Telling guilt

During our last grief support group, we were asked if we could say something to our guilt what would we say.  I couldn't really think of my answer on the spot because so many thoughts flooded my mind like they were part of some giant tsunami.  Guilt in regards to Sonzee has so many dimensions that it is even hard to pinpoint which guilt I would be referencing.  Part of me wondered if this was one of those times that I was supposed to say what I thought someone wanted to hear?  I don't remember if I ever ended up giving an answer on Monday, but yesterday when I was watching the throwback video the question popped back into my mind.  My answer at that moment was I would tell guilt that I did one hell of a job making that little girl have the best life she could possibly have.  The words bring tears running down my cheeks because even though I know to my core that it's the truth, the shadow of guilt literally taunts me as it says "but it wasn't good enough".

There is always this constant war going on within my brain.  Guilt continuously pops into all of my memories and attempts to convince me that situations that were completely out of my control were somehow meant for me to control.  There are times when I almost cave into listening to it, but looking at the physical proof of pictures and videos brings me back to the truth.  I can see that we at least always tried our best.  At the very least we gave it our all, and we gave her whatever our best was for that day.  There is no such thing as being a perfect parent, and there were times I was exhausted and I am sure she could tell, but today I would still tell guilt it has no place.

The definition of guilt as a noun is the feeling of having done wrong or failed in an obligation.  I will forever wish her life was different.  I will forever have hoped that she didn't have to endure what she did for 4 years 11 months and 23 days.  I will forever dream that her siblings didn't have to learn about medical complexities, hospitalizations, childhood death, and grieving.  I will forever wonder if there was some way we could have made her life easier or better for her.  But overall, today, based on the evidence I continue to come across, I am confident we didn't fail her in any manner.  So today I will tell guilt,  "today is not your day, and tomorrow isn't looking good for you either."

Wrong

Yesterday was a big day in our house as we celebrated Sonzee's baby brother's first birthday (officially it is Wednesday, although I am still in denial how that much time has flown by already), and her biggest brother had his final championship game for ice hockey (that we did not anticipate his team qualifying for).  It was a jam packed day, but filled will the typical chaos that comes with life of multiple kids; except for the fact that overshadowing it all was that Sonzee has been sick since Friday with the medically complex version of a common cold and she spent the entire weekend in her room, missing it all.

The saddest part was not even the fact that she was missing from the festivities or that she won't be in any of the pictures from the day, or that she spent the entire weekend rotating pain/fever medications and having constant seizures (which is not her typical "sick routine").  The saddest and worst part of the entire situation was that, I have come to expect this in our life.  The disappointment and sting was not as strong as it once was.  This has happened so many times, it is now part of our typical.  I was just beyond thankful this was one of the Sunday's she happened to have her nurse, so she could stay home and in her room to rest quietly and neither Sam or myself had to miss out on the festivities.  Despite the normalcy of the situation lies still a blanket of guilt.

Guilt that it is okay for us to go on our day without her present.  Guilt that we are used to it.  Guilt that there was relief in having her nurse care for her.  Guilt that life continued to go on without her being there with us in the same room.  Guilt that I didn't cry over the situation.  Guilt that it was better for her to spend the day in her room and not with the rest of us.  Guilt that this is her life.  Guilt that there is nothing we can really do to help her.  There is just so much guilt.

I was partially proud of myself for not letting the situation get the best of me, but partially upset that I didn't.  It continues to be a common recurrence, especially as she gets older and each time I am unsure what reaction is right.  I know nothing about our life is really normal, so there is "not really a right"...but it all seems to wrong.

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Dear parents

Dear parents who have a child with a life limiting diagnosis,

I know you are afraid.  You dreamt about this child long before he or she was born, and those dreams did not involve a rare disorder.  Now you have found yourself parenting in uncharted waters, unsure of how your child's particular story is going to end but knowing in the deep recesses of your soul it most likely will end before yours.  Not everyone will understand, not even every parent who has a child with the same diagnosis of yours, but that is okay, your fears are real, and the thoughts are okay.

I know this is scary.  Each day you wake up wondering if today will be your child’s first time completing a long overdue inch-stone, or the last time he or she will make an attempt.  You do everything you can throughout the day to ensure that if tomorrow does not occur you did the best that you could, hoping that it will maybe prevent the inevitable guilt you will most likely feel when eventually tomorrow does not come.  When the day comes to a close you secretly wonder if this will be your last time you will both take part in their bedtime routine.  You kiss your child goodnight and give an extra squeeze, you just never know.

I know this is lonely.  The subject remains taboo.  You fight within yourself whenever one of these negative thoughts pop into your mind.  Others will tell you to "not to think like this" and or that "it is not healthy", so you are left to wonder if you are the only one who thinks about these things.  You are afraid to talk about death and your child in the same sentence openly, not wanting to be silenced by those who might disagree with your feelings or be misunderstood by those who really have no idea.  You feel a sense of entrapment, suffocation, and uncertainty.

I know this is your life.  So, do your best to make the most of every situation.  If you have other children, then these thoughts in the back of your mind will inevitably make you a better parent.  I know you are not alone, because I am someone who gets it, I am someone who thinks these thoughts, I am someone who lives this journey along with you, and I am someone who will be here when your reality becomes real.

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A new form of guilt....

Within the next 2 weeks or so our little bear is going to become a big sister.  I am eager and excited about this new addition to our family, yet I have not even packed my bag.  (Full disclosure, I packed for Sonzee while in labor and running out the door).  I really am looking forward to everything that comes with having a newborn baby, but despite the typical massive amount of pregnancy hormones circulating within my body,  there is a cloud of guilt and sadness hanging over me.  I do not want to assume everyone who follows Sonya's Story understands the needs of a child like our dear Sonzee bear.  I do not want to assume everyone knows how much care she requires.  I try not to mention the sleepless nights encountered due to her constant alarming pulse oximeter letting me know her heartrate has skyrocketted (or on some occasions her oxygen has plumetted) and she is having another seizure.  She is dependent on every level.  She is unable to be left alone, she has to be buckled into swings and bouncers at all times.  She is unable to be placed on the ground in a seated position "for just one minute" so something can be grabbed.  She is unable to feed herself, and in fact in her case, her food bypasses her stomach and goes directly into her intestines so she doesn't eat in the typical fashion.  Her tube feedings are prepared in advanced and placed in the fridge and refilled periodically throughout the day and the night due to a continuous 20 hour a day feed.   She requires medications, patching, and various position changes throughout the day on top of the daily needs of a child.  Her needs are that of a newborn baby, in all ways, literally.   

It was decided shortly after we found out I was pregnant that we would need extra help around baby's arrival.  When you have a Sonzee bear, you can't rely on family to take care of her needs, it wouldn't be fair with everything they have going on.  Thankfully here in Phoenix we have a place I have mentioned previously called, The Ryan House, where you can send your child if he/she is diagnosed with a "life limiting" journey.  They give you 28 days a year where you can send your child and he/she can be surrounded by nurses and volunteers in a loving/caring environment who will give your child the 24 hour care required to provide some respite to families.  Since they fill up quickly, back in May I called up and booked Sonzee for the last week of November, a weekend at home, and then the first week of December.  We had our phone call with the head nurse Wednesday, we updated her medication list, and we are now down to her first check-in in just 10 days, and my heart is breaking.

I realize my limitations of being able to care for 3 typical older children, a Sonzee, and a newborn baby simultaneously in the first couple of weeks.  I know deep down this is the best place for her to ensure she receives the care she deserves and requires and all of our other children do as well.  We are able to take her in and out of the Ryan House as long as she returns to sleep.  Her nurses are able to be with her on their regular schedules.  She is literally in the building next to the hospital I will be delivering the baby at.  There is really nothing negative about the setup, except the amount of guilt I feel over having to place one of my children outside of my house to welcome a new one.  I am not the only person to have a special needs child, other children, and be welcoming a new baby...I feel like I should be able to handle it all.

For 2 years and 8 months my older children have made sacrifices because of their sister.  They have had to endure experiences no children should ever have to, and they have done it with amazing stride.  They had no choice, none of us had any choice when it came to Sonzee's diagnosis, and I have not stopped feeling an immence amount of guilt because of it all.  Yet as the days get closer to welcoming this new little person, I am scared of how it will all play out.  This is different because Sam and I made a choice to have another child despite having a Sonzee and 3 other children and with it comes a whole new form of guilt.


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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...

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Complicated expectations

Often times my posts are written in my head while I am out and about as the random thoughts filter through my mind.  Some of the time I actually find myself smirking realizing all of the craziness that is occurring in my head during that time.  It is completely baffling to me how one minute I am "worried" about Sonzee's developmental milestone achievement and then a moment later her milestones are the most distant thoughts as I am overwhelmed with happiness that she is just breathing and we aren't at the top of the coaster looking at the end of the track.

This honestly happens multiple times throughout my day.  Thoughts that contradict themselves bombard my brain and confuse me to the nth degree.  To give it a visual representation, imagine that you are standing in a dark room and there are thousands of words flying at you from all angles.  Some of the words are huge, others are tiny, but all of them are white and bright.  They go by so quickly it can be hard to make out what they say.  It makes processing what I really feel an extremely daunting task.  I have to yell at myself to focus if I want to make any sense out of the situation.  Then I start to dissect my thoughts.  "Should I think this?"  "Shouldn't I just be happy with where things are?"  "There are other children worse off.  She has been worse off."  Etc. Etc. Etc.

It is when things are seemingly stable that I am less afraid to admit to myself that I wish my 20 month old would be able to sit on her own.  I know I am allowed to acknowledge this feeling, and I know it is acceptable, but I feel petty a lot of the time for caring about her accomplishing milestones.  For each thought that pops into my mind, its counterpart is right there by its side.  "I wish she would not succumb to the typical stereotypies and sensory issues of having a CDKL5 disorder, such as hand chewing."  (That really is so benign, why does it bother me?)  "I wish she would bear weight on her legs", (they are getting stronger).  "I wish she would notice me when I look at her face", (but if I make noise she does).  "I wish she would show her siblings that she loves them", (On occasions when our oldest plays with her arms and talks to her excitedly, Sonzee gives her the biggest grin).  My mind is constantly playing devil’s advocate with itself.  The reality of this life and the guilt for feeling unsatisfied at times are so intertwined with one another.

I want her to just be normal, but I want her to be who she is meant to be.  I really do not have any specific expectations when it comes to what Sonzee will achieve in her lifetime.  We meet every 6 months to create goals for her and most of the time we just keep them the same because they have not been met.  I have hopes and dreams galore, but who knows when or if they will be accomplished.  I do not want her to ever feel like she has let me down nor do I want to place unnecessary pressure on her, and I want what any parent wants from their child...for her to grow up and be happy.  It is annoying to me that every single aspect of her life has to be so complicated.  

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Guilt.

I watched another great episode of the new show "Speechless" on ABC last night.  Regardless if your child has special needs, I highly recommend the show because it is really funny.  Last nights episode really resonated with me because it was about the guilt a family might feel while participating in an event when their special needs child is not there or unable to do so.  (Even if your child does not have special needs I think feeling guilt as a parent is quite common).

I remember during one of Sonzee's hospitalizations last spring that it was during the Jewish holiday of Purim.  For those of you who have never heard of this holiday, I will quickly define it as a Jewish Hallowen.  Children dress up in costumes, there is a party, a carnival, face painting, etc.  I debated not going to our synagogues party because I would have to leave Sonzee (guilt), but then I was faced with the reality that as usual, Sonzee's unplanned hospital stay was taking away from the other kids having me (guilt).  The kids wanted me to be there and I wanted to see both of the girls dressed as rainbow dash and our son as spiderman.  So I went.

As I sat in the parking lot of the synagogue I started to cry.  Sonzee wasn't there, we were a broken family as my heart was in 2 different places and it sucked.  This was not the first holiday that our family unit was separated, and I doubt it will be the last, but not matter how many times it will happen, the pain will still be the same.  In the end, we all had a great time (guilt) and I am so glad I was there for the kids, for Sam, for myself.  When I got back to the hospital Sonzee was enjoying her time sleeping away and didn't even notice my absence (a smidgen of guilt faded away).  That did make me feel better, however as a special needs parent there will always be a constant battle between the forces of guilt.

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