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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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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Impartial

This week in our CDKL5 support group we welcomed so many new families who have babies.  I now consider anyone younger than Sonzee a baby and I am struggling with the realization that in just three short months she will be two.  This is a challenging concept to wrap my head around for so many reasons; I am having trouble picking the ones to focus on for this post.  With the challenges her 21 months of life have thrown at her, I am really proud and content with the place she is currently, however, I cannot ignore the elephant in the room that says, "None of the past 21 months has been normal, and none of it is fair".  I really think that the best lesson of my life I learned in 5th grade with Miss Bailey when she introduced our class to the word "impartial" with the sentence, "Life is not impartial".  Nothing like a great review of 21 months to say, "Miss Bailey, you were absolutely correct".

Sonzee is alive, she is absorbing food, she is healthy..., but we should not have to think about these things.  I should be chasing a toddler around my house; picking her up from the ground as she falls as she runs after her siblings trying to join in their shenanigans.  I should be enrolling her into dance class with Miss Jenny and Miss Emily.  She should be running around the gym with Coach Susan.  The appointments I make should not be with neurology, gastroenterology, pulmonology, ophthalmology, and/or interventional radiology.  I should not be parking in a handicap parking space and unfolding a stroller with a blue placard that explains it is being used as a wheelchair. 

My favorite part of having three girls is opening up the drawer of clothing and reminiscing over what her sisters did while wearing each outfit, knowing how every fade, stain, and spot was caused.  I love when her sister says "that laeya's?  That not mine.  That Sonzee’s?"  Words I most likely will not ever hear come from Sonzee's mouth.  The clothing will be passed down to her baby cousin, and it will bring me so much joy and happiness to watch her do the things in them that Sonzee has not, but it will also sting.  This is not how it is supposed to be.  My heart hurts.

When I look at Sonzee while she is in the pool with children her age it is completely mind boggling that they are the same age.  When children her age walk up to the stroller it stings when they say "baby", not because they are calling her a "baby", but because they are absolutely correct, she looks and acts like a baby.  It is the truth that hurts.  It is our current situation that is painful.  I do not understand why this had to happen to her.  I honestly do not try to make heads or tails of it, but I wish I knew why she has to suffer.

As each day goes by I am so thankful that she is still here with us, but it also gets scarier for me to think "how much time does she have left".  While I am being honest, there are days when her suffering is just so horrific that I wonder, "Which outcome is better for her?"  There have been days during the past 21 months that I have wondered which box to check off when they ask about 911 or comfort measures.  These are not the type of parenting questions I should be answering about my 21-month-old child.  This is not fair.  

There have been many positives that have occurred over the past 21 months, but none of them came without having to battle.  Nothing since her birth has been easy, and nothing about her future will be either.  Each day since her birth I have lived on a tight rope trying to balance.  The atmosphere in our lives each day over the past 21 months has been dictated by how she feels.  We live in a constant state of limbo while walking on eggshells hoping and praying that no matter what, a rebound will occur.  As I previously stated, today things are going well because things are going well for Sonzee, but it does not change the aching pit in my stomach of how different this life is from the one I envisioned.  I wish our family had never known of CDKL5, but as I learned in grade school about 22 years ago...life is not impartial.


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Comparisons

It happens all the time after I tell someone about Sonzee.  The innocent follow up question is always "what do the doctors say for the long term?”  This usually results in me telling them while the spectrum of her disorder varies, most children with her disorder do not walk, talk, or feed themselves on their own.  I always state we will do whatever we can for her, we are not saying never, but her disorder is limiting, in all ways.  This is then followed by the seemingly innocent comparison.  The one where the person is trying to maybe instill some hope into my life by saying that their child, a friend’s child, or a child of a second cousin twice removed has epilepsy and they are graduating from Yale or some other Ivy League college.  (To be honest, Ivy League schools are not really on my wish list for any of my children, but I digress).

While the statement seems "benign", what I would love people to know is that the comparison to your child, your friend's child, or your cousin's child twice removed, is actually unfair.  CDKL5 and many genetic disorders are limiting in the fact that they are genetic.  When a gene in a body is incomplete, missing, or has an error it has a catastrophic impact on all areas of development.  There is no medication that can fix it; there is no "system reboot" that can be completed.  There is absolutely nothing that can be done to actually make the bodywork normally.  Symptoms can be treated to an extent, maybe Sonya's seizures will one day be completely under control, but even if that happens, she will always have an abnormal mutation on her CDKL5 gene.  This means that the comparison might as well be apples to oranges.

We can spend thousands of dollars on therapies, we can place her in every therapy the world has to offer, and they will help her, but they will not ever make her act like or be a typical child.  When I am told that "doctors can be wrong", yes they can be, but not with CDKL5.  I wish people did not feel the need to create small talk by saying "you never know what might happen".  You are absolutely correct, I do not, however unless it involves a vial of CDKL5 capable of replacing the frameshift mutation on Sonzee's, than I am 99% certain that attending (an Ivy League) college will not be in her cards (but she will be happy to accept an honorary degree from one).

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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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Over thinking

When it comes to little bear there are few items that tend to fall in the "treat this as a typical baby" category.  Since Sonzee entered our lives, the decisions we have had to make have required an intense amount of deliberation and reevaluation to ensure the best answer was reached.  The topics tend to revolve around medications, feeding, pretty much everything that would involve keeping a child alive and giving her the best chance at living healthily.  Now that thankfully she is growing and thriving, we are actually being faced with the more typical baby/toddler dilemmas.  In turn, I recently realized (as in yesterday) that due to this way of thinking that we have been forced into, I still treat each item regardless of its importance in the same manner.

One of the more challenging things for me has been how I treat Sonzee as far as her cognitive capabilities.  Her body size and what she is capable of expressively has always been significantly younger than what her actual age is.  To give you a good idea, if I had to give her physical capabilities a respective age, I would say she is around 3-4 months old.  This is tricky on my brain, as I have to remember that she is actually 18 months old, and if you asked me what her cognitive age is, I would say it is definitely close if not right around 18 months old.  I know she understands what we say, and I know her challenges come from trying to express that to us.  She may not be able to control her body in the manner she wishes, but she knows what she wants and what she does not want and she does very typical 18-month-old things.

My problem is that because of this challenge I tend to overthink everything I do when it comes to her instead of treating her like I would if she were a typical 18 month old.  It is so hard for me to give her a consequence for her actions because what if I am wrong?  What if she doesn't understand when I think she does?  She demonstrates daily what she understands.  Yesterday specifically she was lying on her tummy, I referred to her tushy, and she wiggled it.  If I talk about her feet, she will attempt to grab for them.  I think this one of those gray areas of special needs parenting that I am going to need finagle my way through.  The best part of this...it is no different from being a parent of a typical kiddo.

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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!!!

Difference

I have a picture frame in the playroom with the a piece of paper that has the dates each member of the family was born before we had Sonya.  (I do need a new one now).  In the middle is a heart and on the bottom is the quote "what a difference a day can make".

When you have a typically developing baby so much happens in a day.   All of a sudden they are holding up his/her head.  You leave them on their tummy time mat or under the play gym to return to them on their side or rolling over.  Sometimes you notice the exact moment these events occur, other times you can't pinpoint it exactly.  

With a child who is not typical, it is easier to see the progress because it is little by little. Slow and steady wins the race, right?

It is actually really exciting to see progress unfold in slow motion.  It is part of the whole appreciate the little things concept.  Sure it is great to watch your typical children learn something like walking and talking, but it really is that much more amazing to witness someone achieve something you weren't sure they would be able to.  

Little miss Sonya works so hard at every day things.  Tasks most of us do without any effort.  In just 10 days Sonya has achieved so much!  Instead of me explaining her progress, I will let Sonya tell it herself.  

                       May 11, 2015

                     May 18, 2015

                         May 20, 2015

Oh Sonya your story is definitely untold!!!

It really is amazing the difference a day can make.