Without a Crystal Ball

Our Journey through Chronic Illness

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.

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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

 

 

 

We wrote this a while back – and I think it needs another view! Please read and enjoy!

Without a Crystal Ball

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…

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Screen time is the nemesis many therapists, teachers, doctors and friends tell you is the worst possible thing you can give your child. When we’re out, I see how people look at me and judge my parenting because my child is watching a video while we eat. I see how they shake their heads and whisper about how I must be a lazy parent not to just engage with my child while we eat. I see it all, and I’m screaming inside that I see the judgment. Prior to having my son with special needs, I was the same as them. When I saw parents allowing their child to do this, I would think the same thoughts. Then I was given a child like Von.

My child was born with a complex disease. The disease nearly killed him when he was 3 months old. He hadn’t been diagnosed yet, and he spent a week on life support clinging to life as doctors tried to figure out why all his organs were failing. When he finally got diagnosed, the damage was already done.

He had prolonged low blood sugar for more than 48 hours, and it dipped as low as seven when he was the most critical. A blood sugar of seven would kill most people. It did not kill my son, but it did damage his brain. Doctors told us, “Your child will never be Einstein.” They talked about “learning disabilities” and “developmental delays.” He was just a tiny baby then, and at the time I ignored it.

As he grew, he fell further and further behind his peers. He seemed to respond excessively to movement, and he would avoid touch and texture. He became obsessed with cars, trains and trucks. While other children were playing with toys, my son was itemizing them, lining them up and organizing them by type. He didn’t know how to play, socialize or eat. We tried everything — every single thing you can imagine, every food, every technique — and there was always a strong pursed lip and head shake when food came close to his mouth. Then one day we gave him a phone. He was able to distract himself with an entertaining clip on YouTube or silly dog video. We could sneak the bites in and encourage him to chew. After months of exhausting so many possibilities, we sought therapy with professionals to help.

The therapists said, “Your child has apraxia of speech, oral apraxia, severe oral aversion and sensory processing disorder.” I looked at the therapist and had no idea what any of that meant. They explained he’s so overwhelmed by all the things around him that he can’t effectively process motor movements in his mouth, he’s unable to chew and swallow because he can’t coordinate it in his brain, and the only way he can do any of this is if we make the process automatic versus planned. It finally made sense.

All this time, and all those judgmental looks from friends, family and strangers, and I had somehow known my child well enough to know he had to be distracted. If Von had to plan it on his own, his brain can’t do it. He can’t chew if he has to think about it. He can’t speak if he has to think about it. Everything must be spontaneous, or he has to be significantly distracted by other things to do basic skills.

I asked the therapist if it was OK for him to watch a screen while he ate. She told me he has to eat, and until we can help him learn to master this skill on his own, everything in our home should stay status quo. We shouldn’t interrupt meals and expect him to sit still and eat without distraction. He needs distraction to eat.

I felt validated when she told me I wasn’t being a bad mother for allowing this behavior. However, it doesn’t mean those looks I get when we’re out don’t sting any less. I know people think I’m a lazy parent and judge my choices. I see the comments on social media, and no matter how hard I try to not let it affect me, it does. Parents of children with oral motor processing disorders have to do things differently. It wasn’t even something I knew about before being a parent. I didn’t realize how hard it was to chew and swallow. I didn’t realize touching textures would be so hard for my child that he wouldn’t feed himself. I had no clue he would lack coordination to lift a spoon to his mouth to feed himself.

I know it looks strange to see a 3-year-old being spoon-fed by a parent or to see me fight him to open his mouth to eat. Or when you see me put my finger in his mouth to scoop out the bolus of food from his cheek — I see those looks. What we’re doing isn’t normal. However, we’re doing our best to allow him to grow and thrive. We are all determined to help him learn to eat, because a feeding tube would be a step backwards for us.

Next time you see a parent like me struggling with their child to eat, instead of judging, maybe give them a sympathetic look or a high-five and tell them you understand. Let them know you aren’t judging them. Eating disabilities are real. They’re hard on all members of the family. Be compassionate, and remember we are all just doing our best.

Also Seen on The Mighty

Being a friend to a parent of a child with special needs is not an easy task. The lives of a parent of a child with special needs are fairly chaotic, unpredictable, slightly self serving, and messy. I am a parent to a sweet little boy, and he is the biggest blessing we have ever experienced. He has several diseases that are life threatening, and he is developmentally delayed. Our lives are pretty busy most days, and he requires supervision constantly to keep him safe and alive. Over the past few years, my husband and I have had people come and go. I’ll admit we haven’t been the best at maintaining friendships. I know my limits and I know there are times in my life my sole focus has to be on my son. This doesn’t mean I don’t want friends, crave friends, but it definitely means our friendships aren’t what they use to be. If you can get through the difficulties of a friendship with our family, you will see the joy and experience the miracles every day of knowing our son.

I could go a couple different ways with what I’m about to say, I could give you the reasons why it’s hard to be my friend, or I could tell you the reasons why it’s worth it to be my friend. A gift I have is my gift to look at the good side of things, and today we are going to talk about the top 5 reasons being a friend with a Special Needs Mom is awesome.

  1. We come with a ton of experience and knowledge

Most of us have spent a lot of time in doctor’s offices, hospitals, and therapy centers. Our kids have been through the ringer, and through that we have become a wealth of knowledge and experience. Did you just get back from the clinic and have labs that need to be deciphered? We know more than you even realize and can often share what we know. I’ve helped more than a few friends remain calm and understand the labs of their children. Are you concerned about your child’s development or behavior? Most of us have been dealing with it for years, and we can share all the tips we have acquired from our therapists and doctors. We can also recommend when to seek therapy and what centers are the BEST in your area.

2. We are fantastic with Empathy 

All of our time dealing with our own trauma, have made us excellent at understanding your pain. Even if your child isn’t dealing with things our children are, we can still relate because no matter what – it is hard to see your child struggle. I have found over the years that I feel good when I can lend an ear to another mom struggling. We all need someone to listen to our pain, and we have seen it all and can relate to any of your struggles.

 3. We won’t be possessive of our time with you

Listen, our lives are freaking crazy. Most of us are lucky enough to find a minute to go to the bathroom by ourselves because our kids need a lot of supervision. We are are running from appointment to appointment, and most of our days are filled with dealing with all kinds of emergencies. Days, weeks and months sort of blur together for us, and we may seem to fall off the radar. It doesn’t mean we don’t want to see you, but we just are pulled in multiple directions. We will never demand time to see you, and we will appreciate the time we can spend with you even more.

4. We will value your friendship Immensely 

If you are able to stick with us through our messy life, I can promise you we will value and respect you so much. We don’t have a lot of people that are willing to hang with us through our journey. When times are tough, we have seen a lot of people walk out on us. Some of us have lost our best friends in the world. If you are willing to stick with us in our messiness, we will give you all we have. We will love you more than you can even imagine. Financially we may not be able to spoil you with gifts, but we will be able to spoil you will love and adoration. It’s a special person that can be there for a family in chaos, and we will always appreciate your friendship.

5. You will Experience the Miracles of our Children

Many of our children are fighting battles daily that most of us will never experience. You will bare witness to the true miracle of life. You will see what it’s like to fight and beat the odds. When our children reach a new milestone, you will get to celebrate right along with us. Sure this sounds selfish, but until you experience the miracle of a child with special needs you will realize how unselfish this is. When you watch a child fight and reach their goals, life takes on a whole new meaning. You start to appreciate the little things, and you will realize it is love that truly matters. The heart you have will soften, and you will find yourself finding joy in the little things. Experiencing a fragile life, will teach you to enjoy the little moments, focus less on material, and understand that relationships are the foundation of life.

It will not be easy to stand beside us. We will challenge you with our rollercoasters of emotions, our inability to bite our tongues and our explosive tempers. However, we are grateful for all of the friends that stick with us, and we will cherish you to the end of eternity. It takes a special person to love our families, but we promise you will not be sorry for sticking with us. The hugs and kisses you will get from our kids will be worth the ride.

 

 

Dear Senators of the GOP,

Hello. My name is Katie Paulson. I live in Minnesota, and I am the caregiver to my son, Von, who is disabled. I want you to know that the talk of repealing the Affordable Care Act, because that is what it is actually called, is petrifying to me. When the law was passed several years ago, it opened up windows to our life that made us no longer have to live in fear. You see my son was born with several life threatening diseases. He spent many weeks in the NICU after he was born, and then at 3 months he spent 17 days in the PICU. The illness at 3 months of age nearly killed him, but thanks to the grace of God he survived. However, he has not been left unscathed from this illness. We are still dealing with the aftermath of this illness. When he got sick, his body was shutting down. He was severely hypothermic, in cardiac failure, respiratory failure, liver failure, and his blood glucose dropped so low doctors couldn’t believe he was alive. Anytime you have an illness that severe, it’s more probable than not that your body will never be the same. Today my son lives with a disease called Panhypopituitarism, which he has had since birth, and from the illness he developed damage to his brain and heart.

As I have read everything that is going on in Washington, I hear lots of talk about dollars and cents, but no where is there talk about who you are effecting by making these changes. The biggest thing that I’m not hearing is that the GOP is not willing to keep Lifetime cap exclusions, the clause that excludes denial for pre-existing conditions, and I have not heard that you will keep Medicaid in place for the folks that need it the most – the people living with serious disabilities and disease. When the Affordable Care Act passed, there was joy and happiness in my home. We finally felt safe to know our son would always have the health care he needed. It also meant that no matter how much therapy, medication or hospitalizations he had, his provider could not kick him off for reaching his lifetime maximum. We also learned that additional funding would be given by the federal government to the states to better fund the Medicaid waiver programs. For the first time in a long time, we had hope that despite his illness, we would not have to worry about his safety.

Today I am scared. I am scared that because a few men in suits, hate the Affordable care act so much that they will dismantle it before listening to the millions of us that benefit from this act. I realize that premiums went up, and I realize people are ticked off that they have to carry insurance. I can’t speak for them, but I can assure you that my family pays large premiums for both primary and supplemental insurance for my son. We have never once complained about the premiums, because we have seen first hand what our bills would be without insurance. We are grateful we have the option to even have insurance. We are grateful the State of Minnesota is invested in the lives of the disabled, and we are grateful that my son has access to Medicaid insurance and waivers.

For several years, I tried to work while caring for my son. I held a high paying job, and our family was doing really well. Then in January of this year, we were told our son needed open heart surgery. It was a punch to the stomach I could not handle. In that moment, it was as though nothing even mattered. My son had qualified for Home Care Nursing via his Medicaid, but due to the reimbursement rates for nurses, not enough nurses want to work in Home Care Nursing. The same month we were given that blow about his heart, we had 16 open shifts and no one to care for our son. I was forced to leave my job at that point. My son is too complex to attend daycare, and he is only able to go to school because he has his own nurse with him at all times. When I left my job, the state of MN let me know I could apply for a waiver for my son. My incredible Social Worker told me that I could become my son’s paid parent on the waiver. We would be able to supplement a fraction of what I left by leaving my job. However, the quality of life my son has had since has made all the difference.

My biggest fear in your plans is moving Medicaid to a block grant program. I’m sure on paper it sounds nice. You have all said you will give the power back to the state. Some people aren’t worried, but most of us in this community are shaking. We already know how underfunded our state programs are for Medicaid. Moving to a Block Grant will only further strip funding for the most vulnerable. Currently there are states where there is a longer than 10 year wait to get on a waiver. These are states that have access to the current Medicaid funding. Under the block grant, your party believes a fixed amount of money will be enough to manage the disabled. If only we lived in a perfect world, would a fixed amount of money work. Do you not realize that emergencies come up a lot, diagnosis get added, and that no person with disability is worth a FIXED amount. These are people not lines on your charts. They have feeling, needs and they need more than a passive solution of a block grant. To me a Block grant says, you don’t care enough to realize how much these people actually need. It says to me that you are ok with states putting people with disabilities on a hierarchy where only the most severe get services. That is the part that disgusts me the most. You are the party that swears up and down you are Pro-Life, but nothing about a block grant says Pro-life to me. If you care about the life of a child or an adult, you would spend the time necessary to realize what their true needs are. You would realize that most of these people can’t work because of their disabilities or because employers have become so unwilling train them or flexible enough to understand they won’t always be there. Medicaid is the one thing these people have that they don’t have to worry about – and it would be cruel for you to take it away.

I’m counting on you to hear me and listen to my words. I will not go away. I will continue to fight for my son, for all families like ours, and for all the adults that are shaking in fear because a few egomaniacs in Washington would rather be RIGHT than do the RIGHT THING.

Sincerely,

Katie (Mamabear) Paulson

 

 

 

 

You can’t handle this.

This is another disease that could end his life.

This can’t be happening.

What if he dies in his sleep?

What if he doesn’t wake up? What if he falls off his bed, I don’t hear it and he goes in to shock? What if I don’t know how to help him? What if I’m not capable? No, I’m not capable. I can’t do this. This is too hard. I’m not strong enough for this. Why does everyone think I’m strong? I’m not strong. I’m weak. My body is tired. It’s probably because I’m sick. I’m probably dying of an undiagnosed disease. Cancer. Heart attack. Stroke.

I’m tired, but I can’t sleep. My mind is on another sprint through every dark scenario that could maybe happen. As I lay there wide awake, I cannot turn off my brain. The only thing in my mind is how to get through another day of handling a chronic illness I cannot control. How do I manage to care for a child who is chronically ill when I have generalized anxiety? Even though I’m on prescription drugs for anxiety, I still have panic attacks. My heart will race so fast, I feel like it will explode. My appetite will be completely gone. I can go days without even thinking about eating. There have been points in my life where I have lost more than 20 pounds in a matter of months due to high anxiety.

At its peak, I could do days without more than two to three hours of sleep a day. In my experience, doctors often want to medicate with sleeping medication only. They don’t always tell you how much of a zombie you might feel like the next day. They don’t always tell you that you will feel so foggy, you may not remember the first few hours of your day. Instead of sleeping pills, I just opt to try to sleep on my own. It’s horrible. Most days I feel like I’m debilitated in exhaustion. When I do finally drift off to sleep, my son will wake up from a night terror, discomfort from his feeding tube, or be scared because his night light is out. Somehow you get use to not sleeping, or at least, not sleeping well. Even though each and every day, I feel physically exhausted, I keep on moving. The truth is, there is no other choice. There is no one else to care for my son. There is no one else I want to care for him, and with his debilitating disease, I have yet to find a balance of caring for myself and caring for him.

When I’m surrounded in a crowd, I am easily seen as a bubbly, extremely happy person. Yet, at the end of the day, I’m drained and incomplete. My brain is buzzing thinking about what I said or if I said something inappropriate due to my anxiety. I analyze and critique everything and consistently worry and panic that I’ve somehow upset someone or I’ve made an enemy. More than 99.9 percent of the time, none of this has actually occurred. I have learned to train my mind to know it’s just the paranoia of anxiety. It’s just what happens to people who are anxious. When the anxiety gets too loud, I have to tell it shut up. Or I wait quietly for my fears to be refuted.

There are days I wonder if I will ever feel OK. Will the anxiety that rips through my mind ever stop? Will the panic I feel subside, and will I be able to just breathe? Medication can only dull the noise that goes on in my brain. It never totally goes away. Therapists teach self-talk, and they teach you to reel it in. Yet on the worst days, nothing is actually able to reel it in. When anxiety takes hold, it’s like I’m stuck on a ship I desperately want to get off, but I’m stuck at sea. The waves are rocking back and forth. I feel sick to my stomach, but I know vomiting will do nothing to ease the pain of what I feel. I close my eyes to make it stop. All I want to do is sleep, and yet my mind continues to race. I slowly drift to sleep, but it only lasts moments.

I know many of us in our community experience anxiety and depression. I know so many other parents who are suffocated by fear. They can’t seem to move forward because the reality of what they are facing is hard to bear. The only thing I can do is continue to lean on God. I need to try to find comfort that he will take care of me. I need to trust he will take care of my son. I need to give my fears to God. Each night I quietly pray for him to guide me, watch over my son and help me manage another day. He is my strength. He is my backbone. He is the feet that carry me when I am too weak to move. I pray each and every day that one day I will feel less anxious, and as I pray, I feel more and more calm. One day I know he will carry all of these fears. One day I will feel peace. One day my son and I will both be whole.

Also seen in The Mighty

I could have been sleeping, but I was not asleep. Instead I was tossing and turning thinking about what the GOP lead Congress and Senators what to do to Health Care in the United States. All I have heard in the past few months is how dismantling the Affordable Care Act would help millions of people. There have been many proposals about how the system will work, but none of it seems to be in favor of people with disabilities. There has been speculation about dismantling Medicaid, and there have been rumors that the amount of federal funding to states for waivers and grants would be slashed. I can’t figure out why the GOP lead Congress and Senate is hell bent on driving the vulnerable and financially weak in to further despair and poverty.

As a mother of a child who is disabled, I am terrified about what is to come for healthcare, medicaid, and services for the vulnerable. Children and adults with disabilities rely on government funded programs to survive. It isn’t because they are leaches on society, but it is because most of them cannot work due to serious health conditions or physical disabilities that prohibit them. These are people that would love to contribute to society but cannot because their bodies or minds won’t allow it. The unemployment rate for people with disabilities is twice that of the national average. In 2015, according to this survey, only 17.5% of people with disabilities were employed. When I think of my son’s future, I see an 82.5% chance that he will never have a job. These statistics are what keep me up at night in fear. If he will be unable to work, he will need some form of assistance to have access to health care and to live. When he is an adult, what happens to him if there is no Medicaid?

My family currently benefits from the Medicaid program. My husband has a full time job at a large organization. I left my job a year ago to take care of our son. My son has a number of serious health issues, and he sees more than a dozen doctors. My husband’s employer offers wonderful insurance, and we have been lucky that they have approved many of my son’s claims. However, they do not cover all of his needs. We needed to find supplemental insurance to cover what they denied each year. When my son was two years old, he was approved for a program through the state of Minnesota for supplemental medicaid. Our family pays a monthly fee to the state for the insurance, and the medicaid will cover what his private insurance denies. Presently we rely on his Medicaid to cover his formula for his G-tube, his habilitative therapy, and much of the medical equipment he needs to improve his quality of life. If we did not have Medicaid, we would be paying 100% of the cost for whatever is denied by our private insurance.  This would amount to thousands of dollars every single month, and we would be bankrupt.

Medicaid is a life saver for our family because we know that every month our son will be fed, he will be able to go to therapy, and he will have access to his state waiver. Waivers are an additional benefit of Medicaid that many families across the country access to care for their loved ones. My son’s waiver enables me to be paid to be his Personal Care Assistant, but not all states offer this option. His needs far exceed what a typical child would need. Either I have to work and pay for a private PCA or nurse, or the waiver allows me to be paid to care for him. This has been a life saver for our family. I was able to quit my corporate position, and I was able to earn a small income to stay home with him. Please know that the amount of these waivers is no where near a corporate level job, but it does provide enough relief to our family so he can be cared for, get to his appointments, and have his life organized. As he gets older, his waiver will help pay for lifts for our stairs, wheel chairs, and modifications to our home to make it more accessible.

While we have access to these benefits now, I worry about the proposed changes the GOP want to make to Medicaid. I worry about what will happen to my son when he is an adult, and what type of programs he will have access to. If employers won’t hire him, someone needs to step in to help him. My husband and I can certainly provide him a place to live, but once he reaches 26, we can longer pay for his insurance. He will need his own insurance. The only option he has as a person with a disability is government funded insurance. My son would die without the medications he gets each month. His medications cost thousands of dollars out of pocket, and if he is unemployed, he will never be able to afford them.

Medicaid isn’t a program that people use to “suck off the system”. Medicaid is a lifeline for the most vulnerable to have access to health care and services. I lose sleep at night wondering how legislatures in Washington can be so naive to how expensive it is to care for a child or adult with a disability. I think about how disability and disease is the one thing that NO ONE is immune to, and any person at any time can become permanently disabled. If we dismantle Medicaid, what kind of message are we sending to families and people with disabilities? Are we telling them that they no longer matter? Are we telling them that they will have to go in to poverty and bankrupt? Are we telling them they no longer deserve medication and to live? Furthermore, what happens to all the people that become disabled in the future? Who is going to care for these people? Who is going to pay for their insurance? Or is the greed of a few billionaires in Washington more important than the health and well being of millions? Will we become like other countries around the world where the disabled become disposable, homeless and die from lack of services?

I ask all of you reading this to forward this blog, spread it wide, contact your senators and congressmen and women and tell them you are not in favor of any cuts to medicaid. Let them know that greed should not trump human decency. Remind these men and women that no one is immune to disease or disability. Tell them that as a nation we are responsible to help others that cannot help themselves. We cannot fail people with disabilities and their families. We cannot allow greed to destroy the lives of millions. We must stand together and demand better for all families.

 

 

When I was a child, my goals were to be in the FBI, a lawyer, a famous writer, or a top executive of an organization. Never one time in my life did I tell anyone that I just wanted to be a mom or a wife. It just was not a part of my dreams or life goals. I successfully completed my college degree, and I went on to start climbing the corporate ladder when I finished at 22 years old. My life was pretty successful. I bought my first home at 25, owned a nice car, and was able to live a fairly comfortable life. It felt good to be meeting those goals and dreams. However, then I met my now husband, got married and we got pregnant within a year of being married. My plan was to still continue to work. I had been able to juggle a lot in the decade I had been in the corporate world, and I thought I could most certainly juggle a child too. Unfortunately, that was not the plan for us. After my son was diagnosed with several very serious illnesses, I was unable to meet the demands of my high pressure career and care for his very serious needs. After 3 years of doing it all, I left my employment, my large pay check, and I started my full time job of caring for my son.

I looked around and started talking to other parents in the community of children with special needs and medically fragile children and I noticed a trend. I was not the only person that was forced to make a choice between my career and my child. There were times I would sit up at night and wonder why this happens so frequently to this community. Slowly I took stock of what had gotten us to this place, and I realized just how this unique situation is incredibly incompatible with working. In fact according to a survey done by The National Survery of Children with Special Health Care Needs more than 30% of parents end up leaving their employment to care for their child. This survey was just a sample size, and based on my own experience in this community I would say that number is far greater than 30%. I spoke with other parents to find out why they left, what happened, why were they in this position, and here are the top 5 reasons I have found.

1. Lack of Daycare facilities for children with Special Needs

Daycare is about the only way any parent can work and have a child. Whether you send your child to a daycare facility, a home daycare, have a nanny or a family member watches them, someone has to be responsible for that child while you are working. For families where their child has significant needs, finding adequate care can be impossible. For children that are medically fragile, daycare can be dangerous and even life threatening due to the number of germs they are exposed to on a daily basis. Many large facilities are unable to accommodate the specific needs of children. Nannies and private home worker salaries can be financially impractical for many families. Many of us end up at home because we have no one else that can manage the complex needs of our children in a safe place. The only option for many of us is to stay home.

2. Our Children have a lot of Appointments

I have shared with numerous friends that I feel like my life is spent in a car driving to an appointment or a waiting room waiting for the appointment. Our children have multiple doctors, which often means monthly or weekly appointments to various clinics. Children with special needs often have developmental delays. Most of these children require therapy to help them gain skills they would otherwise not learn on their own. For our family, my son has 5 therapy appointments a week to help his gross and fine motor skills, speech and feeding issues. We also have more than a dozen doctors and many of them want to see him multiple times per year. We rarely go a month without a visit to the hospital or the clinic for my son, and most months we are there multiple times. Someone has to be available to take the child to the appointment, talk to the doctors, therapists and learn what is being instructed or taught by the professionals. Most of us realize early it’s hard to balance this schedule and work commitments.

3. Unexpected Emergencies Happen A Lot

Anyone that raises a child that is medically fragile or has special needs knows that emergencies happen a lot. The first few years of my son’s life, we spent a lot of time in the hospital. I missed a lot of work because my son would be in the hospital for weeks at a time, and as soon as he was out he would be unable to go back to regular daycare. As his needs have increased, even more emergencies can happen. Many children that are medically fragile have equipment they rely on to remain alive. Equipment can go faulty or break, and thus our children can require immediate help from medical professionals. My son is G-tube fed, has very poor physical stamina, and numerous illnesses that can send him in to crisis at any given time. When I was working, I used nearly all of my Paid Time Off caring for him during these emergencies.

4. All Employees are expendable

The harsh reality of working in a capitalist society with an economic system built on profit and losses is that every single employee is expendable. I remember the days when my dad would talk about how employers valued their workers and would go above and beyond for them. It seems the world we live in now, which is fast paced and ever changing, is less about worker satisfaction and more about profit and loss. When I was unable to meet the challenges and demands of my job, I was pressured almost immediately to find ways to eliminate the outside distractions in my life that were impeding my performance. Unfortunately, my outside “distraction” was my medically fragile son. There was no way I could manage his needs, his appointments and his well being and the needs of a demanding job. For 3 agonizing years, I tried to balance it all and I was very unsuccessful. I found myself a disposable commodity to them instead of a valued employee after 12 years of dedication on my part. I wish this story was isolated, but I’ve spoken to numerous people with the same story.

5. We spend a lot of time managing and organizing the Care

I hate talking on the phone. I would much rather email or text. Unfortunately, I have to be on the phone to coordinate and organize his day to day life. On a daily basis we have Medical Supplies to order, insurance claims to dispute, insurance authorizations that need approval for medical equipment or medication, therapy and doctor appointments to schedule, and doctors we need to update. If our children are in school, we have to prepare for our IEP meetings, coordinate care with the staff at the school, and ensure that our child’s needs are being properly met at school. Many children with special needs also receive state and county support. As their parents, we are in charge of filling out the mountains of paperwork, getting health records, and jumping through the bureaucratic hoops to get them services.

As you can see it’s more than a full time job caring for a child that is medically fragile or has special needs. We as parents are nurses, doctors, therapists, administrative assistants, and chauffeurs. For most of us in this world, the demands and needs of our child make working impossible and impractical. Next time someone asks me what I do for a living, I’m going to tell them I am the CEO of my son’s care.