My youngest son, Erik is 17 yrs old. He has developmental challenges and today we decided to take him to see Toy Story 4. Afterall, we have all had a long month with his knee injury and he is finally up and walking again.
The last time he was in a movie theater to try and see something was when Rio was out and that was 2011. I remember he was 9-1/2 years old at that time. He had a fear of darkness and loud noises. It was a “sensory film” featured at our local AMC theater. This was inspired by individuals living with autism and/or other special needs. It was supposed to be a movie with the lights dimmed low, and the sound not as loud as normal showings.
However, I’ll never forget that day because the person in charge of operations, messed up and blasted the sound before turning it down, and forgot to leave the lights dimmed at first. It took a lot of coaching, verbal cues to survive that movie. I remember other children running around and walking the aisles. My son sat still frightened in his reclining chair, while wearing his headphones. I don’t recall being able to focus on the movie myself because I was too busy making sure he was okay. I also remember telling myself and my husband, “Never again! I guess we’ll never be able to take him to a movie theater because it was just too much.” And from that time forward to today, our family has always waited until summer and been fortunate that there is a drive-in theater where we can go together with no issues.
HOWEVER!! Today, was a completely different story! I waited until last night to tell him we are taking him to see Toy Story 4. Anyone else who has a special child like my Erik, probably can relate to picking your battles and knowing your child’s behaviors. I wait to tell him things because otherwise I have to hear about it all day and everyday leading up to the event. And sometimes it causes anxiety for him which can backfire our plans.
Anyways, I told him last night and he was happy. He picked up his phone that and began typing on his notepad, “tomorrow we go see movie toy story 4 mom and dad”. And he did his little self talk all evening.
On the drive to the theater my own anxiety began to build a little, thinking what if he talks to loudly and disrupts the others, or if he begins throwing a fit? But I explained to him during the drive there, “Erik the movie theater is going to be dark inside but it will be okay, and you will be safe, me and dad will be with you and it’s gonna kinda be like the little theater at your school when you had your senior awards night.” He was okay with that. I had to try and use a familiar experience with a good outcome that he could relate to. And it worked! Because when we got to the theater he went up a few stairs and sat in the chair. At first he seemed afraid, but he told himself, “its okay, Erik, this is just like your school when you had senior awards night, your okay, your gonna see Toy Story and get to sing your song, you got a friend in me.”
The good thing is that the recliner chairs in the theater are very similar to what we have at home so that fear he had at 9-1/2 for reclining back was not there anymore. His dad showed him where the buttons were and he reclined his feet and they shared their popcorn and he was set. At first I thought he was going to startle from the sound so I brought his head phones just in case, but he didn’t need them. I was so proud of him!
He even got to sing his favorite theme song along with the movie. And he made a couple of remarks during the movie which were appropriate during some of the scenes with Woody and Buzz and some new characters. I won’t say anymore, because I don’t want to spoil it for those who haven’t seen it yet.
As the film ended after about an hour and a half, we walked to the van and my son said, “I did it, I saw Toy Story 4 now and I did good.” My husband and I reassured him that indeed he did a great job.
I wrote this article today to hopefully inspire another mom or caregiver that may have lost hope or might be feeling like they won’t ever be able to take their child to do things that others can do.
To anyone who is reading this and has walked along my path, I will just say, what didn’t go well today, doesn’t mean it won’t go well for you in the future. Never give up hope for your loved one / child’s abilities to accomplish even the smallest of things. What other families may take for granted we know that these small things are a huge milestone for us.
It may take months for some to reach that next milestone and years for others, but just keep trying and insert new experiences here and there. Allow your child to develop courage and overcome fears, while you learn what it is to appreciate the small things in life. Those small things that we sometimes don’t appreciate because maybe we spend too much time complaining about things.
I think what is most helpful for me, is knowing what MY OWN REALITY is and not wishing to be like other families. Because if I keep measuring my son’s growth to that of someone he isn’t than I’m living in a fantasy and not reality.
I used to be like that, and its not helpful and it wasn’t good. Anyone who has a special needs child can probably relate to feeling like your world is different and unrelatable. But in fact, it is much more common than you have allowed yourself to experience. It seems as though most of us are inside, behind closed doors, kept quiet and shielded from potential harm. But I’ve discovered that there is a community for us.
I hope everyone has something to appreciate about their child and themselves. Even if it seems little. An accomplishment is an accomplishment no matter what. And today, July 9th, 2019. This was Eriks, that he was able to see a movie in a theater without being afraid and without being disruptive. And it wasn’t even a sensory film and it was at a much nicer theater than the AMC that we attended in 2011.
Thanks for being here and thanks for listening. If there is another mom, dad or caregiver reading this that feels discouraged about their child’s diagnosis or development please trust the process and keep your faith. It will happen for you in due time.
My son 4months old, after ICD implant surgery in 2001.
He is teaching me about living life to its fullest potential even when things are designed to get you down. He has taught me how to have joy even in the midst of loss and tragedy. If only the world could know just how amazing this kid is! Nearly every person who has a chance to meet and interact with him, always says he is one of a kind.
I’m so blessed to have Erik as my son just as he is, developmental delays and ALL. And I would NOT change a single thing about him. He brightens my day. You would think as a mom I am teaching him about life, but he is indeed teaching me instead. He has compassion for others to the extent that he prays each night and mentions by name others who he has met or knows that are in need of something that only God can give to them. He just has such a confidence that I admire. And he has a faith that is undeniable.
This kid could have mustard on his shirt, walk into a room of executives and still be confident to walk up, shake their hand, introduce himself and spark a conversation without feeling any shame. Seriously!
In spite of the sufferings along the journey, in spite of all the tears I cried, praying consistently down through the years for strength and endurance, I have to say, it’s evident that this has all been a part of Gods plan to teach me humility, patience, forbearance, compassion, empathy, how to suffer, giving me a testimony to inspire others, and to see the glory in the midst of it all.
Everybody always wants blessings but nobody ever wants to suffer. Everyone wants to skip passed the bad stuff and go straight to the good stuff. But that didn’t happen in my journey. Yet, now, in hindsight, I would not change a thing. I’ve learned so much watching Erik grow and develop at his pace. It’s because my family has Erik, that his siblings have compassion for others and without stigma or judgment. It’s because of Erik that we understand struggles and acceptance. It’s because of Erik along with my other children who battle mental illness, that I created this website called “stigmasnomore.com”. It’s because of God, our faith and HIS grace that we are able to share this journey with others. It’s because of the suffering that others didn’t see, that we are blessed that others do see.
Thank you for being here. This next chapter is going to just keep getting better!
I am beginning to write my first book soon, so I hope once it’s on bookshelves, that you will buy it and help it become a best seller.
You can donate here if you’d like to help me with start up costs. ⏬⏬⏬⏬
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I want to tell everyone who reads this article, who is a parent or caregiver, always stay the course, and don’t measure your growth to that of others instead measure to your own. Everyone comes from different walks of life, each at their own pace. Slow and steady wins the race. Don’t rush the process or you might wind up with raw results. Just keep going.
My son, Erik is a senior this year. He will be graduating this Thursday and he is so full of emotions.
He fractured his knee this past Wednesday at school during his bike club. So he is back in a wheelchair. He hasn’t had to use one since he was a smaller child. Back then it was from his developmental delays, today its because he fractured his knee somehow.
Prayers are appreciated. We have had to pay for a ramp since insurance didn’t cover the prescription. But the most important thing is that he is still in good spirits.
His teachers and therapists at school have been amazing! We are truly going to miss them all. He is going to miss seeing his friends everyday.
My compassion for others who are wheelchair bound has increased even more because I am getting only a fraction of what they live with on a daily but I’m speaking from a caregiver position.
I’m sharing some inspiring video of my son at his classroom party and his senior awards night. He received two awards at senior awards night as Valedictorian and Superintendents scholarship award.
I love his spirit! Even when he’s down, he’s up.
And again, don’t you ever let anyone, I repeat, ANYONE tell you what your child will never be able to do! Because faith and a will to do, have the final say!
If there’s one thing I have learned along my journey with life and God, its this. Sometimes God put me in temporary inconvenient places because He was preparing me for a permanent position with promotion. So when your dealing with hardship, just know it’s only temporary. All that stressing is just a pathway to your blessing.
I’m talking about what I know, not what I heard. I’m speaking from my own experience and not that of someone else’s.
I’m hoping to give others some inspiration and encouragement this evening.
Thanks for being here. Hang in there! It’s only temporary.
Never allow others to redefine ur character & who God called u to become. And never allow them to influence u stray off the path that u know God set before u. Every1s journey is different. Its not worth chasing after other ppls dreams, instead chase after ur own.
If I can be very candid, this used to be ME!! ➡UNTOUCHED, UNINFORMED, UNAWARE, UNEDUCATED 💯💯💯! UNTIL the paths I once walked “untouched” “uninformed” “unaware” “uneducated” have now become the paths which lead me into being “touched” informed” “aware” and “educated”. Which further pushed me into finding my purpose and I’ve become passionate about advocating for people with mental health disorders and developmental disabilities. Why? Because I understand the struggle, daily battles. Because I see the stigma, the false representations, assumptions, speculations, infiltrated by the media. They edit, crop, filter out to show what they want uninformed people to see as “mentally ill” or “disabled”. Which not only places the idea of limitations on people but also we are somewhat forced to use some of the same terms when writing articles such as this one, just to grab the attention of the uninformed.
This is a quick sketch for a visual.
Thank you for being here. I don’t take lightly the support you’ve given me by your comments, follows and shares. Again, this is my own journey. Every person has their own path, journey, and story to tell. This just happens to be mine, For now……until God says otherwise.
People come from so many different walks of life. Every individual has their own story to share. Some of us have similar paths but very different views and outcomes. Each one being born into this world to live out a purpose that has been designed specifically for that person.
Others ask me, how do I manage to do it ALL with the various challenges my children face? How do I keep it together? How am I able to financially support a big family with one source of income? When do I have time for myself? When do I get rest?
My answers, all lead to my faith in God. My Jesus journey hasnt been a bed of roses, but I have learned to trust in him down through the years. I was once skeptical about 22 years ago when I first walked into the church doors. I wasn’t raised in church and in fact very opposite. Bibles, prayer and Sunday school was never a thing of my upbringing. I’ve been tested, tried, retested and retried but in the end God has shown himself faithful even in times when I wasn’t. 22 years ago is when I came to the Lord and I’ve remained with Him since.
I keep it together with prayer, meditation, as well as natural things such as exercise at times, counseling, keeping healthy relationships, and dismissing toxic ones.
I have had to quit so many jobs that I truly enjoyed due to the health crisis of my children’s lives. Money cannot replace my children or the emotions that came along with each chapter of life that was impactful. God shall supply all my needs, is what His word says and HE has yet to fail me. My husband is the sole source of earned income, but the key is being responsible with what we have been blessed with, while walking by faith not by sight.
My free time consists of staying up late once everyone is off to bed and tucked in their beds. My time of enjoyment is when my children are all doing well and no one is in the hospital as a result of their diagnoses. When I can look around and see that they are happy and fulfilling their own dreams and goals. Not fussing about a dirty room anymore, because life has much bigger issues and things that I should draw my attention toward. I rest in the Lord, meaning I know even in the bad times He is going to handle it and I just have to endure the process. My family and I have been thrown into the fiery furnace so many times, yet God made us fireproof. While the fire was intended to burn us up, instead it burnt up everything toxic around us. The heat purified things that were once impure.
My husband is not God, nor is he a god. But he is my partner for life. He is my one and only best friend. I honor him as the man he has proved himself to be in my life and in his role, not only as a husband but a good father to our 4 children.
Our relationship began in high school and we’ve grown together, facing much adversity from racial slurs, verbal attacks because were an interracial couple. But we stuck together and we are still together, stronger by our faith. If it had not been for the Lord, I truly do not think we would still be together today.
Presently, today my family is somewhat broken but still good as stitch would say from that cartoon. My children are all growing into adults. We are all at different stages of our lives. I have accepted my role as a mom and advocate. I am used to being home now. My mindset is different than it used to be in the “corporate world”. I no longer belittle my role as a “stay home mom or housewife”. I am NO where near perfect, not at all, and I’m the first one to raise my hand and admit my every fault and sin, but I also know not to stay down for too long after being knocked over. I’m not afraid anymore. I know there are brighter and better days ahead. I know because I’ve been where others are now, and I’ve been there before but I have also been brought out to see the other side. I’ve suffered many things, but I am a survivor with a voice to speak not only for myself, my children but others who haven’t found their voice yet.
I have the most valuable role and it’s what I am called to do. To be here for my children and husband without being exhausted from a 8 hour job that used to rob me of quality time with them.
My sole focus is to help my children become independent and develop life skills. Learning how to be a person of integrity, being kind to everyone. Supporting them in hardships and encouraging them to hold onto their faith in God for themselves. Not because of “religious tradition” but to develop and spend time in their own relationship with God. Because when life hits hard, and crisis disrupts your life, that college degree, part-time job, fancy car, new Jordan shoes, favorite song, these will no longer matter.
They have all been blessed enough at such young ages with various hardships and tribulations that they have already begun to learn that God is their only source for help in times of trouble. And in hindsight, I’m grateful even though those moments seemed dark and hopeless. Well you can’t find hope unless you’ve been hopeless right?
I didnt write this article to preach, or to impress my beliefs upon you. I’m simply just answering the questions that others seem to ask me time and time again. This is what works for me and my family. We tried everything else, but God is and has been the only one and consistent support in life.
Thank you for listening and being here. Blessings to you.
I’m writing tonight from a place of compassion and encouragement to others.
My youngest son has developmental challenges. He is often mistaken for having Autism yet he has never been diagnosed. To me it doesn’t make any difference, he is just Erik and I love him as he is. Many of his friends fall on the spectrum of Autism. Here is one of his friends he’s grown up with down through the years. His name is Nikolas. He is nonverbal but very intelligent. Nik uses other ways to communicate with us.
I read alot of posts from other moms, dads, about their children with regard to concerns about their growth and development. Mostly new parents who’ve just received that news of their child’s diagnosis and prognosis of what his/her future might look like.
I would like to just share a little more of my son’s journey. Some of his behaviors and delayed milestones as he developed down through the years. He could not sit up straight on his own until he was almost 2 years old. He had aspiration issues when swallowing and used to have feeding therapy. He used to be nonverbal and have tantrums often. He used to use a speech device to communicate and learned how to sign.
He would bang his head on the floor, throwing himself backwards, backing up into the wall and bang it on the TV, or picture window, and outside on the concrete. There was a time when we had just brought our brand new big screen TV and he decided to back up to the screen and bang his head, caving in the entire screen. My husband had to be creative and use heavy duty packaging tape to pop the screen back out. This was around when televisions were still the bulky sets on wheels. Erik also wore a helmet during school to protect himself from head trauma because he would just throw himself backwards during a tantrum.
I can recall another vivid memory of a time when our entire family had the idea to go to the drive-in since Erik didn’t do well in a normal theater. He was fearful of the dark, wouldn’t tolerate loud noises, and it was too much stimulation for him. There was a playground and gravel roads at this drive-in. He used to love playing with sand in those days. Anyways, he was sitting on the ground of the theater rather than playing on the swing set or in the play area. He wanted to sit on the ground and kick the gravel, and feel the dirt in his hands while rocking back and forth. So we let him, since this was normal for us. This is the part I’ll never forget. There was this other small child who walked up to him and said hi to him. He couldn’t talk then, so his way of responding was making a “whoooo wooooo” sound and rocking much faster. So she looks at him puzzled because she couldn’t see from the outward appearance that he was “different”. Then she looked at me and said, “what’s wrong with him?, And that was the first time I had ever had a small child ask me something like that, so I was stumped and smiled and replied, “nothing is wrong with him, he’s just special”. She said, “I’m special too” and she then ran off to play. This was a somewhat educational moment for me to teach myself how I was to respond to that when being questioned by a small child???
Erik began school at age 3 and wasn’t walking yet. He was transported to and from school in a wheelchair as well as during school hours. His prognosis given by doctors was that he wasn’t even going to live long. Or he would be a “vegetable” if he did survive. It was through a lot of prayers and continual faith in God to heal my son that he is still here today.
He wasn’t toilet trained until his sophomore year, until then he wore adult men’s depends diapers. His gross and fine motor skills were impacted by his trauma as an infant. He walks with a slight limp. He does not look where he’s walking instead he uses and has always relied upon his other senses to guide him. He feels his way with his feet, and doesn’t miss a beat. Its as though he has the senses of a blind person. I say that not knowing what exactly a person that is blind is like. But you get the picture.
I wanted to just say all that to say this. Just because the prognosis wasn’t good, doesn’t mean his life didn’t end up being good. SURE it took a whole lot of patience, love, nurturing, commitment, doctors appointments, therapy sessions for OT, PT, Speech, and specialists, sleepless nights, and prayer but it was worth every moment.
He is 17 now. He is a senior this year. He talks and loves to be social with everybody. Yes, there are times people don’t understand his pronunciation but he’s came a mighty long way. He no longer bangs his head. He is able to eat and feed himself after we prep his meals and cut pieces and provide a straw. He is still working on wiping himself for toileting and often clogs my toilet almost daily, but it’s about being patient. It’s a work in progress.
Once his heart stabilized and became healthy, he began having seizures often. And that lasted for a few years, and again I prayed asking God to heal him from them. After many years of consistently praying strategically, my prayers were answered. I have had ALOT of sleepless continuous nights as he was growing.
He used to sleep in our room so I could keep watch over him. Then after years of stability, he had his own room and I still wasn’t able to sleep through the night. Often times I would get up several times to go check on him and make sure he was breathing and ok.
The seizures. The ventricular tachycardia, and hypertrophic cardiomyopathy are diagnoses of his past. They can now be officially considered his “medical history”. Because their no longer in his present life. Now we are where we are. Erik has “developmental disabilities” and for the most part he is accepted for who he is. However, this depends upon the environment we are in, and whether people know him or not. We still get the stares, the oddball looks, and whispering as we pass by. At this point, it doesn’t bother me as much as it used to. The difference between then and now, I speak up and I’m his voice, his advocate.
As I said, he’s 17 now. He is working on being fully independent with toileting. This year he is a senior and will be graduating. For his high school homecoming assembly he was nominated as “Lord of the day” and his friend “Lady of the day”. He’s actually a pretty popular student and well-known. He will gradutate this year and transition into a community program after high school.
He is a creature of habit and has a daily routine. It’s the same rocking motion that comforts him as he sits and watches t.v. or eats, or a bouncy ball to sit and bounce on while playing the WII. He eats the same few selective foods every single day. He is a texture person, certain textures he gags. He enjoys attending church, he loves to sing praises to God, and he loves to watch toddler shows or certain preachers on TBN or Daystar. He still bathes with bathtoys and Mr Bubble. He bowls with a ramp to assist him and he loves bowling. He wears headphones for noise reduction, the construction or gun range type. He hates the 4th of July so we don’t celebrate anymore, which is fine because I don’t like the noise either. He doesn’t like New Year’s Eve either because they often light fireworks or shoot guns in our neighborhood. And this is all at age 17.
Some people might look at this and question my faith in God, maybe their not a believer for their own reasons, but I just want to say I prayed for many years and I used to ask God to make my son “whole” and one night I had a dream and I woke up with the thought that God was showing me in my dream that my son, my Erik, was already made whole. What I had looked at as him being somewhat “broken” or “in need of healing” in the physical, God was saying he is whole in spirit. He is right where he’s suppose to be, as he is suppose to be and he is who he is suppose to be. He is still a typical individual just like anyone else, he still has tantrums at times, he still has feelings. He’s got such a genuine spirit for God. Erik knows who saved his life, literally. He is unique, he has a contrite heart and a committed spirit.
And I believe God’s grace and mercy are the only reasons why my son is still here today. And there is a greater purpose for why he endured such great tribulation, and suffering. With many obstacles to overcome. Many roadblocks to conquer. Several battles we fought and won.
This may sound odd, but I know he doesn’t see himself as being any different than the next person. He always puts forth effort to try things even if he can’t accomplish it right now. He at least tries with his best effort. One other memorable moment I have is his 5th grade skate party field trip. They attempted to get him a walker thing to hold and skate. He just couldn’t even stand upright. Yet he so badly wanted to be out there skating with friends, but instead he sat out the entire time with his classmate.
There are things he is good at, and there are things he is still learning and there are some things he may never be able to do. And I’m okay with that, because I’ve accepted him as he is. I used to live in a “fantasy world” and be unrealistic somewhat with his capabilities, yet now I know it’s better for him and myself to meet him right where he’s at and support him at his speed and level of development.
My husband and I are prepared to care for him until we can no longer do it. I’m optimistic about his future. He might still be in his 30s and older watching Barney or Toy Story but this is my Erik and I love him for who he is.
Anyways, I just hope to encourage another stressed out mom, dad or parent that has a child with health care challenges and possibly developmental disabilities. Don’t give up hope for brighter days. Don’t settle with a negative prognosis from a doctor. Don’t limit your child’s development. Be patient, be involved, be realistic, and persistent in prayer, even if it doesn’t feel or seem like God is present. It’s a journey at times, many days will seem dark with heavy clouds and thunderstorms but hang in there. Trouble doesn’t last always. Weeping may endure for a night, but joy will come one morning.
Thank you for letting me be me and share my journey. Hopefully someone is inspired. I know this also, when your “deep in it” it doesn’t seem like there is any inspiration or happiness but it will eventually be different one day. Today will never come again. And time is the one thing you cannot get back. Make the best of each moment.
I’m not here to push “religion” but I am here to express the belief I have in the faith I have for the God I choose to believe in, Jesus Christ. And how my faith has worked in my favor. And I’m most definitely not trying to give any impression that I or my son are the perfect examples of mankind, because I will be the first to humbly raise my hand and admit that if you are looking for a perfect example I’m not that person, yet I do strive my best to be a somewhat decent human being.
Everyone has someone or something that helps keep them motivated and it was my faith and God who helped me along my journey.
Let me take you back to a chapter from my life when trusting God wasn’t as easy as it is written. It was one month after the 9-11 attacks. My husband and I had relocated to Tacoma from Seattle. We had a lot of changes taking place in our family. We had just moved to a new city, brought our first home and I had just given birth to our fourth child, another son. And I had just began pursuing a higher education to become a legal secretary. Life as we knew it was going better than we could imagine. Until that very morning of October 26, 2001. I will never forget that Friday morning. That was when life changed significantly for my entire family, specifically my youngest son. The events, challenges, and trauma were about to take me on the most horrifying, faith-building experience of my life. Here goes……
So I gave birth to our fourth child in August on my birthday. Yes, I was in labor on my birthday. My son was born normal and healthy and on time with no complications. But none of that seemed to matter now. Because at his precious young age of 2 months, he suffered cardiac arrest. I had just finished breast feeding him and laid him down for his nap. A few moments later I heard him crying so I went to pick him up, and the very instant I lifted him, his cry began to change in sound. He began to sound like one of those monsters in a horror film, as if he sounded “possessed” that’s truly the only way I can describe the way I heard his cry. Initially I thought he was really gassy and just needed to pass gas. But when his cry began to sound “different” it became a major concern. As a mom, you know when something isn’t right. So I called my husband at work and he came to the phone, and I told him our son wasn’t breathing right, and he was crying weird. Then I proceeded to put my sons face up to the phone to try and let my husband hear what he sounded like. My husband explained it was probably nothing, and that our son was still stuffed up from a cold he had been getting over. However, while on that phone call, my son stopped breathing while in my arms. And I yelled into the phone, “He’s not breathing, He’s not breathing anymore!” My husband had to literally tell me to dial 911. It’s easy for others to say, that is common sense, but at that very moment, it was like I was frozen in time for those split seconds and I panicked because this was so unexpected. The 911 operator had to walk me through doing a finger sweep as well as infant CPR, but it wasn’t working. My sons tongue was stiff, his face was bluish/purple. His body was straight, stiff and hard. It was as if his spirit had left his body. He was dead in my arms. The aid car and medics seemed like they took forever but that was only because I was in urgent need of help. I began praying and calling on the Lord. My other 2 toddlers were home with me, while my oldest was at school. Meanwhile, my husband had to commute from Bellevue to Tacoma as he left work immediately to race home. By the time he got home, the medics had already taken my son to the closest hospital and one medic stayed behind so we could follow them, because we had just moved to Tacoma and didn’t know where anything was. I remember my husband running inside and heading upstairs, asking me, “where’s my son?” I said, “they took him”. I was still in the middle of getting my 2 children together so we could head to the hospital. He then asked me, “Was he breathing?” I said, “no”. He began to weep. I didn’t have time to weep. My mind was focused on Jesus, prayer and putting my faith into action. It was difficult to explain to a 1-year-old and a 2-year-old that their baby brother was not doing good. I just remember them standing there watching these people work on their tiny baby brother. There he laid, lifeless, stiff and cold. I stood there pacing back and forth, praying out loud in Jesus name, carelessly that others were around.
We finally arrived to the emergency department of the children’s hospital. Upon entering his room, there was a doctor and a nurse who said they were able to revive him with some Epinephrine. And then they began to grill me as if I did something wrong. The nurse asked me in a very rude mannerism why his potassium levels were so low? I told her I didn’t know. And then went onto ask her what does potassium levels have to do with his state? She didn’t answer me. Anyways, without going into all the fine details of every single thing. I will share with you the meaningful moments and explain just what it meant to me, personally, to trust in the Lord while ALL odds were against my faith, yet again, but in a very different way and at a more intense level and category of belief.
After being questioned over and over again by doctors, nurses, and case workers, about what happened at home with my son. They finally backed off, after my son’s heart rate shot up to 233 beats per min while in the PICU. (Pediatric Intensive Care Unit). I stayed by his bedside 24/7 except to use the toilet. I wanted to make sure he was getting the best care from the doctors and staff and that he was not being ignored. I asked every question, inquired about every medication that was pumped into his little veins, along with side effects, and became so familiar with the ventilator and the machine that kept his oxygen levels, heart rate and blood pressures that I knew how to turn the volumes down and when to call for the nurse. At this point I still hadn’t allowed myself to process the trauma. I still hadn’t allowed myself to cry a tear. My husband wasn’t in the room often, because he couldn’t handle seeing our son like this. And although he wasn’t physically present as much as I hoped he would be, I just knew God was strengthening me during what was supposed to be a horrible time. In hindsight, now looking back I can truly accredit my strength to my Lord and Savior, Jesus Christ.
While my son was in the PICU, I hadn’t slept in days, probably weeks. I got comfortable after a few weeks being able to leave his room for a short amount of time. I would go sit with my husband down the hall in another room and console him. Then I would walk the halls of the hospital like I owned the place. At that time, I knew all the staff on that floor and they all knew me. I would walk around with my hair undone and my pajamas still on from the night before and my eyes barely able to stay opened, burning from days of not sleeping. I didn’t care, I just wanted to know that I was here with my son. I just wanted to see God move on my act of faith. I just wanted my baby to be okay. I wanted him to be able to breathe on his own again and I wanted him to know he wasn’t alone in that room. I wanted him to hear my voice and not forget me as he laid there on life support. They offered to let me use an electric double breast pump so I could continue to pump. Even though he wasn’t able to be fed at that time. After about a week or two, I just remember asking the doctors if they could wean him down from all the IV drugs because I wanted to see my baby again. Not some lifeless baby who was being kept alive by a machine. I had faith and hope that he would be okay. I begged them to let me take him back home as we approached the holidays. Because he went into the hospital on October 26, 2001 and he came home on November 19th. I’ll get to that in a moment. So after much education of the pros and cons of taking him home and signing a waiver from the hospital because I was going against doctors recommendations of wanting him discharged. They agreed to let me take him home and gave me a refresher in infant CPR before being discharged. I was completely aware of the risks involved. They explained he could have another cardiac arrest and he could die next time for sure. However, for some people reading this, you might feel I made the wrong choice, but that’s not how the story ends. So keep reading through to the end. These doctors and staff knew I was leaning on my faith in God and not medicine alone. And that I didn’t care what they said. I just wanted to take my baby home and be a family again with my other 3 children and husband. I wanted to celebrate our holiday at home even if they tried convincing me it could be the last one with him being here. That was even more the reason why I wanted to take him home. I told that pediatric cardiologist, that I was fully aware he could die at home, but I also said, to him, “he could also die here in the hospital! You cannot guarantee me that your medicine is going to work, or that by him staying on all these anesthesia medications isn’t going to effect him?!” So I told him, “I would much rather take my chances with GOD and at home.” So we were discharged on Monday, November 19th. I was relieved, scared, worried, hopeful, and exhausted all at the same time. Unfortunately, just days later on November 22nd, Thanksgiving morning, my son was laying in the bed with me and my husband and he went back into another cardiac arrest, only this time I knew CPR and wasn’t panicked. My husband called 911 as I performed chest compressions on my son until the medics arrived. I was in my bra and panties, but in situations like these you don’t care, because your sole focus is what’s in front of you. And that was my son’s life. This time around my son, our son, hadn’t completely stopped breathing, but his breaths were fading and weak. Once again they took him back to that same hospital. And I all I could think about was that doctor is going to shun me for going against his recommendations and the “enemy” was saying to me, “where is your God now?” Oh yes, my faith was being tested, tried, questioned, doubted, ridiculed, everything but good.
He was admitted back into the hospital once again. I remained steadfast in my faith. I believed in spite of what was in front of me, that my son would be healed and God would get the glory through my son’s story. I can’t explain it and I couldn’t explain it then either, but it is just this overwhelming feeling that came over me, this odd sense of peace and comfort that God had my back and that according to my faith, God was not going to let me down. Meanwhile, the doctors kept looking at me as if I was stupid and that my faith was a bunch of nonsense. They didn’t have to say anything, because their demeanor said it all, their body language, exemplified that I was just some idiot mom who shouldn’t have gone against their “expertise of medical practice”. I just remained quiet this time around and continued praying around the clock. During this very trying time, my son was yet again fighting for his life. Back on life support once again. Having to be shocked by an external defibrillator because he had several episodes of ventricular tachycardia and what they called “V-Tech runs”. And to top it off, all the other infant babies inside the PICU were dying all around us. Literally everyday another baby wasn’t going home to be with their family and instead I could hear the screams, weeping and cries of the mothers as they would pull that blue curtain and slide the glass door closed. I could see the pain and the hurt within the eyes of these other moms. Sad to think some of them came in around the same time as my family. I had only wondered if they had something to hold them, a hope to look to, a faith to stand upon? So I took it upon myself one day to reach out to this other mom, who’s son was on life support in the room next to my sons. I began to ask her how old her son was and what was the reason he was here? Ironically, her story was nearly identical to mine, of the first time around. She explained how she had been breast feeding her son and he began to cry and eventually stopped breathing. Chills went up my spine. It was a little creepy to be honest. Anyways, she too was pumping her breast milk as was I again. We both stored our containers filled with breast milk inside the tiny hospital fridge with our babies name labeled upon them. I met up with her later that day and we spent a short time in the cafeteria just enough for me to ask her if she believed in God and if it was okay for me to pray with her and for her son? She replied that she believed in God but that she wasn’t a religious person and she doesn’t go to church. She accepted the prayer from me and I was so hopeful for her son as I was my own. Sadly later that night, her son’s room had that same blue curtain pulled closed, glass door shut and she began to weep and I could hear her baby’s monitor flatline. She had decided to pull the plug on her son’s life support. My heart went out to her. I felt confused in that moment, wondering why she had given up hope? Was it because she allowed the bad news of the doctors to influence her decisions for his potential future? It wasn’t up to me to judge for her decision nor was it my position to decide what she thought was best for him. Later that evening, she left with her family. I was too speechless to say anything to her before she left. She was a stranger to me so I didn’t feel it was my place to say anything further to her. All I could do is pray for God to give her some form of comfort in her time of loss.
The following day, my son’s heart continued to have these rapid fast life threatening heart rhythms. And yet another pediatric cardiologist came in to meet with me and my husband after making her rounds. She sat us down and attempted to explain to us that our son has a heart condition called hypertrophic cardiomyopathy which in laments terms is a abnormally thick heart and has very serious life threatening complications associated with it. And his heart is failing to pump correctly and will continue to fail. She looked at me and said, “your son has less than a 30% chance of surviving this, and if he were to live, he will be in a vegetative state, he will likely never walk or talk.” My husband dropped his head and began to weep. I looked over to my husband, grabbed his hand and he looked at me and I said to him, “I’M NOT RECEIVING THAT”. See what you don’t know is that just because someone delivers horrible news, doesn’t mean you have to receive it. And I said this right in front of the doctor. She then asked if we wanted to talk with the hospital chaplain? I declined the offer and told her that we have our own pastor if we need support. I wasn’t about to let this lady doctor come up in here and tell me my son is going to die, or that he will be a vegetable and basically write him off as dead and ask me to have a hospital chaplain come in and pray as if it was his last few hours with us. Just because every other single baby around us had passed away or that their parent’s had decided to pull the plug, didn’t have influence on my faith. The doctor left out and my husband continued to weep, as I consoled him and spoke life and quoted every faith scripture and healing scripture I had been standing on.
Some time passed and the hospital determined that they were no longer fit to provide the care or level of expertise that my son’s life required at this point in time. So with much thought, prayer and patience, they said he needed to see an electrophysiologist but there were only two that they could refer to, one in Seattle and one in Portland. I asked which one had more experience and success rates? They said they can’t answer that, but what they could tell me was that the Seattle doctor was fairly new from internship and the Portland doctor was well established. I told them I want my son to go to Portland then because I didn’t him with an unexperienced doctor and being a guinea pig project. Yea I said that! They said there is one problem with that, and it was that I didn’t get to choose. There were factors to be considered. Our health insurance would only cover in state care and the only way that my son would be able to go to Portland was if the Seattle doctor for some reason was unavailable. So we prayed and prayed and asked God to make a way, and let his will be done. Long story short, the Seattle doctor became unavailable so my son was eligible to be transported to Portland. But now we had other obstacles to face, because he was needing to be airlifted, we had to wait for his blood pressure to become stable enough for transport and for his heart rhythm to be somewhat better controlled. He was eventually airlifted to Portland and I flew with him in this tiny Learjet like plane. They could only accommodate me to come along so my husband drove from Tacoma to Portland. Back then we had no navigation on our phones like today. Just paper mapquest print outs. And he left right away, while leaving my other 3 kids with a friend. As we arrived at the hospital roof top and got down to the floor of the hospital PICU in Portland, I thought to myself I wonder how long it will be before my husband arrives? I guess the Lord must have known to be his navigation that night because as they were wheeling my sons bed into the room and I was following behind, passing by the nurses station, in walks my husband through the doors! Seriously!
So let me back up, because I left out some other minor but important details. In between the first time of coming home and the second time of going back he was sent home on Amiodarone and propranolol which I was told at that time the amiodarone was the most potent medication for him and only available in an IV drip or I could get it filled at a compound pharmacy. So I did. In a nutshell, they weren’t effective. And because these medications only sedated him to be a zombie baby, I didn’t like the effects. So when we returned back the second time I told the doctors I did not want him on these medications any longer. I saw more harm to his organs that good for his heart. Call me stupid for this decision but the way I saw it was like this, if you couldn’t guarantee me that my son’s heart condition would improve on a medication that would likely cause his other organs to fail at some point than it wasn’t worth the risk for his quality of life. I was better off with my chances of faith in Jesus.
Back to the Portland hospital transport. The doctors in Tacoma told us my son was being transported to see an electrophysiologist because something was wrong with his electrical conduction of his heart and the way its pumping, more like fluttering. However, upon meeting with the EP doc, he says the original plan was to perform an EP study, but now this Portland doctor was suggesting a whole different surgical procedure. One that had rarely been done in infants and was considered extremely risky. He wanted to implant an internal defibrillator inside my sons abdomen. Typically they are implanted in the upper shoulder area of adults. It was explained that it would be the size of a pager and wires would be placed and the battery would need to be replaced every 6 – 10 years depending on how often it has to fire an electrical shock. Of course, this was not what we wanted to hear. But I wanted to do what was best for my son. I needed to know all the risks, all the pros and cons. Had he ever performed this surgery before? How great of a risk of infection is there? What if the device doesn’t work after it’s implanted? How long was the surgery going to take? What would recovery time look like? Would they be able to keep my son comfortable afterwards? I had a ton of questions.
Let me fast-forward just a little bit. So as you know I mentioned I had not allowed myself the time to “breakdown” or to process all the trauma. Well now, here we were in Portland at this children’s hospital and I was faced with decisions to make that were crucial to his survival and his future. This was the most difficult position any mom would have to be in. It was that following night after the doctor came and followed up with us and I said I needed more time. That very next night, I went straight to the nurses station after reading my bible and taping up holy scriptures print outs around my son’s hospital bed. I asked the lady at the desk if there was a room available that I could be alone? I was told there wasn’t and the only one that was vacant needed to stay available in case of emergency traumas during the night. So I walked out to the parking lot and went into my van. It was that very moment, that I finally allowed myself to feel every emotion, process all of what had happened to this point. I broke down and cried and yelled out to God. I asked him for guidance on what I was suppose to do? I kept saying, “I need a sign, I need a sign from you Lord!” I didn’t want to make any mistakes. Fear gripped me, I didn’t want to say yes to the surgery where he could potentially die on the operating table, and I didn’t want to deny the procedure that could potentially save his life. I was torn. Because the way I viewed it then, was that his life was already at risk either way. So after crying my eyes out, yelling and crying and snotting some more. I finally went back into his hospital room and began to think some more. I just watched the monitors as usual and watched him laying there asleep. Visitors came and went from local area churches that fellowshipped with us in Seattle. One pastor came inside the room and told us, he had never felt so much peace as he entered the room and felt as though everything was going to be alright. Another elder encouraged us that my son shall live and not die. It was encouraging to hear and we had our good moments. By this time in Portland, my husband had no choice but to be in the room with us and the Lord strengthened us in our weakest moment. We had gotten to a point where we were blasting our gospel music so loudly, and praising the Lord in his room that the nurses had to come tell us to keep it down. They were very supportive though, they even brought us a kid’s video gaming unit and we played Mario Kart to pass time and take our minds to another place for a brief moment. Anyways, it was that following afternoon, the day after I prayed outside in my van, that I got my sign from God. My son’s heart rate had been stable since the time we arrived in Portland and that was why I kept delaying, hoping he was recovering on his own. But that day, his heart rate shot up again and began fluttering and the doctor, nurses and staff came flooding in the room. Grabbing the “crash cart” defibrillator to shock his heart once again. It was after he stabilized again, that I gave the doctor the green light to proceed with the procedure to operate on his tiny body and insert the defibrillator. So the surgery took place on December 4th and it was a success. We were able to take him back home on December 10th, just in time for Christmas. His story was aired allover the news down in Portland, on television and in their local newspapers. I had no idea that my son was about to become a part of medical history. Only because his age, the type of surgery and it was rare. Now these days in 2019, its a lot more common for babies. It was an overwhelming moment, the news wanted to interview us, and we just wanted to go home! We drove home with our baby boy. It was such a great feeling to know if he were to have another cardiac arrest or runs of “v tech” that this device would shock him out of the life threatening arrhythmia. As we arrived home, our other 3 children were excited, but the local Tacoma news reporters were at our house. So one last interview and then we could focus on our family and celebrating life.
That’s not where this story ends. The miracle of this chapter in our lives, my son’s life, was and still is that doctors didn’t give him much chance of survival. I leaned on the Lord for healing and resurrection power. Even after the device was implanted successfully, they needed to monitor his activity every month to measure his heart activity. Amazingly, each month, they would put the probe over the device and do a read out and nothing was ever found. Then his follow ups were every 3 months, and still nothing. Then every 6 months, and still nothing. And the local cardiologist that followed his treatment, didn’t believe in God. I know this because every time I would talk about the Lord or my faith, he would say things to disregard my faith and he was the very same doctor who shunned me when my son returned that second time to the hospital. However, look at how God worked this out. After about a year of doctor appointments, follow ups, his own wife was pregnant and they were expecting their first child. He opened up and shared with me that they had lost a baby before, so he literally, asked me in a quiet but very serious voice, “I know you believe in God and a higher power, so I just wanted to ask you if you could pray to your God for my wife and unborn child?” And I told him of course. So later that evening, before I went to sleep, I made mention of him, his wife and unborn child in my prayers. Months passed and he never spoke of it again, until the month that she delivered their baby. He came into the room at my son’s follow up and he said, “I just want to thank you for your prayers, I need to let you know that I believe that because of your God my wife was able to carry and deliver our child.” I was overwhelmed. I was speechless. This was a man who was so adamant on his old beliefs. And now his faith had changed through the witness of my son’s traumatic experience and him being able to see that in spite of how many odds were against my child’s survival, I stood firm on my faith. In hindsight, I was able to see there was a greater purpose for my pain. A much greater purpose, ridiculous sacrifice for the glory of God.
Today, I am happy to share with you that my son is a very happy, healthy teenage boy. He is “developmentally delayed” as they call it. I just call him my son, I call him Erik or his nickname (Zamboon). He might talk louder than the average person but he makes sure he is heard. Yes we often get the “stares”. He is often overlooked by strangers when he just wants to receive a simple “hello” in return. Strangers might act like he has a disease and they don’t want him to touch them but that’s okay, it’s their loss. Most people who do know him, fall in love with him. What others may see as “abnormal” we see as his normal. His device was permanently removed on February 26, 2008 as the doctors no longer seen a need for it. We were told at his follow up echocardiogram that “his heart was no longer a sick heart, but that you would never even be able to tell it was ever sick. He is a miracle child.”
He is the MOST loving, kind-hearted, compassionate individual you could ever meet. After years of extensive physical therapy, occupational therapy, speech therapy, he transitioned from not being able to sit by himself, to walking. He now walks, talks, and loves to dance. He is a praiser and a worshipper at heart. He knows who God is and he has no shame in letting others know that he loves the Lord who saved him, literally.
So I shared all this, to hopefully encourage another family, person, or mom. Someone who might be in a hopeless situation. Someone who might have their back up against the wall with things seeming like there is no where to turn. God always has a way out. But there are times, you have to just stand still and see the salvation of the Lord work on your behalf. And this is what I did. I shared this to enlighten those who are “untouched” by people who have special health care challenges. My hope is to bring more understanding of one’s journey and more awareness of what people like my own son have had to endure/survive/overcome, so those who lack compassion or lack understanding, just might possibly become more kind, more considerate, more patient with others. Bottom line is this, we all have a story. We all have been through something in life. We ALL ARE DIFFERENT! My son’s different just like the next person. He doesn’t see anything that sets himself apart from the next person. He is just Erik. You see, it’s not him that needs to change the way he sees this world, its the world that needs to change the ways they see.
Thank you for being here. Thank you for reading. Thank you for your support. Thank you for your candid comments. Be encouraged. Be blessed. Be inspired. Be their voice when they can’t speak for themselves.