Sunday, May 31, 2015

Tainted

One of my most favorite things to do as a mom is celebrating my children’s birthdays.  Let me be clear, this is not a let us only celebrate on the "day of" event at the Zaila household.  This is a minimum of 6 day celebration that we like to call "Birthday Week".   Lucky for our house we have two birthdays; one on the secular calendar, and one on the Hebrew calendar.  I hang balloons...I HATE BALLOONS.  I decorate chalkboards.  I make birthday wreaths.  I go ALL out.  If there is one thing I joke about, it is that when I have lived my last day here on earth and I am buried, while my children are sitting around talking about all the mistakes I made as a parent, one of them will loudly proclaim "She may have yelled at us, and wasn’t always nice, but man did ema do an amazing job celebrating our birthdays".

I LOVE how much my children look forward to birthday week.  How much they love the countdown, as they take a picture grinning from ear to ear in front of the message on the chalkboard sign in the playroom saying how long we have until the big event.  I love how much Bubbie looks forward to creating cupcakes for the big occasion, making sure these little morsels of heaven are created perfectly for her little grandbabies and transported with such care across the US.  I love how excited the kids get about blowing out their candles and eating the yummy cakes.  Birthday presents are not the focus, but trust me; the kids are not deprived of that necessary 50th train, 100th doll, or 4th stroller. 

Like I said, birthdays have been my thing.  Until CDKL5.  Gosh, I HATE this stupid string of characters.  This past week was our little Moonchacha’s 2nd birthday.  I went through the motions of celebrating her big day, but a piece of my heart was just not present.  I tried SO hard, I really did.  I went back and forth in my head with my thoughts, trying to get rid of the negative ones, pleading for them to go away.  But through it all was the voice… “What is Sonya’s birthday going to be like?” “Will Sonya be able to sit on her birthday?” “Will she be able to do her smash cake for those adorable pictures we all live for?” “Will Sonya actually care about her party theme when she turns 2?” With each ear to earn grin her sister gave me in front of her birthday wall, was the looming question, “Will she smile at the camera when we take her picture?”

As the thoughts continued to pour into my head, the guilt came as well.  I felt so badly for her sister that I wasn’t so overly excited about her party.  How is it fair to ALL of her siblings if I let the CDKL5 overshadow every event?  It isn’t. 


Like sour milk, every little or big thing in our house is overshadowed...it is now tainted.  Sure it is easy to say “Focus on the positives”, “You have control over your thoughts”, and other such phrases.  YES, I can control my thoughts; YES, I can put positives in the bank; YES, I could not let CDKL5 ruin my day; but the truth is...it wouldn’t change a thing.


Tuesday, May 26, 2015

Opponent

When I first began to date Sam we both completed the Myers-Brigg's personality profile.  One of the components revealed that I am a Decisive Introvert.  When it comes to dealing with change, if changes are suggested, I check them out against the big picture, and if they are necessary I will quickly move to implement them.  However, if changes are not a fit, then I will "dig my heels and become an unmovable opponent".  

I really respect Sonya's neurologist and I believe she is a great doctor.  She has spent years studying about the brain, how pathways communicate, and about a multitude of neurological disorders.  She has learned about epilepsy and knows about medications and side effects.  Sam and I have followed her lead thus far in Sonya's journey and we have listened to her recommendations regarding treatment.  We had been on the same page, until today.  

Today, her doctor asked me about Sonya's seizure activity and I told her how things have been going.  While Sonya is not seizure free, she is at a good place, having 1seizure every 24-48 hours.  From where we started, this is amazing.  Her neurologist went on to say we have room to move up on her medication, and should we give the newest one a little bump to become "seizure free?"  It might be unfair of me to say her neurologist has not researched CDKL5, however, by a simple google search you will find...

"The common features of all female patients with CDKL5 gene mutations included refractory seizures starting before 4 months of age"  

I had a multitude of emotions occur within me all at once. Anger, disbelief, frustration, sadness, panic, disappointment to name a few.  Then the questions flew into my head: Is Sonya just another patient of yours with epilepsy? Weren't you the one telling me, the less amount of medication a child can be on the better? Do you know anything at all about CDKL5? 

I listened to her backhanded justification of how she just thought we would want Sonya to be seizure free since she is doing so well and not having side effects on the medications.  I listened to her, nodding my head, and then I said "I have been on the CDKL5 support group, and the thing is...all the parents who have children who were diagnosed later in life, ALL state their one regret was giving their children so many medications so early on when NOTHING is going to stop the seizures".  Phew...Instant relief.

It was so hard for me to have a moment of clarity when she presented the information the way she did.  It was really difficult to tell her doctor, "Thanks, but no thanks". It is scary to advocate for Sonya.  I have not spent any time in medical school.  I don't know very much about the brain.  I don't understand everything about CDKL5.  I don't know what the future holds.  But I do Sonya.  I know she would be proud of her momma.  And I know her neurologist has met her unmovable opponent.


Monday, May 25, 2015

Help

I am not a person who has an easy time accepting help, and I definitely do not ask for it often.  I have always preferred to be independent, and do things on my own.  I am told one of my first phrases was "I do myself".  It was a great cause of contention between my mother and me while growing up.  It is not that I feel that asking for help is a weakness, but more that it exposes my vulnerabilities.  In my head if I am unable to do something for myself it somehow translates into being inadequate.  

Since Sonya was born our routine has been less than ideal at times.  Her little stint in the NICU and her PEMU stay had me away from home for two weeks within a month; missing her older siblings terribly, and dealing with all of my emotions and feelings essentially alone as Sam was holding down the home front while I was dealing with her at the hospital.  Sam has become pretty fluid with the tasks involved with being Mr. Mom, and while I am thankful he can manage, it has left me feeling guilty that I can't do it all.  

It was initially extremely challenging to accept offers of meals and playdates for the older kids.  My mind saying, "We chose to have four kids; we should be able to handle this situation."  When I was asked what people could do, I wouldn't have an answer; I just simply acknowledged the request by saying "thanks for the offer" and gave a smiley face.  

However, there have been people who have known better.  Whether they have been in a similar situation, or because they have a sneaking suspicion.  Those people that deep down know better, even if they don't even really know you.  Those people who have this quality that they just don't feel right unless they are helping others.  

To those people, I say THANK YOU.  Thank you for being persistent.  I know I have referenced it before, but really, thank you for bringing over the cookies, cakes, meals, and coffees all the time.  They are appreciated in a way that I won't ever be able to express.  While food items seem like an easy write off, know they are much more than that.  (Although one day soon I will no longer fit into my clothing...I guess I should say Thanks?) Thank you for keeping me in your daily thoughts and prayers.  On days when Sonya holds her head up really well, I attribute that to all the prayers G-d is receiving on her behalf.  Thank you for checking in so often, when I sign on to Facebook I always have a message or two waiting for me regarding Sonya and it is amazing so many of you care.  Thank you for your donations and overall support.  It is amazing how many requests I have received regarding Fundraisers to be hosted in Sonya's honor.  

What this has really led to is my thanks to you for helping me realize that accepting your generosity does not make me a bad mom and that I should not feel inadequate.  Your bigheartedness has lifted my spirit so I can be the mom I need to be.  It helps me stay refreshed and positive.  It is what keeps me going on a daily basis.  


We always ask people to help celebrate our happiest occasions with us.  We don't feel guilty for inviting people to our children's birthday parties or milestone celebrations.  We love the support we feel from these same people sharing in our joy.  These happier occasions do not necessarily equate to how great we are as parents.  They simply represent a time in our life that something was accomplished that should be celebrated.  When we find ourselves in a less than ideal situation, we shouldn't feel ashamed.  We should invite the same people we would in our happier times to help lift us up, to help us make it through.  I now can see that just like everyone WANTS to share in the happier times, they also WANT to be there for the not so happy times, so who am I to say no? 

Thursday, May 21, 2015

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.  

Monday, May 18, 2015

Dear Sonya

I am writing this letter to you with such fervor that you will one day be able to read and comprehend these words.  I want you to know what a blessing you are to our entire family.  We all love you so very very much.  It was a difficult task picking your name, as your father and I (as well as so many others) were convinced you were a boy.  You were named after pop-pop's very strong, smart, and loving grandmother, who lived a very long and full life.  Your first name is a Russian variant of the name Sofia, and it means "Wisdom", and your middle name Ahava is Hebrew for "love".  I have no doubt that you are one of the wisest people here on earth full of love and being loved.  I have no doubt that your intelligence is going to shine, that you will use your wisdom to be creative, and teach others, and you will be responsible for some amazing contributions to science.

While it has been a trying time for us all as we have been adjusting to your diagnosis, it is so hard for me to comprehend this situation from your eyes.  Like others who are having a difficult time imagining the predicament your father and I are facing, I can't begin to imagine how you must be feeling.  I ask G-d that you are not frustrated and that you are not upset being different.  I hope you see yourself as perfect.  You will have days where you may want to cry, know it's okay, let me join you, and we can wipe each other's tears.

I pray so hard that you will thank me for all that I demand of you on a daily basis.  I hope you know that we have your best interest at heart with all of our decisions regarding your medical care.  I hope one day all of these efforts will allow you to contribute to these discussions.

Please forgive me for the days that I tire easily and have a short temper, PLEASE know that I am not giving up on you, ema just needs a break to get her mind back on track.  I will have days of frustration and loss of hope, but those feelings are not directed at you, rather the situation.  Your great grandfather never liked us to use the word "hate", because "hate is a strong word".  I now see his point, as I have NEVER hated anything as much as CDKL5.  I have never felt so robbed by a string of letters.

Please know while it is really hard watching you have seizures, it is even more difficult to rationalize giving you so much medication that your little personality cannot shine through.  We are SO sorry we can't make them stop.  We will continue to choose YOU over medical interventions every single day.  I hope this will be your choice as well.  We will exhaust ALL interventions that will help make your life easier and make you the most happy.

I hope you know that your siblings love you so much! Your older sister loves nothing more than to cuddle and hold you.  Your brother loves to give you kisses.  Your oldest sister is one of your biggest cheerleaders, and prays daily that you will walk and talk so you can play with her.  I hope G-d hears her prayers.

I hope you are always comfortable with your life, and that you are happy.  I hope we find a way to communicate and understand one another.  I hope you never feel failed.

Rascal Flatts says it best: "My wish for you, is that this life becomes all that you want it to, Your dreams stay big, your worries stay small....And while you're out there getting where you're getting to, I hope you know somebody loves you, and wants the same things too."

I have no doubt that you will continue to amaze me with your determination and perseverance.  Please stay strong, don't give up on me, and NEVER give up on yourself.  As Miley Cyrus says "There's always gonna be another mountain.  I'm always gonna wanna make it move.  Always gonna be an uphill battle.  Sometimes I'm gonna have to loose."  It is not going to be easy, it is going to be a tough road, some days will be a struggle, but WE ARE GOING TO MAKE IT.

Love always,
Ema




Saturday, May 16, 2015

Challenges

There are experiences that we encounter throughout our lives that will be labeled as demanding, straining, or taxing.  For a toddler it could be putting shoes on the right feet all by him/herself, for a child it could be completing homework, for a teen it could be meeting curfew, for adults it could be related to a job or family life.  What classifies itself as challenging is variable and subjective by nature.

If the word challenge were a picture, for me it would involve a huge mountain with three flags.  The first flag would be at the bottom of the mountain, the second at the top of the mountain, and third on the other side of the mountain.  My goal would obviously be to make it to the third flag with the assumption that I have therefore solved my dilemma.  

I was working with Sonya this morning on her rolling from her back to her side to her tummy.  I place her top leg folded over her straightened bottom leg and each one of my hands on either her bottom leg or her top hip joint depending the direction she is going, and I wait.  She has gotten pretty good at this, and she knows when her body is in this position that she needs to move her upper body.  I can say without a doubt this "simple" roll over is a challenge for Sonya.  What I can also say without a doubt that my challenge is watching her struggle.  I am so frustrated for her.  I am so frustrated she can't do this on her own, and I am frustrated she is even in this situation to begin with.  As I continue my pity party in my head I ask myself, what is the point of this challenge?  What is the point in any challenge? What am I expecting to accomplish after I reach the third flag?

Simply stated, a challenge is a test.  It is designed to teach someone something about themselves they did not know.  Whether it is they have a hidden physical, mental, or emotional strength; a specific personality trait; or a hidden talent or skill.  A challenge can also bring out our less positive side by showing them they are more vulnerable or sensitive, or it can shine a light on that not so awesome personality trait we all have but wish we didn't.  


This challenge, and all the ones related to Sonya are definitely testing my patience and faith in G-d.  I think I might have asked G-d for guidance in these areas a time or two in the recent past.  (Remind me to be a little more specific when I ask G-d for assistance in the future.)  This challenge has taught me that I am stronger than I knew, that I am stubborn and won't take no for answer, that I will never give up, and that I am just human.  G-d knows all these traits and more about me.  He is giving me these challenges for me.  In a sense I am thankful.  I know in order to learn more about myself I am going to have to face a multitude of challenges.  I just wish Sonya wasn't the vessel.










Wednesday, May 13, 2015

Strength

Between Sonya and her brother, I think I slept 4 hours last night, and that was definitely not consecutively.  I woke up this morning as can be imagined, exhausted.  I packed up Sonya's sister to be dropped at her aunts as Sonya and I headed to swim.  We got into the pool and as Sonya was warming up, I was watching all the other children.  How easy it was for them to hold up their heads.  How cheerful their parents were when they were discussing their "typical mommy conundrums".  I used to be one of those parents.  I miss being one of those parents.  

I miss leaving the house not worrying about whether I packed Sonya's medications.  I miss not having to stress whether I actually gave her her medications or if the alarm was turned off prematurely by an assisting big sibling. I miss not having to worry when or if she is going to have a seizure or if I missed one shortly after I placed her into her car seat. I miss not having to wonder when my
emotions will get the best of me.  What I miss most, is not having to be so strong.

I have found that strength manifests itself in many forms.  The spiritual form of strength for me comes when I need to rely on G-d to get me through this.  How unfair I think that I have to rely on the one entity that is essentially responsible for this situation.   I do believe deep down that just like a child who does not understand why something is done for him/her by his/her parent that G-d knows what he is doing, but just like that child I am not happy about.  I would like to scream and shout and throw myself on the floor in a big tantrum.  But I can't.  

We as humans can only control so much.  In this case what I can control are my emotions.  I can put on my smile every morning and eventually I am happy just because I have told myself I am.  I get excited over the little things, but then I am only human, and the excitement transforms itself into anger, sadness, and/or fear.  I have to keep these feelings under control because I have 4 little children.  They can't be watching their mommy cry all day. I don't want to get angry at them when they spill a drink just because I am upset over something completely unrelated.  This is tiring.

I also have to be physically and mentally strong.  Do you know for every little head raise Sonya performs, I have to spend the same amount of time crouched on the floor, speaking in a high pitch voice encouraging her on like a high school cheerleader?!  Did any of you do cheer? It is hard!!  IT. IS. EXHAUSTING. 

I am continuously being told how strong I am.  Let's be honest, I am only doing what every other mother would do if put in the same situation.  It doesn't change the fact that being strong is emotionally, spiritually, mentally, and physically tiring.  But let's be honest, what other choice do I have?

Monday, May 11, 2015

Appreciation

When your child is born you wait eagerly for those first smiles, typically they happen between 4-6 weeks.  This amazing little being then begins to hold his/her head up not too long after, followed by rolling over.  He/She learns how to sit around 6 months, begins to crawl, learns to feed, pulls him/herself up, cruises furniture and walks, talks, even runs...and ALL of this typically happens within the first 12-18 months of life.  These achievements, while exciting to a parent the first time they occur, are expected.  It is not a matter of if your child will accomplish these amazing milestones; it is simply a matter of when.  

I can remember back to when Sonya's oldest sister was a baby.  I remember how neurotic I was about her meeting each milestone.  How worried I became when her same aged peers achieved these goals before her.  I can't tell you the amount of times I whipped out my speech assessments to ensure she was indeed on target.  When she finally reached a goal it was met with a combination of a sense of relief and looking towards the next one.  I can tell you that even though she took her time in meeting these goals, I never gave much thought to the science behind them.

Let's take smiling for example.  Neurons transmit signals from the brain's cerebral cortex to the brainstem.  Part of the brainstem’s work is controlling the medial lemniscus, which handles facial sensations, with many important facial nerves also emerging from this area.  The face then receives the message to smile.  When a person smiles, the brain releases chemicals that give rise to euphoric, happy feelings. This leads to more smiling, creating a positive loop of smiling, and the brain releasing chemicals.  If you actually think about it, there is a lot occurring behind the scenes for what comes across as a simple upward lip movement.  It is incredible, scratch that, it is a miracle that this can occur at all, much less when we are month old.

We can easily be distracted by watching another child complete a task earlier, or "better" than our child.  It can be difficult when a parent asks us questions about our child's skills.  We can feel self-conscious for our child, and inadequate as a parent.  We can get so caught up in the moment; we forget to take the entire picture into view.  

One of the reasons I am sure Sonya was brought into Sam's and my lives was to teach us to appreciate every little thing, whether big or small.  We have spent upwards of TEN minutes working with Sonya just to be rewarded with a half-moon smile.  Let me tell you, that little moon is cause for a celebratory dance over here!  That tiny movement takes such strength, hard work, and determination, and we let Sonya know how proud of her we are for it.  But on the flip side, she is 3 months old.  Most children her age have been smiling for 6-8 weeks already.  I could easily say, "That’s great, she smiled, now let's move on", but my new Sonya influenced self, celebrates each little moon she gives me.  I do NOT take any resemblance of a smirk for granted.  I am so in awe of ALL that is behind these expressions.

Sometimes it is not a matter of finishing the race first, but just that you simply crossed the finish line.  Sometimes it is worthwhile to stop, take a look around, and just smell the roses.



Thursday, May 7, 2015

Purpose

I have typically been a person among the group of people who have wondered why G-d has allowed unfathomable things to happen to babies and young children.  It is not to say that it is okay when adults or seniors fall ill, suffer catastrophic events or die, but as most people would agree, they have experienced "enough" life that it is more "acceptable".

I used to be on the other end of these situations; feeling a mixture of complete confusion, anger, sadness, and slight relief that it was not my child or experience.  Now, I find myself in the midst of it all.  At the center of IFSPs, routine (sometimes not) hospitalizations, a schedule worked around medications, and of course the unknown.  Yet, unlike I would have assumed I would feel, I have not (yet) found myself asking "why me?", or "what did I do to deserve this?"  I often wonder if I will as part of this process, or if I really am oddly at peace with this outcome.  

I know that G-d had a purpose when Sonya was conceived.  I know she has a responsibility far greater than us average Janes/Joes.  I actually have this odd excitement when I think how special Sonya must be to have been chosen to bear such a responsibility as she has been given.  How lucky we are that we were chosen to be her family.  

You hear this a lot from families whose children have debilitating and or terminal illnesses, and I'm sure some (if not all) of you are like how I used to be when I heard these statements, and are thinking, "Do these people really feel blessed? Are they just saying it?"

I have definitely had feelings of sadness that Sonya was chosen to be part of such a rare diagnosis.  I feel sad that she "won't be like everyone else", but when she is older and we ask her, I bet she will tell us she is really happy.  I bet she will tell us she couldn't imagine being like the majority.  She will probably have moments she wishes her life was not so difficult, but don't we all? Don't we all wish that at least for a day we could be someone else? The popular kid in school, the Olympian, the smartest kid in class, the president of the United States, the CEO of a company, the head of a Fortune 500 company? Don't we all wonder what it would be like to not be ourselves?

It would be dishonest to tell you that I don't wish I knew the purpose behind "why Sonya?" It wouldn't be truthful to say I don't sometimes have the "I wonder what it's like to have four genetically unaltered kiddos" feeling while scrolling through Facebook.  But then I look at Sonya and I love all the lessons she has taught me already in her short time with our family.  I love how much I am going to learn from her.  I love how much I am going to grow because of her, how much her siblings will be better because of her. 

I do whole heartedly believe G-d knows what he is doing.  We may not understand the reasoning because we aren't privy to flipping the pages of the book to the last chapter to find out the ending.  We just get to be characters that help make the story come to life, one chapter at a time.  Maybe one day we will know what G-d's purpose was, but then ask yourself this; would it really even matter? 




Wednesday, May 6, 2015

Potential

When I first met Sonya's neurologist she told me "I am not an optimistic person, I am realistic".  I remember telling her she would be a great fit for us; as Sam is the optimist, always on cloud 9, and I am usually the pessimist, always expecting a shoe to drop.  Since Sonya's diagnosis, my perspective on a lot of things has been altered.  I would now consider myself a cautiously optimistic person.

Lately I have been giving some thought to what the future could look like for Sonya.  I always put on my "hope goggles" and I can see her meeting different milestones.  The visions are typically blurred images of her so they do not represent a specific age/time, just that she is taking her first steps, saying "mama", "aba", and of course "no", that she is communicating, and she is playing with her siblings.  The hardest parts of my visions are the ones that happen when I forget to put up my guard.  The ones that creep in when I watch her two older sisters dance and for a second I picture all three of them in recital outfits, and sharing this love of dance as a common bond.  Then as quickly as that thought poppoed into my head, the unwanted, more realistic part of my brain screams "Realistically, Sonya won't be dancing.  She most certainly won't be invited to company tryouts".

It is with those types of thoughts that I feel the tears swell in my eyes as well as the punch to the gut.  I have to take all of my energy and shift my focus to how I am going to make sure ALL my children will reach his/her fullest potential.  I can say undoubtedly that Sonya will reach her fullest potential, whatever it may be.  As I have stated numerous times, she will have every opportunity that is out there that can make her life even a smidge more enjoyable and better for her.  But, are we making sure this is the case for her two sisters and brother?  It is interesting the ways that a special needs child can invade your thoughts.

All of Sonya's siblings have been in many activities.  Swimming, music, gymnastic, dance, ice skating, whatever Phoenix has to offer for their specific age, you can rest assured a Zaila is enrolled.  They are given the opportunity to find their niche, and if they decide they want to pursue an activity with more commitment, that choice is supported.  Regardless of logistics, we make it happen.

The following three questions have found a way of penetrating my brain:
What happens if there are limitations to allowing an ability to flourish?  What happens if those limiations are imposed by me as a parent?  What happens if me as the parent is holding back my children?

Before Sonya I never really looked at our parental beliefs and decisions as holding our children back. When her oldest sister began dance, I specifically chose a dance studio that held their end of the year recital on a Sunday just to ensure she wouldn't miss it.  She has missed dance classes due to Jewish holidays, and she has missed plenty of performances due to them occuring on Saturday's.  It was always a bit sad for me that she was missing out on these experiences, but at the same time, this is life.  Sam and I have chosen to live a religious Jewish life and so there are certain obligations we have to follow.  But now, my philosophy on life has been altered a bit.

Our oldest has the opportunity to try out for the company team at her dance studio.  The problem with the company team is they have competitions on Saturday's.  We can make a request with each venue that the team perform before or after the Sabbath, but nothing is gauranteed.  So I am left with the following thought.  "Sonya was born with a deficit in which her fullest potential will not allow her to be on the company team and here I have a girl where I (her own mother) could be preventing her from possibly reaching her fullest potential all because of religion".

I think as a parent in general we all worry about making a decision that may have a negative impact on our child(ren).  How do we balance our philosphies with theirs?  How do we make sure we provide them the best opportunities while still being honest with ourselves?  How do we ensure we allow our children to tap into their potential while not going against our beliefs?  I guess in a nutshell, how do we compromise as a parent?  How do we ensure these are truly compromises?

Maybe our oldest won't make it onto the company team.  Maybe she will.  Maybe she won't love dance as she gets older.  Maybe she will.  Maybe she will want to go Juliard.  Maybe she won't.  I could spend my day writing "maybe this", "maybe that", but the truth is, I won't know the answers to any maybe until they are no longer a maybe.  No matter what her choices are, no matter where her life takes her, what I do know, is I have to find a way for her to reach her fullest potential.




Monday, May 4, 2015

Early Intervention and Joy

We are very lucky living in the state of Arizona to have Early Intervention services given to children birth-3 that are in need of developmental assistance (I'm sure other states have this too).  Today Sonya had her first IFSP (Individualized Family Service Plan) created.  She will be receiving Physical Therapy as her team lead.  We created three goals for Sonya to work on.

1.     Holding her head up on her own 
2.     Tracking an object from side to side
3.     Grasping objects

We will meet again as a team in 6 months to review her progress (earlier if needed), but I am super excited to be starting on our way with measurable activities!

From what we have learned of CDKL5 and children's development, the more practice they have the better the outcome.  The more therapies, the better.  There is no doubt that Sonya will be the best she can be.  She will be taken around town to swimming, music, gymnastics, and any other activity she shows interest in and that she can simultaneously benefit from.  


As I have been watching Sonya in the pool, while she is doing tummy time, playing on her play mat, or sitting in her bouncer, I can't help but feel the same overwhelming sense of joy that is brought to a parent by their child.  She tries all the time to be her best.  She works so diligently to hold her head up, as she tries to smile, as she tries to hold onto toys or a finger.  She brings our house so much happiness, so much pleasure.  I am looking forward to her next IFSP meeting so we can discuss how Sonya has met her three goals, and how she is ready to conquer more.  I can't even envision the sheer amount of joy that day will bring to me, as well as all the others that will lead up to it.  Today has been stored in the bank.






Saturday, May 2, 2015

Denial

There are times in all of our lives where something happens and it is just too difficult to accept.  How do we wrap our heads around the fact that someone close to us has cancer?  A baby died or is dying?  Someone is really sick?  You or someone you know has suffered a great loss and you just don't want to acknowledge that it is in fact true.  How many times have you caught yourself thinking or saying "I can't believe that happened?"  Denial is simply a defense mechanism.  

I know the textbook definition of CDKL5.  I see older children who have this diagnosis, and they definitely follow the texts.  I follow parents in the online support forum and see their children's daily real life struggles.  But how am I supposed to be able to accept what the future holds when I look at Sonya and she appears to be just like most 2.5 month old little girls?  From the outside she is perfect.  There are no physical markers.  Her eyes are the bluest blue like her oldest sister.  She has fair milky white skin like her brother and father.  She has the yummiest tummy and cheeks.  Her hands have all 10 fingers, and her feet have all 10 toes.  She has started to make little baby sounds, and she cries when she is hungry or upset.  She has started to smile more....does this all just go away?  

It is simply too difficult for me to accept that her fate is sealed.  It is much easier to just be in denial.  People might say it isn't good to be in denial.  If a person is in denial they are ignoring the reality of the situation.  An alcholic that is in denial won't get help, because they don't see a need to.  A victim of domestic violence might deny that they are in a bad situation, so they won't seek help.  Using those examples in my situation would transale to: I do not see Sonya following the textbook definitions of CDKL5 so therefore she won't.

It might take years, but Sonya WILL walk.  It might take decades, but Sonya WILL speak.  She WILL communicate.  She WILL have some seizure control.  She WILL contribute to society.  So, if me being in denial makes all these possible...I guess I should just set up a tent and crawl inside.

Sonzee's Slideshow