3 years 17 days

It is 10:19pm on Tuesday night, Sam is on the couch, I am at my desk, and the only sounds we hear are the cat water fountain and the low hum from the oven.  As I pre-set the oven temperature to 350 and sprayed the aluminum trays with pam, I told Sam it has been 3 years since I started this tradition.  The tradition of baking cookies for the interventional radiology department at Phoenix Children's Hospital.  After (the first) perfect storm hit her little body, it was decided that Sonzee would have a PEG tube placed on March 10, 2016.   

I remember the day like it was yesterday. After her initial g-tube surgery placement pre-operation situation about 10 days prior turned into an epic failure, we were back for a slightly different procedure with a different team of doctors that would ultimately result in the same outcome; a feeding tube into her stomach.  I walked in with baggies of cookies, thank you cards, and Sonya's Story awareness cards.  As I handed the baggies to the doctors and staff, I half-jokingly said, "Here you go, these are please don't kill my daughter cookies".  I remember the half smile half shocked look on their faces when I said those words aloud.  Sam and I both gave a semi smile and little chuckle, but said, "No, but seriously, the last time we came to the 4th floor and she was going to have surgery for the gtube, someone/something almost killed her". 

Over the last 3 years and 17 days, the cookie bringing tradition continues to be strong.  At a minimum, every 3 months we find ourselves back among the familiar smiling faces who handled Sonzee with great care when she was just one year old.  One of the only nurses to ever be able to start an IV for Sonzee on the first try is in the IR department.  From PICC lines, to multiple NJ tubes, to GJ tubes, and other procedures as well, they have been there for her during some of her worst times.  We see the doctors and nurses in the back halls or while we wait in the waiting area when she is admitted and she is in other procedures.  Every single one of them stops and talks to us and asks how Sonzee and the family are doing.  For all of great times, not so great, and the times in between, we are so grateful to the IR department and I truly hope the gesture of cookies that began 3 years and 17 days ago adequately conveys our gratitude for the way they take care of our Sonzee bear. 

Sonzee's Spa

Yesterday was one of those days that was strictly driven by an excess of adrenalin.  It will certainly take some time to fully decompress.  It was a day full of abundant smiles, an overflow of happy emotions, and a couple of moments of hidden happy tears.  It was a day that you can only dream of experiencing but honestly as a parent you never actually dream of happening to your family.  Forget when the reality of it all sneaks up on you much like the situation that brought you to the same point did in the first place.  It is one thing when you tell your children to close their eyes on their birthday and "make a wish" while blowing out their candles, but when you dream up a wish that you know will bring an immense amount of joy to every remaining day of your 3.5 year old daughter's life from this point forward (no matter how many more there will be) it hits you like a ton of bricks when it comes to fruition.

The sheer magnitude of yesterday is almost too much to actually comprehend.  There is a 22,450lb aquatic training vessel sitting on a slab of concrete in our backyard.  Typing those words brings tears to my eyes and a lump in my throat.  I did not even process that we have a child who qualified for a "Make a Wish", and now I cannot process that when I look into our backyard there is now "Sonzee's Spa".  Much like the day we were handed a packet about epilepsy and told to take our then 5.5-week-old daughter, who was still having at least 12 seizures a day while on medication, home from the hospital, Sam and I felt completely overwhelmed with the spa, the spa manual, and the chemical routine we were given.  

I wonder how it is supposed to feel when you have a "Wish Kid".  We know the reality of having a medically complex child.  Nothing has changed in a day, but oddly after yesterday it weighs a bit heavier on my shoulders.  If I am honest every day that passes by I get a little more scared about how many that means we might have left.  I choose to keep these thoughts in the recesses of my mind, yet answer honestly when asked about her prognosis by others.  I know there are different philosophies of how best to "handle" this reality, and every parent who finds him or herself in this position has their individual way they feel is best.  For me it is to acknowledge the reality but not become suffocated.  I will compare my thoughts to the brown water in Sonzee's Spa.  Yesterday the water was as dark brown as possible, but the chemicals will slowly work amazing magic and by next week our little mermaid will find herself enjoying daily swims.  The threat of the water going brown will always remain, but we will do our best to keep it as clear as possible so she can enjoy herself as much as possible.  Yesterday the reality of what it means that my child is a "Wish Kid" hit me hard, but by next week the harshness will dissipate and left behind will be the same slight nagging presence that we have felt since April of 2015.

There really is no clear way to express the thoughts going on in my mind.  We will forever be grateful to Marquis spa's, Stafford Tower Crane, Make a Wish Arizona, all of our friends and family that were present with us virtually and in person, and everyone that played a role in making Sonzee's Spa become a reality.  

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Simplicity

On Sunday we take our older children (with Sonzee in tow) to their weekly swim classes.  During their session in the baby pool to the right of the "big kid pool" is the class for babies 2 months to 6 months old.  Little babies that are getting acquainted with the water while bonding with their mom or dad, or both.  Sonzee participated in this class when she was that age.  I have distinct memories of her sleeping the entire half an hour due to having a seizure before entering the pool.  The other parents would all smile and comment about how cute it was that she was able to sleep the entire time, they never knew why.  I enjoyed that class because it was a time when Sonzee was "the same".  It was a time that I could pretend that she was not developmentally behind.  It was a time that her seizures, CDKL5, and our lives were essentially a secret to outsiders.

Today as I was helping Sonzee's twin girl get dressed, I was standing right next to the baby pool.  I could not help but stare at each baby and his/her individual experience.  There were 5 boys and 1 girl in the class.  Mostly dads were present and they all appeared to be on the younger side of the age range.  The mom or dad was taking a cup with holes at the bottom and letting the water fall over each baby's head.  I took note of all the reactions present; surprise, eyes closed with a squirm, and some pure delight.  I could not help but smile.  It has taken me 8 months to feel ready to blog openly that Sonzee is going to become a big sister in the next 6-8 weeks.  I have had so many experiences along this journey that I have wanted to put to paper, but it was not until today when that first baby in the pool gave such a huge smile as his reaction to the water over his head that I knew I could do it.

Chalk it up to fear of opinions, fear of something going wrong, fear of comments, fear in general, or maybe it is just the uncertainty of how our family dynamic is about to change adding another child into the mix.  Whatever the reason, I could not bring myself to "admit" that our world, Sonzee's world is going to change and deep down I know it will be for the best but on the surface, there is an immense amount of fear of the unknown.  What I have missed most about having an atypical child is the simplicity that a typical baby brings.  Yes, there are sleepless nights, there is the typical parent worry, there is the typical unknown, there are the typical challenges a new baby brings to a family, yet after having a Sonzee there is an appreciation for the simplicity that I am praying to occur with this baby.  Fear is deeply etched into this hope of everything working out the way I am so anticipating.  Sometimes the fear is so suffocating it is paralyzing, not that this baby will have CDKL5 (yes, we checked the best we could for those of you whom I know are curious) but of every other rare situation that could possibly occur.  Once you enter the world of rare you realize how not so rare it is.  However, in the recesses of my mind and heart is just pure faith that this baby is exactly what our family needs to pull us all together and keep us grounded in a manner of simplicity I am ready to appreciate in a completely new manner, all thanks to Sonzee.  

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The evolving role of Mother's Day

From the time I was a little girl I have wanted to be a mom.  I couldn't wait to grow up, get married, and have a baby of my own.  When Sam and I first got married I (naively) thought that it would happen just as I had dreamt.  The first 9 months of our marriage turned out differently than I anticipated as month after month I cried never seeing one positive pregnancy test.  In May 2009 when Mother's Day came around I was so overwhelmingly excited for my friends who had been or would shortly be blessed with their new titles of mom, but equally heartbroken it wasn't my turn.  Sam bought me my first Mother's Day card with words of encouragement, but my heart was shattered.  Within weeks of that "first" Mother's Day I found out that my dream would be coming true.

In 2010 I was beyond fortunate to celebrate Mother's Day as a mom of a beautiful baby girl, my dream finally complete.  In 2011, I was not only a mom to Laeya, but I was pregnant with our second child.  I was so beyond excited to celebrate that day, but my heart broke for those who were still struggling to build their families.  I felt so fortunate to be where I was.  By 2014 I would celebrate Mother's Day as a mom of three, and by 2015, a mom of four.  The day always amazing,  but that year was my first time with the title of "special needs mom".  At the time that specific title was new and had little meaning to me, but as the years continue on the uniqueness of that title plays a bigger role.

By the end of the summer of 2016 Sam and I were surprised when we found out we were expecting baby #5.  We were surrounded by fear and uncertainty rather than the typical burst of excitement.  We were scared and unsure. What if the baby wasn't typical? What if the baby had special needs?  What would people think that we were chancing fate?  By the beginning of October those fears were unnecessary as we didn't see or hear a heartbeat, we experienced our first miscarriage.  We were both "at peace" not being faced with needing to make challenging testing decisions or playing the "what would we do if" game, and we felt thankful that G-d intervened how he felt necessary.

Today is Mother's Day 2017.  I am so honored to celebrate being a mom to four amazing children I have been fortunate to meet, yet today is the first day my heart hurts in a different way.  Based on my previous pregnancy experiences and my due dates, I would be holding or about to be holding baby #5.  I wonder if my son would have a brother or if he would still be the prince of the castle.  I wonder how I would manage being a mom to Sonzee and a baby, and I wonder how amazing it would be for Laeya to be the biggest sister of four.  I think about how fortunate I am that today I can snuggle my four awesome children because there are so many beautiful mom's I know who are unable to do that, but today is the first day I have given this topic enough thought to be sad the number isn't five.

Mother's Day to me isn't about being spoiled or wanting to be appreciated more than any other day.  It isn't about what gifts I get or if Sam was able to get to the store last minute to pick me up a card (that I honestly could live without).  For me, Mother's Day is about honoring what it is to be a mom and learning how to adapt to the various titles, curve balls, and ever changing roles that come with being a mother.  Today is one of those reminders of how mothering can be done in so many different and beautiful ways.  So if you are a pregnant mom, a mom to a child you didn't birth, or one you had to or have to share with someone else, a physically living child, a healthy child, a sick child, a child you never got to hold in your arms, or to a child you are no longer able to hold in your arms, today and every day you should be honored to be a mother, and I wish you the happiest of Mother's Days.

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2016

As I sit here with just two hours remaining in 2016 I am left wondering (yet again) how another year has flown by so quickly.  I swear each year the days must shave off a minute or two at a time because I remember writing my 2015 post like it was yesterday.  Another chapter of Sonya's Story is coming to a close as a new one is just beginning.  Similar to last year, as I sit here reflecting on the months that have passed I am unsure what to make of it all.  The year of 2016 has left me with memories to cherish and ones I wish would not be etched into my mind as if it was stone.  2016 brought about many new introductions, emotions, and experiences as we continue to navigate through the world of special needs.  It was also a year of tremendous loss for our CDKL5 family, and maybe 2017 will not bring the same nightmares to any of our families.

2016 was a year of learning the ins and outs of the gastrointestinal system.  In addition to Sonzee's battle with seizures, she spent the majority of this past year simply trying to maintain nourishment and battle being failure to thrive.  We learned about alternative methods of feeding such as Total Parenteral Nutrition (TPN), a Gastrostomy tube (G-tube), and a Nasojejunal tube (NJ) all of which would ultimately save Sonzee's life and maintain it.  2016 brought about the labels of gastroparesis and small bowl bacterial overgrowth, which now have her on daily antibiotics to restore the good gut bacteria.

For seizures 2016 brought about hypsarrythmia (an abnormal interictal pattern, consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity seen on electroencephalogram) and infantile spasms, resulting in 2 months of a high dose steroid treatment and side effects that were horrific and some she will likely never outgrow.  2016 introduced us to various formulas and diets and brought about a brief stint on the ketogenic diet, which we learned, was not beneficial to combating her seizures.  Thankfully, after multiple medication and various medical marijuana trials, we found Sonzee's magic seizure combo (for now) of Sabril and RSHO hemp oil.  She continues to remain seizure free 71 days 8 hours and 26 minutes.

In 2016, Sonzee encountered her most hospital admissions (6 times) and longest lengths of stays at a hospital (28 days), countless bouts of viruses, colds, and infections, and longest consecutive time spent on antibiotics.  Sonzee spent too many hours in pain and uncomfortable for me to want to remember.  Overall 2016 was not a healthy year for Sonze.

2016 was the year Sonzee's CVI (cortical vision impairment) improved from a 2/10 to 6/10, and she received her first pair of glasses.  While there are no huge developmental milestones for little bear, her core strength has improved tremendously and the bottoms of her feet have some resistance when they are pushed against.  She continues to roll in both directions and she is able to grasp hanging objects and hit them.  With the gains she has made this year there is no saying where she will be in the year to come.

As 2016 comes to a close, I am left with immense gratitude that Sonzee is able to physically welcome 2017 with us, because there are too many mothers tonight not afforded this opportunity.  To all of those whom I know, my heart is thinking of you and your baby's tonight.  2016 is not a year I wish to repeat, but as I sit here tonight, I am filled with a renewed sense of strength and hope for where 2017 will take us and I look forward to this chapter of Sonya's Story and hope you come along with us. 

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10%

Almost 18 months ago, our little Sonzee bear opened our world to all things CDKL5.  While approximately 90% of our exposure has been dreary, depressing, heart and gut wrenching, stressful, scary, and undesirable, there have been times along the way (10%ish) that have brought such extreme positive emotions that they are difficult to express.  Others who are on a parallel journey to ours with CDKL5 or another medical challenge might agree with me.

As you embark on this new life in a direction that was completely unexpected from anything you could have ever fathomed, the outside world starts to close in around you.  I hope that you have fantastic support from friends and family, but to be honest, there is no way they can truly understand your position.  They can offer you an ear to listen, a hug when you need it, and words of encouragement, but nothing replaces the support and camaraderie you find in the parents that are journeying right along with you.

Sam and I have both formed many online relationships with the parents we have "met" in our online CDKL5 support group.  We have both been lucky enough to meet different moms and dads over the past year and a half.  Similar to being a mom in general and having friends who are mom's "who get it", I cannot imagine being on this journey without having at least one other parent who truly understands what it is like to be in our situation.  Of course just like parenting in general, there are variations to each child's story, but to have others who have been faced with having to make similar decisions, makes the impossible bearable.  

I am so fortunate to each and every person who is on this journey with us, whether you are friend, or family, whether you live near or far, regardless if we have ever met in person or I see you often.  However, there will always be a special unbreakable bond with all of you who are in this journey because your child has a CDKL5 mutation and to all of you, thank you for making 10% of this journey absolutely incredible.

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Small victories

I often joke that Sonzee's pediatrician's office should create a standing appointment on either Monday or Friday of each week at 12 noon, because the last couple of weeks we have taken the noon spot on one of those days.  To say I speak with her pediatrician at least once a week would be conservative, as she so graciously answers my text messages multiple times throughout the week in order to try to keep Sonzee out of the potentially germ infested office.  As I have previously stated, we have an amazing pediatrician (it is okay to be envious).  Last week when the little bear started to act a little off the first thing I did was take her to her pediatrician on Monday.  

We decided that minus Sonzee's low-grade fever and little cough, that it was safe for her to ride out whatever cold she had without the aid of antibiotics.  Her chest sounded perfectly clear, she was tolerating her feeds well, and her older sister had a runny nose so we assumed it was just par for the course.  I left the office with the directions to keep an eye on her and to be in touch if necessary.  Every night for the past couple of months Sonzee has slept attached to a pulse oximeter that measures both her oxygen saturation levels and her heartrate.  Let's be honest, my neurotic self has wanted one of these handy little devices since I became a mother, so it was a small jackpot when I was finally able to score one for baby #4.  Once we got one, it was time to commence an attempt at a decent night sleep.  My lack of sleep since we got this was now no longer due to my fear of her stopping to breath in the middle of the night.

On Tuesday night, every couple of minutes the alarm would ring when Sonzee's oxygen level dipped below 90.  It was honestly getting frustrating hearing the alarm ring when it was only for 10 seconds or so and then it would pop right back up.  I ended up changing the settings to only alert me if the levels fell below 89 because that was the number it consistently was falling to.  On Wednesday morning I texted her pediatrician and asked her at what point I should put the oxygen on Sonzee.  I gave her an update on how things were and we were both still not concerned about how the bear was doing.  It was not until Wednesday night when Sam and I started to think that maybe things were headed in an unwanted direction.

It was around 1:30am Thursday morning when I realized I was not going to get any sleep because the alarm was constantly ringing.  How my dear husband sleeps through that sound is something I will never understand.  This time I watched the clock as time seemed to stand still because not only were the numbers in the low to mid 80s, but they remained there between 5-10 minutes each time they dropped.  Per her pediatricians directions, if the numbers were in the 80s for a significant amount of time (5-10 minutes) it was time to place the bear on oxygen.  It was at this time I yelled at Sam to wake up and told him that I thought it was time we hook her up to the oxygen.  I was not quite sure how to use the machine because when it was dropped off I had just gotten home from the hospital and my attention span for learning about an oxygen machine was nonexistent.  Sam got it set up and then we were all able to get some sleep.

By Thursday morning, her cough sounded awful and we attempted to turn off the oxygen, but her levels dropped immediately.  I panicked on the inside thinking that our Passover holiday was for sure going to be spent as a split family, with myself and Sonze at the hospital and Sam and the other kids at our friends' as previously planned.  I spoke with her pediatrician to fill her in on the situation and we came up with a game plan.  Sonzee started antibiotics and we continued with the oxygen.  

I have to admit that in the recesses of my brain I was fearful that this was going to be the cold that started her never-ending requirement of full time oxygen.  I kept that thought locked far away so it would not be one of those self-fulfilled prophecies.  Sonzee did look adorable even with the cannula in her nose, but I was not "prepared" for this to be her new every day look.  Sure, I became pretty swift with my maneuvering around with both her oxygen and her feeding tube bag while on the go, but this was not something I anticipated when she first showed signs of being sick.  We slowly began to lower her oxygen levels on Saturday.  When she was awake, she was able to go short periods without requiring any oxygen to be given.  I slowly started to breathe.  By the middle of the night on Sunday, she was removing the cannula in her sleep and was really aggravated that I was continuously putting it back in her nose.  I finally gave in and figured I would see what happened if I turned it almost completely off.  Sure enough, her oxygen level remained above 95, so I turned it off.  By Sunday afternoon, I was even able to say my previous fear aloud, as I realized my little bear prevailed yet again, and she was not going to require the oxygen 24/7...at least not now.

This little girl is definitely a force to be reckoned with.  She is a grizzly, polar, and brown bear all rolled into one Sonzee Bear package (complete with an adorable outfit and of course a matching bow).  She fights each little battle with such determination.  She is so strong and deserves such praise when she comes out victorious.  This cold could have easily sent us packing our bags to the hospital; the outcome could have been completely different.  Today we celebrate the small victory of being able to treat a cold at home.  We celebrate that we were and are able to continue to celebrate the Passover holiday as a family, all together, and in a home.  Today we celebrate another win for the home team.

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Thank You

It can be really challenging when you find yourself in a situation where you are accepting of generosity to communicate the appreciation that is being felt.  We have been so fortunate to be on the receiving end of so many selfless acts of kindness since Sonzee's diagnosis.  There are so many "thank you's" that need to be expressed publicly that today's blog post is dedicated to all of YOU.

When people ask me if we have help from our community the answer is without a doubt "YES".  To me the definition of "our community" spans greater than the physical confines of Phoenix, Arizona.  Our community of Sonya's Story tellers continues to grow and expand and with each growth we welcome new and amazing people into our extended family who offer assistance in various ways.  You are all so greatly appreciated.  You are all important.

Whether you "just" read my blog posts or like the pictures that are posted to her Facebook page, you are showing your support.  Whether it be a more physical assistance and you are dropping off dinners on a routine basis or randomly stopping by with dessert.  Whether you have taken the kids after school for a play date or dropped them off at school in the morning, you are amazing.  Each call, text, Facebook message, and/or email is appreciated so very much.  If you have purchased a Sonya's Story item from us or from one of our side fundraising campaigns that help us raise awareness of CDKL5 and simultaneously send money to the IFCR to help us find a cure, you are doing so much more than you think.  Each post that you share, each person you say the 5 character string of "CDKL5" to, brings new members to our family that will fill a new purpose.   Each day that you check-in on Sonzee is another moment that you are deserving of a pat on the back.

If you have a personal business and have donated your proceeds or a percentage of your sales, you are amazing.  If you pray for her health and happiness G-d is listening and he hears your prayers.  If you force me to take "me time" I am so very thankful for the respite and I know Sam feels indebted to you. YOU all are making this journey easier on us.  YOU are all making this journey bearable.  Because of all of you, we know we are NOT alone.  

To those of you who came to visit and sat with me at the hospital and those of you who were privy to seeing me fall apart in person you were fantastic at your "job".  To those of you who watch the bear weekly and love on her in person...that is so incredibly meaningful to us.  To those who offer medical advice and special needs wisdom to help us navigate the path, it is hard to show how much that has meant and continues to mean.  To those of you who message me with a recommendation, I may not share that we are trying them but trust me, even if others (myself included) might find them to be ridiculous, it IS being tried.  We are just so amazed by how much YOU all have made Sonzee bear part of your lives.  She is one special little bear to be able to snuggle her way into each of your hearts without much effort.  Thank you for making her part of your hearts and life.

It is extremely challenging to put into words the impact you have all had and are having on us and we appreciate YOU so very very much!!  THANK YOU, THANK YOU, THANK YOU...although that still doesn't feel like those words are enough.

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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.