I know most people who are similar to my own family and its dynamics probably find it difficult to do any outside activities, depending upon our loved ones challenges. But down through the years of raising my family and my youngest child, I have had both failures and successes.
I have experienced those horrible moments of being laughed at, pointed at, talked about with the whispers as we pass by, oftentimes made to feel unwanted and misunderstood by his behaviors as a younger child living with developmental delays. It has always been my stance and his siblings to protect and watch over him. To use our voices to speak on his behalf or to stop the stigma that others may have thrown our way.
So with our life experiences and God as our center of hope, faith and love for others, it was impressed in our spirit to begin a ministry to cater to other families like us.
In addition to talking with other families we have met, mostly all feeling the same way as us, we began to see a great need within our own community for a special needs ministry. A service where these families can come and worship God together in the same sanctuary. Our loved ones can be involved with the service in their own way of expression. Whether it be them sitting, standing, running, jumping, rocking in their seat, walking the floor, clapping, shouting with a joyful noise, whatever their ability to praise God. There are no stares, there is no pressure to feel unwelcome for being “different”. Just a place where all families can come together in one place, God’s House and feel the love, and be able to meet others who can truly relate to our daily living.
The service includes everyone and offers a time for those who may want to share their story about their journey. Individuals are included for a time of prayer, scripture reading. Followed by music, a gospel message and invitation at the altar.
I would like to ask every person that is supportive of this ministry and has personal social media accounts to share this news within their community and with their followers. We hope to inspire other churches to grab ahold of this great need for those who have been overlooked and forgotten by people, but NOT by God.
We are NOT FORGOTTEN MINISTRIES. Come join us every 3rd Sunday afternoon at 1pm.
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.
Today, marked the 1 year anniversary of the special needs church ministry that my husband began in May of 2018. I follow his lead as he is operating in his purpose. The name of the ministry is called Not Forgotten Ministries. Such a fitting name for the ministry, because we want other families who have special needs loved ones or individuals living with disabilities or other mental or physical healthcare challenges to know they are not forgotten by God.
We had 3 new visitors along with their family or caregiver today. It truly did my heart some good today to see the people participate in prayer, scripture reading and singing along.
Our service isn’t your typical church service either. It is geared specifically for special needs families. The entire family. Not to separate the individual with special needs from their family but rather include the whole family in one service. We always offer to involve everyone with prayer, scripture reading, and a brief time for sharing their story. Followed by the word of God, more prayer and benediction, but at times we go off script to accommodate the needs of God’s people.
It’s always lovely to hear others share their stories about the journey with their special loved one and all they have overcome or are still handling today. Especially the other mom who shared today, about how happy she was at the service, mentioning that she had been to a different church that was supposed to be for special needs families, but they separated her from her daughter, while she was able to attend service with the congregation, they took her daughter into a private room with others to watch the service on a monitor and she said she didn’t like how that made her feel. So it was really nice to hear that she felt welcomed and comfortable.
As a mom, caregiver myself, I know first-hand the daily battles, struggles, victories, achievements and strength it takes to do it every single day. It’s not always peaches and cream and its not always smooth sailing, but I will admit, it is ALWAYS worth my time, my love, my support and my efforts to help my children and others within our community.
I am sharing these short video clips to show the glory of Gods special people. I was told by one caregiver that today was her very first time hearing her client pray and that it touched her heart. These families come from all kinds of different walks of life, Autism, ODDS, Epilepsy, Dementia, Developmental delays, mental health challenges but we all come together here in one place, unified as one body in Christ. We know our loved ones diagnosis but it’s like white noise to us. We only speak, write about, refer to it because it’s how others can identify with us at times.
I truly hope to possibly inspire others by sharing this. And maybe if you happen to be a minister or pastor of a church, you too will become inspired to begin a similar ministry in your town. There are many families just like mine, just like these, that would love an opportunity to come together at church and feel welcomed, accepted and understood. Again, this is not your typical quiet service. We cater to the needs of the people and their families as we realize the sensory issues and the other need to express themselves openly. We are all Gods people. We are all loved. We are all unique and wonderfully made. Created by God in his image and his likeness.
So to that other parent, caregiver or individual who’s reading this and living with health care challenges, don’t ever let someone shame you or make you feel less than worthy, just because your blessed to be who you are, or the person your caring for. Don’t allow others to stigmatize you. Hold your head high, walk in confidence and be proud of the life you have! Share your story to inspire others. Tell your story to educate others.
I hope I was able to encourage someone this evening!
This is my son, His name is Erik. He was just a baby here, he is now nearly 17 and able!
Yes he has developmental delays but he is living his life just as anyone else would. Able and capable to try new things everyday. He has overcome many obstacles.
For those other parents who might feel hopeless. Don’t give up on hope. It can get better with time, patience, prayer, hope, and support. And to think 17 years ago, he died twice, was on life support, suffered seizures, and doctors didnt give him much chance of survival! Well we proved them wrong! And he isn’t a vegetable either, like they said he would be. We were told he would probably never talk, walk, or be able to eat normally. To God be the glory!
Keep hope, stand on your faith, and stay encouraged, even when the clouds are dark and the news is bad. The outcome is better than where it all starts.
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.
Mental illness does not discriminate.
It does not care your gender, race, culture, religion, age, skin or hair color, shoe size, weight, height. So it can happen at any age to any person without warning.
Take care of your mental health as best you can. Become better informed about mental health disorders / illnesses. So that if it happens to touch down and impact you or your loved one that you will be better prepared on ways to get support and adequate treatment.
If your like me, I was once uninformed about the real facts regarding mental illness. I only fed my mind from what movies, media and false representations portrayed as individuals who have a mental illness/disorder. All of which, these are bad and create stigma and fear. The stigma is what causes fear in both the outsider who is led to believe false facts and it keeps the individual with the mental illness isolated and living in silence about what their dealing with.
I’m not a doctor. I’m not a licensed therapist. I’m not a mental health professional. But what I am, is a mother who has lived through some very trying moments with my children’s lives who have been changed, marked, and impacted by mental illness/disorders and also developmental challenges. I have my own experiences, views, opinions and voice, which I have chose to break my own silence and be the voice for others who will not advocate for themselves or are unable to speak. I have experiences with two very different worlds.
One being the “special needs & visible disabilities” world, where there seems to be somewhat more of an acceptable disability and their is more compassion and empathy. There is stigma over here too. There are even segregated categories and isolated community events. Other parents know what I’m talking about. You have those who are considered “high functioning” and those who are “developmentally delayed” (like my own son). Then you have “nonverbal” and various other “labels”. Labels by the way, don’t bother me. They’ve become white noise to my life And there may even be times I use them as a word to grab other people’s attention to better comprehend my articles. What does bother me is stigma, negativity, and false representations created by people who don’t know the truth or they speak about what they heard or voice upon things that aren’t true to their own life. Sadly there are times I have come across, even within this community we don’t fit in because maybe my kid is higher functioning. Or maybe my kid is verbal and others aren’t. Or maybe one is wheelchair bound and nonverbal, while someone else has the full use of their legs and ability to verbalize communication. So sometimes that creates separation. Honestly sometimes I feel like my son, isn’t “disabled” enough to be accepted in certain atmospheres. Its like others see him as not fitting into the “regular programs” because he’s delayed. I just see him as who he is. He doesn’t see himself as any less capable of someone else or any higher than the next. He is just super friendly, kind and socialable. And he just wants to be acknowledged by a simple “hello”.
The other being the “mental illness/disorders & invisible disabilities” world, where there seems to be more negative judgment, stigma and less acceptance, with very little to no compassion or empathy. Since becoming more involved within the advocacy for this world I’m in. It has been quite eye opening and I have become better informed on the side of speaking out and what needs to be said. Mental health laws need to change for the benefit of both parties. Mental health education should be required in schools and educators should be required to know this stuff accurately. There should be way more funding toward finding a cure for Mental illnesses. And there should be more funding invested into lab testing so people can be accurately diagnosed for better and more effective treatment. Oftentimes people go years being treated for the wrong diagnosis and that is why sometimes it will appear that treatment does not work. I just want both worlds to know that I am here and that I still have a whole lot more to learn but for now I’m using my own experiences to voice my views.
I’ve become their voice. That voice who isnt afraid anymore. That voice who speaks against stigma. That voice who will advocate for my children’s fair treatment and spread awareness to those who remain “untouched”.
You see my worlds are somewhat small and its by my own choice. Because I do what I can to protect my children from emotional harm and cruelty as well as keeping myself from becoming angrier with ignorance or wilfully ignorant people.
God gave me my voice to speak, so I’m using it for a greater purpose than to just talk nonsense.
Thank you for your support and following my journey.
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.