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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I wish...

Sometimes I wish I was a better, stronger person.  The type of person that so many special needs parents are.  The type of parent who is content with their child's progress simply because she is doing her absolute best.  The type of parent who not only finds the blessing in the life that were handed, but also appreciates it to the fullest degree.  The type of person who is not bothered by the fact that other children with their child's diagnosis have it easier or are capable of so much more.  Sometimes I wish I was a better, stronger person.

Sometimes I wish I could look at this all as a "gift".  That I am fortunate because my life now has a purpose and plenty of people live their lives without knowing what theirs is or was.  I wish I was one of those people out there who not only says or thinks that, but one who actually believes it.  I wish I did not feel like I have absolutely no control over anything in my life anymore, but more importantly, I wish I was okay with that.  I wish I could look at this all as a "gift".

Sometimes I wish I had more faith and more hope.  I wish I had more trust that things will work themselves out, and maybe even in a positive manner.  I wish I believed that even if the outcome turns out not to be what I had planned or envisioned that it is what is for the best.  I wish I had it in me to be okay with it all.  I wish I could be like so many other parents who just accept everything is what it is.  I wish I had more faith and more hope.

Sometime I wish I had four healthy children and was never introduced into this world of special needs parenting.  I wish I was not aware of the intimate details of rare disorders that happen as "flukes" or any genetic mutation for that matter.  I wish I could go back to the way it was when I had that new parent ignorance and just the slight fear that a life like this could happen to me.  I wish I did not have to try to mentally prepare myself for all the possible turns this journey might take, because honestly it is futile and the preparation will always be inadequate.  I wish that things were different, and I wish I had four healthy children.

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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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Failure

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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Focus

In my opinion, one of the most challenging parts of being a mom is having the will power to not compare your child to another same aged peer.  It takes great skill to be comfortable with "accepting" your child the way he/she is.  To truly be okay with his/her strengths and weaknesses.  I think it is just one of those traits that is innate.  We want to be the best at everything we do, and so we want the same for our children.  I personally do not think it is wrong to want that, but I can say 100% that it makes things more difficult.

I personally was not the best at every activity I participated in as a child, so maybe that is why I wish my kids were.  For my three typically developing kiddos, whatever activity they are in, I just want them to do their best.  I do not feel like I have to defend their abilities.  In some activities they are better than their peers, but in others, they are not.  As long as they have fun and they try their best (at least when it matters), I am all-good.  I am always proud of them for what efforts they put forth.

Then there is the Sonzee.  There is always a difference in my mind when it comes to the Sonzee.  I know she tries her best, I know she works as hard as her little body can sans a complete (functional) CDKL5 gene; yet I always want more from her.  I can honestly say that I do not look at her same aged peers and feel sad about her development when compared to them.  After all, they have an entire gene that is usable.  That would be equivalent to comparing apples and oranges.  I smile when I see other children her age on my newsfeed who are taking their first steps, I know one day that will be Sonze, just not right now.  What I have the most challenging time doing is reading about what other kiddos her age with CDKL5 mutations are doing.

I know all children are different.  I know even within the disorder comparing two children would be similar to me comparing my other children to each other or their peers.  However, I cannot help but feel saddened and envious when viewing pictures of her CDKL5 sisters sitting, or working on crawling.  There is no solid research regarding mutations themselves and skill-sets children should be able to achieve.  I do know children with seizure control fare better than those who do not.  I know those who have deletions or insertions as their mutations have different outcomes than those with a frameshift like Sonzee.  There is also the whole mystery behind X-Inactivation (whether the healthy CDKL5 gene or mutated gene on either of the X chromosomes is being used in the body for a specific function).  I know children who have their mutation on the tail end of the gene have outcomes that are more “promising” as well.  

Even knowing that she will gain skills at a slower pace still has me saddened to see pictures of children with CDKL5 mutations her age performing skills now.  I wish so much that for her first birthday she will be able to sit alone, by herself, with no support.  I can pray and I can work with her all day long, but the reality is, those things still may not be good enough.  She has limitations, what they are exactly I do not know, but I know they are there.  

Hope and reality are two delicately woven strings intertwined that keep me dreaming yet grounded.  I wish I knew how to channel my vision, to focus, and be able to ignore the background distractions.  I wish I did not feel a tinge of jealousy when I read about the skills fellow CDKL5 siblings have mastered.  I am so elated for their parents, and for them, yet wish I could experience it myself.  I remind myself all the time that there are others who have children who aren't as fortunate as Sonzee, who I am sure feel the same way towards me (I don't judge you, you're allowed). 

It just plain sucks to want your child to be among the best when it is just not the case.      

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