughts are really all over the place.

As I sat in the room yesterday with various vendors, it was only fitting that the makeup counter from Nordstrom was placed across from me one table over, their setup taking up two long tables.  Women who have clearly done these sort of events before.  Women who brought those fancy makeup chairs and wore the makeup brush aprons.  I wanted to leave the minute they began to set up their table.  After all, it was the first night of Hanukkah, I was missing attending the candle lighting with my family, and we only have 3 nights of Hanukkah as a unit before Sonzee and I fly solo on the 8th floor of PCH for g-d knows how long.  I felt guilty I said yes to this event, I felt angry that I didn't stand a chance at selling anything when I was missing out on crucial family time.  I felt upset and scared about everything that is coming our way.  So there was that one time that I sat at my first vendor event, wondering what the heck I was doing there in the first place, in front of complete strangers and my close friend and cried.  And then I wiped away my tears, acknowledged that it wasn't about the vendor event, made some friends, and even made a sale.

Mommy bloggers, Join me @ Top Mommy Blogs

Anticipation

Last Thursday I wrote a message to one of Sonzee's doctors after we had finished the last of two important appointments we had last week.  Every time my hospital app sent me a notification I was hoping it was her, but each time it was not.  I don't know what kept me from sending her a follow up message to check if she received the first one, but I just did not.  Maybe it was that I knew she would be handling things behind the scenes and eventually get back to me, or maybe it was because I didn't really want to hear what she was going to say.  Either way I let things go.

This morning Sam handed me the phone and it was Sonzee's doctor's nurse.  I knew it was her before she told me it was her just by her voice when she said "hello".  I listened to everything she said but despite my participation in the conversation my mind was 100 miles away attempting to process everything that is coming our way.  I do not know if it is even anything I will fully be able to process until I get to play the "hindsight" card 6 months from now.  If I let myself start to accept these feelings I immediately get sick, so I have been doing my best to just push it all away.  I honestly do not know if that is smart, and irregardless it is working less and less.

I spent half of my day yesterday either successful with my endeavor to ignore my emotions and the other half warding off the anxiety attacks that kept occurring.  I know change is inevitable when it comes to potentially improving Sonzee's quality of life, but the risks that accompany the potential for success are sometimes scary to justify, yet necessary to face.  If only that crystal ball could give us a sneak peak at the future and allow us a cheat at knowing how things will unfold.  I know that is not how this whole game of life works, but oh how I wish it were.

Mommy bloggers, Join me @ Top Mommy Blogs

Mommy-ing

Sonzee's baby brother turned 4 months old last week, and I wish I could say I am enjoying every minute of the experience, but that would not be the complete truth.  After you have a child following your child who falls under the category of "rare" it becomes challenging to accept the "typical atypical" baby behaviors for what they are, and not for what they might be.  So here I find myself sitting at my computer watching videos of my first daughter when she was 4-5 months old after spending the entire day sending videos of my son to his pediatrician, two good friends, and panicking to Sam that things are not right.  

It was on my 7th video of watching my oldest doing everything similar to her youngest brother, yet vocalizing significantly less, that I wanted to cry.  I sent two different but similar texts, one said "I want to go back to being that mom", the other continued to say "...the mom you sadly never got to be and the one I miss being.  The one where her baby does everything [Sonzee's brother] does and even more questionable movements but the mom who had zero [expletive] clue about rare".  Then the tears could not help themselves, because this is just too much to keep inside.  This is not how it should be.  

No one should know raising a child with CDKL5.  I have always been grateful Sonzee was baby #4, I got to experience my naive mommy-ing moments.  The negative is that I am aware of how my mommy-ing was different, I know the type of mommy-ing I am missing.  Despite my son's congenital heart defect, there was nothing that prepared me for the situations CDKL5 has brought to the table.  I wish I could go back to being the type of neurotic mom I was with my first, because CDKL5 has brought me to an entirely different level.  

Every day I wake up and tell myself that my son "is not seizing", "he makes eye contact", "he has an adorable laugh", "he smiles at everyone and everything", and "he is fine".  But then there is a picture posted to Facebook of another child his age doing something he is not that I did not even consider he should be, or there is a momentary flashback of Sonzee at his age doing the same "weird" movement, and the panic washes over me in an unstoppable manner.  There is no rationalizing with me, or convincing me otherwise, because I am sitting here waiting for the shoe to drop.  I am so confused between my actual gut feeling, nerves, and the potential to journey down a similar path of Sonzee's with another child that it makes me nauseous.  There is something to be said about the carefree first-time mom of a typical child, the one I will not ever be again, and sadly, the one I never realized until now, I once was.

Mommy bloggers, Join me @ Top Mommy Blogs

It's not just me...

Our lives forever changed when our Sonzee bear entered into this world.  It wasn't just mine and Sam's, it was also her two sisters and one brother who became immersed in a world of medical jargon, hospitalizations, and talk that is not exactly suitable for children.  They (as most children do) adapted quickly to our normal and made us as parents even more proud than we knew was possible as we watched them interact and include Sonzee in their sibling activities.  No matter what though, it never was the older sibling experience that they would have asked for.  Sonzee's oldest sister wanted (and still wants) nothing more than to hold her and walk around, or hold her hand and help her walk, or get on all fours and chase her around.  All of these experiences have just not been possible, and while sad, our oldest as resilient as anything, has made the best out of the situation.

When our oldest found out we were expecting this time she was so excited, I was so excited at the hope of providing her a new healthy sibling that she could tote around and interact with in a more typical manner.  Apprehensive but optimistic we answered her with "g-d willingly yes", and "hopefully that will be the case", as she asked if she would be able to do all the things she isn't able to with Sonzee.  Fast forward to 3am on the morning her baby brother was born.  She was too tired to sleep once she woke up and found our baby sitter in our house and so when Sam went home to grab some items the first question he was met with was, "Does baby have CDKL5?"

We did a screening during our pregnancy which indicated at 97% her baby brother does not have CDKL5, so Sam told her g-d willingly no.  I don't think I mentioned to anyone that our oldest asked that question because I was honestly so heartbroken about it.  I wasn't heartbroken that she was concerned or that she asked in general, I was heart broken because with her asking that question it showed me just how impacted she has been by her sisters diagnosis.  In her almost 8 year old way, she let us know she too is scared of her baby brother not being typical and or healthy.  I honestly can't and don't blame her, as a parent I am petrified of anything being "off" with this little dude.  It is just part of the everlasting scarring that is brought into a family once they become a rare statistic.

As my oldest holds the baby and he makes random, jerking movements more than once she has either stated "that looks like a seizure ema", or "is that a seizure".  I have to admit my heart skips a beat each time she mentions it, yet attribute it to any potential denial or overt confidence in my gut, but I assure her that "babies do weird things".  I am continually talking myself off the proverbial ledge of panic attacks, and have managed to have only 1.5 in his 12 days of life, I will take that as a success.  Thankfully our pediatrician understands and is quick to reply to my messages of panic.  I think it is going to take us all some time to accept that our little guy is (appearing) healthy and (g-d willingly) typical.  While there is some comfort that it is not just me, I so wish it wasn't my 7 year old who is laced with this same burden.

Mommy bloggers, Join me @ Top Mommy Blogs

Adjusting...

It has been a week since we brought home our new little man.  A week of adjustments for Sonzee and for our parenting of her.  She has been receiving extra love while in and out of the Ryan House and we couldn't be more thankful for having such a facility to help us care for her.  Her seizures have continued to be atrocious and I have already sat on the floor breastfeeding a newborn while consoling her and simultaneously crying.  Honestly the weight of it all at times is a bit much.  I have found myself wondering "why her?" and "why us?" more often than not.  

I know this newborn stage will fly by for our little man and I am torn on wanting to cherish and pause every second of it all and wanting it to fly by to be a bit more manageable for myself.  My heart is in a constant battle with itself bursting with joy and sadness literally in the same seconds.  Watching little man perform a simple task of moving his eyes in a way that Sonzee never did, focusing on my face with the blank newborn look of curiosity, another thing Sonzee never did.  All these small little things that he is doing that had me on edge with Sonzee because "something just wasn't right".  My heart simply hurts for her, for what she must endure, for what she doesn't get to do, for what her siblings won't have with her, for what I can't change or fix, for what we missed out on together.

I know the next couple of weeks will involve a lot of tears, both happy and sad, as we learn how to balance our "new normal".  I know it will be filled with a multitude of smiles and some stings to the heart.  I know it will be filled with a mixture of doubt and worry, deep breaths, and confidence that things will work out positively as I slowly learn to overcome the fears brought on by having a newborn turn out to be a statistic.  I know this part of our journey is going to be filled with difficulties, different trials and errors, and a good portion of mommy guilt...but then I have to ask myself, what journey isn't?

Mommy bloggers, Join me @ Top Mommy Blogs

The evolving role of Mother's Day

From the time I was a little girl I have wanted to be a mom.  I couldn't wait to grow up, get married, and have a baby of my own.  When Sam and I first got married I (naively) thought that it would happen just as I had dreamt.  The first 9 months of our marriage turned out differently than I anticipated as month after month I cried never seeing one positive pregnancy test.  In May 2009 when Mother's Day came around I was so overwhelmingly excited for my friends who had been or would shortly be blessed with their new titles of mom, but equally heartbroken it wasn't my turn.  Sam bought me my first Mother's Day card with words of encouragement, but my heart was shattered.  Within weeks of that "first" Mother's Day I found out that my dream would be coming true.

In 2010 I was beyond fortunate to celebrate Mother's Day as a mom of a beautiful baby girl, my dream finally complete.  In 2011, I was not only a mom to Laeya, but I was pregnant with our second child.  I was so beyond excited to celebrate that day, but my heart broke for those who were still struggling to build their families.  I felt so fortunate to be where I was.  By 2014 I would celebrate Mother's Day as a mom of three, and by 2015, a mom of four.  The day always amazing,  but that year was my first time with the title of "special needs mom".  At the time that specific title was new and had little meaning to me, but as the years continue on the uniqueness of that title plays a bigger role.

By the end of the summer of 2016 Sam and I were surprised when we found out we were expecting baby #5.  We were surrounded by fear and uncertainty rather than the typical burst of excitement.  We were scared and unsure. What if the baby wasn't typical? What if the baby had special needs?  What would people think that we were chancing fate?  By the beginning of October those fears were unnecessary as we didn't see or hear a heartbeat, we experienced our first miscarriage.  We were both "at peace" not being faced with needing to make challenging testing decisions or playing the "what would we do if" game, and we felt thankful that G-d intervened how he felt necessary.

Today is Mother's Day 2017.  I am so honored to celebrate being a mom to four amazing children I have been fortunate to meet, yet today is the first day my heart hurts in a different way.  Based on my previous pregnancy experiences and my due dates, I would be holding or about to be holding baby #5.  I wonder if my son would have a brother or if he would still be the prince of the castle.  I wonder how I would manage being a mom to Sonzee and a baby, and I wonder how amazing it would be for Laeya to be the biggest sister of four.  I think about how fortunate I am that today I can snuggle my four awesome children because there are so many beautiful mom's I know who are unable to do that, but today is the first day I have given this topic enough thought to be sad the number isn't five.

Mother's Day to me isn't about being spoiled or wanting to be appreciated more than any other day.  It isn't about what gifts I get or if Sam was able to get to the store last minute to pick me up a card (that I honestly could live without).  For me, Mother's Day is about honoring what it is to be a mom and learning how to adapt to the various titles, curve balls, and ever changing roles that come with being a mother.  Today is one of those reminders of how mothering can be done in so many different and beautiful ways.  So if you are a pregnant mom, a mom to a child you didn't birth, or one you had to or have to share with someone else, a physically living child, a healthy child, a sick child, a child you never got to hold in your arms, or to a child you are no longer able to hold in your arms, today and every day you should be honored to be a mother, and I wish you the happiest of Mother's Days.

Mommy bloggers, Join me @ Top Mommy Blogs

Looking back on videos

I gave myself a pat on the back this week after I was up in the middle of the night and looking back over the past year’s video posts that I have made on Sonzee's Facebook page.  The pat came because the videos that I had posted were ones that only brought a huge smile to my face.  So many, if not all of them included smiles, Sonzee-stone achievements, and happy times.  While I reminded myself that there could have easily been videos posted that focused on the more negative days, those were not the ones I was watching.  The problem with seeing these videos is that it brought sadness because it made me realize how much Sonzee has lost over the past year.  

So many of those achievements in the videos she is no longer able or willing to do.  She does not smile or laugh without great efforts, and to be honest when she does either of those, they are not for lengthy periods of time.  It always takes looking back on pictures and videos to realize how much regression she has actually had.  I dislike the term regression, especially because one of the main "positive selling points" of CDKL5 is that the mutation itself does not result in regression, however, the seizures do.

Living this life has and always will be filled with double edged swords.  While I am grateful for having those memories documented and ready for me to watch when she is having an off day, it can be a complete punch to the gut as I am reminded of what she once could do.  I wish her seizures would be a little more forgiving and happen less often.  I must admit that considering the amount and severity of them on a daily basis, it is 100% astounding that she can open her eyes and be awake, much less bounce in her bouncer or try to hold her head up.  I will definitely continue to celebrate each smile and moment she shares with us because it is a continuous reminder that each of these moments is so precious, may not ever happen again, and even if through the tears, they all bring such great pride and a huge smile to my face. 

Mommy bloggers, Join me @ Top Mommy Blogs

Uncertainty...

It has taken about two weeks and endless hours of multiple people's lives (that no one will get back), but we are finally going to be able to give Sonzee her first dose of her new seizure medication, Zonisamide tonight.  While we try not to do too many changes at once, it is always inevitable that certain things will overlap and in this case it is all medication based, so hopefully things won't go completely wonky.

In a sense the comical insurance ordeal played out in our favor as it gave us time to do a slower wean of her Sabril and as of yesterday she was given her last dose of gabapentin.  I am unsure when the build up of these drugs will fully be out of her system, or for Sabril to be at the current dosing level, but these times are always a bit nerve wracking for us.  The gabapentin we are 100% sure did nothing for her in any area so I am just looking forward to seeing what, if any, side effects she might have been having that we didn't really notice but are now will no longer be bothering her (i.e. Dizziness, blurred vision, headaches, etc.).  As far as Sabril goes, it is not an effective treatment for her current seizure type (I call it the seizure variety platter as it displays itself in various forms over a 5-7 minute time period), but we are unsure if it is still keeping the nasty spasms at bay and responsible for her EEG background being clean.  To say we are petrified about being off that medication is quite an understatement, but we also do not want her on more than two seizure medications at a time and keppra is effective at keeping another form of her seizures away, so it is what it is.  

It is always trial and error, and sadly it is Sonzee who has to be the house Guinea pig.  At this point I am eager to see how she reacts to the zonisamide and am hopeful it will treat her current seizure activity.  I just pray (as usual) that the changes we are making just make tiny ripples in the water, that we don't rock the boat too much, and most importantly that is does not capsize.

Mommy bloggers, Join me @ Top Mommy Blogs

Unexpected excitement

It does not cease to amaze me that one minute I can be mourning parts of the life we now lead and then a mere 60 seconds later I can be so excited about something I never imagined myself being elated over, such as purchasing new medical equipment.  Maybe it is because in my mind I had always pictured Sonzee in most of the equipment we have already gotten for her, or maybe it is because I always anticipated it would be in her cards.  Whatever the reason I will embrace it and admit aloud how I am extremely excited (and quite ready) to be on the mission of ordering her wheelchair.

I have spent hours online looking at what I felt would be the best fit for her.  I of course want her to have all the bells and whistles and for me I cannot emphasize how excited I am at the prospect of having specific areas to place her rescue medications, feeding supplies, and portable oxygen concentrator.  Those items can be extremely heavy and the stroller does not provide adequate storage opportunities.  I am looking forward to her having an adequate tray for toys while we are on the go and proper support for her body because it has to be frustrating for her when she is tired and her head flops to the side.

I believe we have settled on the R82 Stingray tilt in space and I am so excited!  It looks like a stroller (this might be annoying as she gets older), pushes like a stroller, and as far as features go it has a million.  My favorite is the 180 degree seat turning option so she can face me or face outwards.  It can be taken apart and folded to be stored and will fit in the back of the mini van folded.  I never anticipated this moment to be filled with actual joy and eagerness, maybe that will change when it arrives, but I am pretty sure based on my feelings right now that I am just ready and have accepted this portion of the journey. Now to see what color she chooses!

Mommy bloggers, Join me @ Top Mommy Blogs

Will it go away?

We spent two days this week at children's hospital of Colorado because they have a center of excellence for Rett Syndrome, CDKL5, and FOXG1.  This was our second time taking Sonzee and I am glad we went.  We learned some new facts that we had not known prior to this visit, for example, Sonzee has a 5% chance of being seizure free in her life (but realistically it's less than 1%), and if she learns to sit by age 3 she will be more likely to walk.  Neither is to say she couldn't ever be seizure free or learn walk even if she isn't sitting within the year or a miracle happens with her seizure control, but the odds begin to stack against her as time goes on.  Luckily for all of us I never planned on seizure freedom for life for her and my main goal is only for her to sit, so even if it happens when she is 10 that would be okay by me.

Parts of this life are getting more challenging to process.  Everywhere I look I see typical 2 year olds, and I can't stop wondering what Sonzee would be like.  Even looking at the other children with CDKL5 mutations I can't help but feel like Sonzee was given the short end of the stick.  I wish she was at least happy and smiley, but she's constantly miserable and in pain.  I'm so worn down from it.  It's one thing to have a child not complete milestones, that in and of itself is devastating, but tack on a stomach with dismotility, feeding into the intestines, constant GI pains, and unhappiness, and that's the life of Sonzee.   

I'm having a hard time with the tube being gone from her face and it has only been 9 hours.  It was my safety net while out in public, it was how I coped with her not being a typical toddler...now it's hidden.  It will only be revealed by the question of "how old is your baby?"...I keep playing with the blue stroller=wheelchair placard I have to make sure it's clearly visible to strangers. I keep placing her feeding tube extension in a location that is noticeable.  I don't like this.  I feel like too much is changing, but not anything is changing and it all makes me feel like things are spiraling out of control.  I'm feeling like I have completely failed her in all areas and I wonder if that feeling will ever really go away...

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

A decision already made...

I wanted to count the number of posts that I have written that involved decision-making, and then I realized there were far too many to count.  The majority of our situations involve making choices between two unfavorable options, yet deciding which will hopefully be the least disruptive to whatever balance we have currently stumbled upon.  I know deep down the results of our choices are not based on whether we made the right or wrong choice, but it never makes me feel any better when the outcome is not what we had hoped.

Here we are again at our friendly little fork in the road.  This one both Sam and myself saw coming, so we have talked about what we think would be best for some time now.  However, discussing the potential scenarios and actually living them are entirely different.  I always think I am prepared until the day comes that the doctor looks at us and says, "I feel comfortable and I think it is time that we go ahead with XYZ, now you and Sam have to make the final decision".  I do not know why all of my confidence flies out of the window and the panic attack sets in at that moment, but it has happened every time without fail.

When Sonzee was placed on intestinal feeds back in May, it was to save her life.  Thankfully it did the job, and so making the decision to have a tube come out of her nose and go through her body was not even a smidgen challenging.  Placing a tube on her face went against everything I had wanted for her, knowing how much it would bother her, knowing that it can cause feeding difficulties in the long run, knowing that it would be an attention grabber while she was out in public and cause excessive staring.  She has lived with a tube on her face for 6 months, and while it is not ideal, we are all used to it.  Truth be told having a blinking sign indicating that I am aware something is wrong with my child actually makes me feel comforted while we are out in public.  

Today we were told that she will not be starting stomach feeding in the foreseeable future and so her GI team feels comfortable with moving the tube off her face and changing her stomach tube to a stomach/intestinal tube.  It is not to say her stomach will not work ever, but CDKL5 has not been kind to her GI system.  We have wanted this tube relocated for so long; I am unsure why I am nauseous at this thought.  I know there is a part of me that is sad that her stomach was not able to start working again by this point.  I know there is a part of me that worries once we do this, it never will.  I know there is a part of me that fears this "outpatient" procedure will go completely wrong, despite the fact that "complications are rare AND it is outpatient".  I know there is a part of me that worries this will only aggravate her stomach more, causing her more pain and discomfort and constant venting (releasing the contents of the stomach so that they don't just sit there).  I know I am afraid of tipping the boat since it has been rocking already for 6 weeks and we are finally getting our happy bear back.  What I think is my biggest challenge right now is knowing what our answer is, but fearing the outcome.

Mommy bloggers, Join me @ Top Mommy Blogs

Change

It is close to midnight and my eyes are so tired that it is a constant battle to keep them open.  It is getting to the point that the blurry vision is getting more challenging to blink away.  Each blink clears them up a bit, but then within a millisecond, they are fighting the weight again and I have to blink multiple times and rub them to be able to focus.  Now comes the million dollar question, Why am I still awake?

Since adulthood, I have never been the best sleeper.  Scratch that, since I became a mom I have honestly lost all capabilities of going to sleep, and forget staying asleep.  We can casually blame it on nerves, worrying, the fact that nighttime is the only time I can get things done, and the fun fact that 50% of my children prefer to sneak into my bed multiple times throughout the night, steal the blankets, take over my space, and hope I do not notice their presence.  If I am honest, those are all fancy excuses for the fact that nighttime is the time I get most of my inspiration in terms of my blog posts.  It is the time I am most in touch with my emotions, the time I allow myself to reflect on the day, and the time I am able to decompress and process everything that is going on within my life and around me.

Tonight as I sat in front of the computer screen trying to figure out what I wanted to share, I started to think about the events of this past week.  In a short summary our house air conditioner broke on Sunday, our cars compressor melted (YES IT MELTED) on Monday, and our brand new car's (that we purchased Tuesday) air conditioner fizzled out on Wednesday.  Looking back at the past 4 days, I am left with my usual mixture of emotions.  

• Thankful that if something had to happen it was to inanimate objects and not Sonzee or one of our other children.  
• Amazed that if we did not have questionable luck we really would not have any luck.  (<-which reminds me, we REALLY need to start playing the lottery, because our chances of winning are surely MORE than the amount of rare things that can occur to one family).  
• Numb.
• Confused by how I feel about it all.

When I think about me prior to Sonzee, I think of how my reaction to this past week of events would have been very different.  Maybe better in some ways, but not in others.  I think how I probably would have been so excited that Sam actually went out and bought me a NEW 2016 vehicle, not a used one.  If you knew Sam, this is HUGE.  Yet, I am not excited I am honestly indifferent.  I am angry with myself for not doing a happy dance down the street, but the truth is, I am incapable of getting excited about such an "insignificant" thing.  It is a car.  I think how "not normal" it is that when replaying the events aloud I actually said, "Well, if bad things had to happen at least it wasn't Sonzee dying".  (<-because that is a normal parent thought)  I think how I might have gotten more mad prior to Sonze, but overall, I just do not care.  

To be honest, what bothers me more than anything else is that I am numb.  I miss feeling more normal.  I think how I am just a shell of the person I once was.  I have some parts of me that are the same, but a huge part of me is no longer here.  I wonder if it will ever return.  I keep wondering if I am supposed to go back to the old me, or was the old me not who am I supposed to be?  Is one of my tasks simply to be able to overcome all these obstacles AND find my way back to myself, or am I supposed to become something better?  Just to give you a sneak peek into the workings of my tired brain, I will leave you with three quotes that represent my current thoughts...

Mommy bloggers, Join me @ Top Mommy Blogs