Without a Crystal Ball

Our Journey through Chronic Illness

Five years ago I had found out I was pregnant, and I was scared but so excited for the future. I remember gazing at the first ultrasound picture of my baby. We called the baby “nugget” because in the photos it looked just like a peanut. Now 5 years later, I have a 4.5-year-old son, who is no longer a nugget, and our life isn’t anything like I envisioned it would be. There have been times along the way where I have had let go of what I had hoped for and what I had longed for as a parent. My child was born premature, sick, and all these years later has never gotten better. We now live in a world where I check feeding pumps for clogs, make sure stomas are not chafed or infected, ensure the gas in his stomach is relieved via a tube and syringe, give him medications multiple times a day,  and we have therapy to help his development and sensory issues.

Over this time it’s been hard to let him go and let him be a child. The simple cause of that is I’m scared. When he was 3 months old, I watched him fight for his life. I witnessed his organs fail and watched doctors mystified on how to treat him. Those memories haunt me to this day, and I can still see his little mouth sucking on the ventilator tube that kept him alive in my mind. There are days the memories are so fresh, that it is hard for me to allow anyone else to care for him. I worry terribly what could happen if he was left in the wrong hands. No one truly knows how to care for him other than my husband and me, and I fear what will happen the more I let him go.

Yet, he’s growing up, and he needs to be able to see the world, experience things without his mom and dad, and he needs to be free to live without fear of what could happen. My biggest challenge in this entire experience has been residing in the present. I am often stuck either thinking of the past, or I am sitting worrying about upcoming appointments, evaluations, or surgical procedures that are on the horizon. During these years, I have struggled to truly be present in his life, and not be consumed by the grief and the stress of caring for a medically fragile child. Somedays I fear that I will have wasted his entire childhood in fight or flight mode, and I will miss out on the incredible opportunity of watching him find his own way in the world.

I know his life will look different from mine.  I am prepared for the reality that he may never leave our home, and I have already thought ahead about the fact that he may never go to college, have a full-time job, get married or have children. Finding our way in this world has been really challenging because nothing seems suited for children that have disabilities and severe health issues. There is no blueprint I can follow to see what to expect for his life, and I have a hard time finding anyone that has been on this road before me. Our society isn’t built for people that aren’t able bodied and of an able mind. The reality that I will care for my son for the rest of my life is something that weighs heavy on my heart every day.

In the midst of all this uncertainty, I have a child that is curious about the world, eager to learn and has a zest for playing and laughing. He is eager is watch others, and loves to try what he has learned in therapy at home. There are mountains of obstacles before him every single day, and most days he doesn’t pay them any mind. He goes about his time as if there is no care in the world. Even though he will be panting and out of breath, he still wants to play and run. Somedays he is so unfazed by his differences that he pushes himself to try new things. I have no idea where that drive and spunk comes from, but I admire his tenacity, his effort, and his calm disposition despite the fact that I know many days he doesn’t feel well.

I struggle with letting go. Most parents struggle with letting go, but I struggle with letting him go and be cared for by others. I fear that I might trust the wrong person, and in the wrong hands, I am afraid his life will end. Each day I move further away from his time on life support, and I realize how far we have come. I stretch my arms a little bit further, and I allow him to be in the world without me for a few hours every week by going to preschool. Eventually, I will let him go and send him to school for longer periods, and I will hopefully watch in pride.

There has been no magic formula for me to let go. I have just had to do it a little bit every single day. Not long ago it occurred to me that parenting is really just a series of letting go whether your child is healthy or has medical issues. As our children grow, we are continually letting them go further and further into the world. Each day they are learning to depend on us less and finding their own voice, making their own choices, and they are finding their way through their life. I know that his dependence on me will always be different than that of other children. He will always need someone to help him with his illness, and as he grows, it’s nice to know others are willing to take on some of that responsiblity.  I may never be ok with letting him go, but I have to let him go so he can grow. I cannot sit paralyzed in my own fear because he deserves to experience a life that is beautiful and full of happiness. His life has to include people outside of his parents, and my hope is that by letting him go a bit more each day he will find a way to blossom and thrive in a world that isn’t exactly suited for him. Each day that I let him go, I find more and more peace inside of me. There is truth that there is peace in letting go. I am grateful I am starting to find that peace.

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I recently read an article on the Huffington post about parents of medically complex children face stress levels equivalent to combat veterans, and they live in day to day Post Traumatic Stress. As I read through the article, it was like a lightbulb had gone off in my head. The past 4.5 years have been like nothing I could honestly put into words. While I blog about our experience, the trauma and stress we endure could never be put into words. I think back to the early days, and I wonder how I got through it all. At times we lived minute to minute, and slowly it moved to an hour to an hour and then day to day. As our child has grown, our experience hasn’t changed regarding how much stress we face, but we have found better ways of coping with the stress. It took several years to find a path that made sense to me, and I had to try a lot of different methods before settling into a routine that works for my life.

I have come up with a list of things I do each and every day so that I can make it through another day of the unknown. My child has no prognosis, and that, in itself, is very hard to manage. There are pending surgeries, evaluations, changes in care, and new therapies on the horizon. Here is what I do each day to handle the stress:

Find time For your Spirit

My life is a crazy mess of stomach contents spilled on my legs, dirty diapers, filthy syringes, and empty medicine bottles. I spend so much time every day taking care of my son that I need to find a chance to recenter myself and get connected to my spirit. Now, I realize not everyone is spiritual, but this can take many forms. It could be quiet meditation just focusing on breathing, practicing yoga, which I do almost daily, or sitting quietly and just reflecting on your day. For those that believe in God, it could be quiet time spent reading their Bible, reading a devotional, or quietly sitting in prayer.

Exercise

I realize that it’s hard to find a chance to get away from the house. Some days we are stuck at home dealing with some emergencies, and I have no time to hit the gym. There are so many easy ways to incorporate exercise into your day. Youtube offers videos you can watch, there are downloadable streaming apps you can watch on your phone or laptop with short classes, or simply get outside and take a short walk. When I haven’t moved for the day, I find myself not only edgier, but I am often more depressed. Make a point just to get out and do something active for yourself every day. Children with chronic illnesses need caretakers that are strong and capable.

Eat Nutrient Rich Food

It is SO easy to stuff your mouth with junk when you have a child running to and from appointments. However, foods high in sugar and carbs and low in protein are going to make you crash. Every day I start my day with protein in some form. It could be eggs, a beef stick, a cheese stick or a protein bar. I ensure I have lean proteins throughout the day. When I eat nutrient rich foods like Kale, spinach, wild greens, cabbages, I find that I have more energy throughout the day. Each day for lunch I always try to eat a salad with a lean protein. Eating a salad enables me to keep going and not feel dragged down by a heavy meal. I do cut myself some slack at night and make a regular dinner for my family. Over the past few years, I have found this diet works for me and keeps me going and high with energy. I also try to eat something every 2-3 hours. I keep snacks like carrots, grapes, almonds, cashews or string cheese handy in the house.

Check in with your partner or spouse

If you are married, it is so easy to get swept up in the madness of caring for a complex child. It is easy to set aside your relationship in caring for your child. However, if you are married, your child needs to see a healthy relationship and parents with a strong partnership. Every single day my husband and I find ways to check in with each other. It could be starting the day cuddling for a few minutes, texting one another throughout the day, or sending a quick email letting the other knowing we are thinking of them. It’s been imperative for us to stay connected and united. We make a point of eating dinner together nearly every night as well. Not only does this set an example for our child, but it gives the two of us time to chat about our day. Most nights we collapse into exhaustion, but we also attempt to spend a few nights a week together either watching TV tougher, reading side by side, or just chatting while we lay in bed.

Cuddle or find ways to love your child every day

I realize not all kids like to cuddle, and all have different love languages of how they best receive love. My son is very tactile, and he loves to cuddle. Every day in the morning, we wake up with a good cuddle. We talk about what we are going to do for the day, and we get ready together. During the day, I give him as many hugs and kisses as possible. He’s getting to the age where he doesn’t love them as much. When he comes to me for affection, I make a point to try to drop what I’m doing. It’s rare to find him come to me some days. I know how fragile his life is, and I never want to feel like I missed an opportunity to tell him I loved him. Breathe and enjoy these moments with your child. Even though there is a lot on your plate, at the end of the day, you are still a parent, and they are still your child.

For several years, I have found ways to manage stress and found ways that help me cope. I realize the not everyone will find value in what I do. I encourage you to try to find a way to incorporate your strategies into your day to ensure you are taking care of yourself. I honestly use to bristle when I heard “Just take care of yourself,” but 4.5 years into this wild journey and I know this is the truth. Be kind to yourself, forgive yourself, and always remember that if you have a bad day, there is always a better day around the corner.

We want to know how you manage stress. Comment below

 

 

 

 

 

 

 

 

Each day I lay on a small mat, on a hard floor, and I listen quietly to my breath. For the past two months, I have taken time away from the chatter, the blogging, the chaos of social media, and the turmoil and trauma of raising a child that is both medically fragile and developmentally delayed. A puff of scented mist fills the air, and a warm and cheerful scent of citrus fills the room. Slowly I listen to my breath as my stomach and chest rise and fall. I sink deeper into a quiet place where my brain is quiet. Not a peep in my brain. The hamster that is frequently churning in my mind is quiet, and I am silent with only myself. I close my eyes, and I only hear the soft breaths of others in the room with me. Each person is in their place, their world, and with their breath. For 60 minutes a day, I find a place where there is no one but me and my breath. My soul, my spirit, and my heart become unified in the breath. Outside chatter and noise cease to exist, and I remind myself that self-healing comes in many forms.

Four years of my life have been spent on the front lines of parenting a medically fragile child. The child I raise doesn’t have the same life as a typical child. Each day we are playing Russian Roulette with several illnesses, and we hope and pray the treatment we have works. There have been moments when I have been punched in the face with phrases like No cure, Life-threatening, Life-limiting, prognosis unknown, no known umbrella diagnosis, open heart surgery, potential neurosurgery, feeding disorder, apraxia of speech, global dyspraxia, and g-tube placement. Many of the days were spent in a blur. Not once was I ever-present in what we endured. My nights were restless, and I would barely close my eyes before it took to wake. Days were spent in therapy, at the doctor, calling insurance, working with social workers, nurses, and hoping he isn’t forgotten about in his IEP at school.

Four years of his life, I have been a mother that has been on edge. My temper has been short. My jealousy and envy for normal parents and normal children fueled my rage. Looking into the future was impossible because I didn’t know how long he would be here. There was no crystal ball given to me on how to raise a child that was so complex. Doctors often would gaze at me with puzzled eyes, and I would get sad and sympathetic looks from friends and families. I was tired of feeling like I was constantly on someone’s radar for “what else is going wrong in V’s life today.” Several years in and the diagnosis have not stopped coming. In fact, we have added diagnosis, doctors, and therapists along the way. There are so many comments that are well intended but poorly received. I don’t mean to take it personally, but I do. My life has never been about being average. Before motherhood, I was an overachiever, and after I had my child, I felt like a failure.

Nothing I can do can fix any of what I am facing. As a mother that is my job to “fix” or make things better. I can’t make any of this better. Instead, I dove into a world of “Palliative” care. A term coined for adults in nursing homes or people battling cancer. It was not a word I wanted associated with my son. At the ripe age of 4 years old, we were told, “He won’t ever get better. We need to move to accepting where he is at and improving his quality of life.” A wheelchair was ordered, disability placards were given, therapists were recommended to help with behavior, and we were continuing to drown more and more into an abyss of his disease.

It as clear then, there was no longer an option of being stuck in anger, resentment, frustration, and grief. I could not wade in the tides and waves of pain, and I took a step to heal my mind, spirit, and heart. My first day on the mat felt awkward and weird. Listening to other people breathe, slipping on my mat, and falling in and out of poses made me feel self-conscious. In the end, as I laid in my final resting pose, my head was quiet. For the first time in an extended period, I heard only my breath. When I got home that night, I laid my head on my pillow and drifted off to one of the most solid nights of sleep I had in years.

My husband noticed a change in me immediately. He said I was relaxed, easier going, and less stressed by everyday nuances. I was getting in fewer arguments with people I loved, and I was finding myself less angry at people that had normal children. Acceptance started to grow in my heart, and I watched my spirit blossom into the mother I was supposed to be. When dark or anxiety ridden thoughts entered my mind, I could control them by focusing on my breath. I could pause my day and breathe to remind myself that I could be in control not of my surroundings but my thoughts. Instead of focusing on what I could not control about my son and his diagnosis, I could control my reactions, my words and how I allowed my anxiety to fuel my days. Sixty minutes a day was all it took to take me a place from utter darkness to having a soul that is light and happy. I see the possibility in every single day now. No longer do I wake up hindered by exhaustion or filled with grief. I know that for sixty minutes each day I will heal, become connected to my spirit, and I will learn to live in the present. In truth, the present is all we truly have.

Lately, there has been a lot of discussion in the news about bathroom rights for individuals that are transgender. States and courts are fighting the rights of these individuals at the Federal level. While some states are incredibly accommodating to the needs of this group other states are fighting tooth and nail to keep these individuals out of the bathrooms. I can tell you from my own experience bathroom issues go far beyond the rights of individuals that are transgender, but by this being propelled front and center it gives voices to others of us that struggle with this same issue. The fact of the matter is that as long as you are able bodied, toilet trained, and identify with the gender as your sexual organs, you have no problem going to the bathroom in public restrooms. However, there are millions of people that fall outside of those categories.

I am a caregiver to my child, who is 4, and is disabled. One of his disabilities includes that he is incontinent. We don’t know how long it will take for him to train on a toilet, and if he will ever train on a toilet. Currently he is beyond the size of an infant, and we have no safe place to change him when we are out in the world. My experiences dealing with this issue have been nothing short of humiliating for me and for my son. Since there is no place to effectively change his diaper, we are often forced to pick dirty floors. I have laid him on the floor with blankets beneath him in bathrooms all over the place. Sometimes there are no places to take him that are private enough and give him the dignity of privacy while being changed. If you think about it, the changing tables at restaurants and stores are often on the side of a wall in the public part of the restroom. Not only is this awkward for me, but it’s incredibly humiliating as strangers gawk at us while we change him! Imagine your 4 year old’s private parts being exposed to anyone that walks through a door. We have had more inappropriate stares by strangers than I care to even share. I often feel horrible for my son.

As he has gotten older, it has gotten harder to find places where we can change him. We rarely go out of the house at some times of the day for fear that he have a messy diaper. There is nothing worse than a child sitting in a diaper that not only stinks but is messy and have no place to change them. There are numerous times we have had to force him to stay in that dirty diaper for much longer than necessary as we search for a place for him to be changed. We have left places early to deal with his diapers, and we have resorted to changing him in parking lots in the car. It’s the most challenging issue we face when we go out in public as he gets older.

I am his full time care giver. The state of Minnesota is amazing and enables me to be his paid care taker. I will be able to be his PCA for as long as necessary, but I am also of the opposite sex as him. As he ages, it becomes less and less appropriate for him to follow me in to a bathroom. Not all stores or restaurants have family restrooms either. While at age four he’s still not outside the norm in a Women’s bathroom, I am sick to my stomach thinking about what we will do when he’s 10 or even 15 and needing to be changed. I know many parents dealing with this issue as we speak. There is no place for them to go where it is socially acceptable. In the health care field, and specifically in the world of personal care assistants, it is extremely common that you have opposite sex care givers. I had a friend point out to me that we can’t be forced to only hire care givers of the same sex so our children can be changed in the bathroom of their biological sex. Where do we go with our kids at this point? Do we accompany our child in to the bathroom of our own sex or of their sex? There is no answer at this point that seems to make sense to me.

Bathroom issues are so much more than a single issue. Society as a whole seems to be blind to those of us that do struggle. Whether an individual is transgender, or if they have a disability, these issues effect millions of people in our country. To date there is no answer or no solution for either of these parties. I ask all people to be aware that for many people bathroom issues are a highly sensitive, personal and incredibly difficult situation. No individual that identifies as a man and looks like a man should be forced to go to the bathroom in the restroom that matches their biological sex. Additionally, no individual that is incontinent should be relegated to being changed on a dirty bathroom floor, in a corner, or in a parking lot in a car. We need to find solutions that are inclusive and will enable all people the dignity and respect of using a bathroom. We as caregivers of children with disabilities, should be rallying with the Transgender community. Their rights are our rights. There is nothing truly more personal than going to the bathroom, and all people deserve to be able to go while in a public setting without fear of being hurt, humiliated, or scared to use the bathroom.  We need bathroom options for all people. I would encourage you to take a stand for the millions of people, like my son, who deserve a place to be changed outside of a bacteria ridden floor.

 

 

Four years ago a miracle happened before my eyes, and our lives have never been the same. We sat vigilantly at the bedside our of our 3 month old baby, and he was clinging to life. Doctors had already sat us down and told us the prognosis was not good. There was little hope for the staff that he would rebound. He was the most ill child on the PICU floor, and they gave him a less than 3% chance of living. I didn’t care about percentages because I knew the child I had delivered was a fierce and strong warrior. He had already battled so much in his 3 months. We spent weeks in the NICU, he had feeding issues, reflux, hypoglycemic episodes, significant jaundice and a liver that was shutting down, and respiratory issues that made us all stay on our toes. He persisted through those weeks in the NICU. Every day he puzzled the doctors because they knew something was wrong. However, they could never tie it all together. I knew he was strong because we went home and he made it several weeks on his own at home. It did not matter to me that the doctors lacked hope. Hope was strong and surging in me.

That night I sat at his bedside. I stayed awake for every single hour of the night, and I watched every single hour as his labs were drawn to see how his body was responding. Silently, I prayed to God above and I asked him to save my child. My promise was that my child being saved would not be in vein. My life would be dedicated to him, and I would advocate, educate and help anyone I could to improve his life and improve the lives of others. My friends, family and strangers rallied around us and started prayer circles for him. Churches prayed for him that morning begging for healing hands to touch him. God was well spoken to that evening and that morning, and in small increments that night, God showed us that miracles do happen. God reached down through the heavens, and he touched my son. As the night wore on, he progressed and his labs improved. Each and every hour we held our breath as his blood sugar was taken, and we realized after 12 hours of stable blood sugar all other organ function was also starting to improve. We lifted our hands and our hearts and praised God for saving our son.

The hours turned in to days, and the days turned to weeks. We watched our son improve and fight to survive. Through the process of his recovery, we have witnessed the strength of the human spirit that I never knew existed. His drive to learn, play, love and see the world is infectious. He has touched more lives than I can even begin to describe. Over the years we have received packages, letters, emails, videos, postcards and gifts from all over the world. That night people fell in love with him, his story and his fight to live. We have been blessed with so much love and kindness through the years. Even though the days are tough, we still are so grateful for the gift we have been given.

I have heard it over and over from cynical people that miracles do not happen, and that God does not exist. It doesn’t matter to me that they feel this way. That day 4 years ago, darkness was swallowing us whole, and light began to shine down on us. It was evident to us in that room that we were not alone. There is no way to explain what it feels like to live through a miracle that gives the moment the credit it is due. As he progressed, even doctors began to admit to us there was no explanation for his recovery. For all intents and purposes our son should have died. Every single organ was shutting down, and he was on full life support. Dopamine pumped through a central line that went straight to his heart. He was only alive because of machines. Yet, after only a few days, all the machines were removed. Within 18 days of the event, we were out of the hospital. It was incredible how quickly he rebounded. Months later we sat with the PICU doctor in his office for a regular Pulmonary appointment, and he looked at us and said, “I still cannot believe he survived. He should not have made it. But we as Doctors are only a part of the plan. The Lord works in mysterious ways.”

My faith in God has never wavered since that day, and it’s only strengthened my relationship with him. I know that my son was saved to do great things, and I know he was saved to teach me lessons I never would have expected. Our lives are full of incredible people that pray for us every day, and we give back in so many ways to the community. We have been touched to meet other families that have similar stories. Over and over I have heard of children on the brink of death, and doctors have lost hope and are preparing for the end. The stories always seem to be impossible, and the diseases that the children are facing seem like obstacles no human could ever conquer. Yet, we hear that over and over, God touches these children and saves them. Medicine can treat our children, but ultimately if a child is going to live, it’s not up to the doctor’s. We have learned to embrace the doctor’s on our team as a gift that is given to us by God. God has given us the most talented team of medical professionals in the state. Every single member of his team, is consistently stumped by his diagnosis, prognosis and how he continues to beat his odds. Our son wasn’t suppose to do so many things, and every single thing he was told he wouldn’t do he smashed the goal with gusto.

If you are reading this and are new to this journey, never lose faith that God will walk with you and your child. Miracles are performed every single day. You will find strength you never knew possible, and your child will fill your life with so much love. Whether your child lives months or years, each and every day will be a blessing. There will be so many lessons taught to you, and every day God will be there comforting you, holding you, and giving you strength to keep going. Stay connected to God. Have Faith, and all things will be possible. We are proof that miracles happen! God is so Good!

“Beep, Beep, Beep”. I shoot out of bed as I hear the alarm of my son’s feeding pump notifying me it’s done. This is promptly followed by a proclamation by my son “Mommy, It’s DONE!” I drag myself out of my bed, throw on a pair of pants that are crumpled in a pile on the floor, and walk to his bedroom. The alarm is still going off, and he is still exclaiming to anyone that will listen that his food is done. My eyes are in a half haze, and I push the total button to ensure he has gotten the full amount of the feed and then turn off the pump. Once the pump is off, I reach over to his extension ensure that it is clamped so that no formula spills out of the tube when I disconnect it. Believe me, the bed has been fed more than a few times! I unhook his extension, and he pulls down his shirt. He jumps to his feet, and he proudly yells, “I’m all done eating!”

Most days this is exactly how the morning will begin. Though, more than a few times will the pump get clogged or a line will get kinked and we are woken from a dead sleep at 3 am. There are days I wish I could take a hammer to the alarm. I hear that alarm even when his pump isn’t running. It has become that ingrained in my psyche. When I think about our journey to this point, I don’t know that I would have ever imagined being a mother to a child that was dependent on a feeding tube to eat. Yet, in the same token, I can’t imagine trying to continue to fight him to eat day in and day out.

After he is unhooked, he almost always wants to go downstairs to play. We take whatever toys we can fit in our hands and walk down the stairs. For a while, I let him quietly play and allow his tummy to digest the food. Within about an hour I will notice he is starting to breathe a bit heavier, he will start to shake his head, and I can hear the gas starting to build up in his throat. I know we need to help get the gas out of his tummy. I let him know it is time to vent him and I need him to lay down. Generally this is met with tears and a mild tantrum because he doesn’t want to stop playing. I let him know I only need two minutes to get the bubbles out of his tummy. He lays down, and I hook him up to an attachment and 60 ml syringe. A rush of air and sounds of gas will start exploding in to the tube and in to the syringe. I pray that a gush of gas won’t send the contents of his stomach exploding all over my hands and shirt. This time I am lucky because nothing gets on me. Instantly, I can see the relief on his face as though he has had the best burp of his life. It’s a curious place to live in when you have to physically burp your child through a tube. This is our life every single day. He hasn’t ever been able to burp, and this is the only way we can ensure he gets the gas out and is comfortable. I never knew how important burping was until my son couldn’t do it on his own.

After he is vented, he jumps to his feet and I can tell he is instantly relieved and able to continue playing. It isn’t much longer after a good “burp” that he tells me that he is hungry and wants to eat. Eating for him is not like eating for you or me.

“What do you want to eat?” I ask him.

“Chips, crackers, and apple juice,” He exclaims with a jump in the air.

Due to his inability to chew and swallow, his diet is very limited but he still enjoys eating. I give him his cheddar and sour cream chips, a couple club crackers and a sippy cup of apple juice. He sits at the table, turns on his iPad, and starts to munch on his snack. A snack for him will take about 30 to 45 minutes because he takes very small bites. He also won’t eat very much of it. After he’s satisfied, he will get down from the table and exclaim, “All done eating.” Most parents wouldn’t be happy with his diet. It truly is almost entirely void of any nutrients, but I am always elated when he will put anything in his mouth. There is always the benefit of knowing that he will get a bottle of formula that is completely balanced nutrition. This enables him to learn to like food without worrying about having to force him to eat foods he can’t chew or swallow.

He will get back down and start to play with his trucks and cars. I will start to clean up his mess, and I know it will be about an hour before he will need to be relieved again by venting him. We typically vent him by hand 3-4 times a day, and then when he’s fed overnight he is vented continuously through a bag that attaches to his feeding bag. Having a tube fed child isn’t the hard part for me, it’s having a child that cannot burp that makes this more complex. Typically I am watching him like a hawk when he plays because the gas can build up at any time. It wasn’t too long ago that the bubbles in his stomach got so aggressive they pushed up his esophagus and completely blocked his airway. He had blue lips and was incredibly pale. In order to ensure this doesn’t happen, I am diligent in watching as he plays to ensure the gas is relieved before it gets out of control.

After he takes a nap, we get ready for dinner. He will proudly point out everything we are going to eat for dinner. I will typically ask him, “Do you want to try this food?” He will always look at me with this funny face and yell, “NOPE”.  We still want him to feel like a part of the family, and it’s important to us he know the social aspect of eating. He will sit at the table. I will fix him a small plate of something. Most of the time he doesn’t touch what I put on the plate. He will watch us eat and ask us if it tastes good. We will offer the food again, and he will always decline. Even if he can’t eat, I know he appreciates being included in the meal.

The evening wears on and it’s time to get him hooked up to his pump for his overnight feed. We give him food over night because his body can’t tolerate large volumes of food at any one time. His digestion and inability to burp makes it challenging to give him large quantities. The overnight feed allows him to be fed while he sleeps while getting a slow drip of food to his stomach every hour. We prime the machine, hook up his Farrell bag, get him connected, and then we tuck him in. Most nights he ends up tangling himself in the cords, his alarm beeps because he’s kinked the cord, but eventually he gets situated and he goes to sleep.  We listen for the alarm throughout the night, and most nights we get through without disruption. We wake up to do it all over the next day.

This life isn’t typical by any stretch of the imagination. However, the tube has given us a freedom and a sense of calm. No longer do we have to worry about what he’s not eating. We don’t have to fight him to sit at the table. For the first time in his life, he can play and be unencumbered by the stress of food. Feeding tubes are definitely a life changer but for us they have been a life saver. I wouldn’t have our days any other way.

 

 

This week marks the week where we bring awareness to a different type of feeding. According to Feeding Tube Awareness Non-Profit, there are an estimated 500,000 people in the United States have feeding tubes. In their research they found the pediatric community encompasses 20% of all patients with feeding tubes, and they have identified more than 300 conditions that may require a child to need nutritional support through a feeding tube.

In the past 4 years we have run the gamut of being on and off a tube. At birth our son had a nasogastric tube or NG tube. This is a tube that runs through the nasal cavity, down the throat and esophagus and in to the stomach.This method is often used when the the tube is going to be used for a short period of time. Many babies will have a ng tube at birth if they have trouble latching, swallowing, or sucking. Our son had all of these issues. The NG was used to enable him to learn to suck, swallow and breathe.

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NG Tube used for Feeding in a Premature Baby

Most children will wean off the NG tube. We were able to wean off this tube within about 6 weeks. Graduating from this tubes is nice for the patient as they no longer have to deal with the tube running through their nose and throat. Graduation doesn’t always mean a patient will be done with a feeding tube though. Many patients will use different forms of feeding tubes at various times in life.

Our next experience with the feeding tube was at 3 months old. Our child was critically ill, and he was unable to digest or tolerate any food. Any amount of food in his body was causing his lungs and organs stress. At this time, our son was on a form of feeding tube that bypasses the Gastrointestinal track.  Total Parenteral Nutrition, or TPN, is a method used when patients cannot (for whatever reason) digest food in their digestive tracks. In order to deliver this method, the doctors had to place a peripherally inserted central catheter or PICC line for short. Our sons line was placed on his jugular vein in his neck. PICC lines are used for numerous reasons. Our son’s was used for nutrition and medications while he was on life support. Through the PICC the TPN was delivered to him for several days. TPN was life saving for him while his body fought a critical illness. It is typically a short term solution for most patients and babies. Though some patients will rely on TPN for a much longer time.

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Picture of  a Central (PICC) line in an arm

When he graduated from TPN, we were able to place a nasojejunal tube or NJ tube in to his nasal cavity. The NJ is like the NG but instead of the tube being placed in to the stomach it goes in to the small intestines. During critical illness his stomach was shut down and unable to digest. The NJ enabled us to bypass his stomach and feed him directly to the intestines. Feeds that go this method typically have to given a slower pace than through a NG tube. NJ’s are ideal for any patient that is unable to digest via the stomach while still giving them nutrition in to the digestive track. There are many reasons a patient would end up using a NJ feeding tube, and for our son it was a life sustainer as he recovered from his critical illness.

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Our Child on using a NJ tube for nutrition

For several years following the critical illness, our child was able to do well on his own. He learned to suck, swallow and breathe. He was able to breastfeed, use a sippy cup, and learned to suck from a straw. Unfortunately, he was unable to learn to effectively chew and swallow solid food. As he grew older, his caloric needs increased but he was still only able to manage calories needed for a much smaller child. Most days he was eating less than 500 calories via food and the bulk of his calories were milk or a high calorie nutritional supplement like Pediasure. This worked for a while, but over time malnutrition became evident to both us and his doctors. He began losing weight, his skills were stalled, and he was falling further and further behind in development. There are many signs of malnutrition in children and a full list here. For our child, he had low energy, difficulty learning, decaying teeth, he was underweight, shorter than normal for his age, had a bloated stomach, a poor immune system, and a poor attention span. This impacted every aspect of our day as play was difficult, he had little to no language or ability to speak, and his attention span to learn was very poor. After months of debating what to do, we finally made the decision to place a Percutaneous endoscopic gastrostomy or PEG tube.

The PEG was a short term solution so the doctor could insert the tube without having to do major abdominal surgery. She was able to drop the PEG down his throat via a Endoscopic procedure. The peg was placed and then secured to the stomach wall with a small stoma opening on his abdomen. While the stoma healed, we had the PEG. The PEG has a long tube that comes out of the stomach, and it is hooked up to an extension to feed the patient.

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Patient with a PEG feeding tube

After his stoma was healed, we were able to replace the PEG with a MIC-KEY button. This is a small button that can then be attached to a longer attachment. The button enables a patient with a feeding tube to have more freedom and fewer items hanging off the abdomen. For my son, it meant we no longer had to tape down the PEG tube to his skin. He was able to move about with more freedom. When it is time for him to be fed, we attach a 12 or 24 inch extension which hooks directly in to the port of the button. When he is down eating, we unhook the extension and he is free to move around with nothing hanging from his stomach. For many with feeding tubes that are directly in the stomach this is the ideal feeding method. Buttons can be placed in either the stomach or the intestines. Much like the nasal feeding tubes there are two options for stomach buttons. Patients that cannot tolerate food in their stomachs can be fed directly in to their intestines. Since our child can tolerate food in this stomach, we are able to the the G-tube instead of a J-tube.

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Our son pictured with his Mic-key button

With all feeding methods the goal is nutrition for the patient. Most patients will eventually graduate from feeding tubes and while others may always rely on a feeding tube in some capacity. Most patients will not have a defined timeline of how long the tube will be needed. However, the goal is to eventually help the patient obtain skills to eat by mouth. If this is not an option for the patient, the feeding tube becomes primary source of nutrition. What most of us in this community want you to know is that feeding isn’t the same for all people. There are babies that are breastfed, bottle fed, and tube fed. There are children that eat by mouth or are fed by tube. However, the one thing we want you to know more than anything is that Fed is the best way to be.

Recently at church, we discussed the topic of pride. The feeling we all have of being proud of ourselves, our accomplishments, and of what we have. I had to stop and think for a moment about how pride was effecting me. I realized that it isn’t necessarily my own pride, but my own insecurity and other’s pride that effects me negativity. This isn’t to say I’m not guilty of being prideful myself, but more over, I am guilty of feelings of self doubt, insecurity, sadness, and longing for what other families have. If I were honest, I would admit that I don’t want to have these feelings. The old saying is that comparison is the thief of joy. There are no more truer words spoken in the context of parenting, and particularly in parenting a child with special needs.

It is difficult not to find myself going to that place where I wonder what would life be like if my child were “normal”, “neurotypical”, or “healthy”. Each and every day I am bombarded with photos, advertisements, social media updates, charts, and graphs that depict how our lives are different than the norm. When I am out with my son, instead of being able to enjoy our time together my time is often spent feeling anxious and afraid. There is no notice of when things can go wrong with him, and I am often reacting quickly to an emergency. When I look to the parents around me, I see them playing, chatting with other parents, and seemingly looking care-free. There is this part of me that desperately screams inside of me and it says, “I WANT THAT.”

I know it’s wrong to feel this way. Trust me I know I should not be thinking these thoughts at all. Unfortunately, these feelings and thoughts often roll over me like a giant wave coming in to shore. I imagine myself sitting on the sand while building a sand castle, and then the wave just hits me and knocks down the castle and takes it back to the ocean. I can feel the tears streaming down my cheeks, and the heart break of what it feels like to lose what you worked so hard on. When I’m crashed with this ocean wave, I am often in the middle of an average day. It will hit me so fast, so hard, and I will feel like I can’t breathe. In my heart, I know it is wrong to want what you cannot have. Over and over, I have heard that the grass is not always greener. Trust me when I say, I know that I should feel grateful and be happy. However, there are days when it’s all just too much to bare.

This frustration then makes me feel bad for even having these feelings period. I know it’s not my friends or strangers fault they have healthy kids. When I watch their lives, I know it is wrong to feel anger and bitterness that we don’t have that same life. When I see the photos of vacations or trips to the beach, it reminds me of how much different things our for our family. I know I should not feel this way. I should feel grateful my child is alive, and I should feel grateful that every day I have the opportunity to be his mom. However, there are days when it’s hard to be grateful looking at feeding bags, venting bags, cabinets of medications, and then my calendar full of appointments for therapy and the doctor. This is not how I expected parenting to be.

I see things on social media of parents talking about sports, activities and the future. Then I look to my own life, and I know my child will never play any sports due to his health. His future is very unknown. While many of my friends are planning and saving for college, I am reading on guardianship and hoping there will be transitional programs to help my son even find a job. At this point in time, we don’t know if he will ever live independent, ever be employed, and we don’t know if he will ever get married or have a family. He is my only child, and for me that means I may never be a grandmother. When I lay my head on my pillow at night, these are the thoughts and feelings that torment me the most.

The worst of it all is these thoughts and feelings are not who I am. Prior to parenting I was the most positive and optimistic person you would have met. My mom always said I wore rose colored glasses, and I always prided myself on seeing the bright side in every situation. There are amazing days, and the days I do have with my son are filled with joy and happiness. Parenting a child with special needs has taught me how to find strength when my tank is empty, and it has taught me that a child will teach you more than you ever thought possible. It is hard not to get stuck in the sadness, the blackness and the despair that is often filling my days. The ability to rise above all the adversity I face takes super human strength. If there were anything I could share with any other parent going through this time, is to say that it’s ok to feel this way.

Too often we have people in our lives that want to tell us it’s going to be all right. I am here to tell you that it may not be all right, but it will be ok. Our lives won’t look like anyone else’s lives, and our children will face and brave more obstacles than most humans go through in a lifetime. It is ok to have moments of doubt, sadness, anger, bitterness, and even jealousy. The only thing I have to remind myself every day is to not get stuck in those emotions. Have the emotions, feel those emotions, and then move on from those emotions. Even though this road is hard, our kids need us to be their advocates, their voices, and their parent that helps them reach their fullest potential. We must not think about the future, but we must take it day by day. It’s ok to feel defeated. I promise you I’ve felt it a million times. However, we have to keep going, and we will keep going. We have no other choice.

Dear Sir,

I know you don’t know better, but I truly was bristled by our conversation. I know it’s part of your job to understand the financial position of your clients, but it was really embarrassing for me. I never imagined myself in this position. It was not a part of my plan to be in a place where I wasn’t contributing to my family financially. My family had always planned to be a two income home. When I was trying to explain to you why I was no longer working to care for my medically fragile child, you assumed it was because my “maternal instincts” kicked in. I don’t really know what you mean by that, but I assume you meant well. Then you said, “I assume you are a homemaker now.” Most women would naturally do anything in their power to care for their child, but this was not about “maternal Instinct”. This was more about a corporate environment and a society that is less concerned about family crisis and more concerned about bottom line and profit.

You see, kind sir, I had every intention of caring for my child and continuing my career. I spent my youth in college studying and earning a Bachelor’s degree. There was never a time in that process that I said, “I am earning this degree so I can become a stay at home mom.” Nope. I wanted to work. It was a part of my being, and my drive was to be successful. After I graduated from college, I went to a large corporation and I started my climb up the steps of the good old boys club in the financial world. It was fairly quick in this climb, that I realized the financial world was not for me. After 4 years looking at credit reports, income taxes, and pay stubs, I knew that my heart was craving something more meaningful than managing money. At age 25, I was recruited to a new company that was looking for top talent. I felt really proud to have a company woo me to their organization, and I was excited when I was offered a job. My first day still feels like yesterday, and I remember saying to my new colleagues that I was going to retire at this organization. My plan was to be a life long employee, contribute to this organization, dedicate my time and energy to their mission, and hopefully save for my future with a 401k.

The first 5 years of my career were fantastic. I found myself climbing high, earning praise and financial gain along the way. I saw my salary climb, and I was able to purchase my own home as a single woman at 26. Everything seemed to be going great, and I even was offered the opportunity to work from home. My salary continued to grow, and I was starting to really feel good about the direction my life was taking. I got married, and my husband and I were able to start saving for our future. In 2012 I became pregnant, and by October I gave birth to a son. Life at that point flipped upside down. My child wasn’t born healthy. There were a lot of issues from the day he entered the world, and in the four years he has been on this planet the issues have not stopped.

Initially my employer was understanding, and they were pretty kind in giving me extra time off to care for him. Over the years though, they started to lose their patience. I needed to focus more, talk less about my son, and be more present during the day. There were nights I would lay awake, and I would wonder how I was suppose to do any of that while I watched my son’s health deteriorate. I was compared to other employees that had children battling acute illnesses, and I was told they were able to bounce back. The problem was my son’s illness was not acute. There was no end date to his illness. In fact, there was no cure for any of the diseases he faced. This was a chronic illness not an acute illness and the comparison drove me mad. As the diagnosis started to pile on, it became more and more apparent to me there was no end in sight.

On this very day one year ago, I was told that I needed to focus or things were going to have to “change”. My son had just been diagnosed with a major heart condition one day before. It was hard to focus on anything to do with work at this point because I was worried if he would live or die. His cardiologist had told us he would need open heart surgery, and we believed it would be within weeks. There was no way that work could be a priority at this time. I went to my employer hoping they would be compassionate to my plight, but the conversation went the exact opposite way. I was met with a coldness in my tone of my employer, and I knew immediately that they were preparing to find a way to fire me. You see, sir, is that after 12 years with this company of dedication on my part, I had become disposable. My numbers and production were lacking, and I was not giving them the desired results they needed. It did not matter that I had been promoted numerous times, had been given numerous awards, and had made them a lot of money over the years. What mattered was that I was not doing it now. Their profits were more important, and my production was sufficient. It was a cold hard reality.

Unfortunately, this situation didn’t just happen to me, but it happens to millions of families every year. Every year people that care for children with chronic illness are forced in to impossible positions where they have to make a choice. It wasn’t maternal instinct that kicked in – it was that I knew I couldn’t pick a job over a child. I wanted to work, and I wanted to continue my climb. There was nothing about becoming a mom that made me want to become a stay at home mom. I didn’t birth him and suddenly want to be a “homemaker” as you called it. You see, I’m not even a home maker. Every single hour of my day is dedicated to him. If my house gets cleaned and a meal gets made, it’s been a fantastic day. However, most of my days I’m managing a feeding tube, asthma from bad lungs and a failing heart, feeding issues, a hormone deficiency, and I’m also trying to help him learn and thrive. I’m not a homemaker. I’m a nurse, a doctor, a therapist, a social worker and a mom. I suppose in a way my maternal instincts did “kick In” as you would say, but it isn’t the way you assume it to be. I was forced in to this place, and now that I’m here I’m not complaining. However, please don’t assume that parents caring for children that are medically fragile and developmentally delayed are not working. My new job is as CEO of his care. Please put that on your forms dear sir.

Kind Regards,

CEO and Founder of the Paulson Home

 

 

 

It was a year ago that our lives were turned upside down. We had just found out about our son’s serious heart condition. The Cardiologist was so concerned about his heart that he believed surgery was within weeks. We waited with bated breath to find out what the surgeons wanted to do about his bad valves. Our thoughts were consumed in the danger and unknown that laid before us. The thought of my son’s chest being cut open to repair his heart was terrifying, and I could not think of anything else at the time.

It was a year ago that I called my employer to tell them the news. I was terrified because I knew it was another thing to add to “what was wrong with my son” conversation we had been having for years. For months, they kept asking me to focus. I was told that I needed to think less about my son, and do my job. My calls were pulled and audited,  and they would berate me for bringing up my son with my customers. I was in a place where life was consumed in his health and diseases, and the only reason I was working was because of the outstanding loans we had. We had recently built a home that was safe for our son, no mold, no leaky windows, no insullation issues, and no mice. Big loans and bigger payments were due, and the only way they were made was through working. For 3 years, I was pulled away to deal with his hospitalizations, diagnosis, therapy, and the scary unknown of what was to be for his life. I was scared telling my employer that something new had popped up. It was clear that day their patience with me, someone that had devoted 12 years to them, had run thin. No longer were they understanding my serious situation and instead they were threatening me. With no known plan, I hung up the phone, called HR and went on unpaid FMLA leave.

I couldn’t take the pressure anymore of an employer that didn’t care about our family. Within 1 month, I had officially resigned, and we were left to pick up the pieces. We were left with loans, debt and many unknowns, but we pushed through with the tremendous help of our friends, family, church community and strangers. At the time I was worried I had lost my identity. My entire life was wrapped up in being a corporate climber. I had no idea how to be a mom. There was nothing in my DNA about sitting still, and I had no idea how to not contribute financially to my family. I was worried I would be called a freeloader, a leach, and that our family would be ridiculed for using public disability assistance for our son.

Within a few weeks, I started to find a rhythm with my life. I was cooking more, attending all his therapy, I was more engaged in his care, and the most amazing part of all of it was I developed a relationship with my son I had never had before. In all the time I was working I never had time to really get to know him because I was consumed in arranging his care. There was little time left for me to really enjoy being with him. Leaving my job freed up that space. I learned my son was not just a chronically ill and medically fragile child. He was a child that loved dinosaurs, cars, trucks, and trains. He loved to run, jump, swing and climb. His heart was kind and sensitive, and he loved more than anything to be cuddled and hugged by his mom and dad. I learned what made him scared and nervous, and what made his heart sing. We were able to work together on ways to alleviate his fears to many sensory stimuli. I was able to finally take charge of his feeding disorder, and he was finally able to start preschool.

I think even more important in all of this was I found my own identity. My entire life had been wrapped up in being and appearing successful, that I had let go of all the things that were once important to me. I forgot about how my dreams as a child were never to be in a corporate job. My dream was always to be a writer, and I was always an advocate as a child. I was a young feminist shouting for women’s rights, I became a vegetarian shouting for animal rights, and I studied and earned a degree in Spanish and became an advocate for the immigrants in the US and worked with immigrant families. Somehow I had let greed and looking successful chase me away from my fundamental morals. This past year I was able to reengage with that person. I was able to learn about sustainable farming and purchase meat and poultry from farms that were humane and kind to their animals. My writing took a top priority and I became more invested in writing and advocating for children and families in our situation. I learned how to bake bread, found ways to reduce chemicals in our home, and got back to the little hippy girl I was at 20 years old.

In the community I was able to connect with others, and we formed a parent support group for families raising children with special needs. My husband and I were able to serve more at church. I started volunteering for Meals on Wheels as well. When I was working, I was not present in my life. I was a cog in a wheel, and all I cared about was money. The money was effecting and driving every aspect of my life. Walking away from that money, gave me the space and time to realize that money should not be a driving force in our happiness. Our lives are a lot different financially, but it’s ok. We have a roof over our head, we have food on our table, clothes on our back, and we have become resourceful in how we spend our money. There isn’t a lot left over for emergencies, travel or extras but it’s ok. We have each other, and together we can navigate it all together.

Walking away a year ago was the scariest moment of my life. Today I can say with certainty that it was the best decision of my life. What I thought life was suppose to be about was actually a lie that is perpetuated over and over again in our society. We don’t need to be rich to be happy. In closing, I will remember the wise words of my former Neighbor Duane Googins, “I would rather be rich in life than rich in money.” Amen.