Preparations...continued...

I sat down to write this post last night after the word "preparation" kept running through my mind.  I knew it would be the perfect title for what I anticipated writing, but I also felt like I had used the word before as another blog post title.  Funny enough that only a couple of months after I began blogging in 2015 my first post about preparations was written, and 3 years and 4 months later this post rings eerily true and similar as we embark on another path of uncertainty.

It is a weird experience to keep repeating similar but completely different situations.  The groundhog day effect aura lingers but each challenge, each discussion, and each decision is ultimately independently determined despite the influence of the past.  I find it fascinating that no matter how many times we go around this merry-go-round I am no better off prepared to make any of these life altering decisions.

Every day this week I have been playing out the best case scenario of what could come in my mind.  I am partially proud of myself for (apparently) still having some hope and faith I was not aware I had, and partially annoyed with myself for even attempting to think that things could actually work out in reality how they are in my dreams.  I do not have the stomach to even consider the worst case of these decisions because it is just too much for me to even process.  Too loaded.  Too much guilt.

I just keep telling myself that we are doing what she needs.  We are making our choices based on what we feel is best for her overall quality of life and well being.  We are making our choices with HER best interest at heart, and so to quote myself, "[I] have to trust myself and my knowledge, and pray that I have enough of a foundation to get it right."


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Tug of war

We finally toured Sonzee's preschool yesterday.  I say finally, because we have known since she was 2 months old that we wanted to send her to this school.  We have attended the family program on Friday's over the past 2 years, but have never actually set foot on the other side of the double doors.  We have one remaining meeting in 13 days that will make this next step our official reality.  I am filled with mixed emotions as my baby girl is getting ready to enter her first school.  On one hand they are the same emotions that have filled my head and heart as her three older siblings took these same steps, on the other hand, they could not be more different.

I feel like my mind is separated into two sides and there is a rope attached to both sides, for every happy emotion there is one that makes my heart sad, and I am being pulled back and forth between them.  I am so excited that Sonzee will have the ability to flourish in a new environment, but it is not in the same environment where her siblings are.  I am so thankful she will be in a classroom that is tailored to meet her needs, but she will no longer be home with me every day.  Her classroom while likely to be amazing and will provide her with the tools she will need, is not a typical classroom in any manner.  I am so grateful for the opportunities this school will undoubtedly provide for her and to her, but they are not the opportunities parents wish for their children to have to experience when they envision their schooling.

We walked from classroom to classroom, looking through the glass at the children as they learned.  We started by seeing those children who are developmentally the oldest; smiles across their faces, lights bright in the room, sitting around the table enjoying their snacks.  Multiple teachers and aids at their side helping them with their snack time activity.  As we continued our tour the lights in the classes were lower to help with seizure activity, and the centers were slowly replaced with several types of equipment.  Sam joked that there were easily thousands of dollars in equipment in one of the rooms.  My heart bursting at the idea of her getting to experience incredible opportunities that insurance would never allow us to do at home, but simultaneously hurting at the fact that she needs all the several types.

My baby girl is no longer a baby for all intents and purposes, but she will not be walking into her first day of school.  She will not require a teacher to hold her while she kicks and screams begging me not to leave her.  She won't come rushing back to the door or look at me with a face that pleads with me not to leave her with people she hardly knows for the day.  She won't give me kisses or huggies or tell me she loves me, to have a good day, that she will miss me or even say good-bye.  I won't look through the glass window and see her distracted by an activity, so she doesn't realize I am gone.  She won't glance back to see if I have walked away.  All the first days of school experienced since 2015 that brought me tears as I wondered how Sonzee's would go are about to come to fruition, culminating into the biggest game of tug of war.

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When panic sets in

I was sitting at home this morning when the text message alert came through my phone.  It was from a close friend of mine.  Someone who I have gotten increasingly close with over the past 9 months, as our daughter's both have a CDKL5 mutation.  Our daughters' like all of the children affected by this merciless string of characters, vary greatly in skills and overall path they follow, yet as parents it always boils down to us having the same emotions and a level of understanding that only other mom's and dad's on this journey can relate to.   There was an urgency and panic in her text that was palpable even though texts can sometimes leave the reader uncertain, there was no uncertainty.   CDKL5 has a way about itself, it can take a child who is doing absolutely amazing (in the world of CDKL5) to death or close to it in a matter of moments, imminently without a warning.  How are we as parents supposed to cope?

It has become crystal clear in my 18 months as a member of the parent support group that it only takes a second for our world to be turned upside down.  For us specifically, I don't even need the parent reports of fellow CDKL5 siblings to know this, we HAVE lived this ourselves.  There is always a balance of celebration at the attainment of a "Sonzee-stone" along with potential fear of the skills loss.  The knowledge that the skills our children with a CDKL5 mutation achieve are not theirs to keep forever is sadly our reality, but yet there is always hope.  The hope of maintaining seizure control for as long as possible mixed with the reality of "refractory epilepsy" as a symptom of CDKL5 mutations.  The fear that even though our children might have a brief stint at seizure freedom, it only requires one to take their life.  It's suffocating.  It's heartbreaking.  It's impossible to live with, yet we have no choice.

My advice to my friend is obvious, "Don't focus on what might happen, just enjoy everything she is doing now".  I should really smack myself for even writing those words, I would internally roll my eyes at someone who would suggest that to me, and truthfully, I don't believe in these words myself.  There is no way to live this life without fear, yet there is no way to live with it.  Either way there is no winning.  Living in the moment, that is what all of us affected by CDKL5 or a similar type of genetic mutation or terminal illness must do; and we do just that each and every day.  Some days are easier than others.  There are days where the thoughts of the future leave us scared, numb, and paralyzed.  Then there are days where we just focus on the here and now because that is the only way to breathe.

There is no preparation to do once your child receives a diagnosis such as CDKL5.  There is no way to every fully accept everything that will be thrown our way.  I used to wonder if I would rather Sonzee never have seizure control and never gain skills because then I wouldn't have to worry about the day the seizures return or the day the skills disappear.  Our days of seizure freedom might not be as long as other children, and the goals Sonzee attains might not be as advanced or last as long, but I wouldn't give up the 52 days (non-consecutively) of her life she hasn't had to suffer at the hands of a seizure.  No matter what the future holds I have documented a ridiculous supply of pictures and videos to help me through whatever dark days might be ahead, and I will look at them with a huge smile on my face remembering just how happy she was during those moments.

And that is what gets me through the days when panic sets in.


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New realities

It is a Ben and Jerry's Salted Caramel type of night (mainly because I am out of The Tonight Dough starring Jimmy Fallon).  Really, it is more of an ice cream for all times of day type of week.  There have been way too many firsts in too short of an amount of time for this momma bear to process, and by the time this posts, it will only be Wednesday.  The areas leading me to binge eat frozen yummies both leave me (yes you guessed it) with mixed emotions.

On Monday morning, Sam handed me the mail I missed opening on Friday when Sonzee and I got home from California.  It was an envelope from the DMV addressed to Sonzee herself.  I opened it up and placed between the folded pieces of paper was a blue rear-view mirror hanging handicapped tag.  I ran outside to show Sam before he pulled away, to which he flashed me a quick thumbs-up.  I went back into the house with it and placed it on the counter.  I brought it into the car later on and placed it on the top of the center console.  I did not intend to use it, but it was there for that "just in case" moment.

I am filled with sadness that she qualifies for the placard.  I am filled with relief that on 100+ degree-days she will not have to be subjected to the extreme temperatures by us parking further away from where we need to walk.  I am filled with guilt that she is not in a wheelchair, she is so young, and I have a placard for her.  I know the overall definition of my feelings right now is "denial".  I have been here before.  It is a place where I feel the need to justify all of my feelings and simultaneously talk myself out of every justification.  It will take me some time to come to terms with this new reality.  The reality that Sonzee needs a handicap placard.

On Tuesday afternoon, Sonzee had an appointment with a palliative care doctor.  As I mentioned in a Facebook post, palliative care "is specialized medical care for people with serious illnesses.  It focuses on providing relief from the symptoms and stress of a serious illness.  The goal is to improve quality of life for both the patient and the family."  Dr. Wendy has an amazing reputation and I am so grateful that she has taken Sonzee as a patient.  She will be a liaison between all members of her current team.  She will make our hospitalizations a better experience.  She is developing an ER protocol for us to bring when we go, and I am already at ease thinking about any future visit we will be making to PCH.  She will help us with any life altering decisions that may need to be made.  I am so very excited to have Dr. Wendy on our side and on our team.  Yet again, I am so sad that Sonzee requires the use of a palliative doctor.  The topics discussed during our visit today have never been brought up during well checks with any of my other children.  We did not discuss anything that Sam and I have not talked about on our own, but it was the first time we were asked some of the more not so publicly discussed topics.  It is just another new reality.  The reality that Sonzee, as well as Sam and myself, will benefit from her care.

Overall, I feel my emotions are in balance, in that both the sadness and happiness are being evenly held.  This is just another chapter in Sonya's Story, and we will keep on following where she takes us, I will just make sure there is a fully stocked freezer of Ben and Jerry's.  

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Preparations

I remember back in graduate school when I was studying to take the Praxis exam.  It was similar to my prep for the SATs.  I spent years learning the material, I took a multitude of classes, I bought huge books, I reviewed flash cards.  The practice exams give a range of the information you "might" find on the test.  You can spend hours learning information that isn't even included and no time learning what the test ended up including.  You don't find out that information until it's testing time.  Until you have read your last highlighted note and your last flash card, and you open your test book.  You hope and pray you got it right, that you spent your time learning the "right" stuff.

It is similar to becoming a parent.  You spend 9 months "preparing" yourself.  In some cases a nursery is created, names are determined, and clothing is purchased.  You buy diapers and wipes and take a birthing class.  The day comes...child birth is NOT like the movies.  You meet your precious baby, fumble holding him/her, learn the basics quickly, then the hospital bracelets are cut and off you go, no manual.  Just you, your spouse/partner, and this new creation embark into the unknown.  All of the "preparation" you have you hope to G-d pays off.  But again, you won't know if you spent your previous 9 months learning the "right" stuff until you reach certain moments along your journey.  

When Sonya was diagnosed, Sam and I took to researching everything CDKL5.  Sam watched countless videos of children have seizures to help "prepare" him, he has watched every "CDKL5" tagged YouTube video to "prepare" him for what Sonya might (not) be able to do.  I ask the doctors for best and worst case developmental scenarios for my "preparation".  I ask about medication options and what each side effect might be, and for alternatives if there are, so I can be "prepared" should the time come when we have to change medications or she has changes with her seizures.  

Then comes reality.

I was talking to my mother this week, and I had the sad realization that I can spend all my time researching and learning, but I won't ever be prepared to make some of the choices that lie ahead.  I won't ever be prepared for Sonya's developmental future.  Nothing can prepare me.  However, I am at that point where I have sharpened my #2 pencil, sat down at my desk, opened the test booklet, and have to trust myself and my knowledge, and pray that I have enough of a foundation to get it right.