Without a Crystal Ball

Our Journey through Chronic Illness

Grieving is an inevitable part of parenting. All of our children were born their OWN person. Before their birth, all parents have dreams of what they see in their future with their kids. Most of us imagine the child growing up, having common experiences in adolescence, learning to drive, attending their prom, and going off to college. This is what most children do as they grow up, but there exists a population of parents that end up having their dreams dramatically changed. I would gather most parents have their dreams turned because life never goes as you plan. However, sometimes life goes so far off track, you cannot even fathom the reality you live in. I live in this world with my child. I live in a community of other parents that also live in this world. We have kids with disabilities and developmental delays. I am not talking about minor health issues or learning disabilities, but I am talking about kids that are medically fragile, and many have severe developmental delays.

In this world, our dreams have been altered so dramatically it is hard to imagine a future where we won’t be a part of our children’s care. Envisioning independence for our children is hard. Most of our kids will not have childhoods that resemble anything normal to the masses. It is hard for most of us to find a way to accept this place in the world. There is tremendous grief that comes along with raising a child with so many needs, but there is also, even more, joy and love. I have struggled over the years trying to find the balance of accepting the journey I am on, allowing my son to be who he is, and trying to not prevent my grief from giving him the life and childhood he deserves.

So how do we find ways to cope with our situation? I often think about this for myself and how I would help a new mother that comes into the world of raising a child that is medically fragile. Here are some things I do that help me avoid feelings of loss and grief.

  1. Stay Focused on The Present  – the best thing you can do for yourself is to not think about what is coming in the future. If you were to look back on your own life, I am confident many things that have happened you could have never anticipated have occurred. Life has a way of throwing curve balls, and it takes us in directions we didn’t know possible. Focus your time and energy on each and every day. Some days you will need to concentrate on each minute, others each hour, but don’t stay out of the day you are in. You have no idea what will happen in the future, and worrying about it will only make your anxiety and grief feel worse.
  2. Focus on the Positives of your child – As your child grows you will frequently hear what deficits they have, but this is only a snapshot of who they are as a person. You will be bombarded with developmental charts, therapy evaluations, and have reports from school that will remind you where your child is at compared to his peers. I use to look at these reports and feel really sad. However, I now look at these reports and see how far he has come. Our children will meet milestones in their own time, and every single inch stone is worth celebrating. Focus on the all the milestones they hit, and try not to compare your child to same-aged peers. The minute I realized his path was different it was easier to accept our place
  3. Stop the Comparison game – Our kids have been through a lot more in their short lives than most adults will deal with in their lifetime. We must have grace and realize due to the magnitude of their illnesses that life for them will look and feel different. I spent many days early on comparing him to peers that were typical, and it would eat me up. Over time, I realized that his journey has been his own, and I have to respect that he will learn everything at his own pace. In that time, I have been able to see his strengths. He won’t do many of the things that a typical child will do, but he also gets to do things an average child will never do. He got a trip to Disney World, he was a special guest in a parade, he gets gifts and cards from people all over the world, and he is able to participate in programs especially for children that are medically fragile. None of that would have ever happened had he not been given the life he had. Yes, our life is different, but it’s also provided us amazing gifts and opportunities.
  4. Find outlets to manage your stress – Raising a child with medical complexities is exhausting both emotionally and physically. It is important you find the time to take care of yourself. I scoffed at this notion in the early years. I had no idea how to fit in all his needs and my own. I found myself spiritually empty, emotionally drained, mentally sick, and physically exhausted. I have never had the best respite care for my son, but I have now found ways to take care of myself. Easy things you can do for yourself: Eating a balanced diet, exercising, meditating, reading, journaling, and getting out of the house to spend time with friends. If you can’t manage the stress or anxiety on your own, find a professional to talk to about your feelings and help you navigate the stress of your life. There is genuine trauma that is faced in this world, and it is important you find a way to communicate the stress and find ways to reduce the stress.
  5. Ask for help – If you are struggling at home to get it all done, ask for help. It’s hard for me to take care of all the needs of my child, his appointments and maintain a home that is free of clutter and clean for his medical equipment. I was able to find a way to hire a cleaning agency via his county social worker to help us with the housework. I have been able to ask my parents to watch him at least once a month so my husband and I can have a night out together. If I have appointments that I can’t bring him to, I try to find a trusted friend that he can be with for a few hours. We cannot do it all, and we are not designed to do it all. Use the resources you have been given and find help in the people that want to help. Most people want to help, but they don’t know how to help. Give them direction and tell them what you need. It was the best thing I did for my family.

Grief will and does happen. It is important to recognize what you feel, give the feeling the time it deserves, but it’s important you not stay stuck in grief. Our children need us to be positive, help guide them, assist them to learn, and they need us to love them unconditionally. I know all too well how hard it is to feel stuck in grief, but the sooner you find your way out of the grief the happier you will become and the better parent you will be.

Tell us how do you manage your grief? Are there things you would add to the list? Comment below.

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For the past several years, I have written and shared about my experience of raising my son who is medically fragile. What I haven’t shared is what the diagnosis has done to me and my mental health. I think it has been touched on in a few blogs, but today I want to get into the nitty gritty of how debilitated I became by anxiety. It also helped me reach out for help, get the proper diagnosis, and medication to help improve my overall mental function.

My son came into the world on October 11, 2012. He had the coolest birth date 10/11/12. I was so excited to be a mom. His labor was painful, and he was sick when he arrived. We stayed in the hospital for 38 days. Living in the NICU was very challenging, and my anxiety was through the roof. I had a difficult time understanding what was going on, the words doctors were using, and the gravity of the situation. I ended up persuading the physicians to let us go home. In retrospect, this was a mistake. He should have stayed in the hospital longer. They were just beginning to identify his issues, and I was so tired of the hospital I forced their hand. We came home, and we were back in the hospital within seven weeks. This time he was near death. He spent days on life support and almost died a few times. He was bagged back to life more than one time. We finally received the diagnosis, and we had a plan for how to manage his care at home.

I was naive about the magnitude of the disease. The doctors said as long as he got his medication, he would grow, learn and hopefully thrive. They did expect him to have delays due to the severity of the illness, but they expected him to recover. He didn’t recover though. He wasn’t a good eater, he missed his milestones, he was sick all the time, and I became a mess. I was trying to work and care for him. It was very hard. He could not be in daycare due to his medical status. We had trouble finding consistent care for him at home. We hired a few nannies, but we couldn’t keep one longer than a year. We were constantly in and out of the hospital, adding doctors to our list, and he was falling further and further behind. I couldn’t keep up with the demands of his health and my job. I worked, but could not focus on anything but him. Eventually, I abruptly quit my job, when I could no longer manage the stress of it all. At night I would cry, stay awake in a panic, and find any way to make the pain I was going through to disappear. I tried everything to make myself feel better. I ran, I worked out, read books, journaled, blogged, sought to connect with other people going through it, but nothing seemed to work.

It was impossible for me to make friends with parents of other children. I could not identify in any way with a parent of a typical child. I angered easily, I lashed out, and I got frustrated at any mention of another child’s success. I found it impossible to talk about anything but my son because our entire life felt completely out of control. Every single day I was fighting a new battle. There was always a new diagnosis on the horizon. We rarely went to appointments and received good news. Every evaluation he had, he was further and further behind his peers. I started to blame myself. I thought it was the antidepressants I took, or maybe something I ate when I was pregnant. I figured it was because I forced him out of the NICU too early. I lived with the massive guilt every day that I had created all of his issues. My anxiety was through the roof caring for him. I wasn’t sleeping or eating properly.

In the midst of all of this, we moved to a new home, to a new town and a place that was a unique world. We moved from the city to a small town on the outskirts of the metro area. It was beautiful with rolling hills, and farms all around us. We had dirt roads near us, lakes, and wildlife everywhere. We felt it would be the ideal place to raise our child. I was eager to start fresh. I wanted to make friends, but I found it extremely challenging to find people I had things in common with or understood my quick tongue, quirky jokes, and short attention span. In the city, it had never been a problem to find like minded people. I felt almost stuck when we moved. As I navigated the social circles, I realized very quickly I did not fit in. It wasn’t for lack of trying on my end. However, anytime I’m forced into a place I don’t belong I always find ways to blow it up. My tongue gets the better of me, my words can be harsh and mean, and I isolate and find the means to push people away.

I sabotaged and destroyed relationships with so many people. I started to realize it wasn’t them but it had to be me. I felt isolated by being a parent to a medically fragile child, and I felt more isolated by being a square peg in a round hole of the community. Over time I did meet people that understood me. I met friends through a church that accepted me in my messiness and accepted that I made mistakes. They supported our family, were there for us in times of stress and doubt, and they checked in with me to make sure I was doing ok.  A friend reached out one day. It was out of the blue. I remember it distinctly because I wasn’t expecting it. It was a long message about how she felt connected to my heart, my soul and that she could tell we had much in common. She extended her heart and friendship to me, and she has never let go of me since.

It was through this friendship that I was able to unload my pain, my anxiety and the depth of my feelings I had experienced. I was able to share my heart, and I was able to have someone validate my experience, listen to me, and it made me realize I wasn’t alone. I started to have confidence in my ability. I joined a Yoga studio, I started meditating, I cut back on drinking and poor eating, and I began to look inward. I realized that even though we were in a very stressful situation with my son, my reactions to everything around me were inappropriate. I reacted to people with a hair trigger response. I said things as soon as they entered my mind. I had anxiety about being around anyone. More and more I isolated myself from everyone around me. With encouragement from my husband and friend, I sought out professional help. I had been through therapy in the past, and I enjoyed the experience. I was terrified this time though. I walked in the door and dumped my feelings on the floor.

I had expected for this just to be talk therapy. The doctor looked at me and said, “I don’t think you just have anxiety. Everything you describe sounds like ADHD.” I thought to myself, “No way.” I cataloged through my life and I realized I have been dealing with the effects of ADHD since childhood. I was socially awkward, I was hyperactive, and as a teen I had horrible self esteem.  My whole life I was impulsive, I spoke without thinking, I was self-involved due to high anxiety, I could not focus on anything, I regularly lost my keys, my clothes, my water bottle, and I could never turn off the rambling noise in my brain. I self-sabotaged relationships. I constantly angered people around me with my verbal impulsivity, and nothing in my house ever seemed to get done. I had a revolving door of friendships because the anxiety of getting close to anyone and admitting my messiness terrified me. I hated being in groups of any kind. I had trust issues and lacked the ability to keep my cool with people that thought differently than me. It finally became apparent. I did have ADHD.

Through extensive testing, my therapist diagnosed me with combined type ADHD. I was prescribed medication for the anxiety, and I will start doing therapy to work through behavior modification. It has been an eye-opening experience for me. As the medication is beginning to work, I am starting to see the litter of damage my choices and mouth have created. I am starting to see all the people along the way I hurt, but more than anything the individual I hurt the most was myself. My self-doubt, myself talk, my impulsive choices, and my inability to behave appropriately has ruined my self-worth and self-esteem. I have destroyed relationships, and I have been hardest on myself.  While I cannot change the past, I now feel like I have the power to improve my inner peace. I think by improving my behavior, I will, in turn, improve how I treat others and how I deal with myself. I’m hopeful I’ll be able to manage the care of my son with more organization and clearer thinking. He needs me at his best. His life is always going to need someone to assist in his care, and until he’s 18 years old, that person is me.

While it took me 38 years for my diagnosis to come to fruition, I credit my self-destruction and my son’s illness and moving to a small town for truly making it all come to light. I would never wish what I’ve gone through on anyone, but somehow all this destruction has created the opportunity for me to have a more fruitful and bright life. I use to look at my son’s life and feel paralyzed in fear. Today after starting medication, I no longer feel paralyzed. It will never be easy raising a child with a life-threatening disease and autism. However, with drugs, professional therapy, and support of my friends and family I believe I can do anything.

In closing, if you have found yourself to the end if you are struggling with mental health issues. Please seek professional help. I did everything but ask for help. I tried everything on my own. Listen to your body and your mind. Try to take inventory of what is going on around you. If you find a lot of chaos in your life, typically there is one cause of the mess – that is you. It’s ok to admit you need help. I am so glad I did. I finally feel free and clear. I hope you can too!

There are 4 seasons in the fine state of Minnesota, Winter, Spring, Mosquito, and Fall. It’s June, and we are officially in Mosquito season in the state of MN. It has been exceptionally wet this spring, and we have had several storms this month. The mosquitos are plentiful, and so are their bites. My mom always said, “Mosquitos love your blood” because I was always bitten more than my brother. As I have become and Adult, this has been no exception. Last weekend my husband and I sat on our patio and had a fire. The following morning I was awoken by a terrible itch on my foot. I looked down in horror, and I hate bites all over my ankles, toes, feet and the soles of my feet. I was in agony trying to relieve the itch. I quickly googled remedies for “what essential oils calm bug bites.” There were several options, and I tried a few of them until I landed on a combination that worked. It occurred to me that instead of wasting oil by mixing it with my hand,  I could conserve the oil by making a salve that I could rub onto bug bites.

I created my own “anti-Itch” balm and recipe based on a mix of recommendations from online. For this combination, I used the following oils

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Eucalyptus, Basil, Lavender, Rosemary, and Peppermint was the blend that seemed to be most effective in easing the itch and burn from bug bites.

If you follow the directions from this blog:

How to make balm with essential oils for basic wound care

The steps are exactly the same. Here is the recipe

No More Itchy Balm

2 Tablespoons Organic Coconut Oil

2 teaspoons organic beeswax

2 drops Eucalyptus

2 drops Basil

2 drops Lavender

2 drops Rosemary

2 drops Peppermint

2 – 1 oz tin for storage

This recipe will fill about 2 1 ounce tins. You will heat the coconut oil and beeswax in either a double boiler or you can use a saucepan and glass measuring cup. Once melted, remove the oil from the stove – please be careful as the glass will be hot. Add the drops of essential oils and stir. Pour the oil into the tins and place in the refrigerator. Allow cooling for 1-2 hours.

Apply the balm to bug bites and itchy rashes as needed.

*please consult your doctor if you are worried about any potential interactions between essential oils and medication. This is for informational purposes only. Always use caution when handling essential oils, and never apply to the skin without a carrier oil. Always make sure to research any oils you wish to use on a child before application.

 

I love essential oils. I am an addict of sorts these days. Over the years, I have tried so many different brands of oils. In my journey of using oils, I have found so many different brands and many with great oils and great results. If you follow my blog, you will know I am not a loyalist to really anything. I believe in trying different brands, different types and then make your own conclusions on what works best for you.

Wound care is a big deal in our house. At age 38, I am yet to master thinking before I move, and I constantly nick and cut myself. When I am in the kitchen, I find myself cutting myself when I chop veggies for cooking. My body also moves faster than I think so I fall down a lot, and this results in shins and elbows with scrapes and bruises. It’s really not a cute look for someone my age. I am also mother to a 4-year-old boy. Any mother of a boy will tell you that cuts and scrapes are a staple in their home. My son is medically fragile, and he takes a lot of drugs to stay alive. I try to compliment his pharmaceutical drugs with natural solutions for wound care. It is important for us to use fewer drugs if possible, and I have found essential oils to be a really great compliment for our family.

I have often used Neosporin for cuts and scrapes, but recently I found a recipe with essential oils for scrapes and wounds that can be just as effective. Obviously, this should be used only on minor scrapes and wounds. Please seek medical help for more severe wounds.

What are the best oils for Wound Care? In this recipe, I use Helichrysum, Frankincense, Lavender, Tea Tree Oil, and Rosemary.

Helichrysum – this is an anti-inflammatory, fungicidal, anticoagulant and antiseptic oil among many other properties. For years it has been used in wound care because it helps to seal the skin. The wound will actually begin to glue together after application of the oil.

Frankincense – this is a highly sought after oil and has been used for thousands of years. This oil can increase the speed of healing in your wound and reduces scar tissue from forming.

Lavender – is wildly known to improve the speed of healing of the skin. It helps to reduce the scarring of a wound and improves your skin’s overall complexion.

Tea Tree – is an anti-inflammatory, antiseptic and antibacterial. This will help to clean up the skin and reduce a wound from becoming infected.

Rosemary – is an effective antiseptic, antifungal and antibacterial. It improves the healing time of scrapes and wounds.

Recipe for No More Owies:

2 Tablespoons of Organic Coconut oil

2 teaspoons of Organic Beeswax

2 drops Helichrysum

2 drops Frankincense

2 drops Rosemary

3 drops Lavender

3 drops Tea Tree

1 ounce tin for storage

in a small saucepan boil water. Place coconut oil and beeswax in a pyrex liquid measuring cup

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After the water has boiled in the saucepan, place the pyrex in the saucepan and allow the beeswax and coconut oil to melt

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Once the oil and beeswax have melted it will be in liquid form. Remove the Pyrex from the saucepan, please be careful as the pyrex will be hot! Use an oven mitt to prevent any burns to your hands.

Take your oils

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Carefully place the drops of oil into the pyrex container. You only need a few drops of each oil.

Once you have placed the oils in the beeswax and coconut oil liquid get your 1-ounce tin

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1-ounce tins can be purchased in bulk on Amazon. You can purchase them with or without labels. If you purchase without a label, you can write with a permanent marker on the top of the tin. I label mine with a permanent marker.

Carefully pour the oil into the tin

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After you have poured the oil into the tin, cover the tin tightly with the cap. Place in the refrigerator to cool the oil and allow the mixture to solidify. Once the oil is solidified, you are able to keep the oil outside of the fridge as the beeswax will hold everything in solid form.

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It shouldn’t take more than an hour or two for it cool. The balm can then be taken out of the refrigerator and used topically for any minor wound care.

IMG_0016.JPG*disclaimer – please consult with your doctor before using essential oils if you have questions about any drug interaction. This tutorial is for information purposes only and is not claiming to be used instead of seeking medical services. Use caution with all essential oils and never apply to your skin without it being diluted in a carrier oil.

Recently I learned something about myself that I had never realized. For years, I had been told I was very social, the life of the party, and an extrovert. However, on the inside, I never felt that way. In large groups, I often feel out of place, and I struggle with small talk. I am friendly and will talk with people, but if I have to speak with them too long, I will feel completely drained. My entire life I have always enjoyed helping other people, but after I finish, I need considerable down time to reflect and recharge. I have always struggled in social groups. In fact, I am really bad in social groups if I am going to be completely honest. I struggle to have friends for friend’s sake. In order for me to be invested, I need to feel a deep connection. If I am going to really open up, it will be in a one on one setting as I rarely trust the dynamics of a group environment. I have been told my whole life I am an extrovert, and I even thought I was an extrovert because I am not a shy person. Then I was meeting with a psychologist, and as we dug into my life it was revealed I’m actually a friendly introvert.

A Friendly Introvert? Is that even a THING? I had no idea an introvert could be friendly, but I am learning that introvert and extrovert personality has less to do with how you engage with others but more about how you recharge and what invigorates you. I am a reader, I love to write, and I absolutely love to spend hours researching and learning about new topics. When I have had a night out with friends, I will go home and analyze what I said, what I didn’t say, and figure out if what I did was appropriate or inappropriate given the social setting. It will take me a couple days to prepare for a night out, and I will often find a million reasons to stay at home. My social circle is very, very small. It is very difficult for me to exist in a group of people. In fact, the politics, social rules and personality dynamics of groups physically drain me.

It has never become more evident to me that I am an introvert than when I became a mom. The world of mom is like a series of one group to the next. There are baby classes, Early Childhood classes, toddler playgroups, preschool groups, volunteer groups for school, mom groups for support, and the list goes on and on. I have struggled at every single stage with the groups of motherhood. I love to develop relationships with others, but the idea of being in a group makes me very anxious, my skin gets clammy, and I get incredibly uncomfortable in these social settings. I have found ways over the years to excuse myself, remove myself, or make myself completely unavailable for these types of groups. I have found myself always drawn to close relationships with one or two people. If anyone tries to pull me out of this dynamic, I get incredibly uncomfortable. I try to tell people that I don’t do groups, but most people simply don’t buy it or believe it because I am a friendly person.

Being friendly does not mean that I am automatically an extrovert. It simply means I do enjoy engaging with others, and I do enjoy getting to know people. I love to make others smile, and there is no easier way to do that than by smiling at them. However, being stuck in a conversation with small talk will not only exhaust me but it will bring out my fight or flight. My body will find a million ways to try to leave the conversation, and over the years I have found creative ways to excuse myself from small talk. I find it best to keep it simple with people. Not all introverts hate people. We don’t all want to be stuck at home all the time, but we also don’t want to be forced to have small talk in order to socialize. I am best one on one, and friends who know me one on one would say in that type of dynamic I am personable and talkative. I may even lead the conversation in this type of environment. I am drawn to others that enjoy intimate interactions. My favorite type of days is a coffee date with a friend, spending the day at a friends house making bread or going for a walk or having a glass of wine over sushi with a good friend.

It is hard to find people in the social world that don’t want to be in groups. Everything we do in society seems to be structured around groups and group activities. The introvert in me silently yearns for a world of intimate one on one conversations, no awkward conversations at the playground while I watch my son play, and an invisible cape for the days I just really don’t want to talk to anyone when I am out in the world. However, I am forced to put on my smiley face so the world doesn’t think I’m a freak for preferring quiet time and nights at home with Netflix instead of parties.

I am finally starting to realize that it’s better to embrace your personality than fight to be something you are not. For years, I have forced myself to be social for social sake, and I have forced myself to try groups over and over. While I won’t give up on groups, I know I will not be my best in a group. I understand my limits now, and I realize that after time with groups I will need considerable time to myself. The introvert in me is strong, and it needs to be taken care of with books, reading, writing, quiet reflection, yoga, and meditation.

If you are reading this and feel the same, embrace your Introvert and know it’s ok to NOT go to the social events out of obligation. Go to the events when your Extrovert tank is full, and leave as soon as you feel it getting to empty! Be brave and embrace your need for the time by yourself. Do all the reflection you need. Don’t feel like you have to be a group person because other people are group people. Find the people that can you can be you with, and cultivate those relationships. The struggle for the friendly introvert is real, and we can overcome it – alone.

Last week my son and I sat in a waiting room at a clinic as we waiting for test results. I could feel my heart beating outside of my chest, my hands were sweaty, and I couldn’t stop fidgeting. He was impatient, making sounds of an engine, and throwing a dump truck on and off a chair. People around us didn’t seem to notice my agitation, and I hoped they weren’t bothered by a child that only knows two decibels loud and louder. Finally, after waiting about 1/2 hour, we were called back to the room we had just come from. There were 4 chairs, and they were filled with a Mental Health Counselor, a Licensed Psychologist and an administrator observing for the clinic. I could feel my hands sweating, and I was nervous because I just wanted answers. My son was not cooperating. He was clingy, climbing on me and demanding to play. We moved to the room that adjoined the conference room as it had toys for him.

I took my seat next to a slide and bean bag, and my son started fidgeting with toy cars, playdoh and jumping on and off the slide. The Psychologist started first, and I can tell you I was barely listening. I heard him say a few things about his motor skills being at age appropriate, and then he mentioned his language and cognition was on pace with his age. My heart sank because I thought this meant they were going to tell us that nothing was wrong. My legs started to bounce up and down, and I looked at them with a puzzled look. I truly thought that was the end of the conversation. I said, “Ok.” Then the woman paused and looked at me and said, “Oh we have more though. This is just the initial findings of his development.” My mind came back to the room, and I thought to myself, “this is where they are going to tell me.” The male psychologist looked at me and said, “we want you to know we see all the things you have said about regarding your son. We see his inability to do many things without prompting, and it is clear he doesn’t use body gestures in nonverbal communication, and he doesn’t seem to understand body language. This coupled with his hyper and hypo-sensitivity to stimuli and his need for routine and resistance to change is consistent with”. There was a long pause on his end. I stared at him and looked at him with eyes begging to tell me. Finally, he started again, “Your son has Autism Spectrum Disorder.”

Immediately my head fell backward and tears flew down my face. I started crying, and I looked at them and said, “So I’m not crazy? There really are differences? This really is Autism.” I was relieved and yet so puzzled at the same time.  He looked at me and said, “No you are not crazy. He has Autism.” After that I really don’t remember much, it was a blur of charts and papers. There was talk about what to do next, therapy, follow-up calls, and treatment plans. We left the clinic in the haze. I was happy to have answers, but I left with so many questions.

The diagnosis was the build up for 4.5 years of questions about why he struggled so hard to do very basic things. He was delayed in nearly every single area of his development. He sat late, babbled late, crawled late, walked late, and he was non-verbal until he was 3.5 years old. As he entered preschool, he was challenged to talk to children. He would look at other kids, but he would rarely approach them. If they approached him, he would become stiff and have no idea how to respond. The differences in my mind I had been cataloging for quite some time started to add up and it became this avalanche of differences that tumbled over us every single day. I asked opinions of his Occupational Therapists, Physical Therapists, Speech Language Pathologists and all of them were adamant that he was not autistic. “He’s too social,” was always the response they gave me in regards to why they believed he was not autistic. He was a very friendly child. He was interested in people, and did say hi to adults and loved to play with adults. However, he was terrified of children his own age.

This did not seem to satisfy me. I took quizzes online, read everything on Autism Speaks, and dug through blogs about early signs of Autism in children. Over and over everything I read seemed to be my son. He was repetitive and played with the same toys over and over. We had to teach him to play with toys, we had to teach him to inquire about the world, and we had to encourage and prompt him to engage with others. He hated to be touched by anyone other than my husband or myself. He collected diagnosis of Sensory Processing Disorder, Motor Processing Delays, Apraxia of Speech, Oral Dysphagia, and finally oral aversion. He had so many of the very evident flags for autism. Even his developmental pediatrician saw it at age 2, and even he said, “He’s too social though”.

I didn’t stop reading or searching for a reason he continued to struggle in such profound ways compared to other children. I wanted to know why he couldn’t understand hand gestures, wave hi, give knuckles to friends, or blow kisses. When I asked him to look up, I wanted to know why he would turn his entire head up instead of just his eyes. It puzzled me that at night when I said, “Don’t let the bed bugs bite”, he would look at me with fear and say “but where are the bugs?” Everything he did was so literal. It was black and white. He lived in a world where he existed and everyone existed in his world. We never had conversations that were back and forth. He would talk at us about whatever he was interested in, and he rarely asked us questions unless it was a topic that directly affected his schedule or his interest. His teachers noted he had little to no interest in his peers. His Sunday school teacher shared he often stared at children that were crying with absolutely no reaction on his face.

His sensory issues controlled our lives. Noises were too loud, textures for pants hurt him, mushy food made him gag, he hated anything messy touching him, he only ate foods that were orange, and he was constantly seeking ways to crash and fall. We couldn’t go out to venues without having an escape route and a plan for leaving. When we did go places, we often had to leave early. We left more than a few places after too much noise elicited massive meltdowns with tears, screaming and hitting. Soon we stopped making play dates with typical peers because he always became too clingy to us, wouldn’t interact, and would whine and cry if we left him with children. Our lives became very insulated and isolated by what he would and would not tolerate. He started obsessively collecting cars and trucks. People would tell me every boy loves them. I would say, “It’s the only thing he loves”. He showed no interest in any other toys.

In the beginning, he would line them up in long rows on the floor, and then as he got older he would categorize the cars by type and color. He began to read books about trucks and learned about heavy equipment. His entire life was consumed in cars and vehicles. He wouldn’t watch cartoons about anything other than cars or trucks. We once watched the movie Cars 8 times in one weekend. He spun the tires of the wheels of cars obsessively. When he’s nervous or agitated, he still spins the wheels.  Even though he knows how to play with them more appropriately I still find lines of cars and cars sorted by color around the house.

It got to a point where I could no longer ignore all the glaring flags waving in my face. I made an appointment with a neurologist and shared every last concern with her about my child. She was the first doctor that said every single thing he was facing could easily be explained with an Autism Diagnosis. I left with a referral. We were seen over two appointments and several hours. The clinic was amazing and the staff was wonderful. I was so scared that after searching for so long that they were going to tell me it “wasn’t autism”. When I finally got the answer, it felt like a weight of a thousand pounds had lifted off my chest.

We are still in the beginning of the journey of understanding how to help him, but knowing what it finally gives me hope that we can effectively help him. I have a name for all the diagnosis he has collected over the years, and we now have a plan to help him navigate through the world that isn’t necessarily built for his mind. It’s going to take a lot of blood, sweat, and tears, but I know we will find a way through this diagnosis. I still feel very overwhelmed by the magnitude of this disorder, but I am also hopeful because there is so much help for children with Autism. The one thing I’ve learned is no one knows Autism other than a psychologist trained to evaluate and screen for Autism. Therapists and Doctors can only provide you information based on their experience treating others with Autism. The problem with that is if you know one person with Autism, you know one person with Autism. The spectrum is very wide, and each person is affected so differently. Some children will be very friendly and others will not. Some will love to be touched and others will refuse touch of any kind. Some will speak and others will never speak verbally. It’s a wide spectrum, and the only way you will ever know is if you get your child tested.

If you are reading this and wonder if your child is on the spectrum, I encourage you to contact your child’s pediatrician with your concerns. Be very honest about your concerns and press for an evaluation. Advocating for a child is the only way you can get answers. Also being “friendly” or “liking to be touched” doesn’t mean your child isn’t Autistic. It just means they manage the deficits differently. Knowledge is power and early intervention is key for long term success.

For more information on Autism visit Autism Speaks.

Earlier this year I wrote this blog to the Senators of the GOP about the proposed changes to the ACA. At the time I was terrified at the proposals in the bill for Medicaid being changed to block grants for states. Earlier this week, the GOP house passed the AHCA and what is in there for Medicaid is even worse than I could have ever envisioned. I have sifted through information trying to get details about what the changes could be to Medicaid, and I have spoken to other parents, hospital administrators and social workers to get a sense of what is on the horizon. The grim news is that the bill, in its current form does not bode well for individuals with disabilities and the elderly.

It has been hard for me to wrap my head around why anyone would support the current changes to the American Care Act. I am not blind that under the current model people are getting screwed on their premiums and coverage. I have witnessed friends go to great lengths to find policies that will work for their families, and then see the cost is so high it becomes prohibitive to have it. My friends that are small business owners have expressed their concerns about taking their kids to the doctor because of their deductible, under current plans, is so high that one visit could be hundreds of dollars they can’t afford. This is an aspect of the ACA that needs to be changed. People deserve to have plans that are affordable as well as access to medical providers of their choice.

What didn’t need to be changed was the rollout of Medicaid where it expanded access to families with low income, and it provided additional funding for Medicaid waivers and grants for individuals with disabilities and the elderly. I have witnessed so many people that had no options for health care benefit greatly from this change. My own family has benefited tremendously to the expansion. Our son is disabled, and he has numerous health issues that can not be cured. We will manage his health care for his entire life, and when he ages out of our insurance, the only option he will have for health care will be Medicaid. The extent of his illnesses will make it next to impossible for him to hold meaningful employment, and his neurological disabilities will make it impossible for him to ever live completely independent. Right now Medicaid is an entitlement program. Any person that is eligible for Medicaid receives it, and the Federal government reimburses states dollar for dollar for waiver programs. Waiver programs allow children and adults with disabilities to stay in the community rather than being institutionalized.

For my family, this has enabled me to leave my full-time employment to be my son’s Personal Care Assistant. A child, like my son, cannot attend daycare, requires outpatient habilitative therapy, behavioral therapy, and needs daily medical interventions. The benefit of the waiver program for my family is that he is cared for by a person, me, who understands all of his specific needs. Before the waiver, we were challenged to find anyone that could keep up with his level of care. We had nannies that were not skilled in managing his care. When we attempted to use Home Care Nurses, we struggled to keep a nurse for any length of time and often had several unfilled shifts each week. When he qualified for the waiver, we no longer had to worry about finding him the needed care because I could do it for him. I made the sacrifice to leave my high-paying corporate position to be his caretaker, but it was the best decision for our family.

Under the new bill, that passed the US House, Medicaid would move to a block grant program. Instead of being an entitlement program, patients on Medicaid would receive a fixed amount of funding regardless of their own need. The bill has proposed that the grants would be fixed at levels of 2016. Anyone that has a child or family member with health issues knows that health does not exist on a fixed monetary continuum. There are years where my son’s care is more expensive than others. As we look into the future we know he will need multiple open heart surgeries. The years these happen we will have medical expenses that will easily exceed over a million dollars. Our current medical expenses are nowhere near that amount. As needs change for anyone with chronic illness, the amount needed to care for the individual must be flexible. I am certain that this bill was not written by anyone that cares for a child or adult with significant disabilities. I can also assume it was written by people that simply don’t care about the long-term health care options for anyone with disabilities or chronic illness. The only people this bill benefits are the insurance companies and the very rich.

As I look to my friends that are Republican, I hope they can open their eyes to what is going on around them. Access to health care is evenly divided down party lines. Democrats support equal and fair access to health care, and Republicans favor tax breaks for the wealthy, dismantling programs that serve the most vulnerable, and favor helping to line the pockets of CEOs of insurance companies. The republicans continue to tout “States Rights” for Health Care. States Rights is sold to the masses as a way for states to have more control in how they spend and manage their residents health care needs. The primary problem is that some states have shown over time they don’t care about spending money on programs for the vulnerable or those that are low income. According to Disability Scoop, Arkansas, Texas, Illinois and Mississippi have consistently performed poorly in offering services for individuals with disabilities. Under the new legislation, these same states would have more freedom to underserve and underperform in helping individuals with disabilities. This will force families to make really hard choices about whether they will need to move to a state that offers better services. With the present laws in place, I know several families that have moved to my home state of Minnesota. Minnesota is consistently performs in the top of states for services and program offerings to individuals with disabilities. Not all states are created equal and the new bill will create a further division.

I will continue to fight for my child and his care for his entire life. I will continue to write letters to congressmen and senators about how their vote effects my families and millions of other families across the country. I urge all of you that are not yet involved to get involved by reaching out to your representatives to share your stories. Health Care should not be a political issue. This is why I have lost all respect for Republican lawmakers that favor this legislation. All humans deserve access to health care, and we should care for the most vulnerable in the country. If we don’t make improvements, we will continue to be in the top 5 of major countries with the worst health care in the world. I want more for our country, and I hope you do too!

 

 

 

A few weeks ago I had an anniversary that I never dreamed of having as a child. I woke up and it was 10 years from the day that I was drugged and sexually assaulted by an acquaintance. It was a hard few days as I navigated the difficult memories, the painful emotions, and the trauma I had experienced. There were a few moments that it felt very bleak, and the darkness was engulfing my entire spirit. As I sit here today, it is hard to fathom that something that happened 10 years ago can still feel so fresh in my mind, body, and spirit. After the darkness had lifted, I was able to see what in my life has changed over the course of 10 years. I was able to look to my loving husband, my adorable son, and walk in my beautiful home and realize how far I have come since that day. The healing is still not complete, and there are days and weeks that it completely wraps itself around my soul. However, I am getting further and further in the healing process. I’ve learned things about myself I didn’t realize possible.

  1. Healing takes Time – I remember the day it happened like yesterday. I was so numb and outside of myself for weeks. Everything seemed to happen around me, and I was merely a passenger in life. I did not actively engage with anyone or anything in those first months after it happened. There was a day I sat with my therapist and distinctly remember telling her that I felt nothing. I could tell her the entire assault, or the parts I could remember, without a hint of emotion. When I shared it with others, it was as if I was talking about something that happened to someone else. I completely detached myself from the entire event. In that process, I began to separate myself from myself. I started living a life outside of my body. For years, I was not able to really feel love or touch in a meaningful way. As the years moved on, I got further from the assault, but I remained very detached from my body. It took a lot of meditation, breathing and practicing yoga to finally feel ok inside my skin. When I look back on it now, it’s hard to believe an event that lasted less than 10 hours could impact me so greatly.
  2. Relationships will be tested – People have great empathy and sympathy for individuals that go through sexual assault after it initially happens. However, over time I found people got tired of hearing about my sadness, my fears, my anger, and the rage I felt towards my perpetrator. I found fewer ears to listen to me, and over time I bottled up what happened because most everyone just expected me to “move on”. I didn’t move on though. I just continued to keep that rage, anger, fear and sadness within my spirit. Instead of joining groups or friends for events, I isolated myself from everyone. There were a few years I rarely left my house outside of working and going to the gym. When I felt unsafe in a situation, I pushed people away without an explanation. I let go of friendships without a goodbye, and I would spend my time in my head or by myself. I was diagnosed with Post Traumatic Stress Disorder, and that in itself became a very sticky point in relationships and friendships. I had a hair trigger temper, little things would trigger me, and I would often say things I didn’t mean or didn’t want to say out of stress. Friends became less willing to deal with my outbursts, and I found myself without anyone for a very long time.
  3. Intimacy in a loving relationship is forever changed. After the assault, I never envisioned myself in a relationship where I would fully trust anyone. Then I met my husband two years after it happened. We have been together for 8 years, and I am still challenged to be present with him in our most intimate moments. I am not even speaking of sex. It is the moments when I am being vulnerable or trying to open up to him. I have found myself holding a lot of it in over time, and then it bubbles up into panic attacks that take me completely over. We continually work on this aspect of our marriage, and I work on sharing with him as much as I can. However, there is a part of me that has trouble opening up to anyone fully and truly trusting they will not hurt me in some way.
  4. Justice is rarely served. My perpetrator was never prosecuted. My rape kit was very tested, and I have never been contacted by the police or investigators since my one and only interrogation at a police station. I was not treated as a victim by the police. I was treated as a liar. My healing hasn’t just been about the assault but recovering from being treated like a fraud rather than a victim. The trauma of the investigation was so hard on my psyche that I never called them again after I met at the station. While I wanted my perpetrator to be held accountable, I was too fragile to be victimized again in the legal system. I regret not doing more in those initial months and fighting harder for him to have a day in court. It haunts me to know he’s out in the world potentially harming others. I am sick at times thinking he’s in the world fooling others to believe he’s a good person. I was there that night, and he was not a good person that evening. He will never have his day in court, he will never be prosecuted, and I will have to find a way knowing every day he’s out there and could harm me or someone else again.
  5. Feeling safe and secure may never happen again. Because my perpetrator is out there, and because I know he could harm others, I never feel safe. It has found ways to infiltrate my friendships and relationships with others not associated to the assault. My initial reaction when I feel threatened in anyway is to run and flee the situation. I have left social gatherings well before I intended because of the panic I feel. I have abandoned friendships, sabotaged friendships and found ways to not have anyone in my life that could potentially cause me harm. My relationships with others exisit on a very short leash, and I have a hard time managing any form of conflict. Prior to the assault, I had not problem hashing out differences with friends. Now I tune them out, turn them off, and shut them out. I am working on this aspect of my life dilligently, but I have gone through more people than I am certain is common. My friendships are constantly changing, and I refuse to be parts of groups of people.

While it seems as if my life is dark and gray, writing and sharing this is actually entirely cathartic. I am for the first time shining a light on what the assault has done to me. It was a night that changed the course of my life forever. What I have learned most is that I need to continually be aware of how the Post Traumatic Stress it caused me effects the day to day of my life. I need to find ways to better manage that stress, and I need to work on ways in finding safety in my life. It will never be a perfect process, and healing from an attack is incredibly messy. However, my goal in sharing this is that if one other person reads this that has been sexually assaulted can relate and feel less alone, I have done my job in putting myself out there. We do not have to be isolated because someone else decided to have our bodies without our permission. We do not need to feel shame or embarrassment in sharing our feelings and how it effects our spirit and lives. What we need is support and understanding from our loved ones, that healing is on going and sometimes the trauma and stress doesn’t leave. Our healing will not be tidy. Please be patient with us as we navigate the process of finding out how to become survivors and not victims of a horrible crime.

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

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

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

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

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

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

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

 

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

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

Find time For your Spirit

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

Exercise

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

Eat Nutrient Rich Food

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

Check in with your partner or spouse

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

Cuddle or find ways to love your child every day

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

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

We want to know how you manage stress. Comment below