Parenting in my world is similar to that of some, but also very different from most. Raising multiple children with very different special health care challenges is a challenge within itself.
My world is very small and select. Meaning that I only feel comfortable and free when I’m within certain environments, with select people.
I think I speak for most other special needs parents, when I say, we are often misunderstood, sleep-deprived, full of compassion, overprotective, running on overdrive, and often found advocating for our children.
My life as a mom in my world, has consisted of many hospital stays, doctors appointments, sleepless nights, medication management, IEP & 504 meetings, therapy sessions for PT, OT, Speech, and counseling. None of these are what I envisioned my motherhood would be, however, it’s made my blinded eyes opened. It’s taken me down a path filled with unique experiences that I would not redo differently. It’s resulted in some of the most amazing stories of victory. It’s produced some of the most incredibly compassionate young people. And it’s given me a voice and purpose to inspire others. Last and most importantly, it has drawn me much closer to God than ever before.
I have a son with developmental delays who was born normal and healthy. His everyday life consists of the same routine. All the way from the food choices, to his choice of activities and tv shows.
I also have a son with bipolar disorder who graduated as an honor student and is currently attending a 4-year college. And I have a daughter who suffered from some mental health issues, and has juvenile myoclonic epilepsy but she is the most gifted, highly talented young artist and attended an art school. None of them fit the “stigmas” nor do they accept the “labels” that others attempt to put on them. And none of them have allowed their diagnoses or battles to stop them from moving forward in life. They each have very different journeys and yet they each share the same genetic makeup. Isn’t that something?!
What I would like others on the outside to know, is this. My children are just as human as the next person. They have a heart, brain, eyes, nose, limbs, and capabilities to share with the world just like anyone else. They also have flaws, shortcomings, emotions, behaviors and are still learning as they grow. My youngest might talk a little different, a little louder, walk with a limp, laugh when no one else is, rock back and forth while sitting, but he is who he is. And they are who they are.
In my small world of comfort, I have gotten to meet some of the most fun-loving, energetic, compassionate people. And some of them are nonverbal, deaf, blind, wheelchair bound, with obvious “visible disabilities”. And some of them have been through mental health battles which are considered “invisible disabilities”. ALL of which are NOT a contagious disease, dumb, stupid, unintelligible, without feelings, crazy or any of the other stigmas or labels that ignorant people choose to use.
These people’s lives have been touched, impacted, marked, changed, inflicted upon by a health care challenge that is beyond their own control. They are living very different lives just like you and me. They are all battling something every single day. Each one with a unique story to tell. Each with a very different journey and outcome. Each one deserves just as much respect, honor, love and compassion as anyone else who doesn’t have to live with any health challenges.
Some of us should take a moment and get to know the person instead of allowing stigmas and false representations to taint our insight, causing us to draw away from becoming better acquainted and informed of real life experiences.
End the stigmas. Stand with me against the negativity and harmful words and misrepresentation for mental health disorders and individuals with special health care challenges.
My children each have different lives and different diagnoses. And honestly if our lives weren’t personally impacted by mental illness and other developmental challenges we probably would be uneducated and have no knowledge that these stigmas or labels exist. Unfortunately, they do exist and it’s tough enough to watch my children and others who have battled through a “mental health war” and survived through some of the most traumatizing moments in their lives, being stigmatized and labeled by some of the most misinformed people. Sadly, with my own experience, even some of the social workers and mental health counselors or psychologists fell into this category of stigmatizing their patients. How do I know? Because I witnessed it happen to my own family. When does it end? Where does it end? Where do we draw the line? How do we enforce change?
I’m so tired of the media and social media outlets posting and airing crap stories or voicing opinions, just to get a reaction, to get a click of a thumbs up or a like or a follower. And yet they have never been impacted or touched by mental illness but they have something to say! It’s frustrating to watch the people who aren’t properly educated or lived through the trauma with a person who has battled through a mental health war, give all these false perceptions. Every time there is a horror story or something dark, or a heinous crime the media ties the individual to being “mentally ill” so now everyone who isn’t educated and properly informed, believes that every individual that truly has a mental illness is now this “evil” or “crazy” person. Lawyers convince jury members and judges of the same to get their clients a lighter sentence. In my own belief, it is the evil practices and dark meditations of a persons thoughts that cause them to commit horrific crimes and kill people. Evil people are who do evil things. I will say I also believe it’s possible that an evil person could have a mental illness in some situations, but what point I’m trying to make is that I don’t believe it’s the mental illness that caused a person to do evil. I just don’t believe that. Having been through some very low points with my children and watching them suffer and battle through their mental health disorders, specifically episodes of psychosis, depression, anxiety, hallucinations and being in an altered mental state, not one time had they ever did anything evil. Never once had they ever threatened to harm another person or themselves. They may have expressed frustrations and anger because they weren’t able to be rational in those moments but they weren’t “crazy” or “evil”. Their brains were malfunctioning, causing them to become confused and disoriented. In those moments, they needed someone to be patient with them, not take things personal and realize that their brain was sick and that what was happening to them, was through no fault of their own.
I’m not going to make it sound like it is an easy thing to be around or that it is the same for every family that goes through such a traumatic time. But I am just sharing my own life experience with raising my children. And what I did to help them overcome as well as myself. Because what others may not realize is that it’s not just the individual who has the “mental break” who’s life is impacted but their loved ones suffer right along with them. At least in my family that was the case. Every one handles situations different and to each their own. So here are the questions for people when their in crisis. What do you do when your child suddenly isn’t the child you’ve known them to be their whole life? What do you say to them when they don’t believe anything is wrong? What do you when they refuse to take their medications? What do you do when they are extremely paranoid? How do you survive when your home becomes a “war zone” and your walking on eggshells and trying to avoid triggering them? What do you do when your child is angry and doesn’t understand why it’s happening again and they lose hope? How do you get them to feel comfortable leaving the house? How do you get them to trust again? Who do you call for help when things can no longer be managed at home? What should you say when your every word you speak is under scrutiny? These are just some of the questions that came up in our situations, each time. Unfortunately, there is no written rule, or guide to guaranteed success of what is effective during these times. There is no right answer to these questions. However, I will share with you, what worked for us at times, yes I said “at times” because it didn’t always work.
First and foremost, I’m not a doctor and I’m certainly not a professional therapist, I’m just a mother who’s been through life with my own children who have suffered mental declines and some low points of depression and some high ups of mania and euphoria. Now with that being said, here are some ideas to consider of what my strategies and plans my husband and I did.
Don’t take anything they say, personal. This can be difficult not to, but you have to understand that it’s their illness taking precedence. They’ll apologize later, at least that’s what our children did.
Practice Active listening. Active listening is letting them speak and patiently waiting your turn to reiterate what they just stated to you.
If you believe in Jesus, than pray and trust in Him. I will be honest, there are some situations that you cannot just pray away though. Or so it seemed in my case. You just had to pray for the strength to make it through.
Keep things real for them. Meaning that you “feed the beast” as I once heard a psychiatrist say. If they are talking about something that is delusional than you try to accept it as their reality instead of arguing with them or trying to persuade them otherwise. Remember they are in an altered mental state so they aren’t able to be rational at this time. For example: If they say they believe Aliens are invading their room at night, then you repeat, in the form of a question, “Aliens are invading your room at night?” and allow them to answer. And you can try and redirect by changing the subject to other topics but it doesn’t always work.
Don’t feel guilty for forcing them to get treatment, the sooner the better. This can be extremely challenging especially if they don’t believe their in need of help. And if you’re a loving mom like me, it tears at your heart strings to feel as though you are betraying your child and going against their wishes. And it can take a lot of persuasion and you may need to actually call 911 for help. BUT if you do, I strongly suggest that you fully explain in details to the operator of your situation. For us, our children weren’t violent or a threat to others so we explained they were in need of mental health treatment, there are no weapons, and we just needed help to escort them to a hospital. Upon arrival of the officers, I asked them if they were trained to handle individuals with mental illness and they said no, so I expressed my needs before allowing them to enter my home. 911 will almost always dispatch police. Some states and counties have mental health professionals available, on-duty to come along, but in most cases not so.
Be willing to manage their medications because most adolescent children will forget or won’t take it. Get a daily pill organizer or if your pharmacy offers pillow packs, do it. Don’t refill the empty slots until the whole entire week has been given. Otherwise you may double dose. Use a calendar as a back up to check off each day only after you’ve given it to them. If you just try and give it out of the bottle each day, it can be hard to remember if you’ve already done it, since each day can begin to get so routine, you’ll question, “did I already give them their medications?” It happens. That’s why I’m sharing this piece of advice here.
If necessary while they are stable again, have them sign a medical release of information giving you permission to their medical records and ability to talk with the counselor and doctors. Due to mental health privacy laws, minors are able to make their own decisions and age varies depending on the state you live in, for some it as young as 12. They are protected by HIPPA and you as the parent don’t have rights to their mental health records in most situations, unless you get someone to break the law. In our state the age is 13 for Washington.
Attend the appointments with them so if they are unwilling to share important details, you are able to give this information to their treating physician. Often times, they will not want to talk about what just occurred or they will leave out pertinent information because they just want to put it behind them and move on. Be patient with the process and make sure the medication is effective, otherwise inquire about changing it. Seek the best medicine with the lowest side effects. Any good psychiatrist is going to have this as their own concern. Some that aren’t so good will subscribe anything. Just speaking from experience. Don’t feel as though you have to stick with one you don’t like. And if you think the diagnosis is in question, seek a second opinion. Because symptoms can look very similar of several different diagnoses. You know your child better than any person who gets to visit with them for up to 30 mins.
Be prepared to become your child’s advocate. If their a student in school, inquire with the counselor about getting either a 504 plan with written accommodations or an IEP for specific services. Just know that IEP’s don’t follow if they plan to attend college. And if they have to miss a ton of school, inquire about a home health tutor provided by the district. You might also be able to file for disability benefits for them depending on their diagnosis.
If you have medical expenses that are your patient responsibility, inquire with the treating hospital/clinic about financial assistance or charity care programs. It could help reduce your out of pocket costs. This is especially helpful if your not able to afford it because you’ve had to miss work and go on FMLA unpaid leave to supervise their care. It’s usually worth completing the application.
Be ready to wear your counselor hat. They will need to feel loved, accepted, safe, and reassured after they recover and come back home. They may or may not want to talk about it. Leave it up to them. Mine like to reflect at times, so I just listen and try my best to normalize things for them. Be their biggest support system because the world is an ugly and often cruel place at times. When they come home it should be their safe place. Refrain from saying, “it won’t happen again” because it very well could happen again and then you will lose trust if and when it does. Stay honest but hopeful. Get back to enjoying life while things are good.
So that was a little bit of our experience in what worked for us and what helped our children with their roads to recovery. It is also important that you have someone YOU can go and talk to. Whether it be your own therapist or a trustworthy person. But for me, I am part of a support group through nami.org in my local county and I have a therapist when needed. I am also an advocate for mental health awareness and I assist a church ministry that is headed by my husband which is specifically catered to other families like our own. Families that consist of loved ones who have mental health challenges, or special health care challenges. It has helped me fulfill my own purpose.
Well that is all for this article. I hope that I was able to be of help to at least one person who reads this. And I hope that for anyone who is brand new to learning about mental illness, that maybe you’ll have an informative outlook going forward. I also want to encourage anyone who may be suffering at this moment, that this too shall pass. With time, it will get better. Everyone’s “time” is different. Everyone’s journey is unique. What works for some, doesn’t work for all. But when you do find what works for you, stick with it. And don’t ever let others silence you from sharing your story. Share it, because it will likely inspire others to break free. And lastly, PLEASE STOP STIGMATIZING AND LABELING people with mental illness as something they are not!
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.