To those who follow my stories about my children, this is my youngest son Erik. He was born normal and healthy and on time. But some life-altering events with his heart took place when he was just an infant, so it lead to his development being delayed.
He is 17 yrs old and a senior this year in high school. Others see him as abnormal. I just see him as Erik. His normal is his normal. He is just learning to pedal a bike. And still learning to write.
He is my son and although I didn’t like the early part of his journey, I accept him just as he is, for who he has become and for what he is able to do. I love him. He’s always up for the challenge. 💙😊
Check out this short clip from this afternoons bike club.
All the stories where others have chosen to pour their heart out,
As if it’s an open journal entry for everyone to read some of their most intimate thoughts.
I read mostly ones that are tagged within the mental health or special needs titles, only because I take to heart what these individuals are battling. I read because I want to know what areas to focus my nightly prayers upon and what requests I need to make known to my Lord and Savior. I pray for others whom I do not even know on a personal level, because oftentimes, their stories are very relatable from standing in my position as a loving mom and advocate.
I hope for others to have a better moment as the time continues to pass. I want the best outcome for others who feel trapped, alone, isolated, and lifeless. I want others to know they are valued so much more than their life might feel worth in those darkest moments.
In a perfect world, there would be a cure for mental health challenges, to completely heal from these brain disorders that cause a variety of negative life-impacting symptoms that spiral out of control.
In a perfect world, mental healthcare would be a higher priority instead of dismissing it like its the scum of the earth.
In a perfect world, we would have perfect people that are free from sickness, disease, ailments, cancers, illnesses.
In a perfect world, my son wouldn’t have died twice suffering from cardiac arrhytmia, ventricular tachycardia, suffer from seizures or developmental disabilities.
In a perfect world, my other son wouldn’t have suffered from a mental health disorder and become diagnosed with bipolar or have to battle everyday with the symptoms.
In a perfect world, my daughter wouldn’t have suffered from a mental health break, and seizures or have a seizure disorder.
In a perfect world, I wouldn’t have been adopted only to be verbally abused my entire childhood and made to feel worthless and depressed. Only to find my voice many years later.
However, this world is imperfect with imperfect people. As a matter of fact we are all DIFFERENT, no two 100% alike. We ALL have flaws, we all have something good within ourselves, we all have that 1 thing we would like to change.
In reality, I would like God to change things even within my own family. I would love if I could wake up tomorrow and have some chapters just been a dream and not my reality. But instead I realize these traumatic events that have caused so much pain, heartache and long-suffering, are the very same events that have taught me to trust, taught me to endure, shown me what it is to lean and depend on God, proved to myself just how strong I didn’t know I was, and now in hindsight I can look back and draw from strength of those trying times and testimonies to give me inspiration to appreciate the moments when things are good.
And most of all, it’s helped me to see others differently, but in a light hearted way. It’s pushed away the unimportant things in my life and brought me closer to the very things that are significant. It’s helped me to lay aside every weight, which were people who I didn’t need to keep around. It’s pushed me into my purpose of advocacy.
Lastly, it’s brought me here to build this website to be a voice for others who don’t feel their heard, or maybe they prefer to share through me, or they simply feel often misunderstood. My journey has brought me here to pray for others who walked a similar path, battled a similar war, struggle with similar issues, and hope for change.
I used to say this all the time, at previous church on Friday night’s, “I thank and praise God for ALL the little things, because I know bigger and better things are yet to come”. And I’ve found this to be true.
So I’ll end it here. Whether a believer of the Holy Bible or not, or believe or don’t believe in Jesus as the son of the living God, just at least know this, I am here and I have prayed for strategically for others because afterall the ONE AND ONLY reason why I am still here TODAY, is because somebody somewhere prayed for me, and God heard and kept me when I couldn’t keep myself.
Today I just wanted to share some short video clips of my youngest son, Erik. 17 years ago, while he was fighting for his life in the PICU (pediatric intensive care unit) doctors told us that he would likely not survive and I’m so very glad I wasn’t convinced by their prognosis. I leaned on my faith in God and stood on my beliefs that my son shall not die, but live! He is my heart, he makes me smile everyday, and he has taught me so much about life, just by observing his character and how he treats others with kindness.
Here is a clip of him while playing basketball with his skills team at Regionals for special Olympics basketball, making his first basket! His reaction is priceless. Volume up.
This was another memorable moment from earlier this school year at his high school homecoming. He is a senior this year. The student body nominated him and his classmate as “Lord and Lady of the day” for Homecoming Royalty. Again his reaction was so appropriate as he does his celebration dance. Be sure to turn up your volume.
I seldom wonder, what if I had allowed all those physicians and specialists, test results to convince me to pull the plug on my child, or persuade me from my faith?
I have been blessed to experience of God’s mercy. I look back over my life and I can truly see how God’s love has always been there. Erik might have challenges while compared to others, but to us and for himself, he doesn’t see himself the ways that others may view him. He is just Erik! He Will shake your hand, dap you up, hug you or ask how your day is? He is my living miracle. I would NOT change anything about his journey. Because had it not been for the great suffering and tribulation, we wouldn’t have been able to witness God’s glory.
And this is just one of many, many testimonials and experiences that helps me remain in Christ. I have truly learned what it is to be patient in tribulation, remain steadfast and immovable, pray without ceasing, standing on God’s word when my back was against the wall with nothing but death and darkness around me. So when others ask why do I believe in a God that I cannot see? It’s because faith is the substance of things hoped for, the evidence of things not seen. I might not be able to see my Savior but I know he’s there because of the evidence. God made me strong when I was weak. When everyone else walked away and left me, God never left or forsaken me. And as some would say, “Can’t nobody do me like Jesus!”
If I can be honest. If I’m allowed to express my truths. If I can tell others how it feels to experience those chapters of my life when my youngest son died twice in my arms on two separate occasions, when he was discovered to have significant developmental delays. When my oldest son experienced anxiety, depression, and was diagnosed with Bipolar disorder. When my youngest daughter experienced severe depression that it lead her into a mental break and also had a seizure, and diagnosed with Juvenile Myoclonic Epilepsy. When our world was flipped upside down and the people who we thought would be there, weren’t and the people we didn’t expect to show support, did. When the trust became broken, when the pain became very unbearable, when we were thrown into the fiery furnace, when I had to quit my job once again, when I had no support from the ones I expected, when life became at a halt, when people said hurtful things, when people gave advice that wasn’t relevant to me, when people thought we didn’t need help but we did, when our faith in God was tested, tried and ridiculed, when people who I thought were my friends, suddenly became “busy”, when there was no one else but God, when prayer didn’t seem to work, when my light became dimmed, when I couldn’t see my way through, when doubt began to set in, when I got tired of being misunderstood, when I got weary, when I felt at my weakest, when our lives changed, when the wind blew everything our way. WHEN my older daughter and mom treated the rest of us like we had “evil spirits” or what we were dealing with was contagious and could spread to them!
First and foremost to Jesus Christ who is my Lord and Savior, I thank Him for being my strength when I’m weak. For being my one and only consistency. For being my only hope in the midst of bad news. For being my peace when things became chaotic. For keeping me in my right mind, while everything and others were against me. For allowing me to see clearly just WHO to dismiss from my life and WHO to keep around. To realize that blood isn’t what bonds me to another, but it’s the sacrifices of love from others that withstand any genetic makeup.
Secondly, I have to honor my husband, who is my ride or die kind of guy. He is my biggest supporter, best friend, lover, companion, secret keeper, and cheerleader.
And to my children who have stuck around. The ones who supported each other, who overcame, who loved on one another, who fought together, who learned forbearance, kindness, patience, compassion, and who have always respected and honored my role as their mom, caregiver, voice of reason, annoying advice, correction, and views on life. I love you.
What I want others to know, is that my journey has not been “the dream” that I used to envision as a little girl who wanted a family. But it has been different and full of life lessons about love, forbearance, patience, anger, frustrations, family, compassion, empathy, sympathy, truth, honesty, fairness, division, strife, and how to move forward.
The trauma that my children have suffered has me on edge most days. What they may not comprehend is this. Just as their lives have been impacted, changed, not the same, and challenged, so has my own, as their mom, as myself, as a human. I too, have to learn to move forward, to survive in the aftermath of the traumatic events of our past.
For example, every time I’m away from home, running errands, on a date with my hubby and I hear a siren or I see first responders with flashing lights speed past me, my mind goes to thinking I need to hurry up and get back home to my kids. I begin to wonder if their okay. My moment of free time and enjoyment gets overshadowed by thoughts from my past. So now while I’m suppose to be enjoying my free time, my thoughts and conversation becomes consumed with the topics that exhaust me at other times. There is so much more little things that I am hypersensitive about now, like the tv shows I watch I feel as though I’m on eggshells if one of them comes to sit down. Especially if it’s a scene about depression or other familiar topics that they have experienced, so then I change the channel.
Things I want to express to people who hurt me. You became just like those who stigmatize and demonize people who live with a mental illness. You said very hurtful words that have caused damage beyond repair. You have been allowed to inflict pain in my life one too many times. You have now been dismissed. You have now become a chapter in my book. You are a thing of my past and will likely not be involved in my future. As for reconciling, that ship has sailed.
What I want you to know is: My love and my life cannot be brought. I don’t want your money. I don’t want you around me, when you truly feel a certain kind of way about me and my children. I don’t like being used, manipulated, persuaded by guilt. I value myself more than you see me as worth. I will no longer tolerate willfull ignorance. I am better without you. I can accept your apology but this doesn’t mean I want you around. I have forgave you not because you deserve it, but to forgive myself for being fooled everytime. I needed your love and support in the most trying times and you chose not to be around, stating you were busy. I will no longer make you a priority. I’m making myself a priority. I want no dealings with you. Family or not! I’m moving toward becoming a better me without you. I have no ill feelings and I wish you the best in life.
The truths, I have found more love, support, guidance, direction, instruction, correction, hope, inspiration, motivation from people on the outside than I have from some of my own family!
One positive thing I can grab from the bad moments in my life is that, while I was over here suffering, forbearing, battling, warring, praying, fasting, believing for better days to come, God was strengthening me, he was revealing to me the heavy weights, the people who caused me the most pain, the most stress, the ones who I had ALWAYS been there for, would drop what I was doing and come running to their aid, he showed me that when it was my time of need, these same people were no where to be found. He showed me who was only here by their own convenience, their own motive, their own selfish gain, and only when things were good.
I’m over you and I deserve better for my own self. I will no longer put an emphasis on the people who don’t, didn’t, or won’t support me. Instead my focus is on the people who did, do and will support me in both trying times and good moments. Because for my own self care I don’t need to keep being a lifeline for others when I could hardly breathe myself. There came a time when I was broken and in need of fixing. I was once weak but God sustained me and he strengthened me. I was running on empty with nothing more to give.
I needed someone to pour back into me. I needed a shoulder to lean on. I needed someone to pick me up. I needed you to see that I’m prone to becoming weak too. I’m not always strong. Don’t get me wrong, don’t get it twisted, I realize and I can understand every body deals with their own turmoil, struggles, hardships but it’s when I knew you were just choosing to not come around, choosing not to be supportive, choosing not to answer my call for help, choosing to avoid or ignore me, and to these same people who I had ALWAYS came running to rescue, sometimes in the most inconvenient times for myself, or interrupting my sleep hours, and yet I got nothing but dead air in return. So I get it for those who had their own obligations, but for my own family to treat me/us like this!? You get the picture. Time for me to let it go.
My picture of self-care. What do you do in any life threatening emergency situation? If a plane is going down, you put your own oxygen mask on first and then help others.
Before you enter a burning building you put on your own proper fireproof gear so you can effectively attempt to rescue others.
Self care is important. I hurted a little while but I’ve moved on. I’ve found that I’m better without the toxicity that some people brought with them. I’m working toward becoming a better me. I learned through all this, that I cannot expect others to understand what they either can’t understand or refuse to learn to accept. I won’t continue to waste my good energy on people who refuse to change. I won’t drain myself to empty while I continue to keep them filled up. I can’t afford to lose myself in someone else’s story anymore. Instead I’m sharing, writing, and telling my own!
So basically I said all that to say this, For all the times you didn’t call me back, didn’t respond to texts, pulled a no show, didn’t come through, said you were busy, and yet I gave you understanding. Just know when I don’t call back, I don’t respond, and I no longer come running to your aid, and I’m NOT busy, you’ll understand too! You’ll figure it out without me.(wink) 😉
Thanks again for listening and for allowing me to be candid. Thank you for respecting my journey. I hope to inspire the readers to make themselves a priority for once, and to do whatever is necessary for you own self care. I know I speak for others as I speak for myself. Please take care of YOU!
FYI, just because an individual is NonVerbal. It does NOT mean they are deaf & you need to raise your voice, nor does it mean they are unable to comprehend given instructions.
There was once a time in my own son’s life that he did not speak. His development was at a different pace than that of his peers and other children his age. Heck, we didn’t even know if he would ever be able to walk or talk. But we had hope that God would answer our prayers.
This was him at his second Christmas, just learning to sit up. Boxing Producer, Don King, called us that morning to wish us a Merry Christmas, because he had learned about my son’s hairdo. That was a memorable moment in time.
It was around this time that his growth and development began to show delays in his physical capabilities along with his lack of speech. So instead we began to learn sign language by watching VHS tapes that was provided by his in-home occupational therapist.
I made sure I provided him with the best possible opportunities to gain strength through his upper extremities with hopes that he would one day walk. I had him in therapy for speech, OT and PT. He began school at the age of 3 in a wheelchair. That was a scary time for me. I cried that first day of sending him to school, following the bus all the way there. He was unable to verbalize to me or others. Not able to advocate for his own needs and still in diapers. Just some simple signs, like “more”, “eat”, “thank you”, and “done”. If he were to have a bad day, how would he be able to tell me? If someone were to mistreat him how would I find out? All these terrifying thoughts ran through my head. It took time for me to stop popping up at the classroom and calling nearly everyday. He had a nurse ride the bus due to his medical history of heart arrhythmia. He also had an IEP for his special needs and accomodations for learning. He wore a helmet to protect his head because he had began having seizures, but they eventually subsided with lots of prayer.
Those were his younger days of elementary school. He got keep the same bus driver all the way through his junior year of high school. Amazingly, she became known to him like family.
I believe he was around the age of 5 when he finally began to walk independently but still with someone nearby. He transitioned from sign language and pointing, to expressing a few sounds, and with much therapy eventually he began verbalizing with words. His speech was not clear or concise at that time, but to us, we knew what he was saying (most of the time). He had come a mighty, mighty long way from where his life began and he would continue to reach milestones as time went on.
His name is Erik. And he’s my son whom I love dearly. He loves Jesus and he acknowledges that is his Savior, literally and spiritually.
My son is different just like anyone else. Unique in his own way, and enjoys his life to the fullest. He isn’t ashamed to be who he is. And he does NOT see himself the ways others do, as having “something wrong”.
He is 17 and he still enjoys watching PBS kids, Disney pixar films, and the wiggles, Barney and child rated shows. He is all about daily routines, and enjoys eating the same foods. He is a creature of repetitive habits and he loves socializing with others.
It’s highly likely he will still be watching Monsters Inc, Toy Story, Finding Nemo, and other movies even into his adulthood. He likes to rock back and forth while sitting. And he absolutely loves to praise and worship the Lord.
He is in his senior year now, and was nominated as “Lord of the day” for his Homecoming Royalty. Although he is viewed and often labeled as having “special needs” he is very popular and well-known in our community. Let’s just say he is very confident and makes his presence known wherever we go.
We do our best to keep him active and he enjoys bowling, footgolf, dancing. He also participates in basketball and cooking classes. He has won bronze, gold medals for his regionals competition for Special Olympics in bowling and basketball.
Erik and Regan at Regionals.
Thank you for taking the ride along my parenting journey once again. And for allowing me to be his voice. My life wouldn’t be the same if he wasn’t who he is today. And I could care less about the naysayers.
Because I can’t “change the people” around me so I just “change the people around me.” -Erika
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.