Sunday, February 28, 2016

What nightmares are made of

On Friday we arrived at the hospital at 9am to check-in for the bear’s surgery.  Sonzee was visibly upset due to not eating, so Sam was walking around with her while I took care of her admission.  We went up the fourth floor and by 10:30, we were back in the pre-op room.  They took her vitals; she received Osito a tiny red beanie baby bear.  Things were going smoothly and we were just waiting around.  Sonzee had a little stint of spasms around 10:45, and then again around 11:20.  We were told around 11:30 that the surgeon was running behind and it would be at least another hour, so we asked if it would be possible to get some food into her.  After speaking with the anesthesiologist, it was decided we could start her on IV fluids.

It always takes a minimum of three attempts to get into Sonzee’s veins; it is just how it goes.  After multiple attempts, and two nurses, she was finally set up at 12pm.  I made sure multiple times that they were going to administer straight sodium chloride vs the dextrose 5 bag, as she is on the ketogenic diet.  Our neurology team made it clear that even if I tell the nurses about the ketogenic diet, and they act like they understand,  I shouldn’t trust anyone’s word, and so I peaked at the bag myself to ensure it was the correct one.  Around 12:05, they began to administer the fluids.  I was holding Sonzee at this point to attempt to calm her down because she was clearly uncomfortable, but we decided shortly after I took her that it would be better if Sam held her since I just stopped pumping and she could probably still smell breastmilk.

At 12:10pm, she started to cough.  She looked panicked, she was clearly having problems breathing, but I was assured it was nothing, and it was because she was upset.  (She was not that upset to cause this type of coughing).  Another 2 minutes of her coughing goes by and she is now having large amounts of secretions come out of her mouth.  She suctioned her mouth.  I am visibly upset, the nurse is staying right next to us, and she tells Sam to place her on the bed.  He does.  I ask her if we can turn off the IV, and she reassures me it is just water and that this is not due to the IV.  I was doing my best not to be combative, but I made it clear this was not normal behavior, and while I was not arguing to the fact that it was straight water, clearly something was wrong with Sonzee.

Thankfully, an air pocket was found in the IV tube, so the pump began to ring and the nurse was forced to work out the kink.  Over a couple of minutes, the IV was turned off, and she started to calm down, and had less coughing.  Sam decided it was a good time to run downstairs to grab a quick snack as we had not eaten and were waiting for her to be taken back.  He left, the kink was fixed, and the nurse turned the IV pump back on.  Within a couple of seconds her coughing began, I was repeatedly telling the nurse this is not normal, she continued to reassure me, and as a peace offering, decided to put a pulse ox on Sonzee’s foot so we could see the amount of oxygen in her body as well as her heart rate.  After a couple of minutes her oxygen dropped to the 70s, there was foam coming out of Sonzee’s mouth and I am pretty sure I screamed to the nurse, "this is not normal, you need to do something".  I ended up walking out of the room as the oxygen bag was taken out and I am pretty sure the “code blue pre-op room 1” alarm must have sounded because within 1 second there were 20 people standing in and outside her room.  I tried to text Sam and give him a warning that they were taking the oxygen out, but he did not read the text and when he walked through the pre-op doors, all he saw was the chaos.

Everyone was trying to blame her current state on a seizure.  I was adamant this was not a seizure.  I was continuously telling everyone that I was not trying to argue, but while they might be new to Sonya and seizures, I knew this was NOT at all seizure related.  Her stomach was distended, her lungs sounded tight, they rushed in a chest x-ray, and shoved an NG tube down her nose into her stomach to release the air/pressure that was inside.  That was an immediate help, but at this point, she was just lying there.  There was no movement.

Her surgeon was the only person willing to listen to me that this was not due to any seizure activity.  I had spoken with my dad who is a doctor and he asked how many cc’s of fluid were given, I was not sure at the time, but he told me if it was less than 100cc then it would be fine.  I went back to the nurse and asked, and they said it was 150cc’s.  I said, I think that is the problem, and I was met with all 20 people telling me this was appropriate for a baby Sonzee’s size based on a calculation (which I will find out which calculation they used because it makes zero sense with what I know her weight is and what my dad says is the recommended dosage).  No one listened to me.

We were transferred to the ER, and she just laid still on the gurney.  Her body was beyond pale, and her lips were a greyish/blue tinged color.  I get it now what people are referring to when they ask if lip color has changed.  She looked so awful; I took a picture and could not bear to look at it.  It made me sick.  We got into the ER and the ER doctor comes in and talks to me as if this is my first go around with seizures.  He starts to tell me that it is possible Sonzee is having sub-clinical seizures that we might not be able to see, I retort back with “You mean status?”  I think he was taken back when I said those words.  He said, “Yes”.  He then continued to tell me that he just spoke with neuro and they want to give her Ativan to take her out of the seizure.  At this point, Sam almost punched him in the face, I told him to sit down and be quiet or get out.  I told the doctor, we were not doing that, but I would be more than happy for her to have an EEG and if it showed she was actually in status, he could give it to her.  He said, “Why are you against the Ativan”, I said, “Because she isn’t having subclinical seizures”.  He said, “Well I can’t just order an EEG, she would need to go to the ICU for constant monitoring”.  To which I replied, “Okay, then put her in the ICU”.  He goes onto to explain that usually Ativan is just administered so as not to waste the time it would take to get her hooked up to the EEG.  I said, “Well until you show me she is having a seizure, you aren’t giving her anything.”  I am pretty sure he did not realize I know a thing or two about seizures; he walked away, I am sure to make a phone call. 

When he came back, he listed all of the tests he would need to perform since I was not willing to give her the Ativan.  I am pretty sure he was not so excited her blood work indicated she was sick, not saying he wanted her to be sick, but it was not helping his case.  He had them do urine cultures with catheters, he had them drawing blood out of her arms, they put in another IV, she continued to lay there.  We were adamant this was related to the IV and the fluid administration; everyone else was blaming it on a seizure, or they would simply say, “Well, we just don’t know what happened, it’s hard to say”.  I know they have to do that to protect themselves, but it can be quite frustrating to deal with.  We wanted to try to feed her; the poor girl still had not eaten.  I kept asking for an NG tube if they were not going to let me feed her by mouth.  We were told for that they would need to do more x-rays of her stomach and lungs in order to make sure we could place the NG tube.  Neither of those tests was ever done.  Finally, around 3:15pm after all of the poking and prodding, the bear began to come back to life.  We begged to give her a bottle, by 3:30pm, she was finally taking one.

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Wednesday, February 24, 2016

Parenting is hard

There was a recent situation in our parent support group that has been on my mind over the past week.  It did not deal directly with Sonzee or myself, however, it was one of those emotional, electrically charged conversations that sends people into a tizzy.  While it would not be appropriate to discuss the nature of the topic itself, I feel almost obligated to touch on the topic of parenting and offering support.  I have been compartmentalizing my thoughts the last couple of days, attempting to sort them out while waiting for the post to begin writing itself in my head.  As usual I have been a bit caught up in how to accurately articulate my thoughts, however, tonight when I sat down in front of the computer I eventually found the words to convey a message.

No one knows everything about every situation.  I personally offer a window of our life with Sonzee, but that is just what it is, a window, a snapshot.  No one knows exactly what goes on here unless they have a camera set up within my house and have a live feed (complete with audio) that they are continuously watching.  In my blog I share my feelings as openly as possible, but I assure you there is more that is left to your imagination.  I can paint a picture with my words, but you will interpret my writings in a way that most benefits you. There is nothing wrong with that, but when you walk away and close the computer and return to your family and your life, our life with Sonzee is still being written.  When I create the words that you read on your screen they are carefully chosen.  I can suggest by my words what tone I wish the post to take, but there are times that a post is happy simply because I want to believe that the situation I am writing about will be.  I sometimes am so burdened by the weight of a situation that I cannot possibly put a happy twist on it and those are my more "depressing" posts.  No matter what, there are days when even though you have a glimpse into our life by viewing the adorable pictures I post on Facebook , you do not have the entire picture.

After I publish my posts I receive emails, comments, messages, phone calls, etc. offering words of encouragement, offering support, offering ideas of how to possibly deal with our situation.  They are always appreciated, they are always read, they are always considered.  You may see me put those thoughts, comments, concerns, etc. into action, you may not.  You may disagree with my style of parenting, you may think you would do things differently, and you very well might if you were in our exact situation.  That is perfectly fine, that would be your right to do what YOU felt was best for YOUR child if you were in the same situation.

Emotions can fly really high when it comes to children and parenting in general.  It is because of that basic fact that you should never feel it is acceptable to insult, berate, or question anyone's parenting.  You might think your choice is right and that you would make a better parent to the child who's parenting you are questioning.  It is always EASY to say what you "would do if...", but the truth is, until it happens it is all projection.  It is what you think you would do.  It is highly possible that you would find yourself surprised at some of the decisions you might end up making if you found yourself in another family's exact situation.  If you ever find yourself in a similar situation to a person seeking support and you would not follow the same path they have chosen, then by all means you can disagree, you can make a different choice; but that doesn't make your choice better, that doesn't make you right, and that certainly doesn't make the other parent wrong.  

When you offer someone support that does not mean you agree with any or all of their parental decisions.  When you offer support that does not mean you would do exactly what they are choosing to do.  When you offer a person support it simply means you are acknowledging that this person is in a less than ideal situation, it means you want them to know they are not alone as they travel down an undesirable path.  When you offer support you may offer suggestions that could possibly offer comfort and or compassion, however you do not know how the receiving end will interpret your words.  When you offer support you might find yourself sharing a similar experience you have found yourself or loved one in and you may share that in your specific case you tried XYZ and the situation was resolved.  If you are the type of person to make recommendations please acknowledge that just because you offered a solution does not mean it is viable in this person's situation.  If you offer a solution it does not mean that if the person does not execute the exact plan you are proposing that this person is a bad parent.

When you offer someone support you should ask yourself what type of support is this person seeking?  Are they looking for a solution or are they simply just wanting you to hold their hand as they walk a pebbled path?   You should ask yourself if your words will be perceived as supportive and if you were this person would you want these words spoken to you?  Will your words be a crutch to help this person stand, will your words actually help them out of the darkness, will your words be beneficial to them, will your words actually provide support?

Parenting is hard.  You should never feel you will do it better with someone else's child.  You are entitled to your feelings.  You are entitled to your thoughts.  However, you do not know the whole story, no outsider knows the entire story.  If you were worthy enough to be given a glance into a personal situation then take the information and process it in a way that you feel appropriate.  If you are concerned then you should privately reach out in an attempt to gain clarity, but know that you are not owed such clarity, you are not owed an explanation of any kind.  Parenting is hard and until you are living in the exact situation you have no right to act like you would do better nor pass judgement.
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Monday, February 22, 2016

Never judge a book

If you look at the Sonze what you will see is a baby.  If you look at her while she is in the newborn to 6 month music class, you would have no idea that she does not technically belong.  She is at least 6 months older than most of the kiddos yet she looks smaller than the majority of them.  She does not have a mouth filled with teeth; she is just now finally getting her first tooth.  She does not sit on her own or hold onto toys, and she hardly raises her head while on tummy time for more than 5 seconds.  When people look at Sonzee and then ask me how old my baby is, there is definitely a moment of silence and shock after my reply.  Based purely off looks and outward presentation, the bear can easily be misjudged.

I am guilty of falling for the misrepresentation myself.  I purposefully changed out all of her clothing to only have 12 month or 12-18 months so I would not keep "forgetting" she is not 6 months old.  I honestly do not care if the pants have to be rolled or if the shirt is falling off her is just easier for me mentally to see her in age appropriate clothing.  I can be thrown off when I lay her down and she just rolls over and immediately sucks her thumb.  We all know a typical one-year-old does so much more physically and expressively, that combined with her small stature it can make us all think there is nothing more than just a young baby in our presence.

However, we would be wrong.

Sonzee is unable to coordinate her muscle movements the way they need to be in order for her to achieve physical achievements.  She is also unable to coordinate her oral structures so they can produce sounds and words appropriately.  Her eyes have a similar deficit in the fact that they are unable to communicate appropriately with her brain in order for her to see objects appropriately.  To sound technical, Sonzee suffers from global apraxia.  This is not the only deficit she is dealing with, but it is one that negatively affects her significantly.  What can be confusing when children present with a form (or all forms) of apraxia, is that it can be assumed they do not understand.    

However, that would be wrong

Sonzee understands.  If I give her ample time, she responds to me in different ways.  She lets me know her likes and dislikes.  She lets me know when she is happy and sad.  She lets me know when she wants to do more of an activity or she wants to do less.  Trapped inside her little adorable body is a Sonzee Bear communicating with me and letting me know she understands.  I get so excited when she shows me that she is present, that she is awake inside.  When she closes her eyes before she is put underwater at swim.  When we tell her "clap, clap" and we see her try to move her hands together, even if there is no coordination and to a bystander it looks like she is not doing anything remotely looking like a clap.  When I say, "here is miss Holly", and we both do a double take because we could swear she tried to reach out for her.  When someone she loves enters a room and she hears his/her voice and she makes a sound or moves her body excitedly.  When she is lying down and we say "kick, aba", and she kicks Sam in the face multiple times.  Her little personality is adorable, it is shining, and it is there!    

It can be easy to be caught up in the moment and forget that my "baby" is capable than so much more than how she physically presents.  It is much easier to simply judge a book by its cover.  Although I am getting to the point where I really have to watch what I say around her; it would be really uncomfortable for us all if her first and only word ends up being a profanity.  However, that would be a really awesome conversational piece.   

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Friday, February 19, 2016

Tough Choices

There are certain conversations you can imagine having with your spouse when you first learn you will be parents.  You discuss your opinions of learning the gender of your child prior to birth.  You each offer a list of names that might be suitable for your unborn child.  You discuss schooling and potential activities he/she might participate in.  You talk about desired traits you hope they have and the ones you hope skip to the next generation.  After you have a child or two the conversations slightly change, but they are still based on your hopes and dreams for the new child and you may talk about how all of your children will interact together.  As your children continue to grow your conversations may shift, but the basic premise stays the same.  Until that time your fourth child was suffering from an incurable disease and the topics shift and become....morbid.

Never in my life did I ever imagine that my dinner conversation with Sam would turn into a discussion of "quality vs quantity of life".  I also never anticipated that our differing views regarding "what happens if..." might one day actually have to have an answer we are both in agreement with.  These discussions while hypothetical might actually become our reality and I do not think we are really on the same page.  These discussions need to be had now when we are not caught up in a moment, when we are not pressured into actually making the hardest decision(s) of our lives.  We need to make sure we are both at peace with whatever discussion we come to, and hopefully neither of us will feel slighted.  I am frustrated that we even have to discuss these matters because IT IS NOT NORMAL.  

I have decided that I have obviously overused the phrase "I can't even imagine" during my life, because G-d has so kindly placed me into situations where I no longer need my imagination.  My reality is filled with happenings others tell me I should avoid reading about.  Even if I could "shelter" myself from what is occurring in the lives of families with other children who also have CDKL5 mutations, I would not want to.  We are all a family.  We are all in this together, whether we like it or not.  Our children face different hurdles and have different circumstances, but the outcomes do not differ all that much.  We all make what we feel are the best decisions for our children and family that "help" us walk along the path.  

So as always I find myself asking, "How do we prepare".  Is that even possible?  Maybe I have a false sense of security, but if we are armed with answers to the tough questions, I feel like things might be "easier".  In all honesty, what actually scares me is that if we are placed in a situation where our views differ from one another, one of us will obviously be left feeling resentment towards the other.  I am just not sure how we find the grey area when the answers are either black or white.

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Wednesday, February 17, 2016


When I need a boost of inspiration to help me express exactly what is stirring around within me, I like to look at the Google images of quotes written across a pretty background.  Today I was sitting down to get my thoughts out of my head and decided to type "nervous" into the search bar.  I do not feel that accurately summarizes everything I am feeling, but it is the closest word I am able to conjure up.  As I read each image, I found the words that pinpoint my feelings right now precisely.  

"Yes, I am Fine.
Freaked Out.

Sonzee is having her Gtube placed in a week and a half and I am feeling ALL of the above.  I play devil’s advocate multiple times a day, telling myself why we should hold off on the surgery.  Then she spends her day sleeping or not finishing her bottles and I tell myself, "This is the reason" we need to do it.  One minute I am shopping on ETSY for the cutesy gtube pads and accessories and the next I think how I just wasted my money because she is not going to need them.  I am freaked out because who would not be sending their child off for a hour and a half surgery.  I am insecure because there is no way to know for sure if this is the best decision until we give it a chance.  I am nervous because surgery is risky, complications are possible, and this disorder is not clear-cut.  I am emotional because I am female and that just comes along with the territory.

As usual, I have tried to defer to my trusty old gut.  You know the one that I am working on believing more often.  "What does your gut say?”  I ask myself repeatedly.  Well that answer is loaded.  There seems to come a time when it becomes tough to clearly identify when it is your actual gut communicating with you.  There are so many factors that play a role in this decision, there are so many considerations; like everything else, there are so many unknowns.  Neither solution comes without strings.  I am torn between what I feel is the best decision, the right decision, the most appropriate decision for the bear, and my insecurities, nervousness, and overall emotions.  

These feelings make things down right confusing.  The nervousness infiltrates my thoughts by placing drops of doubt into the recesses of my mind.  Every emotion possible rears its ugly head in various questions, "Why on earth would I want my baby's perfect tummy cut into?", “Is having this procedure which requires anesthesia really necessary?", "Is this Mic-Key button even going to work?"  The answers can be given with confidence, but aren't 100%,  "This tube will help give her the nutrients she needs to grow", "YES it is necessary, provided there is not another issue as to why she is unable to gain weight", and "YES it will work, unless like I previously stated, there is something else going on".  I try not to ride the downward spiral game, the one that fills my mind with contradiction and has me internally defend the decision I made 5 seconds prior.  Like a dog chasing its tail, I come full circle and say, "It is obvious she needs this Randi, she has only gained 10 ounces in SIX months". 

The fact is that I am FINE.  I am freaked out, I am insecure, I am nervous, and I am emotional.  It is all normal, and it is just another part of being a mom.

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Monday, February 15, 2016

Sonzee Bear turns ONE

Beginning around the time Sonzee turned 10 months it really set in that she most likely would not be sitting by her first birthday.  From the day of her first seizure and when we later learned she would most likely have developmental delays, I still held onto the hope and vision of her sitting in her high chair with a cupcake in front her.  I pictured her like all of my other children hesitantly reaching out to touch the frosting and then taking a taste making a huge mess on her face.  I have loved the pictures of the messy smash cakes that I have of her siblings, I wanted to add to that collection.  As the day quickly approached, I knew it was not necessary to purchase a mat to place under the high chair.  I knew she would not be participating in this "coming of age" event, at least not for this birthday.  

Her birthday celebration was a perfect day in the sense that our closest friends and family surrounded us.  Sonzee participated in her favorite event of sleeping, and I suppose she had a right to celebrate her birthday in that fashion.  She had the most spasm episodes in the past week of course all throughout the day and that of course was disappointing to say the least.  I wish she did not have to suffer all the time.  I was distracted by everyone in attendance so I did not have a chance to get emotional about everything that was not going the way I had envisioned.  To be honest, the only time I almost cried in front of everyone was when I brought out the cupcakes and everyone began to eat them, but we had not even sang "Happy Birthday".  At the same moment, I looked over at the bear and she was peacefully asleep.  I was hit with a mixed bag of emotions all at once.

The little bear decided to grace us with her presence shortly after.  We ended up being able to take a picture of Sam and me holding her as I held her special cupcake.  There are no cutesy pictures of her diving into the cake with carelessness.  There are no pictures of her all smiley or crawling around in a mixture of cake batter and pink/white frosting.  On the positive side, that is not something that NEEDS to happen with every first birthday, it is just something that I like to have happen.  I can focus on the fact that she enjoyed her special day the way she loves to spend her days.  I have pictures of her cuddling with various people.  I have pictures of her looking beautiful in her birthday outfit.  If I am honest with you, even focusing on the positive still has me left with an empty feeling in my stomach and some tears in my eyes.  However, I still have hope that on her second birthday, she will be sitting on the ground and able to smash into a cake for me to take a million pictures, and I have a whole 365 days to picture this momentous occasion.

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Wednesday, February 10, 2016

Dear Sonzee Bear

Dear Sonzee Bear,

In less than a day, you will be ONE year old.  That is completely unbelievable to me.  It is not because I cannot believe how quickly the year has gone, but more that I cannot believe how much one little person can manage to do in just one year.  You my dear little bear have been through more in your almost 365 days than I personally have in my 32 years of life.  You were born into a beautiful body that is so bewildered by your special and unique soul that it pushes you to your limits 24/7.  There are not many like you with the strength, perseverance, determination, and patience to be up for such insurmountable daily challenges, and even on your bad days, you deal with it all minute by minute with such grace.  

I have spent the majority of this past year siphoning through my feelings regarding this predicament our family has been placed into.  The predicament of welcoming into our family our fourth child, our third daughter, our second beautiful blue-eyed girl, our first child with a CDKL5 mutation.  The predicament of watching our little baby girl seize multiple times a day, while being unable to do anything to stop it, and feeling completely and utterly helpless.  I will not lie and say that the past 525,600 minutes have been spent with only laughter, smiles, and eagerness as we watched you develop into the special little one year old you are about to become.  I will not say that the only tears I shed were those of happiness as I watched you get to know and bond with your older brother and sisters.  I am unable to say that this past year was filled with watching you learn and explore this crazy world you were born into.

What I can say with certainty as I reflect on your FIRST year of life is that while it was not filled with the completion of typical firsts for you, you gave me the opportunity to experience many firsts of my own.  The first time I had to leave a child in the NICU.  The first time I had to spend multiple nights sleeping on a hospital "bed" next to one of my children.  The first time I saw a baby or a person for that matter have a seizure.  The first time I learned about epilepsy and CDKL5.  The first time I would learn about epileptologists, geneticists, and a long list of other medical specialists that I did not even realize existed.  It was the first time our family would be broken more times than I thought was possible.  The first time I had a glimpse of rock bottom and what it feels like to feel despair and hopelessness.  It has been a year of experiencing raw, pure, unfiltered emotions to their fullest, both good and bad,     

A wise woman whom I hope to be able to meet in person one day has said "I believe every person has a purpose...even if that purpose is to change you...then they serve their purpose."  Thank you Sonya Ahava for pushing me towards my purpose.  You have allowed me to be more open and vulnerable in all of my interactions.  You have taught me to truly not sweat the small stuff, and I know your siblings and father are most appreciative of this accomplishment.  You make me realize what is truly important in the smaller picture of "right here and right now" and what it means to be "living in the moment".  You make me want to take each day and make the most of it.  The two most powerful firsts I have accomplished since your arrival, are ones that took just about the entire year.  You have given me the ability to use my voice confidently AND you have taught me to trust my gut.  Both of these are skills I will continue to work on improving to make sure I do right by you and of course your siblings.

You have spent the first year of your life trying to do your best every day.  You get tired easily, but you pick up where you left off, always pushing yourself to go further.  You have an appreciation for the tiniest things, and while others may not understand, you see things in a different light.  You love to just take in the sights while sucking your thumb.  You love to be around your siblings, and crave social interactions.  You are improving with your physical skills and overall development.  With your achievements slow and steady, it has given us all close to you the ability to appreciate them that much more.  

As we all look towards your second year, I hope it is filled with the accomplishments of many physical goals as well as appreciation towards your capabilities.  I hope your upcoming year is spent with more happiness and less seizures.  I hope you continue to be content, but strive for more.  I want you to continue to grow socially and emotionally and I look forward to getting to know more about your cute little personality.  I hope you grace us with more and more of your smiles and we get to hear your laughter.  While I would gladly trade places with you in a heartbeat, that unfortunately will not ever be up to me.  Nevertheless, I will continue to do what it takes to help you continue to write the pages of your story.

Happy FIRST Birthday Sonzee Bear!!

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Monday, February 8, 2016


The worst part of having feelings that are not always happy or positive, is people telling you to "look at the positive", or "you shouldn't focus on that".  I have come to expect and I do accept that type of response from Sam because he is a guy and guys in general are always in "fix it" mode.  However, it leaves me a bit frustrated when it comes from other sources because A. unless your child has CDKL5 you honestly have NO idea what we are really dealing with and B.  I actually want to FEEL all of my feelings.  I want to HONOR all of my feelings.  I want to EXPERIENCE all of my feelings, because it is the only way for me to truly be in balance.

When I have a day that is a bit off, I know there will be a day in the near future that will be a bit on.  Wrongs are always righted.  Downs are brought back up.  An empty glass will become full.  Trust me; I spend the majority of my time looking at the positives.  Besides the recent deaths, there are so many children with CDKL5 who continue to make progress, achieve accomplishments, and check items off their individual "To Do" lists.  This blog was created to share Sonzee's journey, but an important part is for me to get my thoughts out of my head so I do not suffocate.  Please do realize even in my "Debbie Downer" postings that I too am hanging onto HOPE.  Hope in Sonzee achieving milestones.  Hope in a long life for Sonzee and her CDKL5 siblings.  Hope in a cure for CDKL5.  

Today Sam talked me into going to a super bowl party with the kids.  Sonzee has not been in the mood for making public appearances lately, and truthfully they have not been my thing lately either (shocking I know).  I was dreading going because the bear has been, well just that, a bear, and I would much rather stay in the confines of our home and let her be a bear here.  On top of her grouchiness, there is the mental preparation that comes with leaving my home because whenever I go out the conversation typically involves a reference to Sonzee's size, the fact that she'll soon be 1, and discussions regarding her seizures, all of which honestly, I don't always want to talk about.  Add to that my lack of desire to be social, and well, this just sounded like it was going to be a grand ole time.  So, the last thing I did before walking out the door was go grab a bottle of wine.  I was not quite sure if this was super bowl appropriate, but figured in the worst case, I would sit and drink the bottle myself. 

I will be the first one to admit that I am glad Sam made me go.  The food was amazing and it paired well with the bottle of wine that I actually did share.  My favorite part of the night turned out to be the company.  Women who gladly snuggled with a grumpy bear, making sure she was loved on and as comfortable as possible.  Women who took out wine glasses and drank in honor of whatever is imperfect in their lives.  Women who allowed me to feel whatever it was I was feeling in the moment without making me feel like I have to defend my feelings and/or thoughts,  Not everyone can understand what it is like to have a child with CDKL5 or a child with special needs in general.  But thank you to those who stand by me, who support me, who don't question me, and who know when not to tell me to focus on the positives as I continue to try to understand what life is like with a child with CDKL5. 

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Friday, February 5, 2016

One Week

A lot can happen in just one week.  For Sonzee, one week is the amount of time she spent in the NICU after she was born.  It is the length of her first hospital stay the first time she was admitted for what I was certain were seizures.  A week is the length of time that goes by when we add up and tally the events of her seizure log.  A week is the amount of time that is left before my baby is no longer considered "a baby" in terms of her age.  In just one week, I will put my baby to bed and she will wake up "a toddler".  I am so torn with my emotions.  

On the one hand, I am so excited to celebrate HER and her birthday.  I cannot wait to celebrate ALL that she has overcome in the previous year of her life.  I am looking forward to the new year ahead and all that is in store for her specific cognitive, emotional, and social development.  I am so overly excited that we have her here to celebrate this day with us.  These are the facts that I try to focus on, that I try to repeat in my mind as her first birthday continues to creep closer, because there is the other hand.

On the other hand, her birthday is a reminder of the milestones she has not yet accomplished.  It is an unfriendly reminder that the goals that we created for her are still not mastered.  My soon to be toddler is unable to sit unassisted, and truthfully, even assisted she has difficulty.  My almost one year old does not have any words to communicate her wants or needs.  My soon to be one year old cannot hold her head up while she is on her tummy for more than a couple of seconds and she cannot crawl.  When she wakes up on her birthday, she will still look like a tiny 6-month-old, but she will be ONE.

In many of the ways, the blank canvas of her year to come is no different from any other child's, but in many ways, it is.  I am fearful of the year that lies ahead.  I dread the awkward looks and uncomfortable situations that will follow after people ask me her age.  I am scared for the new medical experiences we are going to be facing.  I am nervous about her first surgery and if it will be her only one.  I am petrified for what is in store for her seizure activity and all of the other things I do not even know are to come.  

At the same time, I am anxious to see if the ketogenic diet and RSHO control her seizures enough for us to wean off her remaining pharmaceutical.  I am optimistic that this year will be amazing for her growth in all areas.  I am excited at the potential of meeting our baby girl who is trapped inside her body.  I am eager to see if this year will be the year we can check off some of her milestones.  

In one week, I will decorate our bedroom door, where Sonzee sleeps, as I do for all of my children on their birthdays.  I will place a sticker on her onesie that says "12 months" and take a picture of her in front of the chalkboard sign in our playroom.  In one week, I will sing happy birthday and give her a keto-fied cupcake for her to taste.  In just one week, I will give her a present that she will hopefully find interesting and enjoy.  In one week, family will fly into town to celebrate a year that has gone by that was unlike any other our family has experienced.  We will gather around the Bear and celebrate all that she has accomplished in 12 months of life, and look forward to all that she will accomplish in the year to come.  In one week there will be a lot of smiles as we celebrate this joyous and momentous occasion, but truth be told, at the same time, there will also be a decent amount of tears.

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Monday, February 1, 2016


It goes without saying that parenting in general is not easy.  It also goes without saying that being a special needs parent is a completely different experience.  Where I feel I slack in parenting my typical kiddos it does not feel as disastrous as the areas I feel I may slack with Sonzee.  With my typical kiddos I am confident that the decisions I make for them (whether my kids are happy in the moment or not) are not going to cause them to need any additional mental therapy to what they'll require as adults just being products of Sam's and mine :-).  When it comes to Sonzee, it is ALL different.

This morning I started feeling bummed about the bear's desire (or lack thereof) to participate and engage in activities to help with her development.  Sam and I decided awhile back that we would follow her lead and if she was not going to be on board, we were not going to force her.  We have truly been embracing the concept of celebrating her daily presence more than what her physical capabilities are.  I have been content because she has been content.  This morning however was one of those mornings where I was derailed.  I saw another child who has a CDKL5 mutation do things I can only dream Sonzee to be able to do.  Naturally, I immediately took the bear and started trying to make her to do things that she is just not ready for.  I will summarize the outcome for you; it led to both of us in tears and me sending Sam a text of frustration.

Sam and I do not always see eye to eye.  Half the time I do not even feel like he gets what predicament I am in spending all day every day with her with little to no break.  Then there is a day like today where dare I say, my knight in shining armor (please don't let this go to your head) came home, walked up to me with his arms open for a hug and said "We broke a rule.  We are not supposed to compare her to other kiddos with CDKL5; it is not fair to her.  I know you are upset over what Sonzee is not doing.  I thought we decided we were going to just enjoy her, because the truth is Randi, we do not know how long she will be here.  I know you are frustrated, she is frustrated.  You are not a failure."

The tears welled up in my eyes.  Right there, those words, my EXACT feelings neatly packaged into one five-word phrase.  YOU ARE NOT A FAILURE.  What is it that makes us as parents immediately feel it is our fault if our kids do not do something?  Why do we so critically judge and question our parenting based on singular circumstances?  Why is it we immediately accuse ourselves of not doing enough?  

I have to really start to believe that it is NOT me.  I am doing everything I can for this little girl, and the truth is it may not be enough because I cannot give her a healthy CDKL5 gene, but that is out of my capabilities.  I am doing the BEST I can, the BEST for her, the BEST in this situation.  Whether she is unable to sit on her own, whether she is unable to crawl or walk, or whether she is never able to sing and dance, none of those things will be the result of my failure as a mother.

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