Without a Crystal Ball

Our Journey through Chronic Illness

THe Chronic Fatigue of a CHRONICALLY Ill

Before I had my son, Von, I always lead a very active life. I was an athlete that played multiple sports in high school, coached tennis during college, ran in 5ks and competed in a triathlon in my early 30s. I’ve never known what it is like to really be tired. At my last employer, I met a friend, who is still friends with me today and she introduced me to something called the spoon theory. We had become close friends, but she was chronically ill. I didn’t understand why she was tired all the time, broke plans, and was unable to keep commitments. Then one day she told me about how each day she only has so many spoons. She is forced to conserve her energy in order to get through the day, and that often means she can’t make it to events, leaves early, or pays the price of going for days afterward. Initially it was hard for me to understand. It was a constant sore spot in our friendship – because I wanted to be with her – but she just couldn’t make it work. We would have arguments, and I would try so hard to be understanding. However, you never really understand it until you live the life.

When I look back, I feel like God must have been preparing me for motherhood. He must have known that I needed to have experience with people who are chronically ill. He must have known that I needed her in my life. Now my child is the one that is holding the spoons, and my life is dictated around how he is feeling on a day to day basis. In the beginning I was truly naive about caring for a child with chronic illness. Naively, I assumed that because he was given his medication then he would be better. I assumed that he would have the same zest for life that I have always had, and I assumed that our lives wouldn’t be that much different than most families raising a child. Over the past few years, those feelings and thoughts have drastically changed. Our lives are dictated by how many spoons he carries each day. Every single day is different. Unfortunately, we make and break plans a lot. I am now the friend that people get frustrated with because we miss out on so many events. We are the family that is isolated at home – or we are out doing low stimulation events that don’t overwhelm our son.

We’ve talked extensively to his doctors about the fatigue our son experiences. All they can say is that every single disease he has – will make him tired. They have said medication can produce side effects that cause fatigue. Initially I was concerned how tired he always seemed to be. I just wanted him to be like me. Then I realized that he CAN’T be like me. I have a heart that is working properly, I have the proper hormones in my body, and I have a body that communicates effectively with my brain. He won’t ever be like me, and our lives will not be the same way I experienced childhood. This isn’t just hard on friends and family – but it is hard on my husband and me. We most certainly wanted to explore the world the way we have energy to do so. Instead, we have altered our lives to suit what he can do, and that is the best we can do as his parents. When he’s feeling well, we do the things we know that will make him the happiest. We go to the zoo, take him to fairs or carnivals, go to parks, and pack as much fun as we can in to the day.

The bad days are the ones we just don’t really talk about because we have more bad days than good. On the bad days, playing with toys makes him lose his breath, he has trouble walking up and down stairs, he asks to be carried around the house, and he asks us to “just stay home.” Playing with cars, walking from room to room, and climbing up to the couch can make him exhausted. He literally will fight tooth and nail to simply try to play. I watch him rest his head on the floor and lay and push cars next to him. When he has therapy, his therapists will note that he just loses his momentum and slows down. Often times therapy can be cut short, or they spend their time on low stimulation activities. Eating and chewing for him on these days is really hard, and we often don’t force him to even try. As a parent, there is nothing more heart breaking than watching your child want to do something so badly – but not have the energy to do it. When he is around other children, he just can’t keep up. He will try to run and play with the same intensity and I will look over and see him gasping for air or resting his head against a wall. The days he’s not feeling good – are the toughest for him and the toughest for us to watch. We get knots in our stomachs and our hearts break because we know how badly he just wants to be a kid.

I think the big question for many people that are supporting someone with a chronic illness is – HOW CAN I HELP YOU CONSERVE YOUR SPOONS. The truth is there isn’t anything you can do to help the person feel better physically. However, you can help them by making their life easier. Instead of inviting them out to your house, a restaurant or an event, make the time to visit them at their home. It’s often easiest to be home when you aren’t feeling well. Try to be flexible with people that are managing chronic illness. If you try to rely on them in the same way you would a healthy person, you will always be disappointed. It isn’t that they don’t want to be there – it is that they CAN’T be there. Do things to make their lives easier. Bring them a meal, offer to help clean their home, run a few errands for them, or bring them their favorite movie on DVD to watch at home. It’s not as easy to be friends with a chronically ill person – but I promise you the rewards of the friendship, and the devotion you will receive from appreciation is WORTH IT.

 

Prognosis Unknown

We live in a gray area of unknown prognosis. It’s a troubling place to live for my husband and me. When you don’t know what is going to happen to your child’s health, it’s hard to make plans for the future. It is hard to know what is going to happen at any given moment, and it’s impossible to know what might pop up on a medical test or image. Often it means we are given more diagnosis and more questions than answers. While we try to find a way to live with it – it’s harder for our friends and family to really comprehend.

Prognosis unknown – means exactly how it sounds. It means there is no primary diagnosis known as to why the conditions and symptoms are happening. It means there is no idea what could come up along the way, and it means there is no model of other patients in what they have experienced. For us it means we are the first for many doctors. His doctors call him a “case of a career” or a “medical zebra”. He’s the kind of patient many residents dream about because they are the first to manage the care of the child. The doctors can also be the first to make discoveries on how to potentially help other patients in the future. It means there is no blue print for treatment. It also means that often times you leave appointments feeling more confused than when you arrived. There are appointments you dread because you know the image will absolutely uncover another issue in your child’s body, and there will be no known reason for why it happened.

We have so many questions about his body, and probably as many as the questions of our friends. Why did his heart start going bad? Why is his brain developing incorrectly? Why is his motor processing causing him delays in all areas? How could one child have so many secondary diagnosis but no primary diagnosis? Why was it that he was able to do something for a period and then the skill was lost? It’s hard to know any of it. Truthfully, I can’t answer any of the questions because I don’t even know. I don’t know if he will be able to swallow, chew, use his tongue correctly, if he will ever burp on his own, if his heart valves will get worse, if his brain will stop growing incorrectly, if his ventricles will eventually start leaking, and I definitely don’t know if his life expectancy is normal.

Life expectancy is probably the hardest for people to wrap their heads around. It is hard for my husband and I to comprehend as well. The answer is – We don’t know. The prognosis is unknown. That means he could live a long time or his life could be cut short. We know he has a heart that needs multiple surgeries and two other life threatening conditions. Any of the three illnesses could prevent him from going to adulthood. Doctors have told us they don’t even know. We all just have HOPE. We hope that he will beat the odds. We hope that treatment will improve to manage the diseases he has, he hope he continues to respond to treatment, we hope that there are cures for some of the diseases, we hope the treatments given do not do damage to his body, we hope that treatment doesn’t diminish his quality life, we hope the choices we make to treat him are the right choices, and we pray that one day doctors will know a prognosis for our son.

What does it mean for us to live in a world where there is no prognosis? It means we live day to day. Planning for college isn’t a factor in our home. It’s not even on the radar. We use our resources and energy to improve every single day for our child. We work diligently with doctors, nurses and therapists to ensure that he gets all the resources he needs to thrive. It means I wake up every day fighting a battle that I hate fighting, but I will never give up. The beauty is that I get to see life in a way many parents don’t see it. I don’t take for granted birthdays, holidays, or passing seasons. Every single year that passes and he is still here – we have won. Every day I love him like crazy, tell him I love him a million times, and I spend my hours making him smile and laugh. He gets to do amazingly fun things that many well children don’t get to experience. We have non-profits that are dedicated to brightening his day. He gets gifts from all over the world from people that have been touched by his story. In many ways – even though his prognosis is unknown – life is beautiful.

Our unknown prognosis has given us a platform to teach others about the conditions he faces. We are able to meet people from all over the world, have amazing specialists treat him, and are interviewed by publications and research organizations. It’s not a life we envisioned, but we make the best of it. The best thing I can tell anyone that is in this world is to take it a day at a time. Don’t get caught up in what tomorrow will bring. Don’t get swallowed by the fear of the unknown. Nothing in life is known. Any of us can leave the planet at any time. Embrace the “prognosis unknown” and live life to the fullest. If you are a friend of family member of someone dealing with this prognosis, be gentle and kind. Try not to bombard the families with questions. Most questions will go unanswered. Try to just love and accept it for what it is – PROGNOSIS UNKNOWN.

 

 

Letting Go of Expectations

Parenting is hard work. It’s a job that is messy, dirty, fun, exhausting, and amazing. It is truly hard to identify all the amazing emotions most of us experience as parents.  When our children come in to the world, it feels as though nothing could ever be impossible for them. Life starts to take off and we begin to expect things from our children. It isn’t even big things we expect. Most parents expect that their infant will raise their head, roll over, start to crawl, babble, walk, talk, and explore the world. My expectations were no different going in to parenting. Each visit to the doctor I got the sheets that told me “What to Expect” at the present age my son was at. Most appointments I would scan the sheet and my heart would sink because he wasn’t doing most of the items on the list. My son was born with a part of his brain missing – the pituitary gland – and it had caused a very significant illness at 3 months old. The crisis was so dire it has impacted his life ever since. Nothing has developed normally since, and there are no charts or graphs that match his capabilities.

In the early days it was really hard. I would find myself online researching every single ailment that could be impacting my son. Doctors felt stumped because his delays were not consistent with a brain injury, but he did have global motor processing delays. It effected every single aspect of his development. He was late to hold his head up, crawl, walk, talk, jump, run, and it’s made him unable to effectively eat. Motor processing is everything you do with your limbs and body. It could be as simple as burping, and my son cannot burp. It is truly amazing what we take for granted as humans. We put our feet on the floor and expect them to move, but people with motor processing delays every single movement is a challenge. Their brains have to be trained and retrained to do most every single motor skill. This has been the case with my son. He still hasn’t mastered the ability to burp, he still can’t effectively use his tongue or chew, and he has trouble swallowing anything thick.  All of these are motor processing delays, and all of this has changed my expectations about parenting.

Initially, doctors hoped it would be a bump in the road. They hoped he would just catch up developmentally and become like most children. The therapy goals in the beginning were for catch up – with very little objective on actually helping him learn and retrain his brain. We spent over a year in therapy and nothing worked. He wasn’t talking, could barely eat, and his locomotive movement was over 18 months behind. We entered private therapy, and it was there we got slapped with a very harsh reality by seasoned professionals. He wasn’t going to grow out of this, therapy wasn’t going to be about catching up, and he would have to work really hard for years. Therapy is on-going because any time off from therapy causes regression in nearly every area. His speech has exploded, but it’s hardly intelligible to strangers. He works hard in physical and occupational therapy to work on mastering skills like walking up and down stairs, dressing himself, putting on his shoes, and brushing his teeth. He still needs a lot of assistance in most of those areas, and the coordination it takes to do these skills is really hard for him.

The therapists were very clear with me this past spring. We had our 1 year anniversary in private therapy, and he has made a ton of progress. However, they reminded me that everything he does is so much harder for him. He can’t do most things spontaneously, and these issues are not going to go away. The truth was pretty heartbreaking to me. I had to finally accept that no amount of therapy was going to “fix” him. Expectations are hard to change because they are so ingrained within us. Most of us don’t even have to think about our kid meeting milestones. Most parents don’t have to worry about feeding issues in an almost 4 year old. I had to change all of my expectations.

As soon as my expectations changed about what society wanted him to be, what books wanted him to be, and what doctors hoped he would be, I was able to have a lot more freedom as a mother. I put my foot down with doctors and therapists about feeding. Feeding therapy was going no where. Doctors were resistant to a feeding tube because they didn’t want him to regress. I assured all of them that regression was the least of our worries if he wasn’t growing. We had a feeding tube placed. It was a hard choice. However, following my gut was the best choice. He’s growing, learning and more alert than he was when we were fighting to feed him. I have let go of the expectation that he should eat. Eating is really hard for him, and if I as his parent can alleviate that difficulty, I am going to help him.

When we go out with him, I don’t have the same freedom as many parents. My husband or I have to be with him at all times. He chokes and often loses his breath from his inability to burp. We have to be there to help alleviate that by venting him via his tube. Again, I have let go of my expectation that he will burp on his own. The freedom of letting go has been tremendous for me. I realize over time there will be more and more I need to let go of in his development. I know he is smart, but it’s very clear to me school is going to be very hard for him. I am not going to expect him to be an honor roll student. I’m just going to expect him to learn and try every day. The freedom of letting go of my expectations has given him freedom to be himself. He is uniquely a little boy that is happy, silly, and full of love. His brain may be wired differently, but he will exceed all of my expectations because I have none. I am giving him the freedom to dictate what he can do, and anything he accomplishes I will cheer on.

My hope is that more parents – even those of children that are neuro-typical – can use my experience to let go of their own expectations. No matter what we do as parents we cannot force our children in to a box of what we want them to be. They are the ones that control their own destiny. We as parents just need to be their cheerleaders and provide them the tools and opportunities to be successful. Success doesn’t have to be what you want it to be – it will be what they want it to be. In that there is much freedom.Quote for Blog

Special Needs parenting2

It’s the world of ever present change. Nothing ever seems to stay the same in any aspect of life anymore. We live in a fast paced world with social media dictating our thoughts and emotions. Most of us want more and more, and can’t stop ourselves from comparing ourselves to whatever is going on around us. Oddly, this part of life has been easier for me to manage than the constant change I deal with at home managing my son’s multitude of diagnosis and disease. Nothing ever seems to stay the same with his needs, and I am sure this is not uncommon in parenting, but this is different. This is medical equipment that changes, medications that change, therapy that changes, health conditions that deteriorate, and my inability to properly manage that change.

This isn’t like normal parenting. Most parents don’t have to worry about their children missing a dose of medication. Most parents don’t have to navigate a health care system that isn’t set up for children with medical needs. Most parents don’t have to fight for every little thing because the world isn’t built for children with special needs. I left a full time job to manage his care, and I have taken on a full time job that is never ending. The mountains of paperwork to manage his care is daunting. Insurance forms, school forms, therapy forms, forms for payroll companies, appeal forms for services needed but denied by insurance, medical forms for doctors, and county forms that are never ending and still haven’t entered the year 2016. Some how in the world of the digital age – none of the forms that are needed seem to be available electronically. I’m pretty convinced that parents of children with special needs are single handedly keeping the post office open.

Every time I seem to get comfortable in the situation we are facing, something within his health changes. Most recently it was the need to intervene and place a feeding tube. We had gotten use to our routine of feeding him, and then we had to learn a new system to get him nutrition. We added more equipment to our home. IV poles, pumps, formula, gravity bags, pump bags, syringes, tubing, and farrell bags. I knew nothing about any of these before this change, and was given little direction about what to do with these items. I’ve had to learn most of it on my own or through online support groups. Doctors and hospitals do the procedures, send us home and most often we are thrown in to a pack of wolves. Then the next few months of that change I am holed up at home navigating it and making sure that my son isn’t in pain or that whatever we are facing we can get through the day.

The hardest part of all of it is that every time something changes all of the relationships I have start to suffer. There have been a few times in this journey I was able to stop long enough and enjoy adulthood. I was able to have friends again. As soon as I get comfortable in a new normal – it changes – and all of my relationships suffer. I am no longer fun loving. I can’t commit to doing anything for more than a few hours, and we often have to cancel plans due to his health being very unpredictable. We spend a lot of time indoors, and not socializing because he does best in his own environment where all of his needs are met. Going out is so hard when you  have a small cargo of medical equipment and medication to just leave the house. It’s hard to get people to come to us all the time. We constantly feel like we are one sided in our friendships with people. We can’t give as much as we want, and it makes things really hard. Often it makes us just push people away. It makes no sense. But you can’t disappoint people when there is no one to let down.

The isolation of change is the hardest and most debilitating part of this entire process. There is no one else in our world going through what we are going through. We don’t know anyone else with my son’s diagnosis because it’s so rare. It’s difficult for us to relate to parents with healthy children because we aren’t living that life. When life is constantly throwing us curve balls, it’s hard for us to be upbeat and easy going. Our tempers are short and sometimes our PTSD and anger get the best of us. I don’t know a single parent in this community that doesn’t suffer from PTSD and anxiety. Both of these make relationships with others outside the community really difficult. I know it’s made people shy from me. I know my words and temper have hurt friendships. I know I have pushed people away. I know the constant change and uncertainty has created a world of isolation.

My only hope is that over time the constant change slows down. Or that my ability to manage it will improve. I hope that I find resources to help me deal with the isolation and frustration I feel on a daily basis. It’s a sad reality for many of us in this community that in a room of a dozen people, we could still feel so alone. I keep on pushing, and I don’t fight the change anymore. We don’t have any other choice but to put one foot in front of another. Even though it’s a difficult road, we have to keep moving. Despite our loneliness there is no other place we would rather be. We are parents of children with special needs, and it’s the most important job we have.

 

Essential Oils

“I heard that there is an oil that can help Adrenal Fatigue,” A kind stranger said to me.

“My son doesn’t have adrenal fatigue. He has adrenal insufficiency,” I responded.

“Have you looked at an essential oil to help him? Maybe you could get him off all his medications?,” She asked me.

“If I take my son off his medications, he will die.”

I stopped responding.

I wish this conversation was a one time event. I promise you that I have heard it over and over again in this world of Multi-Level Marketing businesses. It seems that everyone on Facebook is selling a product that could potentially HELP my child. More than a few times I have had products offered to me to help with his blood sugar, weight gain, heart health, and adrenal insufficiency. Every time I kindly say no.

I’m not a hater of essential oils. We diffuse them in our home. We use soaps that are made with these oils. The skin care line I use, is hand made by a friend, and it’s laced with these amazingly scented oils. They smell good. Sometimes when I burn them, they calm and relax me. In the shower, they calm my sinuses and make breathing easier. My skin is no longer filled with acne because of many of these oils. But I have to tell you something – ESSENTIAL OILS WON’T CURE MY SON.

We eat healthy in this home. We try to eat organic when we can, buy our eggs farm fresh from a friend, and try to eat meat that is organic. We do our best to take care of our health by hiking, running and being active. Healthy living has always been very important to us. I’m all in to trying items that might alleviate some pain, stress, or make me feel better. However, ESSENTIAL OILS WON’T CURE MY SON.

There isn’t any nice way of going around this. I see so many people selling these oils, and they promise you that everything can be cured via a dab of this or a rub of that. It’s not true. No amount of oil is going to grow back a missing gland in my son’s brain. Offering me an oil to help his missing hormones is not only uneducated but life threatening. I wish I were the only person in this community that has been offered this as an option. However, I hear it over and over from other parents that are dealing with life threatening diseases. People want to help us get off the medication. They want us to think outside of the box. I understand that the thought of living on medication for some is hard to bare, but for our son it’s life or death. I wish we didn’t have to have him on medications. I WISH it was that simple that an oil could fix his brain, make his hormones work, and mend his broken heart. Yet, this is beyond what an oil can do.

For years, I have sat here and bitten my tongue. I have been kind and nice to every person that has offered this advice. Inside the anger has eaten me alive. I can tell you with certainty most parents in this community would rather not have to give their child medication to live. Most of us would rather not have a bag, a feeding tube, a port, a shunt, a pacemaker, or a catheter. Yet for many of us, it is the only option to keep our child alive and growing. While natural interventions can certainly improve the quality of life via scent and helping calm stress, it will never be able to replace the medical interventions necessary to keep our children alive.

Our lives would be a lot easier if an oil could cure my child. We would save a ton of money on medications and medical equipment. We would probably not need to have so many doctors, and thus we would save even more money. The truth is, that sometimes we are forced to do things we don’t want to do as parents. I didn’t want to be a parent that gave my child medication daily, injections daily, and feed him via a tube daily – but I have become that MOM. It’s not fun to see him struggle with shots or medications. Nor do I enjoy spilling his feeding tube contents all over my bed. It is just a part of our life. Sometimes life throws you curve balls and you have to adapt. I wanted to be the natural mom that didn’t have him drink juice, watch tv, or even eat sugar. Now I’m excited when he wants to eat a piece of chocolate.

I love that people want to help me by offering us oils. I will purchase them to diffuse in my home. However, they will not CURE my son. They will not improve his blood sugar, and they will not make his body function like a typical body. I’m not writing this to shame anyone that offers oil, but rather to educate them. Essential Oils have a great place in the world. They do amazing things, but if you sell them, please don’t promise a parent it will cure their child. Please don’t tell them it will improve their disease. Please don’t recommend that their child get off medication. Offer the oil as an enhancement to treatment – not as a cure for disease.

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We are a sisterhood that we never imagined being a part of and never wanted to be in. Yet, we are a sisterhood united in caring for our children and helping them meet their highest potential. Most of us are stuck at home, unable to hang out due to the demands of our children’s needs. Our relationships are forged in online support groups, through non-profit organizations, and via online blogs and articles. We stand united that our kids deserve the best resources, services and care. Yet, many of us are stuck in a broken system where insurance dictates what our children will receive. We hope for the best but don’t know what the future holds in a world that wasn’t built for our kids.

When we are struggling, we try our best to lift one another up, offer suggestions, resources and tips for what has worked for us. There is no handbook or parenting book about raising a child that is medically fragile. Most of our children don’t fit a mold. All are uniquely their own, and many have multiple diseases or disorders that are so rare most doctors have never seen. When no one hears our child, we are their advocates. We yell, scream and fight for everything we know they deserve. Early on we realize, with a heavy heart, that the world we live in isn’t built for our children. Each and every day we are fighting someone about some aspect of their care. It could be a doctor, a nurse, a therapist, an educator, or an insurance company. Every day we fight and launch battles for what we know our children need to thrive, and sometimes our fight ends in defeat. We cry in our bedrooms at night. In the dead of night, many of us lie awake paralyzed by the fear of the unknown. All we want is to make our children not have to fight so hard to simply be.

Sometimes we pass one another as we rush from appointment to appointment. We chat in the waiting room of therapy, and discuss the newest techniques, education or options to help our kids. We see one another in the hospital and clinic waiting rooms, and sometimes chat about our child’s diagnosis. But all we really think is when we see each other are “these are my people.” We are the group that GET IT, and we live in a  world that doesn’t seem to understand it. Why would anyone have to GET this world if they didn’t live it. These sacred moments become warm spots in our hearts because we know there is someone else out there living what we live each and every day.

When new mom’s enter our world, most of us stand united in trying to offer support in any way we can. We know this world will chew you up if you don’t have a good guide along the journey. Mom’s with older children mentor those of us that are new. We learn from them, and learn what has worked and hasn’t worked for them. When we see another mom struggling with choices, we offer our experience about how this has improved our child’s life. Most of us have been through dangerous surgeries, expensive testing and have enough medical equipment in our homes to open a small hospital. It is a community that simply wants the best for our children and above all else – we want our children to live.

Every day most of us are fighting a battle against a disease that we will never beat. Most of us know the very real implications of what can happen to our children at any given time. We know that nothing in our world is to be taken for granted. Birthdays for our children aren’t a given so each and every year it is a CELEBRATION. Every year that passes and our child has survived, we have won a small battle.  In this very fragile world we live in, we have been able to see the true meaning of love. Many of our children have been on the brink of death and come back, and we know that no matter what love is the only thing that can keep us going. We know that our love is what keeps us going on the days that feel impossible. Love is what will keep us moving on the days where the news at appointments is less than positive. We never never give up on our children, and we will never stop fighting for their well being.

We are a sisterhood that has come together by accident. Our children are what unite us, but the beauty of this community is that we have seen life in a way most people will never experience. Our ability to help one another, help our children and sometimes try to help ourselves is a testament to how strong we truly are. Most of us don’t feel strong. In fact, many of us feel we are coming apart at the seams. However, we unite together when one is struggling. We lift each other up and remind one another it is OK to cry, feel defeated and be sad. Yet, we also remind each other we have to KEEP GOING. No matter how hard our journey is – we have each other. Our path is full of debris and obstacles most parents will never experience, but we navigate it with grace and courage. We stand together as we move through our journey.

This would be impossible to do alone. While we may not get to spend time together, have play dates, and most of our relationships exist online – we are the village of Mother’s with Medically Fragile Children. It’s the best Village and world I’ve ever been in. I hate being here, but I don’t want to be anywhere else.

Fitbit

1…2…3….4….4….4…4…4..4..4

Shakes my arm, why is this thing getting stuck. I just went on a walk and it says I took no steps. Why did it get stuck? I slap it, I hit it, I take it off and then I put it back on.

5, 6, 7….

Grr. Those steps aren’t THERE! Fitbit, I’m breaking up with you.

It’s not me – it’s YOU! I can’t continue to be a slave to this tiny little contraption that sits on my arm. It dictates and takes over every aspect of my life. I understand Fitbit you care about my health. You want me to hit my 10,000 steps, burn my 2184 calories, and reach my 5 miles. The problem with you, is that you are fundamentally flawed in so many ways. Please tell me first, why is it that you are worn on my wrist – when I step with my feet? How is it with no actually heart monitor or statistical information about my body you know how many calories I will burn? Why is it if I don’t swing my arm you don’t count my steps? When I just took that walk, I pushed my son in a stroller up hill after hill. You said I had no steps. Now I sit here feeling like an utter failure. But you are a mind fuck, Fitbit. I know I just got my butt kicked – literally – and now you have emotionally abused me by telling me none of my steps actually count. Don’t you see how utterly awful that is?!

Oh and don’t forget fitbit, that when I go to the Grocery store or run any sort of errands with my child, I can’t even consider using 2 hands to push a cart. I have to walk around feeling incredibly awkward and push a super heavy at COSTCO with one hand – just so you will count my damn steps. Do you see what you are doing to me? You have turned a logical person illogical. You are making my every day tasks harder just to count my damn steps. Steps I am taking either way – but because you sit on my WRIST – I must swing my arm.

Also Mr. Fitbit, you do realize that steps are just one aspect of daily health. Yet, your constant flashing, reminding and poking me to move – simply have me walking. You do not care if I actually get cardio, raise my heart beat or push myself physically. All you do is want me to move. Moving isn’t going to get me great muscle tone. But forget it if I want to actually lift weights and get some actual exercise – you won’t count it because I’ll be stationary. So while I’m doing my best to actually be more fit – I still feel like I’m a failure because my steps aren’t where YOU need them to be.

I had a trainer tell me once – if walking made everyone fit – more people would be FIT. Walking doesn’t increase lean muscle tone, it doesn’t promote high levels of calorie burning, and it doesn’t increase your heart rate. It just means you are moving. Now I don’t discount you Fitbit. I know you mean well. But you have this whole country on a walking craze when we have forgotten that fitness is a combination of cardio, strength training and diet combined. It’s like you have us all brainwashed to think we need to make all these steps and magically our health will improve. I need to tell you Fitbit. I actually haven’t lost weight because of you and I haven’t become more fit. I have actually become more fatigued, and I have turned in a person that walks laps in my living room so I hit my step goal. Sometimes I even pace up and down my stairs – so I can get the flights you want me to hit.

Now let’s talk about your badges and challenges. First off, they just don’t mean a thing. Because well they aren’t tangible. If you are going to award me, please mail me the damn ribbon. I don’t need a list of virtual “badges” or “trophies” I’ve earned for whatever challenges or accomplishments I’ve made. All it reminds me is that I’ve wasted a lot of time in my life pacing my living room or taking needless walks – that I could have used to clean out my closet, organize my pantry, or write the novel I still haven’t started.

See Fitbit for the past year I’ve had you – you have stolen my time, my energy and my sanity. Listen I know you mean well, but it just isn’t working anymore. I want my life back. I don’t want to feel tied to a machine to tell me that I’m healthy. I think I’ll lean on my doctor, my diet, and myself to get out and move. Because it’s a lot more fun to move when you aren’t a slave to a device. I really wish you the best Fitbit. I hear you have made improvements and maybe one day you will work more efficiently. However, I’m going to go back to using both hands to push my carts, push my strollers and push the lawn mower. I’m not going to worry if I’ve “stepped” enough – when I’m chasing around my 3 year old. I’m going to spend my time being ok – ok like I was before I met you. See that’s the biggest issue in all of this, Fitbit. I was always an active person. I was always happy and wanted to go out and do activities. Now you make it a chore. I am going back to being the person that WANTS to be active and not forced to be active.

Fitbit, I’m sure you are good for some people – but it’s not me – it’s you. You aren’t working for me. I’m going to tossing you. I wish you the best in the future. I know I’ll be better off without you!

 

 

Today I woke up feeling sad. The community I grew up in is under a fire storm of media, speculation and anger. We know very few details yet about a police officer shooting which involved a young 32 year old man. There was a Live stream video that went viral, and every one’s imagination went wild about what happened. We only saw the moments after he was shot multiple times by the officer. We did not witness what occurred before. My news feed has blown up of people fighting about what happened and has divided between pro-black lives matter and pro-cops. I sit here on the fence supporting both.

I’m a mother of a young boy. He will be 4 in October. The shooting I am discussing had a child that was 4 years old in the back seat. In all of this discussion about the victim and the officer, I sit here worried about a 4 year old that has now witnessed a violent death. A child that will likely grow up in a world and witness violence in their community. This child will be scarred, and likely suffer nightmares, fear, anxiety and terror. In all of the this I think of my own son. My son would be petrified and terrified in a situation where he watched his daddy be shot and killed. I have no idea how he would ever recover. People say children that age don’t have long memories, but I disagree. My son is still telling me about events that took place months ago. They remember and those memories get firmly marked in their brains. They develop neurological responses to those memories, and it creates a pattern of how they will respond to the world as they grow.

As a mother of a child that is disabled, I live in a world of inequality. I understand the obstacles that he faces and that we face as a family. We fight for inclusion, understanding and for the main stream to accept our position in the world. While I don’t understand what it’s like to be a person with skin other than white, I know what it feels like to be marginalized because of my son. I know how society has a way of marking everything in to boxes. Things are either good or bad, right or wrong, normal or abnormal, able bodied or disabled, and  neuro-typical or neuro-diverse. I know that the path we are on as a society is so flawed, so broken that every single sub-culture on the outside of what we deem “typical” suffers.

Our media only fuels the fire by spouting to us half truths, false ideals and selling a story line that may or may not be true. We are consumers of these stories. In 2016, we live in a fast pace news world, and we often don’t even know the facts before we make our judgments. Many times we can look back and realize what we assumed was wrong. We no longer take the time to assess the situation, learn all the facts, and then determine how we feel about things. We react to what we see. We see half of the issue, and assume we know it all. What we are doing is creating a dangerous environment of public assumption and speculation. I’m guilty of it too. I read these stories and assume I know it all. However, I often look back and reflect, and I realize I need to stop and really wait for things to unfold before I form any opinions.

Please don’t think I’m discounting what happened last week. In fact, of any person I am trying my best to understand. I grew up in the town where the officers serve. My hometown has been all of the national news. If you knew the people in this town, you would know it’s a lot more than what the news is saying. It is a small inner ring suburb of Minneapolis. It has a small population which makes you feel like you are in a small town even though it borders Northeast Minneapolis. The schools in the city are the best in the state. In fact the High School is consistently ranked in the top of the state every year. As I an alumni of that High School I have always been so proud of that fact. It is a small town but doesn’t lack diversity. In fact my parents live next door to immigrants from Tibet. There are people from all walks of life, from every economic back ground, and from many different cultures. It is a safe community, and there is rarely ever violence. As a child, I admired and respected the police force. In a town this size, you get to know the cops of the community. They are involved and invested. They speak at events at the high school, many are there to keep athletic and community events safe. Our town isn’t full of cops that are racist.

What I know is that we know so little yet about what happened, but we are all quickly forming opinions and assumptions. I do know that racial inequality exists, I do know that gun violence is out of control in our country, and I know that children are witnessing violence by guns more than we would like to admit. We are creating a culture where we convict people in the media before an investigation can even be done. I’m also watching people accuse the victim of not being a good guy. I see his driving record all over Facebook as if traffic violations are a reason to be killed. We need to stop assuming. We need to stop jumping to conclusions. As a society and a community we need to come together. All people, all cultures, skin colors, economic back grounds and abilities need to have a stake in this change. We cannot change by yelling at one another behind our screens. We will not change by sitting passively. We need laws to change what is currently going on with guns, we need better training for police officers and training about profiling, we need better programs to help those living in poverty actually get out of poverty, and we need to stop looking at each other’s skin colors and simply look at each other as humans.

As a mom to a child that will face inequality for his entire life, the one thing I am going to give him is a humanist perspective. I am going to teach him to love and respect all humans regardless of their position in society. We have lost track of the fact that we are all humans. We aren’t a skin color, social status, economic status or ability status. We are humans. We are all born and we will all die. Everything in between is up to us determine how it will go. I refuse to have the dashes between my birth date and death date be wasted. Will you waste yours? Be the change you want to see! Get involved in your community. Take action and contact your politicians about the laws you want to see. Contact your police forces and get to know who is serving you. Be a part of the solution!

 

 

 

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When we started the journey in this world of medically fragile, I had on rose colored glasses. There were days that no matter what was thrown at me, I felt like I could take on the world. Now we are over 3.5 years in to this journey, and I have care taker fatigue. The emotional toll it is taken on me can be seen in the wrinkles on my face, the gray hairs that have popped up on my head, and the bags under my eyes. Friends and family want to offer advice and make it better. But sometimes in the attempt to make things better, it actually just makes my heart break a bit more. It creates more isolation and divide between the world and my family. It’s well intentioned, but it doesn’t always help.

People say, “Take care of you,”

“Do something for yourself each month”.

“Have a spa day or massage every month”

When do I find the time? Between appointments, therapy, calling insurance providers, dealing with the state for benefits and insurance, managing his pharmacy needs, and then treating the day to day needs of the disease – when do I have time for a massage each month or a spa day? Where do I even find the money for luxuries like these? When I left my job, I let go of more than 60% of our income. I’m not complaining because it was needed for our family. However, there isn’t money to do the things we once did, and things like a massage once a month are a luxury I cannot afford.  I am his eyes, ears, his interpreter, his advocate, his nutritionist, doctor, nurse and mommy. I want to take care of myself – but I don’t have the time to do it. I find ways to care for myself by running, reading, or writing. I do care for myself, but going to a spa just isn’t going to happen. While most special needs parents recognize the need to care for themselves, it doesn’t change the fact that momentary breaks won’t change their reality.

“But you need to celebrate the milestones he does reach.”

“you need to be grateful for what he can do”

I do. I know I need to be grateful. Trust me I’m on a pipeline with God daily talking to him about all the great blessings we have received with my son’s disease. Yet, the constant day to day reminder of the difference, of how hard he has it, how much he needs to fight to simply attempt to blend in, can really do a number on your psyche. I can celebrate it all. I can be positive and be his cheerleader. It does not change the fact that day in and day out we are fighting an uphill battle. There is nothing comfortable about this journey, and we do celebrate all the great progress. It also does not mean that climbing the mountain day in and day out doesn’t make us all very fatigued – including him. He needs a lot of down time – more than most children. He needs rest and down time to let his body do what it should do to grow. Even growth is hard for him. We are champions for him, but we know his battle is ongoing and will never relent.

“Crying is normal for a child his age”

“His frustration is totally normal”

“He’s just acting his age”

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I wish this was normal. Trust me, I get it. He definitely has normal moments where he’s ticked at me for not giving him the toy he wants in that moment. Or he doesn’t like where I’m sitting and demands I move. There are many aspects that are VERY NORMAL. Melt downs because he’s overstimulated due to his Sensory Processing Disorder is not a normal behavior. Melt downs because he doesn’t like the way his feeding tube feels are not normal. Melting down because he doesn’t want food to touch his hand, doesn’t want water, sand or basically anything on his fingers – is not normal. Having to pull him away from activities he loves because his heart is beating so fast – and his breathing is so labored – is not normal. Being at typical play dates and worrying that he might need to go to the ER for labored breathing – is not normal. Yes, he looks normal. But his body is missing pieces, his brain is misfiring daily and creating motor processing delays in every area of development. Watching him feel frustrated because he can’t communicate properly because he knows what he wants to say but his mouth won’t respond due to Apraxia of speech – is not normal.

“But he doesn’t look sick”

“He looks so normal”

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It’s probably the strangest response we get from friends and family. Often I want to respond “What does sick look like?” or “why would he not look normal”. Chronic illness and disease is not always visible. It is often INVISIBLE. Most people would have no idea that my son is missing pieces of his body, has a broken heart, or that his brain is not formed correctly. It’s on the inside of him. Illness is often NOT visible. Most people and children that are medically fragile do not appear sick. They will have the same physical appearance as the next person. Illness within does not mean they are not sick.

I know every person is well intentioned. It’s hard to see a child that is dealing with chronic illness. It is hard to manage the pain that it creates within the soul. Trust me. I feel it daily. It’s uncomfortable watching a child struggle. Please try to be sympathetic without minimizing what the parent and child are going through each day. You do not have to fix this situation. In fact, you can’t fix the situation. So stand within that discomfort for a moment, and realize the child and parent are feeling that every day. It’s OK! All you have to do is be there, lend a hand and an ear. But please try to remember this world is not normal. Many of the parents are at their financial limits and maxed emotionally and the things you say will not help them actually feel better. Try not to fix it. Just try to be there. Let the parent vent. Help them clean their home. Show them, while you may not understand, you are at least trying to understand. It’s OK not to understand. If you don’t live it – you won’t understand. It’s ok not to know what to say. It’s ok to just be quiet and be supportive with a cup of coffee, warm meal or a hug.

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Up until two weeks ago, my child, who has several life threatening diseases, was a child with an invisible illness. After two years of teaching him to eat, it became apparent we were failing to make progress. We had a feeding tube placed. Suddenly, my son’s illness was no longer invisible. It was visible to strangers. The 12 inch tube that comes out of his stomach hangs just below the end of his t-shirt. It gets in his way when he’s playing, and people notice it and stare at it. I still remember this week the look on the face of the mom that walked past us. She couldn’t stop staring at his backpack and his tube. There was a look of wonderment, confusion, and judgment. I felt powerless. I wanted to run to her and explain everything we have been through. Yet, in that moment I knew it would be one of many, many looks we will get going forward.

I get it because I was that person too. Anytime someone that walked before us with a disability or disease I would stare. My mind would race about what the person may be experiencing, what their life must be like, and most importantly the lengths they must need to take to simply survive. The same morning that woman stared at us at the park, my son and I left in discomfort and went on a walk. We walked a path along a lake. The wind was breezy, and the boats were rocking back and forth on the lake. My son was not at all concerned about what had just happened at the park. However, I was consumed by it. Then suddenly I saw two vans in the distance, and there was a pavilion to our left. It was filled with adults with special needs. They were on a picnic.  Laughter was filling the air. I smiled as I saw how despite it all they were grown and HAPPY. For a moment, I felt like I was peering in to our future. I silently wondered if my son would have friends that were like him as an adult. Would he have care takers as kind as the people with this group?

We continued walking and approached the van. More and more adults with special needs were stepping out of the van. There faces were lit with delight and happiness to be out with friends. Their care takers seemed stressed but willing to give them these memories. We passed a woman that had fallen to the ground. I looked over and a older woman, who also had a physical disability, was cheering on the woman to get up. On the ground, she looked defeated and deflated. I watched a group of women kindly cheer her on. She extended her arm to her friend and got to her feet. Everyone cheered and clapped. I was incredibly touched in that moment.  What I witnessed that morning wasn’t people with disabilities. I witnessed people loving and helping their friend; A friend that had fallen to the ground and felt defeated. They lifted her up and helped her to her feet. I realized that there are people out there that won’t stare. There will be people out there that will cheer on my son. They will accept him for everything he is and is not. It was as if God sent me this moment to remind me that the displeased looks of strangers should not effect me. I was reminded that while we may get stares, we will likely get a lot more cheers of encouragement.

Suddenly, I felt my entire thought process shift about what things will be for our future. It does not matter that a few random people stare at us. In fact, who cares! They do not know the lengths we go to care for our child. They do not know the sacrifices we make to give him the best life possible. All they know is he looks a bit different. They may think feeding him via a tube is strange and weird. But I know that tube is sustaining his growth, giving him the opportunity to learn and develop, and it’s giving his heart the nutrition it needs to function properly. If we spend our time focusing on the negative moments, we start living in the negative. However, when we are blessed to see the pure love of the human spirit, we start to realize that this world is full of incredible souls that love with no condition. They have spirit that will encourage and help develop those around them. They are the people that I want to be surrounded by. They are the people I want to think about when I doubt my choices and our journey.

Strangers will always stare. It will always feel uncomfortable.  Instead of being angry, the next time someone stares, I am going to simply ask them if they want to know what is going on with my son. I realize this is yet another way for me to advocate for his inclusion and acceptance within society. If I talk about it, the less weird it will seem to those around us. In fact, all of our friends and family think it’s fantastic my son is finally getting the nutrition he needs. I think any stranger we meet and stares, would love to know how much he’s thriving now.

I know that group that day barely noticed me. But I noticed them. I wish I could thank them for teaching me that no matter what positivity is always possible. Thank you to that group. Your fight and your life is not in vein. I saw you that day. I saw your love and kindness, and that love and kindness is now in my heart.

Have you ever experienced something that completely altered your mind frame about disability or disease?

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