Monday, October 13, 2014

THE SPLASH PAD MOM

Every hot Utah summer day you will find mothers and children arriving in droves at the splash pad. We moms are always looking for bargain entertainment and you can't beat free. Moms arrive with freshly packed lunches, ready to spend the day there while their children play. They rush at the opening hours to fight for spots in the shade. There are moms that visit with other moms, read or spend time on their phones, or even take a nap. There are moms who loosely watch their kids, yell out commands every once and a while, and enjoy a break. There are other moms, especially those of little kids, who walk in step with their little ones. There are moms who like to "mother" the other moms, telling them how they should or shouldn't let their kids play. Splash pad to splash pad, the patterns are the same.

I envy all these moms. I spent the first few years of my first-born son's life wishing I could spend more time at the splash pad. Instead, I spent my summers taking Nami to doctor appointments and in for constant testing. I spent my days watching him seize uncontrollably, sometimes up to 500 times per day. We spent hours in therapy in an effort to help his severe autism. I constantly rushed him to emergency rooms resulting in life flights, intubations, and multiple stays in the PICU. I spent an entire summer in New York for him to get a series of brain surgeries.

My summer nights were spent fearing for my son's life, watching him seize, tantrum, break things, and injure himself. My nights were sleepless as I cried and begged for this all to end.

I suffered from severe depression, extreme anxiety, constant panic attacks and insomnia.

My son has a condition called Tuberous Sclerosis Complex (TSC), a genetic condition that causes tumors to grow on all his vital body organs. He is regularly followed by at least 12 doctors who monitor these tumors.

My son was 10 months post-brain surgery this past June when he had another surgery to implant a Vagal Nerve Stimulator (VNS). I was excited when he quickly recovered. His seizures were less severe, his outbursts less frequent, and his sleep (and therefore my sleep) more consistent. This was going to be MY summer. I was going to push aside my fears of taking my autistic son to play in public and we were going to the splash pad.

The first time we went, I was the hovering mom, staying within a foot of my son at all times. The next time I was more relaxed, sitting at the edge and staying within a few feet of him. The next time I sat in the shade and enjoyed watching him as he experimented with different pieces of garbage he'd picked up to see how the water impacted their movement. I watched as he obsessed with the draining water. He did not interact with the other kids and none of them were interested in the things he was interested in. This was great for me because I actually felt relaxed and enjoyed a somewhat typical outing in a public place for once.

The next time we went to the splash pad I took my kids and met my sister and her kids. My younger son and my nieces and nephews ran around playing like all the other kids at the splash pad. My older son found his favorite spots, away from any of the other kids, and stimmed off the water.

I chatted with my sister and mentioned how great it was to be able to do something "normal" and be able to actually relax a little.

No more than 5 minutes later my sister yelled, "Oh No! Nami just pushed someone!" We both popped up and starting running the 20 feet to get to my son.

My life went into slow motion as I saw the body-building father, of the young girl Nami pushed, yank him at the collar of his shirt, scream a couple inches away from his face and start violently shaking him. I watched as my son stared at the man, not knowing what to think. I witnessed the father get more enraged, shake my son harder, and scream at him as if he thought he was talking to a belligerent child who was refusing to respond to authority.

Little did this man know that my son was nonverbal; that he feels threatened when someone comes into his space while he is stimming off something and that's why he pushed the man's daughter; how he had NO WAY to comprehend what was happening. I could not rescue my son quick enough. It felt like it took at least a minute to get to him as I helplessly watched his body being shaken like a rag-doll. In reality it probably took 20-30 seconds. My sister and I were both screaming at the man to stop but he was too determined to get an "appropriate" reaction out of my young child to pay any mind to our cries of desperation.

My sister snatched my son from this man's grasp yelling, "STOP! He has special needs!" I uttered, "I'm sorry, my son doesn't understand" as I rushed after my sister.

I started shaking uncontrollably as I tried to take my son out of his swimsuit and get us all to the car. I saw the man finally pick up his crying daughter and comfort her, then take her to the shade that his wife was sitting in about 15 feet from us. She quickly recovered and ran back to the water.

I couldn't breathe. I continued trying to get packed up and ready to go when my anger started to set in. I don't know why or how, but I was able to calmly walk over to the man and his family and hand him the following card:
I said, "I just want you to understand more about my son's condition. I'm sorry he pushed your daughter. I should have been closer to him...I usually am." He mumbled, "It's okay, she's fine". I walked back to gather my children and bags and left.

By the time I arrived at the car I was shaking so badly and was in the beginning stages of a panic attack. My sister gave me a big hug and we each got into our cars to drive to our Mom's house. The second I got in the car I started sobbing uncontrollably. I was gasping for air which kept me from being able to hide my sobs from my 3 year old.

He said, "Mommy, you're crying?"
"I'm okay honey."
"You're sad?"
Through the tears, "I'm going to be fine."
"You're sad because you got cold?"
No longer able to hide my sobs, "Honey, I'm really okay. Thank you so much."
"Just take a deep breath Mom. You're going to be okay. I love you."
 "I love you too. Thank you for helping Mommy feel better."

By the time we arrived at my mom's house, I was LIVID. I couldn't believe I actually apologized to that monster! I couldn't believe I hadn't called the cops! I WAS ANGRY! If he thought that my son pushing his daughter was bad, try watching a grown adult physically attack your young child! How could he not see how terrible HIS actions were?!

As I talked through the incident with my mom, I was so glad that I was able to react so calmly in the moment. It was an out-of-body experience. I felt that something had taken over my body and was doing and saying everything for me. I would like to think that I have learned love, patience and empathy from everything we've experienced over the past 5 years.

The more likely answer is that God blessed me to get through this incident. My blood still boils when I think of it and there is no way I would have reacted so calmly in my own mind! I'm so grateful that I was guided to respond the way I did. I know that God helped me make a bigger impact on this man by remaining calm than making him defensive by lashing out in anger.

I no longer think I have it in me to be a splash pad mom.

Wednesday, October 8, 2014

AND DOGGONE IT, PEOPLE LIKE ME

"I'm good enough, I'm smart enough, and, doggone it, people like me." (Daily Affirmations with Stuart Smalley, SNL, 1991)

Although this is from one of my favorite comedy sketches, I wish it was an accurate portrayal of how I truly felt about myself!

Instead, my head is filled with Daily De-affirmations. In my teens to single adulthood I told myself things like, "I'm not smart; I'm stupid. My teacher is going to hate this project I just spent 16 hours doing. No one wants to be my friend. Even if that guy DID take me on a date, he'd regret it. I'm no fun; I'm boring. I don't have any unique talents. And, doggone it, I'm not pretty".

Since beginning motherhood I've told myself things like, "I'm a terrible mother. I can't ask for help because people will feel put out. No one has the time anyway. I'm annoying. I must be surrounded by a force field that pushes people away. No one wants to be my friend. Why blog? I'm not a good writer. And, doggone it, I'm not pretty."

Why the worry about being pretty? I dunno. I wish I never thought about it.

A constant voice inside by head screams, "YOU ARE UNWORTHY OF BEING LOVED!"

No amount of nice remarks, loving gestures, encouragement, etc. helps change the way I feel. I somehow find a way to make anything that goes wrong my fault, or explain that they happen because of my shortcomings or flaws.

I realize this is a ME problem. No one else can change this self-damaging thought process for me. It's something I've got to fix.

Over the past few years I've become increasingly aware of how much these harmful thoughts have shaped me. How much this voice has been my constant companion. How much it makes me NOT LIKE ME.

In order to change this, I needed to comprehend the severity of my negative self-talk. Truthfully, I wasn't really aware of it being there since it's been my constant companion for most of my life. By the time I started to see a therapist, for the first time in February of last year, I was vaguely aware of my problem, but became more open to seeing it's reality.

I had a rude, yet necessary, awakening while in New York in the summer of last year for Nami's brain surgeries. One night I was in my hotel room with my sister and we were having a really great talk about life. During this talk my sister painted a different, yet more accurate picture of how a guy I really liked in my dating days had treated me. While I thought he was so great, she explained that he actually hadn't been very nice to me at all.

I countered her assessment, "He was nice. He did a lot of cute things."

My sister explained, "Annaka, he would tell you that he liked you but wouldn't tell anyone else. He wouldn't invite you to do things with his friends. He kept the relationship hidden. It's just interesting to me that you liked someone so much that didn't treat you very well. I knew you deserved better but you couldn't see it."

I was stunned. I sat there thinking, "Could this be...that I actually convinced myself that it was cute that this guy secretly did all his 'nice' things for me? How was I able to twist that so far in my head? How could I have been so naive to think he had actually liked me?"

This conversation propelled my intense journey of becoming more self-aware forward. It helped me see...
...how much I actually did put myself down,
...how much I had settled for not-so-nice treatment from people and fully not be aware that I was doing it,
...how I would take that treatment because I believed that's all I deserved,
...how I deceived myself into thinking that I was actually in control of my friendships; that, although some mistreated me, I told myself I allowed it because I was a loyal friend and I wouldn't let their actions break a friendship (I'm sure this was partially because I felt desperate for friends),
...how I convinced myself that I was an introvert and wanted to be alone,
...how I had been successful in tricking my conscious mind that I didn't have a problem,
...how I constantly put myself down to others (like a lady who told a leader in my church when he asked her why she was so hard on herself) "So no one can beat me to it",
...how I tried to overcompensate, always doing more than my "fair share", so that I could keep people thinking or saying negative things about me,
...how I had difficulty accepting compliments,
...how I feared people thinking that I thought I was good at anything,
...how I felt unworthy to think I was good at anything,
...how I had difficulty standing up for myself,
...how I put myself down as a form of self-protection.

I saw these patterns in multiple experiences, relationships, and situations throughout my life. I began questioning all my relationships up to this point. I became painfully aware of my trust issues (another blog for another day ;). On the other hand, I also recognized I was blessed with some very loyal and loving friends.

Becoming more self-aware is not a comfortable process for me. As I try to make these necessary changes, I wonder how long it will take to train my brain to have consistently healthy thoughts. How I will be able to recognize that I actually do have talents. And how I can change my actions so that I am able stand up for myself when needed, all the while trying to maintain the pieces of who I feel I really am.

I started my blog a couple years ago and of course belittled my writing in my profile. (Maybe I should go change that.)  I have put a lot of effort into my writing over the past few years, and even though I discount that it may be quality writing, I have hoped to eventually publish some of it. My constant negative self-talk has kept me from putting myself out there.

I recently had an experience that stretched me in uncomfortable ways. Last month, I saw a fellow blogger post something that was very similar to a blog I posted (and had been read by this blogger) many months prior. I read it, was annoyed, but talked myself out of doing anything about it. Within a couple days, that blogger's post was published on a reputable site. I felt sad that someone would take my idea and pose it as their own. Especially because I feel so vulnerable blogging and it's still scary for me. I wanted to give up blogging altogether. I didn't want to be a part of something that left me susceptible to being hurt and taken advantage of.

As I pondered over the situation, I decided that instead of falling into my typical self-doubt, I should be flattered. It should make me feel good about my writing because it may mean that some of my work might actually be worthy of publication despite all the reasons I come up with to talk myself out of it. (I'm still not okay with anyone using any part of my copyrighted posts without my permission).

I am slowly starting to see evidence of improvement in the things I tell myself. Although it's still difficult for me to think and say good things about myself, I can finally admit to finding one good thing I'm good at; my job. There, I said it out loud!

One day I hope to be able to proclaim, "I'm smart enough, I'm good enough, and doggone it, people like me."

***Update: I found this fascinating news story after I published this post. It's an interesting read having to do with the issues I just wrote about. Why Saying Is Believing - The Science of Self-Talk

Wednesday, September 3, 2014

STEP FORWARD

I was apprehensive as we drove around looking for the "Step Forward to Cure" walk for Tuberous Sclerosis Complex (TSC) awareness 2 years ago. I hadn't ever participated in a cause like this and I felt uncomfortable attending something that was about an issue MY child had. I have always struggled when I felt like there was too much attention on me. I once received an award at work and I had to go up in front of a small group of about 30 people to accept it. I was so embarrassed about all the nice things that the administrator was saying about me that I could only look down. The truth is, I've avoided attention for as long as I can remember.

For the first 3 years of Nami's life, Salesi and I had really kept to ourselves in our struggles. We had difficulty accepting ANY help, even from family, and we hadn't connected with others that had TSC. (We've since connected with so many, in person and online, and it has been so wonderful.) Our lives in that 3 years revolved around constant doctor visits, tests, therapy, and coping with everything else that TSC had brought us, including multiple life-threatening seizures. 

So, I'm the first to admit that I'm SUPER awkward. We only invited family and a couple friends to this walk. I should have felt completely comfortable, right? Not-so-much. I felt embarrassed even having my family come to something that was about us. Prior to attending, I didn't fully understand the purpose of an event like this. Sure there was fund-raising, and of course it is always good to draw attention to such severe diseases in order to help the public be more aware. What I didn't anticipate is what it would do for US, our family of 4.

Much of my family was able to attend along with a couple of friends. My brother had purchased shirts for the entire bunch and decorated them with one of his friends. My sister bought bandanas and made arm/head bands with Nami's picture on it for everyone to wear. We all met there and put on our matching gear. We got our wristbands and started to walk.
 

The walk was simple, not a lot of hype like I'd seen about other events in the news that have raised awareness for different causes. Despite this, I was impressed with how many people were there to volunteer. We walked a couple miles around a park and I was surprised at the emotion that came over me. My family had been by our side since the moment of Nami's diagnosis, they had rallied to help during every emergency, yet this was the first time that I truly FELT that we were not alone in our fight with this awful disease.

Salesi had really been annoyed that we were going to spend our Saturday doing this walk and yet there he was, going up to each and every family member and thanking them for attending. He kept saying how nice it felt to be there and be able to feel all the support from so many people. We were both surprised at how good this seemingly small event was for us. We were excited that fun activities and food followed so that these great feelings could continue. This simple walk had a profound effect on me. It was the starting point for us to be able to open up more and start getting better at accepting some desperately needed help.

I guess it's difficult to understand how and why these awareness events are so important unless you are personally connected. At least it had been for me. I wished I had reached out this way to others prior to having Nami...that I had understood what it could do for people living with horrendous conditions. 

This experience helped me realize that in addition to raising money and awareness, events like these bring a much-needed feeling of support to people living in difficult circumstances. I would like to do a better job in bringing awareness to TSC. TSC doesn't draw the attention of other diseases even though it is such a difficult disease to endure. This is a bit surprising to me since research in tuberous sclerosis helps many more than those with TSC (e.g. those with cancer, autism, epilepsy). 

We were so sad to miss the walk last year because we were in New York for Nami's brain surgery, but we are happy to attend again this year. There are walks all over the country, but we will be decked out in Aloha gear and attending the walk on September 27th at Liberty Park in Salt Lake City. 


I would like to invite anyone who would like to bring their families to participate in an event like this to come on over. I would like to invite anyone who has been wanting to volunteer or help some cause to come help with the walk. I would like to invite anyone who or any business that is ALREADY looking for a non-profit, tax-deductible charity to donate to to consider donating. There are many options for donating including donating directly to the walk Step Forward, donating to our team here: NAMInation, or becoming a sponsor.

Here is the information for the walk:
2014 STEP FORWARD TO CURE TSC

So come on over and enjoy a fun day with the family! It doesn't cost anything to participate. If nothing else, I hope that by using social media, I am able to be a small part of raising awareness to TSC. Thanks for reading!
 
For further information about our lives with TSC, you can click on the Tuberous Sclerosis tab at the top of the blog page and read some of the posts. My most popular posts are A SLAVE TO TSCJUST CAN'T WRAP MY HEAD AROUND IT - PART I, and STIMMING.

For further information on Tuberous Sclerosis, visit the TSAlliance. This is the amazing organization where all the fund-raising money will go. You will see that this organization is endorsed by Julianne Moore as well as all the fantastic things they do to support families with TSC. They have helped our family so much and I would guess they are one of the best organizations at helping families through living life with a devastating condition. They do such a great job at personally connecting and reaching out to those affected.

Thursday, August 7, 2014

JOURNEY IN MY NIKE SHOES

A couple months ago I ran a half marathon. I had so many emotions after completing this race. I had difficulty putting what I was feeling into words that would adequately express these emotions. I always hear of extremely inspirational stories of athletes who defy what we think is humanly possible. These stories touch many people's lives and many of these great athletes end up endorsed by big brands. I will never be that person that inspires many, but right after my race I felt like I had accomplished something great... something that so many others had accomplished too but had always seemed impossible for me. My thoughts and feelings poured out of me and formed themselves into a letter to Nike:

Dear Nike,

I am a regular ol' mom. I love my kids like crazy. I constantly make mistakes as I guide them through life. I beat myself down for these mistakes. I wish I was better.

This past January I couldn't even run a complete mile. I had survived almost 5 years of intense physical, mental and emotional strain that my unique situation of motherhood brought me.

Our difficulties as a family reached a height in 2013. I experienced despair in a way that I never could comprehend existed. In 2009 our first child was born with a condition called Tuberous Sclerosis Complex. This condition causes tumors to grown on all his vital body organs (e.g. brain, heart, kidneys) and wreak havoc on their functions.

For the first half of 2013, our son endured constant seizures despite years of attempting to help his epilepsy. I would consistently count 30 seizures in an hour which would be over 500 seizures a day. After a lot of grueling work, we were able to head across the country for him to get a very invasive brain surgery. His behavior is challenging, to say the least. We've endured countless sleepless nights and have lived, at times, in constant fear for his life.

During this time, all the difficulties surrounding our son came to a head. In addition, I was dealing with multiple deep wounds that I had lived with for years. I fell into such a deep depression, it stole my ability to function. I had difficulty walking, talking and even breathing. I was obsessed with wishing for a meteor to hit our home and wipe us all out. I saw no possibility for improvement.

I did seek help...A LOT of it. I had intense therapy. I was put on an anti-depressant, sleep medication, and medications for migraines, anxiety and panic attacks. I was helped by multiple medical doctors for my many physical ailments. I accepted help from an amazingly supportive family and network of friends (something that was difficult for me to do). I am grateful for all this work because it got me to survive to January 2014...the month I started to work out again.

Last year I bought a pair of these babies:

They are the most expensive shoes I've ever purchased. They cost $79.99. This was an impossible amount for my brain to process spending, especially given the constant financial burdens our son's condition causes, but I took the plunge and did it. With my sister's encouragement, I signed up for a half marathon...something I swore I'd never do. I used to swim competitively and I always told people that it was because I hated running so much. I'm happy to report that I went from being unable to run 1 mile to completing my first half marathon in just a few months. I even ran 30 seconds/mile faster than I ever thought possible for me.

As I exercised, my need for therapy and medicines have decreased. I recognize I will probably always need therapeutic tune-ups and be on some medication for the rest of my life. I am grateful for these things because they brought me to the point that I could start working out again. I feel a great sense of accomplishment. I wonder what other stories are running in your shoes. Thanks for being a part of my journey to better health.

Sincerely,
Annaka

Saturday, February 22, 2014

A SLAVE TO TSC . . . ?

To TSC (Tuberous Sclerosis Complex):

We had never heard of you when you randomly entered our lives,
You ruthlessly descended on our first born son, changing the trajectory of his life.
How cruel you can be, filling our lives with calamity.
Because of you, our son endures severe autism and ADHD.
We are constantly guessing when he’s in pain, he cannot speak.

We never know what you will do next.
A new surprise challenge lurking around every corner.
So many life-threatening possibilities:
Brain trauma, kidney bleeds and maybe failure.
Will his heart stop beating? Or will he go into status epilepsy?

You are unrelenting, unforgiving, you see?
Controlling every single moment we breathe.
We are slaves to all your twists and turns.
We are not free: to travel, to play, to relax,
To make quick trips to the grocery store.

We cannot leave any door open,
Or any item overlooked in our house.
Or, it will end up ruined, destroyed, thrown about.
The financial burden you inflict is enormous.
You wreak havoc in every aspect of our lives.

You make us play a constant guessing game.
We don’t sleep. We are never at peace.
You demand all our time and energy.
I fear shutting the door when I lay my son down to sleep.
I panic, “Will my son live through this night?”

You leave us feeling crazy,
Fear driving our days and nights.
I see TSC in every ailment, big or small…
Every out-of-the-ordinary move could be a sign of something big.
I’m constantly questioning, “What is real and what is not?”

You control our past, present and future;
Have taken our free will. I despise you.
You inflict so much pain: emotional, mental, physical.
We are forced to bend to your command,
As you demand all our time and energy.

You leave us isolated. We feel so alone.
No sure answers or solutions.
Even professionals don’t know how to help.
You don’t draw empathy,
And leave us feeling like no one understands.

You are unknown to most,
Yet unlike cancer, you leave no possibility for a cure.
Unlike diabetes and heart disease, there is no way to proactively manage you.
You have created an impossible task,
As we try to deal with what you throw at our son.

You have tried to take my child from me.
In spite of this, he shines.
Through all the chaos, I can still admire his curly hair and his deep brown eyes.
His eyes: so inquisitive. There is so much there.
You try to block it, but I can see who he is.

You try to break us:
Creating harrowing situations that leave us in anguish.
You have come close to success so many times, making us question who we are.
But in those moments we fall to our knees.
Praying to God to help us through each tragedy.

Our son brings joy to all those whose paths he comes across.
Without you, who would we be?
Would our child’s accomplishments mean so much?
Would his laughter and smile be as bright?
You’ve made us realize: We are not here for him, he is here for us.


Tuesday, January 28, 2014

JUST CAN'T WRAP MY HEAD AROUND IT - PART II

Note: I wrote this a couple months ago but I haven't felt like it was the right time in my life to actually post it until things had improved. This post contains what I was experiencing at the time. I am doing much better now.

My out-of-body feeling continued while I was in New York. I tried to feel but I was numb. I continually longed for the end of all of this, to finally be able to feel again. I think this state of numbness was a form of self-protection, a way to get through what was to come. (Nami's Neurosurgeon Explaining the Surgery Process on "The Doctors")

I tried to keep busy while in New York. I wanted to stay occupied with activities to keep my emotions from taking over my body. Thanks to my unbelievably supportive family rotating through, we had at least 3 adults there most of the time. This allowed each of us much needed time away from the hospital. My family also provided safe and consistent care for our other son while we were away. It was nice to have different family members always arriving in New York because it gave me something to look forward to and allowed me to experience some of New York. This helped make the time pass quickly.


Riding w/ Aunt Jill on the subway
Cousin Maddie and Uncle Ben at GMA
Walking Central Park w/Papa
 
                                                 Eating w/ Mima                                                    Aunts Lauren and Meridith at my bedside

One of the things I did with Salesi, my Dad, and Nami (the day before his surgery) was go to the 9/11 Memorial. I had been on a prior trip to NY, but Salesi hadn’t seen it. After the half hour or so that it took to get through the line/security check-points, we were able to enter the memorial. 


I was overcome by an immediate flood of emotion which took my breath away. I walked through the first part of the memorial with my family, but soon the build-up of emotions was so intense that it became debilitating. I quietly found a secluded area, sat down, put my head in my knees and bawled. It was the first time my heart was able to REALLY FEEL some of the extent of the gratitude I felt for all the sacrifices of my family, doctors, friends, students and strangers on Nami’s behalf.
At the 9/11 Memorial
I always knew how grateful I was in my head but I hadn’t allowed my heart and body to feel it. This memorial has a spiritual feeling. It is such hallowed ground where so much service and dedication has gone to honor the victims. This site allowed me to finally be able to connect with some of my feelings. I knew after about 15 minutes of heart-wrenching, body convulsing crying that I’d better find my family. After leaving that spot on the ground, I put on my sunglasses, closed back up and went right back into survival mode.

My level of my exhaustion increased through each procedure and throughout Nami’s hospital stay. (Posts of Surgery Updates on Nami's FB Page...July and August) I kept putting one foot in front of the other. I was so dazed that I couldn’t demonstrate the emotion I felt as my son went into a status seizure and nearly stopped breathing. He had at least 10 medical personnel working on him, trying to get him out of the seizure. I stayed by his head, held his hand and talked him through the entire thing, like I had done on so many previous occasions. The medical personnel were near bagging him multiple times as his oxygen levels plummeted, but luckily he kept breathing. The seizure lasted well over an hour, but was most intense for about an hour. When it was over I couldn’t cry, I couldn’t show my relief, I couldn’t show any emotion.


One of the problems with being at this level of exhaustion and having the inability to show emotion is that I was irrational. When all the visits from my family were over, Salesi and I were left in New York for almost a week with Nami, waiting for him to be cleared to come home. I wanted to keep pushing through, making my days busy, but Salesi’s reaction to his exhaustion was the desire to sleep. Most days Salesi somewhat accommodated me before returning to the hotel to nap, at which point I would take Nami and go do something else.

Thanks to Friends for Free Tickets!

At the Aquarium
  
 Coney Island
Under Brooklyn Bridge
Riding a Ferry on East River


One night I returned from being out with Nami and Salesi wanted to go workout in the gym. I was so drained and couldn’t stay awake to keep the rambunctious Nami in bed. He had escaped out of the hotel room on so many occasions since being released from the hospital that I put the guard-lock on for fear he’d leave and I would be asleep when he did.

I fell into such a deep sleep that I did not hear Salesi when he returned from working out. According to Salesi he knocked and knocked and yelled into the room to try and get my attention. He finally went and got security for help when I didn’t respond. Nami came to the door and was yelling back at Salesi and the guards couldn’t figure out why Nami wouldn’t just open the door. Salesi tried to explain to the security that he was severely autistic and nonverbal, that he just had brain surgery and that’s why he couldn’t open the door.

At this point, apparently everyone in the hallway was awake, looking out their doors at the chaos that was outside my door. Salesi feared I was dead and that he’d be accused of murdering me. The guards were getting ready to break down the door when they finally got a hold of the one security guy who could open the door despite the guard-lock. They got it open and Salesi came in to check if I was alright. Once he realized I was okay, he told the security and they left.

My version: I was sleeping soundly when all-the-sudden Salesi rudely yanked me, turning me over while frantically asking, “Are you okay!?!” I was so annoyed with him for bothering me I responded, “What’s your problem?” at which point he repeated, “Are you okay!?!” I replied, “I’m fine. Let me sleep.” I did not get the full version of events until the next morning because I could not stay awake to hear anything he was saying.

With Salesi and me at the helm, we are lucky we made it out of New York in one piece.


Leaving the Hotel
We Made it Through the Flight!
Awesome Friends Decorated Our House

After ALL this…the months of preparation; the strain emotionally, mentally, physically; the level of exhaustion I’d reached…I thought that we would return home and things would just get better from here on out. I knew I would be recovering for a couple weeks, but life HAD to get better. 

Imagine my shock and disappointment when this did NOT happen. My exhaustion, stress, and anxiety actually all increased. “HOW COULD THIS HAPPEN?!?!” I couldn’t wrap my head around our new reality.

The good news: Nami’s seizures drastically improved.  


The bad news: Nami did not sleep, he screamed and cried all day long, he pounded on the walls and doors when we put him in his room to sleep, he hit and kicked me all day, every day, he destroyed everything in the house, he found ways to smear his poop everywhere just about every time he went (unless I noticed it and changed him immediately), he threw anything and everything he could get his hands on at me including toys, toy chests, plates, forks, and once a sharp knife whizzed right past my eye (I still don’t know how he got a hold of it). He was so unhappy. 

This was NOT supposed to happen! Our home was a chaotic mess, no one slept, we hardly ate, bills piled up (including hundreds of thousands of dollars in medical bills). Up to this point I had survived. I had been able to put that one foot in front of the other. Now I was falling apart. I got sick. I could not function. But our lives continued on in this 24/7 madness. See HOW TO NAMI-PROOF MY HOUSE

I can’t count the number of times I just wanted the earth to open up and swallow our house whole with all of us in it. 


I eventually had to return to work, but I barely made it through my days. What I thought was impossible happened: I became even more exhausted. I was desperate to find answers to help Nami. We consulted the doctors in New York, we visited the neurology team back home, we visited Nami’s geneticist, we had a sleep study/eeg done, we had a brain MRI done, we scheduled more testing for a possible second brain surgery and were finally able to make an appointment to see a psychiatrist. NO ONE AND NO TEST HAD CLEAR ANSWERS FOR US! 

We worked with Nami’s doctors to try and help him sleep. His iron was low so we added an iron supplement. We tried different sleep meds. I had so much hope in each step we tried that I would convince myself that it was working for a day or two. Then reality would sink in: things were not improving. 

Nami’s behavior was uncontrollable. No one knew what to tell us. No one could ease our situation. Was it ADHD? Would we have to add yet another med? Was he still having too many seizures? Was he in pain? Was he just too frustrated because he can’t talk?

Months went by without any improvement. I was beyond a zombie state of being. I couldn’t connect with my kids. This was unfair to them. They were both so unhappy. I’d go to work and come home and sleep. I avoided going out to shop or run any errands because I was too beat. On the days I didn’t leave the house, my hygiene left much to be desired. The only other person who knew exactly what I was feeling was Salesi and he was as bad off as me. We were of no help to each other because neither of us had anything left to give. I’ve never felt more unhappy or miserable in my life. I would often cry out, “This was NOT supposed to happen! The surgery was supposed to make things better!"

I finally resigned myself to never feeling happy…I mean really happy, again. I truly believed this was my new reality and it was not going to change. Anytime someone mentioned how we, as humans, should be trying to be happy in our lives, I’d cringe and think, “Sure, other people can find happiness, but not me…not in this life anyway.”

I was a slave to my life. I had no agency. I was doing everything in my power to help our family’s situation yet each day brought on more strain…more trials…more tragedies. My sorrow was too much to bear…even more so than any other time-period and trial I had endured in my life. I was stuck and my power to choose anything for myself was gone. There was no end in sight…no hope…no happiness.

I tried over and over to accept our new reality, just so that I could endure it. I wasn’t enduring it.
I felt so desperate, “Will I ever get out of this darkness?” I no longer wanted to live. I prayed...begged...for a tragedy take all of us at once. I could not see any other way out.

Generally throughout my life, it’s hard for me to feel truly broken for more than a couple days at a time. But this? It was week after week after week into months on end. “What lesson is to be learned?” “Where is the positive take on this?” I could not find a single one.

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