Muddled thoughts

I started to write a post the other night after I came across a picture of a child younger than Sonzee diagnosed with CDKL5 who was sitting.  I couldn't shake the feeling that came over me, so I opened up blogger and scribbled down my thoughts.  In summary, it was happiness panged with being envious that Sonzee's mutation was not affording her the same capabilities.  Naturally, life got in the way so I have not had a chance to finish those initial thoughts.  Then today, completely unexpectedly, it was me witnessing and then posting a video with 13 seconds of my child with CDKL5 sitting.  It wasn't pretty, it wasn't the way any of my typical children began to practice when they were 5-7 months old.  She was completely wobbling, her body awareness was completely off, she required multiple touch cues, and she fell over every single attempt, BUT she sat.

I hesitated about posting it, even though it is only 13 seconds, it is 13 seconds longer than so many children diagnosed with CDKL5 or other various causes to their medical complexity have been able to do.  While it by no means can count as hitting the milestone, I am feeling a pang of milestone guilt for the other mother's who have not experienced these 13 seconds.  I still cannot leave her on the floor to play, sit alone on a couch, put her in a shopping cart, or place her in any other situation that the majority of parents of 6-8 month children get to celebrate doing, it is 13 seconds longer than I expected at this point in her life, and 13 seconds longer than some of my special needs mommy friends haven't been afforded. 

4 years into this life and I feel like I am still figuring out how to make it all work.  The desire to celebrate milestones met by our children's friends, yet silently mourning the fact that our child can't or won't meet them.  The desire to want to celebrate our child's accomplishments without making another parent cry themselves to sleep because of it.  The doubt we feel about what we are doing to support our child when another parent says all that he or she has their child participating in.  The wondering if what we are doing is ever enough.  The confusion of if our choices are right or wrong, and if those choices are the causes of the negative outcomes that ensue.  And the ever-present, always lurking question of despite what we may or may not have our child try, despite them ever officially meeting any standard milestone, does everything we do at least add up to a desired quality of life. 

But I wish...

I was scrolling through my Facebook this week and there was a little girl who is similar in her presentation of CDKL5 as Sonzee, and she is now sitting unassisted.  I was honestly so excited for her and even more so her family.  She has no idea how much that little milestone will mean to them.  It is one of those milestones I have shelved for Sonzee; it is just easier that way.  After I scrolled past I did not keep thinking about her sitting, but then another image of her sitting appeared, and it bothered me that Sonzee never has gotten to experience that sort of independence. 

I really do not know how or even if her life would be drastically different if she was able to sit unassisted.  Would she even like it?  It is not as if she would be able to crawl out of sitting, or interact with any toys, so maybe her being unable to sit is saving her from the frustration of being left in the middle of the room to essentially do nothing.  I wonder why I cannot truly accept these limitations her body has on her.  I wonder if it is just because there is an inescapable guilt that comes from not being able to help her achieve these developmental milestones.

I do understand there is not anything I can do more of to help her, it is either something her body is able to do or something it is not.  It has little to do with any choices Sam and I have ever made regarding her medications.  It is not because we do not have her enrolled in 12 hour daily physical therapy sessions.  There was not something we did or did not do to cause her to be unable to sit.  It just simply is not in her DNA.

But oh, how I wish it were.

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Still trying to accept...

I know one of the harder parts of this journey is acceptance.  While I have experienced brief moments where I am content with how things are, I can admit that I have not truly accepted everything CDKL5 has thrown Sonzee's way, but I don't think I ever will.  Usually after watching one of Sonzee's CDKL5 siblings who is around her age celebrate the mastery of a skill that Sonzee still cannot do I tend to feel the saddest.  While I am genuinely happy and excited for each of them as they meet their own inch stones, it makes a small dent in my heart and the doubts of what we are doing for her creeps in.  What are we doing wrong? Are we not giving her enough therapy?  Is it our fault?  Could we be doing more?  Should we be doing more?  Will more make a difference?  

This train of thought begins to wreak havoc in my mind and an internal game of devil’s advocate ensues.  Even if we give her intensive therapy it won't make a miracle happen (we have tried that).  If we do more therapies, she will surely excel (she seizes and then sleeps through the ones she currently has).  If we pushed her she would meet her milestones (she is doing her best, she cannot beat genetics and her mutation is not a "lucky" one).  She is happy and content (Is she really?)  If we finally got control of her seizures that would surely help (No. It won't because even during her 5 weeks of seizure freedom that she has experienced twice in her life, she made zero gains developmentally).  You are doing your best for her (No I am not because she should be able to hold a toy or sit).

Lately it feels like every CDKL5 sibling around Sonzee's age has blown past her.  They are sitting, pushing to sit, rocking on all fours, crawling, bearing weight, walking with toy walkers, walking holding hands, and/or walking on their own.  Maybe it just feels that way because I am feeling like it is my fault she has not moved beyond a 3-4 month developmentally.  I remember when she was 4 months old and Sam and I had dreams she would be the one who would defy the CDKL5 stereotypes.  She was taking part in every therapy under the sun, it didn't matter the cost, she would have it all.  We bought or asked for every possible piece of equipment that might make a difference that was age appropriate.  Here we are, her about to be three and I don't want to give up on her being able to sit...but even that has not happened.

I know mastered milestones do not correlate to the level of success a person has achieved in his or her life, but as a parent of a child who has hardly completed any I just feel like a huge and complete failure.  I know we have tried everything we possible could to help her and I do not know how to accept that maybe she really will not ever meet any of these "basic" life skills or that there is nothing more we can do to help her complete them.

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Tug of war

We finally toured Sonzee's preschool yesterday.  I say finally, because we have known since she was 2 months old that we wanted to send her to this school.  We have attended the family program on Friday's over the past 2 years, but have never actually set foot on the other side of the double doors.  We have one remaining meeting in 13 days that will make this next step our official reality.  I am filled with mixed emotions as my baby girl is getting ready to enter her first school.  On one hand they are the same emotions that have filled my head and heart as her three older siblings took these same steps, on the other hand, they could not be more different.

I feel like my mind is separated into two sides and there is a rope attached to both sides, for every happy emotion there is one that makes my heart sad, and I am being pulled back and forth between them.  I am so excited that Sonzee will have the ability to flourish in a new environment, but it is not in the same environment where her siblings are.  I am so thankful she will be in a classroom that is tailored to meet her needs, but she will no longer be home with me every day.  Her classroom while likely to be amazing and will provide her with the tools she will need, is not a typical classroom in any manner.  I am so grateful for the opportunities this school will undoubtedly provide for her and to her, but they are not the opportunities parents wish for their children to have to experience when they envision their schooling.

We walked from classroom to classroom, looking through the glass at the children as they learned.  We started by seeing those children who are developmentally the oldest; smiles across their faces, lights bright in the room, sitting around the table enjoying their snacks.  Multiple teachers and aids at their side helping them with their snack time activity.  As we continued our tour the lights in the classes were lower to help with seizure activity, and the centers were slowly replaced with several types of equipment.  Sam joked that there were easily thousands of dollars in equipment in one of the rooms.  My heart bursting at the idea of her getting to experience incredible opportunities that insurance would never allow us to do at home, but simultaneously hurting at the fact that she needs all the several types.

My baby girl is no longer a baby for all intents and purposes, but she will not be walking into her first day of school.  She will not require a teacher to hold her while she kicks and screams begging me not to leave her.  She won't come rushing back to the door or look at me with a face that pleads with me not to leave her with people she hardly knows for the day.  She won't give me kisses or huggies or tell me she loves me, to have a good day, that she will miss me or even say good-bye.  I won't look through the glass window and see her distracted by an activity, so she doesn't realize I am gone.  She won't glance back to see if I have walked away.  All the first days of school experienced since 2015 that brought me tears as I wondered how Sonzee's would go are about to come to fruition, culminating into the biggest game of tug of war.

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Spectrum

It has been four days since our CDKL5 family lost another precious little soul.  A sweet 2 year 10-month-old little boy who was just 4 months older than Sonzee.  The pain is a mixture of heartbreak for his family tinged with fear for my own.  Within those four days another CDKL5 2-year-old learned how to take her first independent steps.  My heart filled with joy for all she has accomplished and immense amount of hope for her journey, but simultaneously breaks for what Sonzee might never do.  My heart and mind both torn at the fact that I should be less selfish about my feelings toward other CDKL5 children’s' advancements and just be grateful it's not my turn to be planning a funeral. 

This incurable disorder is just devastating on every imaginable level possible.  The spectrum is so wide and confusing.  We all want to grasp onto hope with the term representing various parts.  We hope our children do not constantly seize, we hope our children gain milestones, we hope our children are happy, we hope our children do not suffer, we hope our children do not catch a common cold that sends them into the hospital and has them clinging onto their lives, and most importantly we hope and pray our time to bury our child does not come today.

I spend every moment trying to keep Sonzee's life expectancy in perspective.  I try not to focus on the "what if" and "when".  I do not let those aspects consume my life, but the thoughts are never distant from my mind.  I know plenty will say "I shouldn't think that way", even other parents of children with CDKL5, but I will not convince myself otherwise when I know how unforgiving these toddler years can be, when I have witnessed Sonzee teeter on the delicate rope between life and death, and when I watch her seizures increase in both length and intensity right before my eyes.  It works the same with her Sonzee-stone achievements, I try not to focus on the "what if" and "When" but just let her do what her body is capable of, trying to truly believe when I say that I am content with where she is at.  

Daily we have new CDKL5 family members added to our group.  Having your child affected by a disorder with such a spectrum is cruel and unfair.  A parent posts a picture a picture of their 14-month-old standing and some say it "gives them hope", while I do my best to not compare an apple to an orange.  No one wants to have their child "more severely impacted", but someone must fill those shoes.  It is just the luck of the draw when it comes to CDKL5 and the role it plays and while we could not have won a bigger jackpot having Sonzee as part of our family, we could not have fathomed how difficult and painful her journey was going to be. 

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Happy Diagnosis Day?

Happy Diagnosis Day?  I am typically a fan of celebrating every inch stone, milestone, Sonzee-stone, what have you, so it only seems fitting to somehow adorn our house with balloons and give thanks to CDKL5 being placed into our lives two years ago today.  Since I am not quite ready for that after only two years, I suppose the all-out celebration will have to be placed on a brief hold and reconsidered next year (or the year after?).  Regardless, today marks an important day in our family's life, and so today I am going to explain to every person who reads this blog post and for those of you who share the information written on this blog that CDKL5 does NOT mean your child has a worthless, unmeaningful, depressing, insert any negative connotation type of life.

CDKL5 has brought many challenges for Sonzee and our family.  The diagnosis made our worst fears become a reality in a matter of seconds.  However, two years in and our daughter is still alive and has not given up, so we will not either.  There are many people who pity the life that Sonzee lives.  There are those who decide that her quality of life is not "quality".  There are those who think she would be or that we would be better off without her here.  Yes, having a CDKL5 mutation is not ideal, no, I would never have chosen for my child to have a CDKL5 mutation, but this is how she was given to us and we love her the way she is.  She may be a little girl trapped inside her body, but she is smart and she is aware and she knows what is going on (it only takes one minute of actually being present with her to know all of this).

I pity people who think that having a disability defines a person.  I actually despise people who think that because a child is nonverbal that means they have no idea what is going on.  I feel sorry for people who do not take the time to get to know the child and learn to communicate with them in a different manner.  Every person has a story to tell and it may not be told verbally, and if you do not give a person the chance to tell it in his/her own way, that is not reflective of their cognitive capabilities.  If you meet a child or a person with CDKL5 I challenge you to spend time really getting to know him/her, not just petting their heads, or looking through their eyes.  I promise you will see the light in their eyes and their individual personality shine through, along with their obvious likes and dislikes made abundantly clear.

Having a CDKL5 diagnosis for Sonzee did not give us the answers we wanted, it did not give us closure and it did not give us any specific path to take.  It continues to give us speedbumps, hurdles, and roadblocks that we must creatively maneuver around.  It brings many nights of tears and a lifetime of fears as a parent.  CDKL5 means a life of challenges for Sonzee and a life of defending her capabilities to others who are too blind and closeminded to see them.  CDKL5 has given me various new perspectives, many great friendships, and an extended family that I will forever be grateful for. 

After only two years, the diagnosis is still too raw for me to embrace with open arms, but the strength, perseverance, and bearlike qualities it has given to Sonzee and honestly every other person in our immediate family is helping me to accept it a little more every day.  

So... I guess happy CDKL5 diagnosis day?

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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. 

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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!

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30 days and 12 hours (9/18/16 at 9pm)

It has been 30 days and 12 hours since our little bear had a seizure (as of this post being written, and I hope by the time this publishes I do not have to make any corrections.)  I can still remember the exact way she looked, where we were, who else was present, and the emotions that flooded through me.  I have a feeling that no matter what length of time that may pass, the details of her past seizures will always be there in my mind and haunt me.  Every body movement, eye roll, and sound that she makes sends a jolt through me that takes my breath away.  I often wonder if that will ever subside.

She is doing absolutely fantastic in so many ways.  Her head control is the best it has been in her life.  People that do not often see her make comments on how healthy she looks and how big she has gotten.  While she does not look directly at people who walk up to her, if someone talks to her in an excited manner and they wait patiently, she will give them one of her signature smiles.  It does depend on her mood how big or small the grin is, but she loves to give them out.  She loves to be around people and to interact.  In the past when she was upset, she preferred to be left to herself, but yesterday I did my usual "try anyway" approach, and she actually fell asleep while we were cuddling in my bed.  A moment that may never occur again, but was photographed and etched into my mind forever.  How long will this last?

Others have asked me this question AND I cannot lie, I wonder the answer myself.  I also wonder if I actually want to know the answer.  There used to be a part of me that would say "yes", please tell me how much longer our Sonzee bear has of being free from the havoc of seizures.  I would rationalize that I would need to know so I could enjoy every second and truly cherish the moments.  If I was at a different point on this journey, my answer might not be the answer I am comfortable with right now.  However, I know what is different and I know why.  

Not so long ago I wrote a post about change and how the entire concept confused me in regards to what roll "change" had on me.  I look back at the past four months, I can see how I am different, and I can even tell you why.  I can tell you that during Sonzee's 28-day hospitalization at Phoenix Children's Hospital there were days I actually pictured walking out of the doors without her coming home.  The thoughts I had during some of those days are honestly too challenging to relive just yet, but I can tell you they did make a positive impact to the me of now.  So if you ask me now if I want to know when this dream will end, the answer is NO!  I can promise you that I am enjoying every moment to the fullest, and I am cherishing every typical and atypical Sonzee moment she has to offer.  Even the Type A part of me is quietly hushed in the corner knowing all too well that her opinion does not matter.  

Whatever amount of time we are afforded with our bear in general and as a bonus with her being seizure free we will take with gratitude and appreciation.  Despite the bated breath that each movement, eye roll, and sound she makes brings to me I will continue to be grateful for each minute that she is not in pain and that she is not seizing.  No matter what happens to her seizure control, no one can take away the past 30 days and 12 hours of pure peace and joy that we have all been fortunate enough to experience.

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Sweet sounds

As a self preservation tactic I have kept my expectations lower for the developmental milestones Sonya will meet.  This is certainly not to say that I don't push her or that I don't expect her to achieve goals, but rather a system I have psychologically put into place so that I don't get depressed watching typically developing children...develop.

The BEST part of doing this is that when she does something that I didn't expect her to do I am beyond elated!  Without further adieu I give you "small talk with Sonzee"...

http://youtu.be/TGj8O8pZjxg

Keep the surprises coming baby girl!!!