New Normal

The clock ticks and I watch the second hand as it makes its way around.  It is after midnight and I am wide-awake listening and watching her breathe.  I cannot remember the last time I slept more than an hour or two straight without jumping straight up in sheer panic.

Having a child with a seizure disorder will impact you in ways you never knew were possible.  That startle you experience when you hear your baby cry out, or any baby for that matter, because it reeks of the sounds your child makes at the beginning of her seizure episode.  The fear you carry with you daily, like a heavy weight, just waiting and wondering when the next seizure will take place.  It is awful.  It is scary.  It is my life.

I do not remember how things were prior to Sonzee, but I know things have changed.  I have lost the ability to differentiate between what is "typical" for any baby, and what is specific to having a child with special needs.  I know I used to sit and watch my oldest while she slept to make sure she was breathing.  I still periodically pop into each of my kids rooms when they sleep to ensure they are covered and breathing.  That is no different.  I do not remember how my other kids woke up from naps.  I know I did not sit and wait with baited breath wondering if it would be accompanied with shrieks, limb extensions, holding breath, and a red face.  

It is odd the things you become accustomed to when you encounter a new normal.  The shrieks, red face, limb extension, and breath holding are what I now expect.  When Sonzee wakes up by simply opening her eyes and looking to the side, I still panic for a second wondering if this will be a new type of seizure.  When she smiles or makes a giggle sound, my first thought is she is having reflux, my second a seizure, and then after all the other CDKL5 norms are eliminated do I then relax and realize she is just expressing herself.  Similar to a soldier on the battlefield, the scars from the previous events remain fresh and raw permeating into every subsequent action, thought, experience.  I am guessing this is just another bump in the road, another concept I will have to learn to wrap my head around, another new normal I will have to add to my long list of things I need to accept.

Mommy bloggers, Join me @ Top Mommy Blogs

Focus

In my opinion, one of the most challenging parts of being a mom is having the will power to not compare your child to another same aged peer.  It takes great skill to be comfortable with "accepting" your child the way he/she is.  To truly be okay with his/her strengths and weaknesses.  I think it is just one of those traits that is innate.  We want to be the best at everything we do, and so we want the same for our children.  I personally do not think it is wrong to want that, but I can say 100% that it makes things more difficult.

I personally was not the best at every activity I participated in as a child, so maybe that is why I wish my kids were.  For my three typically developing kiddos, whatever activity they are in, I just want them to do their best.  I do not feel like I have to defend their abilities.  In some activities they are better than their peers, but in others, they are not.  As long as they have fun and they try their best (at least when it matters), I am all-good.  I am always proud of them for what efforts they put forth.

Then there is the Sonzee.  There is always a difference in my mind when it comes to the Sonzee.  I know she tries her best, I know she works as hard as her little body can sans a complete (functional) CDKL5 gene; yet I always want more from her.  I can honestly say that I do not look at her same aged peers and feel sad about her development when compared to them.  After all, they have an entire gene that is usable.  That would be equivalent to comparing apples and oranges.  I smile when I see other children her age on my newsfeed who are taking their first steps, I know one day that will be Sonze, just not right now.  What I have the most challenging time doing is reading about what other kiddos her age with CDKL5 mutations are doing.

I know all children are different.  I know even within the disorder comparing two children would be similar to me comparing my other children to each other or their peers.  However, I cannot help but feel saddened and envious when viewing pictures of her CDKL5 sisters sitting, or working on crawling.  There is no solid research regarding mutations themselves and skill-sets children should be able to achieve.  I do know children with seizure control fare better than those who do not.  I know those who have deletions or insertions as their mutations have different outcomes than those with a frameshift like Sonzee.  There is also the whole mystery behind X-Inactivation (whether the healthy CDKL5 gene or mutated gene on either of the X chromosomes is being used in the body for a specific function).  I know children who have their mutation on the tail end of the gene have outcomes that are more “promising” as well.  

Even knowing that she will gain skills at a slower pace still has me saddened to see pictures of children with CDKL5 mutations her age performing skills now.  I wish so much that for her first birthday she will be able to sit alone, by herself, with no support.  I can pray and I can work with her all day long, but the reality is, those things still may not be good enough.  She has limitations, what they are exactly I do not know, but I know they are there.  

Hope and reality are two delicately woven strings intertwined that keep me dreaming yet grounded.  I wish I knew how to channel my vision, to focus, and be able to ignore the background distractions.  I wish I did not feel a tinge of jealousy when I read about the skills fellow CDKL5 siblings have mastered.  I am so elated for their parents, and for them, yet wish I could experience it myself.  I remind myself all the time that there are others who have children who aren't as fortunate as Sonzee, who I am sure feel the same way towards me (I don't judge you, you're allowed). 

It just plain sucks to want your child to be among the best when it is just not the case.      

Mommy bloggers, Join me @ Top Mommy Blogs

Reboot

Once a week or so my computer has a pop up that tells me it's time to restart my computer.  I usually press ignore the first 20 times it shows up.  The hours and days following the initial message, a pop up reminder randomly appears on my screen with the option to "remind me later" or to restart the computer.  I continuously hit the reminder button, until eventually my computer does not give me a choice and it automatically restarts itself.

These days I've been feeling all sorts of emotions.  Fear, anxiety, sadness, and sporadic bursts of happiness thrown into the mix.  Thoughts run wild in my mind and I am constantly reminded that I need to take time for myself, that my system needs to be refreshed.  I am constantly ignoring the pop up telling me I need to slow down, to take a break, to try and distress.

As we started Sonzee's first wean from a medication I have been thinking about reboots.  Every time she has a seizure I second guess our decision to wean, even though I know seizures are an ironic side effect of the wean.  The seizures may not even be related to the drugs efficacy, just a side effect.  We increased her cbd oil a couple of weeks ago prior to her wean and an increase of seizures can be related to that as well.  She isn't experiencing any more seizures than she normally does, I just wish they would stop.  It's so disheartening when I read about other kiddos with CDKL5 who have seizure control, why not Sonze? 

Eventually whether I like to or not, I am forced to take a much needed break.  We are currently on a little family vacation, complete with Disney princesses and a cabin in the snow.  What better way to get a reprieve and take some much needed time to just enjoy time as a family and be driven crazy by normal family of 6 experiences.  It is so nice to have a chance to get a break.

 At the same time, it's hard to fully enjoy my much needed start over when I think about Sonzee.  She has had at least one seizure a day during this vacation.  Her little body needs a break, a refresh to her system, a simple reboot.  I wish she would be afforded the same automatic shutdown and system reset, complete with a vacation from these awful seizures.

Balance

If anyone ever asked me to walk a tight rope regardless of the distance above the ground I would most certainly fall to floor hysterically laughing.  It ranks up there for me the same as walking across a balance beam which isn't exactly my strong suit either.  To walk a tight rope or a balance beam you need to be in top physical shape, you need to be able to delicately balance deep concentration with not overthinking your every step while simultaneously trusting your body's every move, all the while having your mind completely clear of any possible distractions.  I guess I should be laughing out loud right now, because lately it feels like walking a tight rope is exactly what I am doing.

It is downright difficult to find the right balance between life in general and all things Sonya/CDKL5.  Every day I find myself walking across the thinnest wire.  A constant battle to remain balanced on the most narrow of paths.  Keeping track of medications, appointments, activities, meals, my list could of course continue, but you all know.  You all have your own lives with your personal tight ropes to master.  The problem is that I am not so steady with my steps nor am I confident in the way my body is moving.  It's quite the balancing act trying to maintain my sanity while dealing with a child who has medical and physical difficulties, and who is the youngest of four children.

I am by no means perfect and I don't even pretend to try to be.  Not only would that serve no purpose, but it for sure would be more difficult to pretend.  I am not going to make excuses for myself regarding what I choose to make priorities.  I have learned over the past 10 months that I can only focus my energy on a small list of "to dos" a day, and personally I am okay with that.  I understand my limitations and I have even recently learned to not feel guilty for what I have chosen to move off my limited list (pat on the back to me).

In speaking with others who have been in similar situations as mine I know a lot of their heads would be nodding in agreement that I am doing what I need to do in order to function, and that what I am doing is enough.  My mind is constantly in a fog over decisions regarding Sonzee.  I anxiously wait for each seizure to come, my mind never at rest.  I sit straight up in the middle of the night in panic with fear that I have missed a dosage of her medication, missed a seizure, or feeling to make sure she is breathing.  I am constantly wondering and doubting if we are making the best decisions regarding her medications, weans of medications and dosages.  I feel guilty that she hasn't gained weight since she is primarily breastfed and wonder if maybe breastfeeding isn't the best choice.  Am I the reason why my 14 pound 10 month old is a failure to thrive??  I am pulled in 3 other directions by my highly energetic (thank G-d) older children.  The long list of worry and doubts of what I am doing with each of them haunt me daily.  Has being so entrenched in Sonzee and CDKL5 taken away from their childhoods?  Am I failing them? 

 I am not looking for sympathy or any "poor Randi" statements.  I just ask for a little empathy.  I have never been the best at sending cards on birthdays, or making phone calls.  I will do my best to celebrate occasions if I am reminded, but I am lucky I remember the dates of Sam's and our children's affairs and then remember to actually celebrate the day when it arrives.  To those offended by my out in the clouds demeanor, I am sorry, but at the same time I am not.  I am doing the best I can and right now where I stand, I am one small move from losing my balance and falling off the rope.

Is it better?

There are constantly new kiddos being added to our CDKL5 family, it is a challenging feeling to describe when I see a welcome message posted into our Facebook group.  I am always "excited" to see if there are children around Sonzee's age, while at the same time I know all too well what accompanies the mixed bag of emotions these families are experiencing.  What I absolutely love about our support group, is that it really and truly is such a supportive network, made up of parents, family members, and close family friends of children diagnosed with a CDKL5 mutation.  

I do not take it for granted for one second how lucky we are to have a group to help us out at the beginning of our journey.  There are parents who have only recently learned of their child's diagnosis within the past 6 years; some of those children are in early childhood, while others are teenagers or in their 20's.  I am sure these parents wonder about what it would have been like for their child had they been given the advice and shared experiences they are giving to others.  If I am inspired by anyone, it would be the parents in this group who continue to give suggestions, insight, and support despite the fact that their child's outcome is not what they planned.  Despite the fact that they themselves were not afforded the same opportunity. 

As I mentioned I get "excited" when a child enters into the group who is around the same age as Sonzee.  However, this is also one of my biggest challenges as well.  Due to various ways children are impacted by CDKL5, no two children are the same, much like that of two typical children who do not have any mutations on their CDKL5 gene.  However, when a child is introduced around Sonzee's age, and she is able to do things Sonzee is unable to; it makes me a bit breathless.  I tend to feel a bit more defeated, more envious, and I ask the question, "well why is their child with CDKL5 able to do that and Sonzee can't".  

This week I have been thinking about seizure control and Sonzee's abilities.  Of course, it appears if we could just nip these darn beasts in the rear then her brain would have more of a chance to develop.  Obviously it is a no brainer that if she wasn't having multiple episodes a day resulting in her sleeping the day away and then taking an additional day to recover that she could be closer to typical development.  Unfortunately, we have yet to find our magic combination of anti-seizure medications to do the trick just yet.  Additionally, each drug comes with a ridiculously long list of side effects that do not quite assist her positively in the development department either.  Despite the potential seizure control, there is still the whole lack of a usable CDKL5 protein issue that she has to "deal" with.  It is not as if she will ever be a typical child, seizure freedom or not.  

For now Sonzee is completing her Sonzee-stones at a Sonzee the Snail type of pace, and (I tell myself hourly) this is okay.  Not really what I want, but it is what it is, and it is okay nonetheless.  What I find myself wondering; "Is it better to never have seizure control and therefore the gains she makes while slow and steady won't cause a rude awakening should they be taken away by a seizure?  Or would I rather her gain all of the "typical" skills and then spend every minute of my life in a panic that she'll have a breakthrough seizure and loose everything she spent so much time working to achieve?"  

Mommy bloggers, Join me @ Top Mommy Blogs

Blame

I am a "reasons" person.  I like to know "the why".  I like to be able to give credit where credit is due.  Unfortunately, in many situations there is not always one specific clear-cut answer to answer "why".  Sometimes things are the way they are just because.  I personally find this completely unsatisfactory, I suppose that places me among the ranks of most two year olds; well, at least mine.

About 6 months ago we were told to increase Sonzee's medications.  When a doctor tells you to increase medications because it will help your child stop having seizures part of you believes them and the other part knows this will not help.  In this specific instance, both Sam and I myself were against the increase.  For those of you on a medical journey of your own I bet you can attest to the fact that even though you may voice your disagreement, it can fall on deaf ears.  Call it what you will, but there is a sense of fear in the system you are supposed to trust.  If you do not do as you are told at any moment your parenting can be called into question, and I am not talking about from other parents.  There is always a shadow looming over you that if you don't do what you are told, then you do not have your child's best interest at heart, and then boom your child and his/her siblings could be taken away.  So as you can guess we obliged.

We decided to slowly increase one of her medications in baby steps.  We had a follow up appointment about 3 weeks after the initial discussion and we told our doctor that we had slowly increased one of the medications, but we had not increased the other, as we must have misunderstood the directions.  We left the appointment with directions to increase the medication.  So, we did.

A week after that appointment I emailed our neurologist at the time and told her as nicely as I could that we were going to decrease one of her medications as the side effects were outweighing any possible benefit that we still were waiting to see.  She agreed with what I had written and we began to lower the medication.  We switched to an epilepsy specialist at the time and were given the green light to begin giving her CBD oil.  Due to this decision, we were to hold off on weaning or playing with any of her medications.  

Since we have increased her medication she has not grown.  Not her head circumference, nor her weight, nor her length has changed at all in the positive directions.  She has been tired and cranky and her muscle tone has gotten weaker.  We have tried everything to get her to gain weight.  She has her own nutritionist to help us with her solids and I have done what I can to produce the best breast-milk, yet it has not seemed to make a difference.  Our baby now has "Failure To Thrive" written next to her long list of already sad diagnoses.  Our decision now is Gtube or NGtube.  When I try to place the blame of course it falls to the medication.  It is easy to blame the medication when I paint the picture in the manner I just did.  But, is it really the medication?  Am I really being impartial and unbiased?  Or am I am simply trying to point the finger to try to make sense of a situation I have yet to make sense of myself?

Mommy bloggers, Join me @ Top Mommy Blogs

Grieving a child who is living

My child is alive yet I grieve my loss over her every day.  How awful others must think of me if they have actually lost their child to this world in both the physical and spiritual sense.  I am sure I come across ungrateful because I can actually hold my beautiful blue-eyed baby girl in my arms.  I am extremely fortunate that I am able to kiss her soft pink cheeks and cuddle her close to smell her hair.  To be honest I find myself embarrassed that I am even admitting I have these feelings, but they are the truth.

10 months ago we welcomed our fourth child into this world.  For the first 20 minutes of her life, she was seemingly perfect and healthy.  All too soon, our world came crashing down when she presented with difficulty breathing.  Four short weeks later she was diagnosed with epilepsy, and was having on average seven seizures a day despite being placed on medication.  Eight weeks after she entered the world we learned the cause of her seizures was due to a genetic mutation on her CDKL5 gene.  Now, 8 months later, I continue to mourn the loss of my perfectly alive baby girl.

What I wish others would understand is that the grief others may have over their child with disabilities is painful and it is real.  Our grief is not to be compared to that of grief over a child who is no longer present on this earth.  It should not be dismissed or diminished simply because our child can be held, cuddled, kissed, and loved on physically.  Grieving our child who is alive is sporadic, and while our children bring us joy and happiness, those feelings can be overshadowed by what is not present.  Experiencing grief does not mean we do not love our child with disabilities.  

On occasion my mind drifts to the future, and I often wonder what it will be like when she is my oldest daughter's age.  Will she be able to walk or communicate verbally?  Will she able to sit or crawl?  Will she look me in the face and smile?  Will she be excited over the anticipation of losing her first tooth?  These thoughts are what open the doorway to my grief.  The realities of what the future holds and what the past has failed to bring.  These feelings of grief sneak up on me like a thief in the night.

What I wish others would understand about the grief parents of a child with a disability might experience is that we wish we could shake off our feelings and move on with our lives.  We wish that after time passes it will get easier and we will learn to accept the hand of cards we were dealt.  Maybe that does happen in time...for me, it hasn't happened yet.  I wish people would understand there is no one correct way to handle this type of situation nor is there is one correct way to grieve.  

What I wish others would understand the most is that grieving over our child who has a disability is not going to go away.  As our child continues to grow up, he or she will not be accomplishing the same things as his/her same age peers.  Each birthday that passes will be a reflection of another year that was counted by the mastery of inch stones as well as physical and emotional setbacks.  Each day that goes by will be another day we are presented with a reminder of the things our child may not be able to do.  As time goes by, we are faced with the harsh reality that our child will not complete the dreams we spent 9 months creating while awaiting their arrival, and for that alone, we grieve.

Mommy bloggers, Join me @ Top Mommy Blogs

10 Months

Today Sonzee turns 10 months old.  It is a bag of mixed emotions that really began last month and I fear will only continue.  When I tell people she is 10 months old, the typical reply is "Oh my gosh, I can't believe how big she has gotten", I can totally agree with this statement.  Ironically she is behind compared to her same aged peers, but show me a child of mine who isn't.

Today our baby girl turns 10 months old.  The goody bag of emotions that she has brought to our family has a lot of positives.  When she smiles, it is one that brightens the room and makes you smile right back.  She has given me that purpose I have been searching for, because I absolutely love to write and she has given me the chance.  She has taught us about strength and perseverance.  The amount of work she does to simply hold her head up is admirable to say the least.

She continues to teach me patience in every sense of the word.  That continues to be a daily challenge for me, but I thank her nonetheless.  She has made our family stronger and has brought smiles and love to everyone.

While I do not have a long list of all her physical and developmental accomplishments to list, she continues to flourish in different ways and that should not be overlooked.  Instead of looking at what she can't do on her 10 month birthday, I am going to focus my energy today on all that she can.  She can roll, she can hold her head up, she can sit supported, she can hold an object for 2-3 seconds, her eye contact has improved tremendously and she can fixate her eyes for close to 20 seconds.  She loves to be fed food, and loves pureed asparagas as well as spinach and cheddar puffs.  She can drink from a bottle and loves to snuggle.

Happy 10 months Sonzee Bear!!

Mommy bloggers, Join me @ Top Mommy Blogs

Sometimes

On a busy week when Sonzee has movement lessons multiple times, I can spend upwards of 3-4 hours in the car a day.  It equals approximately 150 miles of driving and 2.5 times of "Frozen" for Sonzee's older sister.  She would watch it every day if I let her, but I save the movie viewing for our crazier/longer distance days.  For 1.5 times that the movie is playing everyone is asleep and so I am left to sing and act out the scenes all alone.  

My favorite character hands down is Olaf.  I absolutely love everything about him.  To start, what a great personality this little ball of snow has.  No matter how many times I listen to him, I always chuckle with his words (I know that is more credit to the writer, but stay with me here).  He is such a happy snowman and a genuinely grateful character.  He has great character attributes such as resilience, persistence, humor, and friendliness.  I think what resonates with me the most about him is how much he fantasizes and wishes to be part of something that he has never experienced, yet can only imagine in his dreams what that reality would be

As I sit in the car last night at a family Chanukah event because Sonzee was finally waking up from a seizure she experienced 3 and half hours prior, and she wanted to eat, my mind drifted off to thinking about Olaf.  "Sometimes I like to close my eyes and imagine what it would be like" to be a family of six celebrating the 3rd night of Chanukah at the city menorah lighting.  How I would be grinning from ear to ear watching all four of my children running around and stuffing their faces with candy while Sonzee tries to crawl around the cold cement ground.  How the kids would be running over to me to make sure I was seeing whatever shenanigans they were getting themselves into.  How happy we all would be together.  I am sure there would be a fight or two, and Sam and I would have to threaten to leave the event.  For a moment I can almost imagine what it would be like if Sonzee did not have a mutation on her CDKL5 gene.

POP!  My fantasyland journey is snapped back into reality as I watch every family scramble to their cars to start the parade of cars.  I am putting Sonzee back into her car seat and my son tugs on my leg.  Then as usual, I take a picture of my husband with my three oldest kids, realizing how sad it is that they have gotten so used to me missing all of the events.  Then I attempt to embrace my inner Olaf and I take a big breathe in, sigh, and continue with my winter as I dream about the unknown summer. 

Mommy bloggers, Join me @ Top Mommy Blogs

Unsure

As a parent I am always struggling between honoring my child's feelings as well as doing what I feel is best for them.  I am pretty certain a lot of other mom's and dads feel the same.  For example, it happens to be neither healthy nor appropriate to go outside in 40-degree weather without a jacket and wearing "fip fops", despite the fact that my two year old would disagree.  My son would love to stay home from school every day and jump around constantly eating candy, yet that is definitely unhealthy and would not be beneficial socially or educationally.  My oldest would enjoy staying up late playing with her dolls in her bed or looking at books, but I have to tell her she needs to go to sleep or else in the morning we will all suffer.  Then there is the Sonze, she who would love to sit in her bouncer and suck her thumb all day yet I want her to work on her developmental skills and I cannot for the life of me figure out which is the most beneficial option for her.

We have been told that kids with CDKL5 have severe to profound developmental delays.  In reality, as hopeful as I am for Sonzee, despite the amount of time she spends working on her skills; she will always have a delay.  It is truthfully a more severe delay than I am currently able to accept at this point.  I think more severe than any of us parents with kiddos with this and similar diagnoses can ever accept.  For me, this is where I face my conundrum.  If Sonzee is not ever going to be as typical as I would have once thought she would be, and she is perfectly happy sitting in her chair, taking in the sights and sounds, do I take away her clear joy?  Do I make her spend her time doing things that might help her?  Am I actually giving her the best by making her do what I want for her?  Am I being fair?

We know there are children with CDKL5 who can learn to do basic skills.  These skills are typically attained after that of typically developing children.  In my conversations with other parents there is such a wide spectrum of ages that children can learn to perform skills, it is hard to pinpoint where, and if at all, Sonzee will fall on the scale.  There are children who can sit, crawl, walk, and sign/communicate a few words verbally.  There are also children who do not do any of the above-mentioned skills.  Not knowing what Sonzee will do makes this all the more difficult.  It is so hard for me to take the 5-10 minutes she is finally awake and happy and make her work on skills that she is so uncomfortable and angry working on.  I tell myself it is what is best for her in the long run, but is it?  Is making her miserable during what could be her only enjoyable time during the day really worth it?  Am I just ruining what happy time she could be experiencing for my hope, or is she ever going to look at me and "say" thank you?  

I know that my two year old might be upset at me for making her put on socks, shoes, and a jacket, but she will get over it, and when she is older, she will agree that not wearing flip flops and short sleeves during the winter were for the best.  I know my son will thank me when he graduates from college for making him go to school.  I know my oldest will be happy when she wakes up on time in the morning and gets to school on time without tears.  What I don't know is will Sonzee be more thankful for me letting her enjoy her simple pleasure of sitting in her bouncer sucking her thumb or for me making her work her little tushy off?   

Mommy bloggers, Join me @ Top Mommy Blogs