Without a Crystal Ball

Our Journey through Chronic Illness

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.

img_2309

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.

PICC Line.jpg

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.

IMG_2122

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.

PEG.jpg

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.

IMG_4504.JPG

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.

Advertisements

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.

We embarked on our life with a feeding tube in 2016, but we had been dealing with my son’s feeding disorder since birth. There is really not much more isolating than having a child that cannot eat given that we live in a world that revolves around food. Every party, every holiday, every day 3-5 times a day, you are confronted by the fact that eating is not as simple as putting it in your mouth and chewing. The hardest part for many of us on the front lines is that our children aren’t just not eating but they don’t enjoy eating it. There are more tears at our table when food comes out than when we tell him it’s time to go to bed. The one thing in our home that will send my child in to a panic and melt down is being told he needs to eat. Eating for children with Feeding Disorders is often not enjoyable but a sense of stress and trauma.

Many of us get advice and it is often unsolicited from friends and family. Most people that see what we are going through want to try to help us. It’s normal to want to help anyone going through feeding troubles. Unfortunately, some of the advice offered or the questions that are asked are anything but helpful and can at times be hurtful. We don’t mean to be hurt by what you say. It’s more that we what we are dealing with is very serious, and believe us when we say we have tried it all. Here is what is not helpful to ask or to say to a parent with a child with a feeding disorder.

  1. All Children are picky eaters

    This is not only not true that all children are picky, but also not true that what we are dealing with is about a picky eater. Children with feeding disorders are not picky eaters. These are children that have legitimate disabilities when it comes to eating, the mechanics of eating and swallowing, or have neurological impairments that make food overwhelming and terrifying. For my son, he cannot chew properly and he cannot use his tongue to move the food back to swallow. For other children, they cannot eat because they aspirate. This means food enters their lungs instead of going down the esophagus. Other children have difficultly with the sensory impact of food in their mouth. There is a lot more to a child with a feeding disorder than a picky eater. Please try not to compare your experience with a picky eater to a child with a feeding disorder.

  2. How long will your child have this problem? When will they be able to eat?

    Most of us have no idea how long the process is going to take to help our children. It’s natural to ask questions and to wonder what is going to happen in the future. If you learn anything about any person with a disease or disability, there is rarely ever a time line. I often liken it to you asking a parent of a child who is blind, “will they ever see?” Most of us truly do not know. We can’t give you an answer that will make you happy and put it in a tidy box. Some children are able to get through their disorders quickly, some will deal with it for years, and others may never be able to eat by mouth. Instead of asking how long, ask “How can I help support you while you are dealing with this issue?”

  3. But Have you Tried……

    Fill in the blank of Have you tried chopping up the food, blending the food, coloring the food, hiding the food, dancing with the food, playing with the food, etc. I can promise you that all of us in this world have tried it all. We have tried to do everything to get our children to eat and enjoy food. Most of us have read books, done online research, consulted doctors, started feeding therapy, and purchased every kind of chewy tube, utensil, plate or cup to try to encourage drinking and eating. We have tried it all, and we are still in a place where feeding is difficult and drinking is hard. We understand you want to offer support and help. But asking us if we tried something makes us think you don’t believe we are doing everything we can do to help our kids. It makes us feel insecure that you don’t believe us that we are doing our best. We are doing our best. Instead of asking us if we have tried something say, “I know you are doing everything you can.”

  4. Just let Your child get Hungry and they will eat

    Human nature and impulse is when you are hungry you eat. However, for children with feeding disorders it’s not as simple. Some children lack the brain signal that tells them they are hungry, others cannot chew or swallow, and others have a deep fear of the food and the sensory stimuli with food. For many children, they could be hungry and either won’t eat or can’t eat. Many of us have witnessed our children waste away and lose weight as we try everything to encourage them to eat. We have spent hours at a table coercing them to eat the foods we have prepared. The food is made as easy to swallow as possible and we make it with the least amount of undesirable texture, and many still will not or cannot eat the food. Most of us witness our children fall off the weight charts, stop growing and see the words Failure to Thrive show up on their medical charts. So no, our children will not just get hungry and eat. If it were that simple, we would not be in the position we are in.

Our children are doing their best, and we are doing our best to help our children. We know you are curious, and we know you want to help us. Please understand that each and every day we are bombarded with questions about their disorder. We wish we had the answers you seek, but we really don’t know. Also, we know you want to help us, see us struggling and want to offer suggestions. Please know that EVERYONE is giving us this advice and offering their two cents on how to improve the situation. The best thing you can do as a friend or family member to anyone in this situation is to tell them you may not understand it but that you care about them. Don’t ask or offer suggestions just say, “I love you and support you.”

Hey there!

How have you been? Wow, man time flies! We have known each other for 4 years, and I just want to say something. We are over you. See, I have been fighting with you for a while. Each and every day, I have tried ways to make you not be there. We have tried chewy sticks, smelling food, eliminating food, adding food, reducing textures, pureeing, mashing, and even liquifying the food. It’s come to my attention that it isn’t working anymore. It’s not me, it’s you. See you make it very difficult for my son to swallow and chew. His therapists say it’s a sensory disorder, but I know it is fear. He has choked and vomited so many times from trying to eat, and he knows it’s hard to eat. He isn’t overwhelmed by you, he’s afraid of you. I guess I can’t really blame him. If my tongue didn’t move laterally, having food in my mouth with no means to get it down my throat would be terrifying. Lately, he even cries in panic when food is in his mouth and he shouts with tears “GET IT OUT”. The look on his face is always pure terror.

I have been doing this all wrong for the last 4 years. If my child were blind, I would not force him to see. I wouldn’t make him try to visualize and see the ground. I would find ways to help him navigate the world without his vision. We would take steps to empower him, and help him gain independence. We took steps last year to help him gain independence. He had surgery to get a feeding tube placed, but we still hoped he would want to eat by mouth. I had strong hope that he would feel less stressed about food. In many ways it did improve his feelings about food. He simply didn’t want to eat much of anything. Once he got proper nutrition, he started bouncing off the walls in excitement. His speech exploded, his eagerness to learn was expanding, and he gained the ability to jump, hop and dance. Having a tube gave him freedom. For the first time in his life he had energy to do what he wanted to do, and food was the last thing on his mind. We lost several years in development sitting at a table hoping everything we tried would make him swallow. Now it’s time to leave the table.

A few nights ago I was tucking him to sleep he said something to me that changed everything. It was four really simple words. He was looking at his feeding pump and the G-tube extension, and he looked up to me and said it. “Mommy, I feel better.” I looked at him sort of stumped. I wasn’t really sure what he meant. He is at an age where a lot of really cute things come out of his mouth. I wanted to clarify with him, and I leaned in to him to ask him what he meant. “I feel better when I have food,” he reiterated to me. I again wanted to clarify what he meant by food, and I asked him if he meant food that he eats by his mouth or food that goes in his tummy. He picked up the extension in his hands, and he said, “The food that you connect to my tummy. It makes me feel better.” That was then followed up by “Eating is really hard.”

In that very moment, it hit me like a ton of bricks. He’s been trying to tell me this for years. With his tears, screaming, choking, coughing, and by shaking his head violently at me, he has been trying to tell me it’s too hard for him to eat. For all this time, I have ignored it and just fought through it hoping it would just one day click for him. It’s not going to just click. Why haven’t I seen it? He can do many, many things, but he cannot eat. And guess what? It’s ok! He doesn’t need to eat. He has this amazing tube that provides him all the nourishment he needs. Now he is free to explore the world unencumbered by his feeding disorder. He can watch us eat and inquire about our food, but he has the right and the ability to tell us he doesn’t want to eat it or even try the food. He finally has a choice. His choice was loud and clear, and he doesn’t want to fight with you anymore.

Today we will stop fighting with you. We will abandon the Sensory Therapy we have been doing to help him because we know it’s not sensory related. As his mother, I will enable him to have the choice to not eat and use his tube for nutrition. I have learned something so valuable in this journey with you, Feeding Disorder, and that is that Fed is the best way to be. His fed doesn’t look like mine, and it doesn’t look like the majority of the world. For him, this fed is the best way to get him the nutrition, it enables his brain to learn, and he has energy to finally play. When he is ready to tackle you on his terms, I will gladly guide the way and help him learn to eat. However, he has told me he isn’t ready, and he likes the way he feels when he can just use his tube. In a way, you won the battle, but we will win the war because we found a way to bypass your obstacles. He is getting everything he needs, and he doesn’t need you in his life anymore! We will embrace his tube, and if he wants to use it for life, that is his choice.

Sincerely,

The very proud mom of a Tubie

Today seems anything but hopeful. It is the day the 45th President will be sworn in to the United States. For many in the disabilities and medically fragile community, we are scared. We are scared that the services we have fought so hard for will be stripped from our children. We are worried that the tolerance that was created under President Obama will be obliterated and harmful words we worked hard to destroy will return. As a parent, I worry about what will happen to education if we approve his cabinet pick Betsy DeVos. I worry about how laws will be enforced under an Attorney General that has referred to children with disabilities as an annoyance and disturbance in the classroom. There is a lot that keeps me up at night. Yet, today I have decided I am going to be hopeful.

My son has several incurable diseases and developmental delays. He is a child that has beat the odds, and continues to surpass all expectations set before him. We were told he would never be Einstein, may never speak, have learning disabilities, may never work, may never contribute to society, and may die at a young age. We don’t know a lot about this future, and it’s made me realize we don’t know a lot about the future in general. Most of us are worried about things we cannot control. I am up at night worried about what could happen to health care without knowing what will actually be.  There are times I’m shaking thinking about what could happen in our legal system to the rights of children and adults with disabilities, but I don’t know actually what will happen. In our house we call this kind of worry “Paying interest on a bill that is not due”.

Today I am taking back my control in the situation. I am no longer going to pay interest on what is not due. There is no way of knowing what is going to happen, and speculation only fuels anxiety and fear. I have enough anxiety to fill up silos, grain elevators and probably enough to fill an entire cargo ship. Listen, I’m not letting the media, social media or my friends hype me up about this today. I am the one person that can control my reaction, my choices and my outcome. I am also one person that can create change in my community. I am putting my energy in to my Faith.

Today I am going to be the best mom I can be. I am going to continue to instill the values that I believe will make my child a loving and kind individual. He will be taught that all people are deserving of love, that loving someone has no gender or sex, and that all humans regardless of race or ethnicity deserve to be loved and respected. We are Christians first in this household, and we are citizens of this world second. We will continue to model our love for Christ by serving others, being humble in our lives, giving what we can to whoever we can, showing grace to our enemies, and loving our neighbors as we would love ourselves. Our model for how to be in this world is not the president, our model is our Lord and Savior.

Jesus would not care today about who is president. Jesus hated politics and came to the world to show humans how politics and religion were destroying us. He modeled love, grace, humility, patience, kindness and he sacrificed his life for all of us. If more of us were a little bit more like Jesus, and less like what we see in the media every day – we would all be happier. I can not control who our president will be. I don’t believe Jesus or any God answered any prayers by making Trump president. What we can do as Christians and as loving humans, is to love one another, be kind to one another, and find a way to not get sucked in to negative messages we see every day.

I’m going to remind my son every day that Jesus loves him, I love him, and that he is a perfect master piece. I am going to teach him to love others and respect others. He will learn that he is not defined by his disabilities, but they are simply a part of his fabric. I can control the messages he hears, I can instill the values in him that are important to me, and most importantly I can model what I want him to see. Our family will continue to serve our local community, we will continue to find ways help those in need, we will continue to help our neighbors, we will continue to love our enemies, and we will continue to try to exercise grace and mercy each and every day. It is not up to a President to define how I feel about myself or how my child feels about himself. We will lean in to our faith, and pray that things will work out for the greater good. We can’t give one man so much power and so much authority in our lives. The only man that has that kind of power in my life is Jesus, and I promise you he’s teaching my son the most valuable lessons in life. He loves us so much, and no matter who is president and what happens he will always be here. Today is only temporary. A flicker in our history. We will go on. Jesus will continue to be here when the dust settles.

Psalm 16:8  I know the Lord is always with me.  I will not be shaken, for he is right beside me.

 

 

 

I’m in a season of my life, where things are really exhausting and I don’t get a break. It’s a season that I don’t really know if is an actual season or a lifetime. My son is medically fragile, and he has severe sensory processing disorder. Our lives are very busy, very exhausting and very chaotic. There are a lot of joy, giggles and progress made each and every day. However, there is also a lot of exhaustion and feelings of being completely stuck in a place that I cannot leave. I know part of that is being a parent. When you chose to become a mother, you take on that commitment of being there for a child. Your world becomes helping them navigate the world, feeding them, teaching them, loving them  and ensuring you don’t end up raising a jerk with entitlement issues. I don’t know a lot of mom’s that aren’t tired. Even my friends with typical children often look like they have been hit by a tornado. I wish I felt like I was hit by a tornado, but most days I feel more like I’m in the eye of a category 5 hurricane and it’s never going away.

Listen, I’m not in to being jealous of people, and I really try hard to never feel bad about our circumstances. My kid is amazing. He is so much fun, and I love the person he is becoming. However, I am the tiniest bit jealous of my friends with typical children. I am jealous they can drop their kid off at a friend without a list of instructions 14 pages long. When we are at events, it is hard for me seeing people be able to relax because it’s never an option for me. We can’t take our child anywhere without him having to be constantly monitored and followed. In most cases going places with him is more stressful than just staying at home. Over the course of his life, it’s been really hard to maintain any form of friendship. I’m a lousy friend most of the time. I talk about my son all the time, I can’t really focus on anything outside of his needs, I can’t watch my friends kids, and I rarely have time to listen to their needs. This is not who I am as a person. My entire life I’ve always been happy to help anyone, and I love going the extra mile and never care if I get anything in return. I enjoy serving other people.

I know a break would make this all better. I know even a night or two away from this life would give me the energy to keep going another day. The problem is a night or two away never changes our reality. Even a small amount of respite, while nice, doesn’t cure the long term issue that I am now a caregiver of a medically fragile child. I would say the hardest part in all of it is there is a severe lack of respite for families like ours. We have to have someone that can manage equipment, check vitals, give medications, feed him through a tube, vent him through his G-tube because he cannot burp on his own, and they need to monitor his stamina so he doesn’t run out of breath and collapse.

Over the summer, I thought it would be good to use his time at therapy to go for runs. That was a huge mistake. In the middle of a run, I got a desperate call from his therapist that his lips had turned blue and he was having a hard time breathing. Can you imagine my panic? I was 2 miles away from the clinic. I had no car. I had to run back in the hope that the 15-20 minutes it would take me to get there that he would be ok. I remember running with tears streaming down my face because I was terrified that I was going to be too late.  I finally arrived, I ran my first mile in under 7 minutes, which I had never done before. I believe it took me about 16 minutes total to get there. Nothing will improve your running pace better than panic. When I arrived, he was playing on the floor quietly with his therapist. I could tell he was still in distress. I realized immediately his G-tube needed to be vented. The air pockets in his stomach were going up his esophagus and making it hard for him to breathe.  After that day, I never left his therapy. I just didn’t feel comfortable knowing that his stomach is so volatile that he could need to be vented at a moments notice. Therapists are not trained to manage medical issues. From that point forward, I gave up something I truly loved to keep him safe.

Date nights don’t exist very much either. I know this isn’t an isolated problem just for parents with children that are medically fragile. For some it’s a financial issue, for others they have no support to watch the child, and for others they may work different shifts and it never lines up. For us there is really only a few people we can trust to watch him. Even though they know him, none of them are with him enough to know his queues for distress. Before we even leave, I have to set up everything and imagine every scenario. I have to ensure his feeding pump is ready to go, and lay out all of his medications. We try to leave after he’s had any food so I have time to vent him if needed. Then we have a solid 3-4 hours we can be away without me having a panic attack. I worry excessively when I am away from him. I am sure it’s a combination of my anxiety and PTSD, but it’s part our life. I just can’t relax because there are so many times I have relaxed and the worst has happened with his health.

I hope and pray that as he gets older this will become easier. Unfortunately, over the course of 4 years, his health has only gotten worse so I’m not sure if that will happen. While other mom’s are dreaming about trips away, spending time at a spa, or a girls weekend, my one true fantasy is a day without any worry, a day without any complication, and a day where I can just relax and know my son will be ok. My hope is one day that fantasy will be a reality.

For 4 years, I have been a part of a community I never wanted to be in. I never wanted to be a parent to a child that was medically fragile or had special needs. I realize that in and of itself sounds terrible but it’s the truth. I, like most parents, prayed and hoped for a healthy baby. It was all I cared about during my pregnancy. Then I gave birth to a precious little boy that was incredibly adorable but he was anything but healthy. I found myself thrust into a world of parenting I was not prepared for and a world of endless trauma. I have learned in this community there is no recovery. The only thing you can do day to day is put one foot in front of the other, but the trauma is on going. Every day we as parents in this community are faced with insurmountable stress, sleep deprivation, trauma from diagnosis, health scares, hospitalizations, behaviors, and managing the care of a child that often requires more than 5 children put together.

Trauma and Post Traumatic Stress makes many of us in this community a hot mess of emotions ranging from sheer happiness to great fear mixed with a ton of anxiety and a sprinkle of depression. We lash out when we shouldn’t. We say things we wish we hadn’t, and we behave in ways we wish we could take back. Unfortunately in this ever moving world of fast paced therapy, appointments, medication schedules and school we don’t have time to stop and think. How are we behaving to one another? How are we treating those in the community that are fighting the battle with us? How are we showing our love and gratitude? Some days we simply aren’t – at least I know I am not. I try my best but it doesn’t always work.

Many of us seek support and look for it any place we can find it. Often times the support we crave is not found. Or when we find it, it’s online and words are taken out of context, tone is unreadable, and things said in jest are taken personally. The truth is we are all very isolated, stuck behind a computer, searching for anyone who gets it, and a lot of the time we are horrible to these people. We say the most awful and mean spirited things, we enter in to competitions with other parents on whose child has it worse, and we further dig ourselves in to pity parties. We find ourselves becoming keyboard warriors with strangers we have never met, and we say things we would never say to anyone we actually know.

I will tell you what – I’m done with it. I’m sick of being a part of a sub-community that behaves so atrociously to another. We should be supporting one another instead of ripping each other apart. We should not be fighting about what one child gets vs another, and we should not be comparing our children against one another. I try so hard to focus on the day to day of what I can do for my child. I try to remind myself something very, very simple – and I often repeat it to myself daily – WHAT SOMEONE ELSE DOES FOR THER CHILD DOES NOT DIRECTLY EFFECT ME. Did you read that? Did you see that? It’s pretty simple. If someone is making a choice for their child, I have a choice to form an opinion, offer them my two cents, or I can simply support their choice and know in my heart they are doing their best for their child. I’m done living in a sub-community that is bent on shaming people that we are there to uplift and help. I refuse to be a part of the toxic part of this community.

I know it’s hard to hold it in sometimes. Trust me, there are days I want to scream at others and their choices. But guess what, it’s not my circus, and the kids aren’t my monkeys. My kid is the only one I should be worried about helping, and I shouldn’t be worried about what another child gets or doesn’t get. Conversely, I ask anyone reading this to not worry about the services my child receives, the equipment he needs, or the benefits he gets via the government. I’m navigating this for him, and I’m doing it all to help him. As I assume most of you in this community are doing too. So we have a simple choice to keep our negative opinions to ourselves. We have a CHOICE to be supportive and not tear each other down. I am going to be a part of the solution. I’m done being a part of the problem.

Our community is diverse, and like a knitted blanket made from many rolls of yarn. Every single thread is different from the next, and all of our stories are just a tiny bit different. We can use our words to harm one another or we can use our words to help one another. There are many of us in this community that just want to help each other. If you find yourself feeling the need to yell at that screen, put down your laptop or phone. Please find a way to tuck away your keyboard warrior for a moment, and take a deep breath. Step away, take a walk, and maybe grab a bite to eat. Nothing in life is worth yelling and screaming at someone that simply needs support. We are all tired. All of us are pulled thin because our children need us to be nurses, therapists, doctors, teachers, social workers, advocates and parents. We will never, ever know what is going on in the other persons home. We will only ever know the small amount they choose to share. I’m going to start by assuming the best in all people. Instead of fighting about what I don’t have, or judging another person’s choice for their child, I am going to celebrate their choice and their advocacy! We are all in this together. We can all strong in unity and advocacy! Let’s stop shaming one another and start praising one another!

Dear Parents,

It is the dreaded time of season where snot flows from our children’s noses, cheeks are red and flush, coughs are at times dry and other times moist and productive, and fevers are spiking left and right. Flu and cold season happens every single year. Each year it is a struggle for all of us to keep our children well, but I need to make a plea to you this year. If you have an otherwise healthy child that is ill, please keep your child at home for at least 24 hours after their symptoms have passed. I want to share with you a few things about why it is so important for the community of medically fragile parents that you help us keep our children healthy and alive

1. Your Child’s wet and productive cough – could mean a ventilator for another child  

It’s hard to know when a cough is just a cough, or if it is going to turn in to bronchitis, pneumonia, RSV, or even Pertussis. Coughs and respiratory infections are hard on any child. Children have small airways and lungs that are not as efficient as adults. It is harder for them to clear the congestion than an adult. However, for a child with Cystic Fibrosis, congenital heart defect, low muscle tone, asthma, reactive airway disease, or chronic lung disease, this cough could have them in the hospital for a lengthy stay. My own son spent 17 days in the PICU at 3 months old because he was exposed to a cold. He spent 6 of those days on life support and almost died. Most recently, I have witnessed several friends have their infants hospitalized for weeks at a time because of RSV. RSV can kill any infant, but it is even more serious if your child is medically fragile. In fact when my son was in the PICU in 2013, our next door neighbor on the floor passed away from RSV. Please take your child to their pediatrician to ensure that what they have is nothing that could seriously harm them or any one else that they expose.

2. Your Child’s low grade fever could be sign of a bacterial infection or contagious virus

There are so many reasons that kids get fevers, and fevers can range from anything        above 98.6 to spiking up to 104 degrees. Anytime the body has an elevated temperature it is likely fighting a virus or a bacterial infection. Many schools will even allow you to send your child to school if the fever is below 101 degrees. However, a fever of 100 could be a sign of Strep throat which is a bacterial infections. According to Health Grades Website, a low grade fever in a child can also be a symptom of chickenpox, fifths disease, measles, mumps, whooping cough, ear infections or a sinus infection. Your child may not have a fever high enough to stay home from school, but they could most certainly be spreading something very serious to other children. My son was 15 months and in-between shots for Pertussis. He has received 2 of the 3 total to be vaccinated. At the time we were behind in his shots, as many medically fragile children are, because he had been too unwell for most vaccinations as a baby. He was exposed to Pertussis. Thankfully we caught it very quickly, and I made a call to his pediatrician immediately. However, he was still so sick for over 2 weeks and vomited nearly every time he coughed. The infection ripped up his lungs so badly that we spent the next 2 years doing daily nebulizer treatment to help repair the inflamed and scarred tissue. His lungs just were not able to recover the way a healthy child’s lungs would.

3. Your Child’s Stomach Bug could kill a medically fragile Child

Most children that are medically fragile are dependent on medication to work in order for their diseases to remain in check. My son takes cortisol to manage his Adrenal Insufficiency, but there are other diseases where children rely on their bodies ability to absorb medication. A stomach bug of vomiting or nausea, could send a child like mine in to the ER. Last year we were admitted for a couple days of IV treatment to help him settle his stomach. This past fall we had to go in overnight for zofran and an IV to help him metabolize his medication. We have been very lucky that nothing has happened worse than this for our son. Most recently a 6 year old child in the Adrenal Insufficiency community lost his life to a stomach bug. We rely on our friends and family to be diligent in not exposing our children to these bugs, and we ask you that you exercise caution when sending your child to school. According to Parents Magazine your child is contagious until they are no longer vomiting and if they had diarrhea until their stool appears fully formed. I know this can be really stressful because these can linger, but sending your child anywhere while contagious could put others lives at risk.

I know it’s so hard to schedule time off work, and I get that things have to get back to normal. Trust me, I was a full time working mom at one point too. I also know that life is very precious, and it’s our responsibility as parents to not only keep our own children well but to protect other people’s children from illness too. School work can be caught up on, play dates can wait, missing a week of church won’t put you in God’s bad grace, and your errands can wait. This is truly a public service plea that you help those of us that depend on you to help us keep our children alive. We need you to be on our team! We want our kids to grow up to be big and to eventually reach adulthood. None of us want to lose a child to something that could have been prevented. I know it’s hard, but please just try to put yourself in our shoes. Most of us are just trying to hang on for another day with our kids, and we would appreciate it if you could help us reach that goal.

 

Sincerely,

A Momma of a Medically Fragile Child