Monday, November 26, 2018

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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Monday, November 19, 2018

If only

It was "one of those days" yesterday.  Sonzee's seizures were nonstop, she cried when she wasn't having them, she slept after she had them, she was in visible pain when she was awake, and she was having a very difficult GI day.  All in all, by 5pm I was trying (unsuccessfully) not to cry by my desk and by 6:30pm I was officially over the day.  I managed to get myself under some sort of calm by adding makeup into my shopping cart and posting an epilepsy awareness post; at least the latter makes me feel like I am doing something to help.

It does not feel like it has been that long since I have been in this position.  The one where everything between the last melt down and the one on the horizon becomes too much for me to keep bottled up and eventually I turn into a New Years champagne bottle being opened.  I know this is all just part of the repetitive cycle that comes with the situation, but I hate when it gets to this point.  Within the next 24 hours I will no longer be able to hold in the tears; it is ok, it is time for them to come anyway.  By Thanksgiving I will have be able to smack a smile on my face and almost feel the same behind the scenes, and by next Sunday I will have pulled myself back together to face the next unknown period of time.

If only this was not the reality.  If only things could be easier for her and I did not have to watch her suffer so often.  If only there was a magic potion that could be created to completely fix the damage that has been created and will continue to be by her mutated CDKL5 gene.  If only I could close my eyes, go to sleep, and wake up to a Sonzee who was born with a complete CDKL5 gene.  If only prayers such as the ones I have relied on for the past 3 years 9 months and 8 days could actually come true.  If only. 

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Friday, November 16, 2018

Preparations...continued...

I sat down to write this post last night after the word "preparation" kept running through my mind.  I knew it would be the perfect title for what I anticipated writing, but I also felt like I had used the word before as another blog post title.  Funny enough that only a couple of months after I began blogging in 2015 my first post about preparations was written, and 3 years and 4 months later this post rings eerily true and similar as we embark on another path of uncertainty.

It is a weird experience to keep repeating similar but completely different situations.  The groundhog day effect aura lingers but each challenge, each discussion, and each decision is ultimately independently determined despite the influence of the past.  I find it fascinating that no matter how many times we go around this merry-go-round I am no better off prepared to make any of these life altering decisions.

Every day this week I have been playing out the best case scenario of what could come in my mind.  I am partially proud of myself for (apparently) still having some hope and faith I was not aware I had, and partially annoyed with myself for even attempting to think that things could actually work out in reality how they are in my dreams.  I do not have the stomach to even consider the worst case of these decisions because it is just too much for me to even process.  Too loaded.  Too much guilt.

I just keep telling myself that we are doing what she needs.  We are making our choices based on what we feel is best for her overall quality of life and well being.  We are making our choices with HER best interest at heart, and so to quote myself, "[I] have to trust myself and my knowledge, and pray that I have enough of a foundation to get it right."


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Tuesday, November 13, 2018

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.

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Friday, November 9, 2018

Going away

Since I have become a mom I have never gone away from the kids for long periods of time.  We have gone a night here or there and I think our longest get away was maybe 36 hours.  Since Sonzee has been born leaving all the kids under the care of one person for overnights has happened one time for Sam's 35th birthday.  I get so nervous leaving her with all of her needs that the only comfortable way I can even entertain leaving Sonzee and going away is if she is able to get into the Ryan House.  I have to be on my game as far as preparations for this to work out, so when we knew our long time babysitter was getting married this upcoming weekend, I called Ryan House 6 months ago to book her stay.  Despite calling when booking opened, the soonest I could get her in was Sunday afternoon...we are scheduled to leave Saturday night.

These last few weeks I have been a nervous wreck with everything going on with Sonzee and the thought of going away.  I was nervous about her night at home Saturday night even though we found an amazing day time nurse who was willing to do the night shift.  I was nervous about her drop off going smoothly on Sunday and what if I forgot to tell my sister something important and it was never mentioned to the nurses at Ryan House?  I was so worried over everyone forgetting to pack all of her medications after they gave them to her and I didn't like that I would have no control.  The last couple of days I have been so anxious about going away, I have spoken with Ryan House literally every day asking if someone had cancelled.  Yesterday morning my prayers were answered when they told me we could bring her in today.

It is one thing to leave typical kids with grandparents and aunts/uncles, although even that isn't exactly worry free.  However, when it comes to leaving a special needs child, it is an entirely different situation.  I know everyone who would have watched her would have done it amazingly, but I feel so much better being the one to drop her off and set up her room.  I will be able to give the last minute reminders, discuss all of her medications, make sure they set up the smaller camera over her bed to ensure they don't miss any seizures, and show them all the various seizure types she is having (although she will undoubtedly start a new one while she is there).  I still have the nagging feeling over the thought of going away and leaving the kids at home, but at least I know they are all in great hands.

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Monday, November 5, 2018

Torn

Yesterday was one of those days that was packed to the brim with excitement and events that could take even the most hardened persons breath away.  It was a day where I felt grateful for so many organizations, people, and experiences that our family has come to be blessed with all because of Sonzee.  Yet at the same time, it was one of those days that weighs heavily after all is said and done, the kids are in bed, and I am left sitting alone with my cup of decaf coffee reflecting on the events of the day.  So many organizations have been created for children and their families to simply bring a smile, or give a moment of happiness, and or make them forget for a moment about the chaos, sadness, and real-life experiences they are faced with.

I promise you, they live up to their lofty pursuits, but I am left with a huge knot in my throat and tears in my eyes.  These are organizations that were founded because of a child who gave the founding member(s) inspiration and then passed away.  Maybe not every child who walks through their doors and benefits from the amazing experience will face the same fate, but there is a reason these organizations continue to exist.  My heart hurts tonight for every parent who has had to face the unimaginable, the unthinkable, and literally the most heartbreaking idea conceivable.  Full disclosure, a selfish part of me is overwhelmed with emotion for what I know eventually lays ahead for me yet have no idea of how to prepare for.  Is there even a way to?


It is very surreal that despite watching Sonzee experience multiple seizures a day, the complications she faces with her CDKL5 mutation, and acknowledging that one day we will face the unimaginable, I have not really processed how it will all play out as a reality.  It is the days where I am humbled by those who live their lives making sure that families like ours have as many happy moments as possible that are most difficult.  It is a day like today that was filled with amazing events mixed in with the usual dealings of CDKL5 that I am torn between feeling beyond grateful and beyond upset that this is Sonya's Story.

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Friday, November 2, 2018

Until

I admit that prior to having Sonzee I had no idea that becoming a special needs parent could happen to me.  While I knew anything was possible and working in the special needs field brought it semi close to home, I really did not think it would ever become my home.  Who would have thought those parents of the babies and preschoolers that were my clients back in 2008-2011 would now provide me with a different level of education and support.  I wonder if they worried for me when they knew I was pregnant each time.  I wonder if their hearts broke when one of their friends shared that they were now joining this unique and mighty elite club.

Even if you are told "the odds of" having a baby with XYZ are less than 1% you never expect YOU would become that statistic?  Literally almost daily a new Facebook friend of mine is having a baby.  The vast majority are (thankfully) healthy and amazing babies born to parents who don't seem to have considered what could have occurred.  Maybe they do and they just don't share those fears?  Maybe they really are obvious to rare.  Maybe they know but figure there is no point in worrying?

I will admit there is a little bitterness that occurs within me when I see my friends 3-4 year olds.  It just dawned on me yesterday that Sonzee should be in school with her cousins, sandwiched between their classes and playing with them at recess.  I know she has been 9 months younger and 18 months older than her cousins her whole life, but I did not stop to think about that fact.  It makes a little annoyed that they are all missing out on that experience.  (I know they have other ones, honestly, I don't care, I want the ones that are being missed).

The entire time I was pregnant with Sonzee's youngest brother I was a mess.  He is almost a year and it wasn't until recently that I have started to relax a little.  The fear of rare sneaking up on us again is real and at the forefront of my mind.  In a way I want a repeat because I feel like I missed out on enjoying his infancy.  When I think about how I had no idea about parenting a special needs child before Sonzee the way I do now, I think it was a blessing, and probably the reason no one ever really thinks about what could happen to them until it does?

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Sonzee's Slideshow