Friday, November 16, 2018


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


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


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


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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