Monday, January 30, 2017

Sonzee's Walk

Sam and I have never sat our older kids down just to discuss that Sonzee's genetic mutation puts her at an increased risk for leaving us sooner than we would want, however, over the past 23 months various situations have occurred that have exposed their innocent and (should be) sheltered minds to a different reality than most children.  They are smart kids and notice everything, we do our best to discuss the most challenging topics when they are not around, but then there is just the reality of it all that cannot be hidden.  We encourage an open dialogue because we want them all to be able to feel comfortable and sort through their individual feelings in the way that best suits each of them, so we have no secrets.  While I took many classes in psychology, I will be the first to admit that this department is completely out of my league.

Last year prior to Sonzee's month long hospitalization, our two oldest kids had a debate in the back of the car over whether G-d allows children to die.  It was settled by explaining that we all go back to G-d when our mission is complete and unfortunately for some it is when they are a child.  I doubted the adequacy of that answer for a while, but never wanted the answer to backfire so I felt that for our religious belief that was the "safest" reply.  CDKL5 has forced our children to be exposed to nuances that other children are (thankfully) spared.  During Sonzee's longest hospitalization our oldest decided after a week she did not want to visit her sister in the hospital anymore.  I was so afraid of what the outcome could have been for Sonzee and that as our oldest got older she might regret the decision she made.  Despite me feeling torn on the matter, we supported her decision and did not force her to go.  Thankfully, the outcome was positive.  As we continue this journey our children get older and obviously, their understanding of the situation becomes greater, unfortunately for me I feel like I need a cheat sheet of the top 5 most difficult questions a child can ask (randomly) regarding their medically complex sibling so that I will be more prepared.

Yesterday we attended the Friendship Circle's Jonathan's walk.  Friendship circle is a fantastic organization that bridges special needs families and the community by giving "buddies" to special needs children.  They also host events such as Jonathan's Walk to honor a child who unfortunately passed away.  (I would highly recommend those of my friends who have a child with special needs to consider this organization near you).  Last night as Sam tucked in our oldest it was his turn to be faced with the challenging question.  (Yahtzee!).  She has a glitter tattoo on her arm from the walk and was looking at it when she asks, "Aba, when Sonzee dies will we do a walk for her?", Sam was caught off guard so he said he didn't want to talk about (I won't hold it against him, but we are creating a list of answers that explain how we all handle the situation differently and while we encourage questions and discussion sometimes a person isn't wanting to have the discussion right then.). Our daughter then continued to say, "Yes, Sonzee's walk, I like that, we'll do that".  


We can add this to the group of "things that are challenging when you have a child who has CDKL5 or a terminal illness and he/she has siblings".  I wish her mind did not have to have these thoughts.  I wish it was not such a "routine" type of thought, as if she was asking for a drink of water before bed.  I do not know what hurts me more right now, the fact that one day we might have a "Sonzee's walk", the fact that my 7-year-old is the one who mentioned it, or the fact that we are all exposed to this as "our life".

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Wednesday, January 25, 2017

"Accept"


I have struggled with the term "acceptance" since we were in the position of learning Sonzee had epilepsy and that it was the result of a CDKL5 mutation.  When you find yourself in this type of situation, your brain and your heart do not always align with one another.  You know deep down what the reality of the situation is, but you think that love or some special power will bring a miracle and the situation will go against all the negative odds.  As you make your way through the journey certain realizations occur that put a halt or just downright stop certain fantasy dreams you might have conjured up, and you start to "accept" that what the situation now is, is in fact, what it is.  A huge problem I have with acceptance is that my brain says, "if you accept this fate, then you have given up", so I find myself constantly torn.

As I have shared, Sonzee will be turning two in a matter of weeks (2.5 to be more exact) and she is unable to sit on her own, she is unable to walk, she is unable to talk, and she is pretty much unable to do most typical things a child turning two should be able to do.  I have put off the purchase of two "big ticket" items for two reasons, 1. they cost a ridiculous amount of money and 2. buying the item makes me feel like I am giving up on her ever gaining the skill(s) on her own.  For two years my brain has told myself that Sonzee would probably sit unsupported between 3-5 years old and walk after age 7 (if she was able to gain these skills at all).  For those of you who might not be familiar with the deficits of CDKL5, those are the average ages that these skills are mastered within the CDKL5 population, if they are mastered.  While I did not expect Sonzee to gain the skill earlier, I dreamed it would happen.  There are plenty of girls around her age with a CDKL5 mutation who are capable of worlds more than she is, so I grasped at the fantasy it might be in her favor as well.  That has not been our case.

Last night I stared at the computer and decided with her birthday money she was given by both of her grandparents it was time to by the FireFly GoTo Seat.  I bought it in purple, and that is important to note because color choices become significant in these situations as they are what make buying special needs equipment tolerable for me.  This is one of those emotional days on this journey as it breaks my heart that she will be two and is not able to sit on her on.  It is one of those days where I "accept" where she is at and I "accept" that this tool will make her quality of life so much better.  She will now be able to sit in a grocery cart, at the table at a restaurant, and in her siblings’ power wheels cars.  Simultaneously, it is also one of those days where I mourn, yet again, where this mutation has led her life.

In addition to the GoTo Seat, I decided to get the FireFly Upsee so that she can feel what it is like to walk.  This is a device worn by an adult and we strap Sonzee in with a harness and she shares the footpads with the adult walking so her body gets the ability to feel what walking is like.  I felt this was the perfect time because she has good head control and she does not weigh that much.  This of course was bought in pink and I am extremely excited to give her this new experience and a different view of her surroundings.  

Two years ago I did not know that the FireFly website existed.  I was blissfully unaware to what laid ahead on our journey of becoming parents of four kids 5 and under.  Two years ago I never thought about seizures, stomach motility issues or small bowel bacterial overgrowth.  I never knew the names and spellings of the most commonly used seizure medications or thought that I would know more about a medical condition than some in the medical field.  Two years ago the life I dreamed of having had different plans for me and so now I will continue to spend the rest of my years working on "accepting" all of the changes.

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Monday, January 23, 2017

Twenty Days

Twenty days, two weeks and 6 days, 480 hours, three different ways to countdown the amount of time remaining until Sonzee turns two.  A birthday I am so grateful to be celebrating, yet anxious about occurring.  Her outfits have been purchased and are sitting in our home, yet I sit here with a lump in my throat as I think about Sonzee as a two-year-old, a toddler; merely a year away from becoming a preschooler.  I know I should focus on the positive, but the fact is I am going to have a toddler who does not roll consistently, does not sit unsupported, does not reach out for me, does not talk, and does not crawl.  I am going to have a toddler who does not eat by mouth and who cannot chew solid foods.  My youngest is going to be a toddler and this is not at all how I imagined it would be.

As Sonzee gets older I must consciously remind myself that she is not actually a baby.  If it were not for the labels in her clothing or the fact that her birth certificate is dated 2015 this would be something I would argue.  I watched her in her bouncer as she was chewing on her hand and all I could do was imagine who she might have been.  I suppose some would say that is not fair, and there are some who are more capable than I am at accepting what they are given, but that is not me, at least not today.  I assumed things in all aspects would get more challenging as she got older, but it is one thing to assume and another to actually live it.  It is the latter that is far more difficult no matter how much mental preparation I try to give myself.

Another year of Sonzee's life is about to be in the story books, and it is one that I never would have imagined writing.  So many chapters were challenging to get through, and there are times I look back and wonder how we all made it to where we are today.  It is when I think of those times that I feel even more blessed of what we are about to celebrate.  Then there are the words that have yet to be written regarding her development, and it leaves my heart feeling weighted.  This is one of those times on this journey where the weight of it all sits heavily on my chest and makes it hard to breathe.  I sit here wondering how is it I will have the strength to continue doing this up and down on the see-saw for years to come.  I am sure as the years pass I will look back and think how naive I was to think that "that time" was the hardest.





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Wednesday, January 18, 2017

A tribute to Sonzee's oldest sister on her 7th birthday

I grew up as the middle child, smack in the middle of a big brother and a little sister, so besides the typical "middle child syndrome", I honestly do not recall ever being in the shadows to my siblings.  We all took the spotlight at one time or another and as a true testament to our great parents, they both attended everything that we ever took part in.  I never realized how lucky I should have felt nor how lucky I truly was to not have to live in the shadows of a medically complex sibling.

Today the baby girl who made me a ema is celebrating her 7th birthday.  I am an emotional mess as my heart bursts at the flashback of seven years of amazing memories flooding my vision as well as the heartache I feel over how much I have missed over the past two years of her life.  The sacrifices that have been made because of her birth order and thankfully fortunate health.  I think the life of a special needs sibling can be overlooked or passed over easily because "kids are resilient", but it should never be taken for granted.

As the oldest of four, the personal responsibility that our Laeya has placed on herself to take care of her siblings has been beautiful to watch unfold over the years.  She has always been a doting big sister eager to help, hold, and teach her brother and sisters.  She was given a special soul that shares a deep and unique bond with Sonzee that brings me to tears on a daily basis.  She ignores any grouchiness and just loves on her no matter the situation.  They have a connection unlike anything I have ever seen.  She tells us all the time that after she gets married Sonzee will come and live with her.  I cannot tell you how much joy and overwhelming peace it brings to my heart and mind because I know should this ever come to fruition, it will be the case.

While there is no shortage to the positive experiences having a special needs sibling has brought, there are similarly and sadly the same amount of less desirable situations.  No matter how much we try to protect her from the reality of the situation, she is not a baby, a seven-year-old "gets it".  There are situations she has sadly come to understand and expect and it breaks my heart that some of them are now routine.  No matter how routine it has become to miss holidays as a family or not be home for bedtime, she does not even show it, if that bothers her, she takes it all in stride.  She is one resilient, intelligent, sassy, loving, sensitive, and sweet girl.


My dearest Laeya, on today, your seventh birthday I want you to know that you have and will continue to bring a huge smile to my face and tears to my eyes as I watch you excel and grow into the beautiful person you are destined to be.  You will always be our Laeya bear, you will always be our first child, the one who we make constant mistakes on and learn from daily.  You will continue to challenge us and make us better parents (for that your siblings will thank you and probably hold a small grudge).  You will continue to outshine your previous performance in all aspects of life and I cannot tell you how much of honor it has been to be your ema over the past seven years.  I hope no matter how much physical time apart we may be forced to have over the years or how much time is spent "with Sonzee", that you truly understand that you are just as important and as valuable as her.  We love you and I hope this year will be your best yet!


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Tuesday, January 17, 2017

Planning

Something that I have had difficulty with since Sonzee has been planning anything.  Life has been handled in more of an hour by hour manner which is both helpful and stressful at the same time.  I miss being able to look at the future and mark things other doctors appointment in my calendar.  It is not just that we don't know how things will go with Sonzee, it is also the mere fact that I have limited capabilities of processing things in the future and or having the energy to plan.  However, currently things have been calm.  **I might regret writing those words or even thinking them, but it is our current "now" and it is the truth.  With that being said, I am actually planning for our summer relocation already and I couldn't be more excited!

In 2014 we started a summer tradition to spend a month in New York.  In 2015 we unfortunately had to cancel after Sonzee began having seizures and our fear that they could turn into infantile spasms while we were away.  After missing that summer away, we decided as a family that in 2016 we weren't going to let anything stop us from the much needed and wanted summer away. We thankfully were able to pull life together enough to escape to upstate New York Sonzee finally escaped from the hospital in June.  I am beyond stoked that our tradition will continue in 2017 (G-d willingly).   I have marked the dates on the calendar,  have begun to fill out camp paperwork, sent in our request for the rental property and have even began the initial phases of planning our mini trip at the end of July.   

I know that things can change in an instant, but I am taking full advantage of our current calm as well as my renewed desire to plan.  I don't know if planning this far in the future is my brains way of ignoring the decisions that need to be made within the next couple of weeks in regards to Sonzee's feeding tube and formula changes, but regardless it is a nice distraction.  I have missed my type A personality and I'm so happy she is back for a visit.  I don't know how long she'll stay, so I intend to exhaust her for as long as I can.

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Monday, January 16, 2017

Sippy cups and such

I've always considered us fortunate that Sonzee was our 4th child and 3rd daughter.  After all, that left us with three typical children and two other daughters who we could get all the standard girlie experiences with.  I have always felt that by having all four of ours we are "well rounded" because we get to experience all that parenthood and life really does have to offer.  In the past 23 months, I have never felt that I was missing out on anything because I have other children who fulfill those potential voids.  Our oldest is on the competitive dance team, she gives us a run for our money in all ways as we continue to use her as our guinea pig for learning how to parent.  Our son is into ice hockey and is our one big man on campus, so we get to learn the ropes of parenting a boy with him and all the thrills that are sure to come with that.  Our third has been rightfully nicknamed a spitfire and if you know her you are smiling at this reference because this just explains her completely.  A fun little independent ball of spunk who continues to show us we still don’t have a clue at this parenting gig.  With these three you can imagine the thrills and experiences we are getting as parents.  Getting to live through all my older children's activities, personalities, and experiences has always been "sufficient"...and then there was this past weekend.

When you have a typically healthy child who rarely gets sick, but then does and she wants to cuddle and you are already sick you just throw back the covers and invite her in.  As I laid in bed on Saturday morning with child #3, she asked me for a drink of water so I got up and went into the kitchen and found a Frozen themed sippy cup with a pink lid that I knew didn't spill or leak and brought it back filled with "cold water".  After she drank from the cup she started to talk.

M: "This is Laeya's Frozen cup, hers is pink, mine is purple" E: "Oh ya you are right this is her sippy cup" M: "Where is my purple sippy cup?" E: "You know, I am not sure where yours is" M: "Mine has Ana and Laeya's has Elsa" E: "When we feel better we will have to look for your purple Ana sippy cup".

Halfway through the conversation is when the new "aha moment" hit me.  It was as I continued to lay in bed while she drifted off to sleep that it really sunk in.  We can give Sonzee a device to communicate, and maybe (hopefully) she will eventually be able to say (or use her device to say) multiple word phrases to indicate her wants her and needs, but we most likely will never have a conversation about various sippy cups just because.  We won't be sitting in silence only to have it broken by a random conversation of her telling us that she would prefer a Shopkins or Pony birthday party in three weeks when she turns two.  There are so many conversations I realize now that I never thought I wouldn't be having with her.  I have always believed Sonzee's birth position to be a blessing, and yes there is still much belief in that, however, I never considered had she been our first or our only that I wouldn't be aware of some of the things that I would be missing.



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Monday, January 9, 2017

Going away

The last time Sam and I went away without the kids was for about 22 hours to watch the Florida State Seminoles play beat Auburn in 2014 at the Rose Bowl in Pasadena, CA.  Prior to that we went away for 36 hours to Los Vegas in 2011.  This week Sam has "surprised" me with a 43-hour vacation for my birthday. (I say "surprised" because he knew better to give me ample warning so I could process it all.)  We leave tomorrow after the kids get home from school and will be back on Thursday to pick them up.  This is honestly by far going to be the most challenging getaway to date because not only am I getting on a plane without my entire family, but my kids will not all be together.

We are so fortunate (and I am so grateful) to have the Ryan House here in Phoenix so that Sonzee will have the best possible care while we are away, however, I feel completely broken that in order for this to happen she will be away from her siblings.  It crushes my heart that this is how it must be, but she requires such a level of care that it isn't fair to place that responsibility on others.  I know that she will be loved on and she will not be neglected, in fact she will probably get more love than she is even ready for, besides, Miss Holly will be visiting her and I think I have even successfully conned her into sleeping over (the perks of CBD being the first and last medicine of the day given, hehe).  Miss Paige (maybe the kids) and Auntie A will most likely drop in as well, so she will have plenty of guests, but I can't help but feel hurt and upset that we are in a position such as this in the first place. 

It is challenging for me to clearly express my inner turmoil.  I want to pack for a vacation with my husband and not have to simultaneously pack one of our daughter's for a different one.  I want to be able to go away and have all my kids be together, there shouldn't be two different places I call to check up on my kids’ well-being.  I am scared to leave any of my kids, but especially petrified to leave Sonzee.  Sam keeps telling me "I deserve this", I wish I could really believe that.  I don't know if I agree that parenting a special needs child (or four children in general) makes me "deserve" anything, especially since the four children part was our choice.  While I can agree I most definitely could use this type of break, I wonder if my brain will actually allow it.  


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Friday, January 6, 2017

Resolutions

This morning despite Sonzee's friendly demeanor I decided to take her to the parent-to-parent group that meets on Friday's at the Foundation for Blind Children here in Phoenix.  Full disclosure, Sonzee really doesn't care for the introductory 30-minute music class and only 30% of the time enjoys the centers, because she would rather cuddle with Miss Barb or be pushed in her stroller by Mr. Justin until she falls asleep, so, we really go for me.  I have formed some amazing bonds with the Foundation staff and the parents I have met have become invaluable resources whom I feel like I have known my entire life.  There is a comfort to being around people who "just get it".  Today in the parent meeting we were asked what (and if) we had a new year’s resolution, and when it was my turn I replied that I don't/didn't make new year’s resolutions.  Later, as a general follow up question it was asked, "if you don't make a resolution, why?" 

Since this parent meeting to me is a safe place to let out all my thoughts I jumped on the opportunity to share my reasoning.  About three words into my reason I realized the tissue boxes located on the center of the table (that were kindly pushed to my direction) were going to be necessary to finish my thoughts.  I honestly cannot remember if I made resolutions prior to Sonze, but I am fairly certain it has never really been my thing.  In general, if I want to accomplish something I don't need a new year to make me do it, and if I have no intentions of doing something, then creating a "goal" isn't going to motivate my (lack of) interest in making the goal be completed.  Since Sonzee however, I have found that it is just far too painful to make any type of goals or plans on a broad level because then I am left with such a void and heartache within me if they are unable to be completed.


There are so many things that I wish I could do better, but I also know I don't have the energy or willpower to get them completed.  While it would probably feel rewarding if I did set my bar high and complete a task (such as making dinner every night of the week, packing lunches for the kids, being on time to appointments, you know do what every mom should because she is a mom), I am just don't have the wherewith-all to do them.   I am incapable of these "basic mundane tasks" since Sonzee's lengthy hospitalization in May.  Sure, it would be great to hold myself to a higher standard when it comes to being present every moment of the day, but my heart isn't always in that.  I cannot explain it, but my energy level is typically around a "blah".  Having Sonzee has broadened my horizons in so many areas, and living in the day to day with no set expectations is the only way I can survive.  I would rather withhold my participation in resolution making until it won't be setting myself up for failure.


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Tuesday, January 3, 2017

Fairy Tales

The thing that I love about fairy tales is that even though you know they are not real, you cannot help but smile and think about how amazing that type of reality could be.  Just close your eyes and envision marrying your true love, having an even amount of boy and girl children, never having any health or family crises, living in the perfect house, and just ultimately having the perfect life.  The thing I dislike about fairy tales is that they are not real and no matter what happens in someone's life it will never play out with only the benefits of a fairy tale life, think of "the Truman Show".  However, the fantasy idea of happily ever after in all aspects of life is still something to be desired.

Sonzee's diagnosis of CDKL5 and the reality of how strongly she is affected by her mutation, typically leaves me with less of an emphasis on real hope and more of a dreamers, on a good day mentality.  If I have too much hope it tends to be more depressing and challenging for me to deal with it all, especially when I see how children with CDKL5 mutations excel in areas I honestly don't even dream about because those are even too far from our reality to fathom.  There are moments and sometimes-even days where she responds better to the challenges and those are the days when the possibilities of a fairy tale life creep into my vision and almost seem tangible.  Then like a puff of smoke, the fairy tale disappears.


I am trying to not be sucked into the "Debbie downer" mentality, but day after day of physical and emotional difficulties eventually take its toll.  I sometimes imagine that Sonzee will not fall victim to the typical impact of having a CDKL5 mutation.  Maybe she will remain seizure free forever, or she will eat by mouth and be free of tubing.  Maybe she will one day sit on her own, crawl, or even walk.  Maybe I will fall asleep at night and not wake up in a panic that she was the newest victim of SUDEP (sudden unexplained death of epilepsy).  Maybe we will just be a typical family of six where our biggest challenges are how to juggle four children's after school activities.  Maybe...POOF...our life will not ever be a legitimate fairy tale, but I guess it does not even matter because it is all about the story.

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Sunday, January 1, 2017

Just be empathetic

We have been flying with children since our oldest was 3.5 months old, she will be 7 in a couple of weeks.  In those 6.5 years of traveling with children, I have had one experience that brought me to tears, and as of today one that made me so angry I said my sarcastic comment aloud.

I am unsure if it is only Southwest's policy or airline policies in general to only allow one person to preboard with the passenger who qualifies for pre boarding, so like on the way from Phoenix, today Sonzee and I boarded without the rest of the family.  I usually pick the same rows when we get on plane- behind the wing  towards the rear of the plane.  Maybe I shouldn't have done so, but I placed items in the row behind Sonzee and myself so the rest of the family could have a seat. Every Southwest employee saw me do it including a pilot who was flying as a passenger.  No one said anything to me about it.

General boarding began about two minutes after I secured Sonzee's car seat into the window seat and the first people boarded the plane, came by my row, and began to put their stuff in the aisle seat.  I mentioned that it was actually taken as I had to board early.  They muttered loudly, "oh, I didn't think that was allowed".  I attempted to explain that Sonzee has special needs and I had to preboard but my family wasn't allowed to board with us, to which they replied "well you can't save seats".

In my previous life I would have ignored them and shrugged it off, but I guess this is one of those new negatives I have adopted, the inability to let things go.  I looked at them completely annoyed and said "I didn't make the rules so I couldn't board the plane with my family", clearly they couldn't let things go either because I was then told "well then don't preboard", so I say "I got on the plane first because it takes extra time for my daughter" AND they still continue to mutter negatives under their breath, so I say loudly, "right because I chose for her to have special needs".  

I guess I should work on my ability to let the small things slide by, but my 4th child has special needs and I still don't want to accept that.  I don't want to be in this situation and these non empathetic people have reminded me of how much I hate this.  Why does everything have to be a constant challenge?  It's already frustrating that I have to use preboard, that we couldn't board as a family, that her feeding pump was already malfunctioning, and that our life is not normal.  Trust me, I would much rather not have this "benefit" and go back to the typical cattle call of southwest boarding.  I am so happy for these people that they have no problems in their lives that my saving seats for my family when the entire plane was otherwise empty was such an inconvenience to them.

I am just happy that they weren't standing by me in the preboard line when a boy who had pre boarding as well, walked to the front unaware of the wheelchairs, was told he could board after the wheelchairs proceeding to count the wheelchairs and because Sonzee was in a "stroller" went in front of us.  I smiled at him and let him go first.  I am pretty sure had it been these other people, their ability to cope with that would have been nonexistent.  At least a perk of Sonze is that no one can say I don't have a newfound appreciation for empathy.

Sonzee's Slideshow