Friday, August 28, 2015

In 5 years

Last week our oldest daughter went to her first day of Kindergarten.  She was so excited she was literally waking up for at least 4 days prior asking me if today was the day she was going to go to school.  I was so excited for her as well.  In my mind Kindergarten was no different then her going to preschool; except this would be her first time attending school all day and she would be wearing a uniform.  I knew she was ready and so I happily counted down the days with her. 

Finally the anticipation was over and the day came.  She got up before her alarm clock, she got dressed in record time, she did all of her morning routine with excitement and it was time to drop her off at school.  We walked her into her classroom, and I am not sure what exactly is in the air in a kindergarten classroom, but all of a sudden my vision became blurry.  Maybe it was one of the students who was crying for his mom that got to me?  Or was it simply that my baby girl placed her backpack and lunchbox into her cubby, found her desk with her name on it, sat down and began to color with the biggest grin, all while holding her head up proudly?!  (Oh to be five again.  If I could freeze time at any age, five has always been the age I would go to).

My heart was so excited for her, but at the same time I felt so many other emotions.  We quickly left and I was so proud of myself for holding back the potential waterfall.  We dropped our son off in his preschool classroom, and those darn tears were back,  but again I pushed them away.  As we left, Sam asked me if I was ok...and I nodded "yes".  I was more than ok.  I was so excited for both of my kids for their new experiences they were going to encounter.  It was just a bit sad that I wouldn't be there to experience them.

Later during the day I looked at all the pictures I took of them in front of our chalkboard holding their grades on a sign.  That is when the thought snuck in...will Sonya go to school?  If she does, will it be to the same school that the other three will go to?  Why does it matter if she goes to a different school?  I am aware any of our children could end up in different schools, so why be worried about it?!  What will she look like when she has her sign?  I can already picture our middle daughter holding her school sign next year.  Her dark hair, brown eyes, and little face shining brightly.  Her smile is one you can see for miles.  She will hold her sign proudly and be so excited that she finally gets to stay at the same place she has been to drop off and pick up her brother and sister. 

When I look 5 years down the road, I don't have a clear picture of how Sonzee will look.  So many unknowns, so many paths we will have to cross before then. Hopefully we will have many many milestones to celebrate with her along the way.  Regardless if she is sitting, standing, or physically supported you can bet it will be in front of a chalkboard wall, next to her proud siblings with a sign that says Kindergarten.

Wednesday, August 19, 2015


As a parent we don't want our children to be in any pain, suffer or face any problem.  No matter the situation, it is our natural inclination to jump right in and try to find a resolution.  In nine out of ten times the solution is easy.  A bandaid for a cut, a tissue for tears, antibiotics for a cold, a hug and a kiss, or a gentle pat and the words "you're ok".  Then there are those times that aren't that simple.  When you have a toddler that you can't understand and you have to perform what feels like a triathlon combined with a doctoral program just to figure out the best way to console him/her.   You have tried the bandaids, the hug, the kiss, but nothing seems to be working so you offer a sippy cup and randomly they have no idea why you look so frazzled because all is right in their little world.  

With every decision we make we are doing it with our specific child in mind.  How can we make his or her life better, more productive, just plain easier?!  Sometimes our choices are exactly what 99% of other moms and dads would do.  Sometimes our decisions come with outsider opinions or bias.  Sometimes we just don't simply care what others have to say because we know what is best for our child.  

A lot of factors can influence our decisions.  We may feel judged, think we are judged, or be fearful of the judgement that may come along with our choices.  We may let that fear determine our course of action.  We may be nervous of the outcome, we may be scared, we may  simply be unsure of ourselves, and full of doubt.  So what then do we do?

Growing up my mother would always say, "you make the best decision based on the facts you have at the time" (I may have mentioned this in a previous post).  I like to refer to this quote on a daily basis when it comes to our decisions for Sonzee's medical care.  However, lately I have found myself at a crossroads.  

We all know the controversy behind medical marijuana and its impact on seizure control.  If you know Sam you know if we never had a Sonzee with a mutated CDKL5 gene we would never be entertaining the use of marijuana.  If you have talked to Sam recently he will be the one to tell you he went to Harvest of Tempe and we have Charlottes Web oil (from the documentary) sitting in our fridge.  He will be the one to tell you it is actually me who has not given the green light.  Why you may ask?

1. It would mean adding a third drug to her daily routine
2. It would mean we would have 8 medication alarms throughout a 24 hour time period
3. It would mean she might have seizure control, but it's not a guarantee.
4. It would mean we have now used our last gun in the arsenal (without using other pharmaceutical medications).

While our neurologist is extremely excited, I am petrified.  What will people think of us as parents? Why do I care? What if we use it and it doesn't work? What if it does? To quote one of the most famous antagonists of Disney, "life's full of tough choices, isn't it?!"

Thursday, August 13, 2015

Dust Storm

I found myself and the kids caught driving through a dust storm on Tuesday.  I didn't receive the weather alert on my phone until after the rain was pouring, the wind gusts took down tree limbs, and we had arrived at our destination in Scottsdale.  The alert went off on at least 6 or 7 other phones simultaneously, and I gave a quick chuckle while thinking..."thanks?!"  The alert is kind of comical in its own way, as I was definitely well aware of the weather this morning as I loaded the kids into the car. The sky was a dark greyish brown when I looked toward the east.  I could literally see the wind picking up and dust flying parallel to me.  I took a moment to really appreciate all the actions of the storm; how fast the dust was flying, how gusty the wind was how the sky opened up and cried.  In a part of my mind I wondered if G-d was simply having a bad morning.  Did he just need to let it out?

We all have days where we push our feelings to the side.  It can be easier to do that then to simply deal with it all.  Maybe it's that we worry that we will be perceived as weak.  Maybe it's that we don't want to make ourselves a burden to others.  Maybe we aren't sure people really want to know what we are actually thinking and/or feeling.  There are those days that we just keep up with appearances.  We follow schedules, and daily routines.  We smile, and move through the motions.  All along a storm is brewing within us.  We never know how much will be too much, what is going to tip the scales.  We just go with the flow unsure of when all of our pent up feelings and emotions will need to be freed.  

Then it happens.  We get in a fight with a loved one.  Our child forgets his/her sippy cup in the car.  You are running late for work.  You are angry over situations you have no control over.  Your thoughts run wild and rampant.  You can't make sense of anything, and you just need to have a release.  Everything has built itself up so much that there is just not one thing more you can take.   You feel like a train letting off steam.  You may cry.  You may scream.  You may do both.  It isn't always rational, but it's necessary.  

Maybe right before it begins we get an advanced warning; but usually it happens so quickly that it isn't until we review the series of events that led up to the storm that we realize hindsight is 20/20.  We just have to hold on until it passes and go with it.  We have to acknowledge the feelings and allow them to be felt.  We have to appreciate the chaos and disorganization that may occur and embrace the beauty that will follow.  Because after every storm, the clouds eventually part, a ray of sunshine appears, the ground will dry, sometimes a rainbow will present itself and we know everything will be all right.

Monday, August 10, 2015

What's in a Name?

We have been told that having a diagnosis for Sonya this early is so amazing.  Being that I have not had to sit awake at night wondering if her Seizures will disappear by their own volition, I would have to agree.  No, I have not had to stress and anguish over why her development is not on target.  I have been afforded the opportunity of diving head first into therapies to keep her as much on track as possible.  However, the problem with having a diagnosis so early is you find yourself, and others making statements such as, "She is doing great for having CDKL5", or "Most kids with CDKL5 don't talk, eat, or feed themselves", or "These are the things you can expect with a kid who has a CDKL5 diagnosis".  I am sure this holds true for any parents who have a child with a specific diagnosis.  The problem with having a specific diagnosis so early is that you have to literally FIGHT to NOT let the diagnosis define your child.  Shakespeare had it right when he penned Juliet's words. "What's in a name? That which we call a rose by any other name would smell as sweet." 

There seems to be a classification system for all children, typical and those who fit into a specific diagnostic category. I feel like it's rare in any instance that we actually see a child for who he or she truly is.  We as a society tend to lump children into categories based on physical appearance or their shared characteristics.  The geneticist we saw even made the statement that a syndrome is "found" when many children are presenting with the same symptoms/characteristics.

It is great to use a diagnosis as a target for addressing skills or starting point for parents to gain comradery, but it is unfortunate when we use a diagnosis to define our children.  Sometimes knowing the "typical outcome" of other children who share the same diagnosis can be catastrophic.  If a parent learns of this diagnosis and they already feel defeated, this can add a level of complacency, of not bothering to work on anything because "what's the point?"  It can lead to the absolute opposite of what we want to achieve as parents.

Each child/person with a disability has a soul and a purpose just like those of us without a physical, mental, or emotional disability.  Everyone is required to complete the puzzle.  We must focus on the child as a contributing member of society, and not let the disability dictate our actions towards him/her.  It is our job as caregivers, family members, and friends to help the person reach their highest potential and fulfil his/her mission regardless of the obstacles presented by the disability.  

It should not matter whether our children have a genetic disorder! It should not matter if they have Cerebral Palsy, Down Syndrome, Hypertonia, Epilepsy, or Spina Bifida!  It should not matter if they have a physical, mental, or emotional difference.  We should always remember to put our children first, and if at all, their diagnosis second.

Friday, August 7, 2015


I learned about counseling families in graduate school.  How each family that has a child diagnosed with a hearing loss or a disability that is taking away their child's potential to talk or communicate among other things, has to go through a period of grief.  

When Sonya was diagnosed with epilepsy I told myself it was ok to grieve.  It was normal to mourn the loss of "my perfectly healthy baby".  So many emotions came flooding all at once.  Fear, panic, shock, disbelief, sadness.

I remember the day before we learned of her CDKL5 diagnosis I was talking to my best friend.  I told her that Sonya's neurologist called and told me she had news she wanted to tell us.  I remember telling her (trying to hold back tears) that it couldn't be good...and what if Sonya never knew me?  What if days went by and she didn't even know she was alive? What if she was a baby forever?

I could tell she too was holding back her tears, but she managed to say "You know Randi, how lucky you will be if she is at home with you forever.  A lot of people have a difficult time with their kids growing up and moving out, and you'll get to keep Sonya at home forever."  I have to be honest, 1. I hadn't thought of it like that before and 2. I wasn't really ready to accept that...I was so scared of that actually.

Fast forward a couple of months.  I went to the amazing parent support group at the AZ school for the deaf and blind.  There are kiddos who have all different diagnoses, and parents of kids who vary in age and stage in their individual disorders.  There was a new mom who expressed her same emotion of sadness at the fact that her daughter would most likely be a baby forever.  I nodded along with tears in my eyes.  I understand you my eyes said from across the room.  There was a husband and wife team there as well.  Normally the husband is unable to come, but this time he came.  He said "you know, we have 4 kids, our older kids, they don't want to cuddle, they don't want to be near us sometimes, they are grown up...but "Sarah" (change of name for privacy) she is our baby forever.  We appreciate so much more because of her.  We see more beauty because of her.  She is a blessing.  When we want to cuddle, we have her".  This time again with tears in my eyes, but with a crooked smile from across the room, I nodded, as if to say, "what he said".

Monday, August 3, 2015


When I first became a mom back in 2010 I had no idea what I was doing.  Our first daughter came after a pretty stressful, high risk pregnancy, and so by the time she was born we felt a sense of relief that she made it and was healthy.  I remember how we had spent weeks taking a child birth class, made it through an extremely eventful 5 day induced labor/delivery, and then were given this little 5lb 5oz beauty and in a split second we were supposed to know what to do.  I distinctly remember thinking..."now what?!?".  My mother came to help, my mother in law came to help, my best friend came to help, and slowly life became less scary and more manageable. 

18 months later, our little man came into the world.  Another high risk pregnancy in the books, and this time we learned our son would be born with a congenital heart defect.  I remember being scared and numb at the same time.  Thinking back, I don't remember wondering how it would impact our first child or us, we just went with the punches.  Thankfully his NICU stay was brief and we came home within 3 days.  Now life with two kiddos was crazy at first.  While I was pregnant I received the best advice from a mom in one of our daughters activities.  "Having two children is crazy, and don't expect things to settle down for the first 5-6 months".  During the first 5 months after our son was born I would remind myself of this saying all the time.  I was petrified to go out with the two of them.  I didn't quite get how to juggle two little kids.  Then one day, it happened, and I looked at my son and he was 6 months, and I said to myself "AHA...yup, I got this."

22 months after welcoming our son, our 2nd daughter was born.  We were so nervous throughout the pregnancy wondering how on earth were we going to raise 3 kiddos 3 and we are crazy we thought.  I had sheer panic. We didn't even deal with the pregnancy, only talking about it when people asked us, and figured when the baby was born we would face the facts.  Then our little fireball was born and we learned to literally juggle.  Scary as it was, we eventually got into the grove.  Life became "easy".  So easy we thought, "what's one more?!"

Another 20 months later, Sonzee was born.  The number one question I have been asked by those who know about her diagnosis is "how do you do it having 3 other children".  It comes down to one word: "balance".  The same balance I had to find after each child was added to our family.

Having Sonzee and 3 other kiddos to me is the same as having just 4 children.  I can tell you that the 3 other children make a lot of things easier for me.  For example,  it is much easier for me to see other children Sonzee's age and not get upset about her development...I have a daily reminder about what's typical.  With 4 kiddos schedules to balance, I don't have the time or strength to spend it dwelling on things I have no control over.  

The challenges I face are similar to every other "mom of 4".  Each of our children has their own special and unique needs.  They all require attention and love.  They all have activities and appointments to go to.  A family of 6 in general requires planning, organization, and balance.

As Sonzee inches closer to being 6 months, even with everything going on, I too am inching closer to achieving that "sigh"...that overall feeling of being in balance where I realize I can do this.