The Elephant In The Room.

Anxiety…. according to the dictionary anxiety is a “feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome.” As much as I enjoy writing, this is very hard. All of us will deal with some level of anxiety at some point or several points in our life. But when is it too much? According to the National Institute of Mental Health (NIMH) “people with generalized anxiety disorder display excessive anxiety or worry for months. Symptoms can include restlessness, feeling on the edge, fatigue, irritability and more.”

What I do know is I finally recognized and admitted to some symptoms of anxiety and depression and sought help. My life has changed. As many as one and three people deal with some form of mental health issues like depression and anxiety at some point in their life. Which means there are a lot more individuals surrounding us that are dealing with these “elephants in the room” then what we know. I remember growing up and people talking about people that took pills for their nerves or that had a mental breakdown. My only thought of mental health issues were the extreme cases. In college some of my best friends dealt with depression but I really didn’t know what to think, how to help, or what to do. It was easier to simply ignore that part and build our friendship on so many other things. I have some very good friends who’s family members have dealt with severe depression. It has been an eye-opener.

Time to break the stigma

Time to break the stigma

What about me? It was February of 2015 when I finally admitted that I could not live the way I was anymore. I was angry. I was extremely irritable. I was tired. I felt stuck with my career. I felt like I was constantly surrounded by a great big gray cloud. I told myself I had no reason to feel this way. We had recently bought our home in the country. My boys were healthy and happy. We had a fabulous school, daycare, and friends close by. I have an amazing man I call my husband who loves me more than I could ever imagine. So in my mind I kept telling myself to just get over it. Look at all those other people with things so much worse than me. But I just couldn’t break it.

The Tipping Point? One night Little Bear decided to pour his own milk without assistance which resulted in a spill. I flipped out. I yelled at him. The look on his face will be forever etched in my memory. I cried. I called my doctor the next day. In visiting with her she said you are suffering from depression and anxiety. Wow. At the time I was reluctant to accept that. We talked. She prescribed a low dose antidepressant and said to call if anything came up and see her again in a month. I admit I felt defeated. I somehow felt inferior or less able because I couldn’t snap out of it on my own.

I’m a reader. I read lots of books and news articles and realized she was right. Then this amazing thing happened after starting on antidepressants my mood started to brighten and the irritability went away. Fast forward to today. I switched my meds a few times and started seeing a counselor therapist life coach as well. And through all of this I am happier now. I am stronger now. I am more focused now. I am a better wife. And most importantly I am a better mom.

The Reason Why I do what I do. Little Bear at the bike rodeo last fall.

The Reason Why I do what I do. Little Bear at the bike rodeo last fall.

Raising a child with special healthcare needs adds a tremendous amount of stress to a person and a family. Some studies say that parents of children with autism exhibit the same symptoms of post-traumatic stress disorder as soldiers coming back from combat. It is always being at a heightened sense of awareness 24/7/365. It’s the lack of sleep. It’s the constant doctor appointments and meetings to schedule and keep track of. It’s the fear that grips your heart every time your phone rings and it’s from school, daycare or the doctor’s office. Because every email, every text, every phone call has the potential to rock your entire world to the core. And until you have lived with a child with a disability it’s really hard to understand what anxiety really means. I have many friends with kids with disabilities. And the more we talk and the more we share the more I see myself in them. I am no longer ashamed to admit that I need help. I think we all need help in some ways at some time in our life. I have struggled to admit this to my own family and some of my friends but not anymore. Nobody says that you have to go on an antidepressant. Nobody says you have to see a counselor/therapist/life coach. Nobody wants to say I need help.

So this is my way of giving myself permission to say I need help and I’m getting help. Hopefully one person out there reading this will have the courage to admit that they to need help.

Maybe you need to call your pastor. Maybe you just need a visit with a trusted friend. Maybe you really just need somebody to come and help you clean your house or rake your yard or maybe make a meal. If someone approaches you and asks for a listening ear or a little help – give it. You may not know what that person is truly dealing with right now and you might just be enough to give them the strength and ability to face another day.

Why write about this now? You see my employer had the opportunity to allow an individual with a disability who is working with the vocational rehabilitation program to come into our office for a couple hours a week as a volunteer/job shadow to get a feel for what opportunities might exist for this individual. The majority of our office personnel are on board. But after two days of this individual coming to our office I find myself extremely anxious when this person is there. It has nothing to do with the person’s ability actually they do a fabulous job. It’s attitude I sense from others. It’s the attitude of why do we have to do this? Why did this person have to come here. What if something bad happens? What if…what if…what if… It almost feels like discrimination.

Then my Fierce Mama Bear personality takes over and I start to worry about the Discrimination little Bear is going to face someday. I fear for the discrimination Nate and I have or will have to face as parents of a child with special needs. I feel angry. Angry that we live in a world that still finds it okay to discriminate on the basis of anything. I’m angry at myself for all those times in my life that I discriminated against someone. Thankfully because of where I am at in life and the meds I take, the counselor I see and the amazing friends and family I have, I can tell myself that it’s okay. Because of my faith I can say a prayer and ask for forgiveness for all the times I was guilty of discrimination and I can say a prayer to forgive others for their acts of discrimination. And I can take that anger and use it as fuel to further my advocacy skills. It’s my job to do whatever I can to ensure a little less discrimination for Little Bear. It’s my job to get him involved so he makes friends that’ll have his back and that will be there for him.

You see anxiety doesn’t hold me hostage any more. I am using it to make myself a better person. A better friend. A better wife. A better mom. And a better advocate. So hopefully I can make the world a better place for my sons.

If you or someone you know is facing anxiety or depression or any thoughts of hopelessness or suicide, please reach out to someone. Anyone. A phone call, a text, an email, anything to anyone. You matter. And there is help.

The National Suicide Prevention Lifeline: 1-800-273-8255

Everyone has a reason to take care of themselves…these 3 are mine.

Everyone has a reason to take care of themselves...these 3 are mine.

Determination

Determination.  Some may think you are either born with it or not.  Some may say it comes from the environment when a person is young. I believe it’s a bit of both. I know both of my boys have determination.  I see it every day.

I also know I do.

I don’t always remember that I do.  But every now and then someone reminds me.  Saturday morning I talked to my Mom on the phone.  She was telling me how a friend of hers was over for coffee and they were visiting about when my sisters died in a car accident.  August 15, 1980.  Mom, Dad, Valerie, Cliff and I went to Iowa to see some family friends.  My other 5 siblings stayed home to keep the farm running.  Junill and Louise went to town to church and to bring home the exhibits from 4H achievement days.  On the way home, they lost control of the pickup and it rolled.  This being long before mandatory seat belt laws, both of them were thrown from the pickup and died. Junill was 15 and Louise was 14.  They were not speeding, simply an accident. Mom’s friend asked her how our family got through it.  Mom said she wishes now that therapy and counseling would have been more accepted and more available back then as maybe it would have done our family some good.  But she also told me the story (again) about one summer evening sometime after that.

I was 3 1/2 at the time. Mom loved to ride bike. One of her releases was to just get on her bike and go wherever she wanted – or ride till she felt better. We typically went west.  But little 3 1/2 year old me told her to wait, got on my trike and said I was coming with and we were going East.  I told her we were going all the way to Uncle Stan’s.  (about 1 1/2 miles away).  I then told Mom that we would see what we could all see on the way.  Mom said more than once that we should turn around and go home.  But in Mom’s words, “You little stinker….were so determined.”  We made it.  We saw a snake, lizard, mouse, gopher, cows, bugs and who knows what else.  Mom said it was her form of therapy.

I hung up the phone.  In tears.  “you were so determined” running through my mind.  Determination.  Was I born with it?  Possibly.  Did my environment encourage it?  Absolutely.  Have I always lived with determination?  Not really.  Have I recently found it again. Absolutely.  You see life throws us curve balls.  Not just once in awhile but all the time.  Sometimes we say “give us your best shot….we will turn it into a homerun.”  Other times we throw the bat down and say I quit!  You see baseball and life are kind of the same. We are on a team.

So who is your team in life?  Is it your family? Friends? Co-workers? Church? A group you belong too? Maybe it is your Thursday night softball league?

You see, your team whom ever they may be, lift you up.  When you feel like throwing down the bat and walking away they tell you “next time you’ll get it.”  Maybe it’s an unasked for hug from a friend or family member.  Maybe it’s an invite to coffee.  Maybe it’s an email or text message out of the blue.  Maybe it’s opening day of baseball.  Maybe it’s championship game night for college hockey and UND’s Fighting Sioux are playing! (Which they won their 16th National Title that night) Maybe it’s a sunset that takes your breath away.  Maybe it’s the stranger in the grocery store that told you that you are good Mom when you really didn’t feel like you were.  Maybe it’s helping a cow to give birth to that new baby calf.  Maybe it’s the sight and smell of freshly turned soil in the spring.

Hope. Love. Smile. Faith. Determination. Every little action or every little moment you stop to seize fills your soul with determination.  Who filled your determination tank today?  Even more importantly WHOSE tank did you fill?

You see everybody matters.  Every life matters.  Even when your tank is empty and you feel like giving up….someone out there is counting on you to fill their tank….and some one out there is waiting to fill yours.

Thanks Mom for the memory today and for refilling my determination tank.

 

Mom-Bear-Tulips-Advocate

Mom.  The best – hardest – most rewarding title.  Actually I don’t think there are any words to truly describe motherhood.  So this hat is simply:  Mom. 

I’ve been pregnant three times.  The first ended in a miscarriage at 12 weeks in September 2002.  The second resulted in the birth of My Rockstar in November 2003.  Little Bear joined our family in April of 2007.  We were told of a possible brain malformation at our 20 week ultrasound with Little Bear.  Many doctor appointments and specialist visits and tests resulted in us choosing to deliver at Abbot Northwestern in Minneapolis as it is joined via tunnels with the world renowned Children’s Hospital.  We lived in Starbuck, MN at the time just a couple hour drive from the Twin Cities. Long story short – delivery was fine.  All post-birth tests were also fine.  Follow-up with a neurologist at age 2 months to confirm diagnosis. 

Little Bear at 3 days old. Yes the little brown bear had something to do with his nickname.

We met with a pediatric neurologist and a MRI was conducted at Children’s Hospital.  We left the neurologist office that day with a diagnosis of Schizencephaly.  A few days later, the neurologist called my cell with the MRI results.  The Schizencephaly diagnosis was confirmed with a large cleft on the left side of Little Bear’s brain.  What did this mean for our baby?  His answer:  long term physical and mental disabilities.  He told me to not except Little Bear to ever walk or have much meaningful use of his right side.  He said that Little Bear wouldn’t speak.  He said Little Bear would have intense and long term mental disabilities, learning disabilities and at very, very high risk for seizures.  He suggested we look into getting services and come see him when Little Bear is 6 months old. 

I hung up the phone.  I stepped outside for some fresh air.  I called Nate.  I was ANGRY.  Who was this over-paid neurologist to tell me that my son would not be capable of pretty much anything?  No one has the right to put that title on child.  Furious.  I don’t know that the anger ever let me be “sad” over the diagnosis. 

Big Brother has been keeping an eye on Little Bear since the beginning. And he has been teaching him about agriculture as well!

 We spent lots of time on the internet.  (Which is always a bad thing to do with medical stuff.)  We found very little.  You see Schizencephaly is a very rare condition worldwide.  So what is Schizencephaly?  From the We Are Rare organization:  “Many sources define Schizencephaly as a very rare cortical malformation that results in grey matter-line clefts that can impact one or both sides of the brain. The brain malformation can occur during the early weeks of pregnancy. Also known as Split Brain disorder, the first documented case of the disorder was dated in 1946 by Yakovlev and Wadsworth. It’s predicted that in 1998, the name Schizencephaly was adopted by the medical community. With only an estimated 7,000 cases reported, Schizencephaly is the second rarest known brain malformation. According to a study in the UK, the probability of having Schizencephaly is 1.48 for every 100,000 births (Stang and Dr. Krucik, 2013). These numbers can vary in different countries where the disorder can often be mis-diagnosed for one of its underlying conditions.”  Please visit www.wearerare.org (Link in menu bar) for more information.  This description was taken today from their website.  This organization didn’t exist when we received Little Bear’s diagnosis.  We had a few paragraphs of info from the National Institute of Health and from Mayo Clinic.  That is it.  I know, because I printed it.  I studied it.  I googled every medical term in Little Bear’s MRI report.  Trying to figure out what it was, what it meant and how to prove the medical community wrong.

Our pediatrician had never heard of it but he said he would do everything he could to help us out.  He was one of the first people to tell us to take Little Bear home and love him.  Treat him like a “typical” kid.  And always expect him to meet milestones.  Then if he doesn’t, we work from that point.  He set us up with Early Childhood Intervention and medical therapy.  Little Bear started Physical Therapy (PT) and Occupational Therapy (OT) at the age of 6 months and speech therapy at the age of one.  All was through Early Childhood Intervention.  EARLY INTERVENTION IS KEY.  Can I say that again?  EARLY INTERVENTION IS KEY.  For every new parent out there or anyone that knows a new parent, if ever something seems behind or not quite right, EARLY INTERVENTION IS KEY.   Hopefully that will stick in your minds now and you will share that as needed. 

We have the most amazing and supportive extended family and friends.  We have had some of the BEST daycare providers ever.  They have ALL loved Little Bear, cared for him, expected great things from him and accommodated him. 

Big Brother showing Little Bear Gran's birdhouse up close.

When Little Bear was 6 months old we went back to the Neurologist.  Bear was holding his head up and smiling and laughing.  The Neurologist was floored.  His comment:  “This can’t be the same baby!?”  Ha – Shows what he knew. 

Fast forward 8 ½ years.  Little Bear is about to turn 9.  He wants to be a basketball player when he grows up.  His favorite foods include macaroni and cheese, squash (Boof – as he calls it.), ice cream, yogurt, applesauce and pretty much everything else.  He is tall and lean.  He has the most gorgeous blue eyes and crazy long eye lashes.  He knows how to use them too – just ask any new teacher or therapist that has him.  He is a whole lot of his Grandpa Val.  He has this sparkle in his eye that tells you he is up to something.  He loves to make people laugh.  He is a practical joker.  Oh and he not only walks – he runs.  He rides his modified trike.  He is starting to be able to dribble a basketball WHILE walking.  He talks even if not very clearly.  He uses sign language. He uses a communication device.  (A very expensive piece of medical equipment that looks like a small iPad or tablet that speaks for him.   – More on that to come.)  He is good at using gestures and facial expressions.  He lets you know exactly what he thinks. 

Little Bear and Dad doing what they love - looking at red tractors.

So you see in the last 9 years my hat is not just Mom, but Advocate and when needed Fierce Mama Bear.  I have learned so much from Little Bear – way more than I ever imagined. I’ve learned to appreciate the little things in life.  I’ve learned to slow down.  I’ve learned to be patient.  I’ve learned that the word “normal” angers me – normal describes a setting on the washing machine – not a child.  (Typical is a much better term to use when describing kids without any disabilities.)  I’ve learned about federal law and state law.  I’ve learned about the Americans with Disabilities Act (ADA).  I’ve learned about IDEA (Individuals with Disabilities Education Act). I’ve learned and I’ve learned and I’m still learning.  Most importantly I’ve learned that we all need to stand up for those that need an advocate.  If it is people with disabilities or the elderly or those with mental health issues – as every one of us is or will be in one of those categories.  Think about it: Who do you want standing up for you if you can’t stand up for yourself? 

Advocate.  The hat I never dreamt I’d wear as a Mom, but one I won’t give up.  A great leader and advocate I’ve had the pleasure of working with likes to say, “If you’re not at the table, you are on the menu.”  (Kevin Paap Minnesota Farm Bureau President.)  I first learned that in my advocating journey in agriculture, but being an advocate is just that, it’s being involved and speaking up.  Only now I sit at the table for disability rights and awareness and I have no intention of leaving this seat.

 I want to share the following poem with you as well.  Someone along this adventure shared it with me and it has always hit home. 

WELCOME TO HOLLAND

 By Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

 When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy. But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned. And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Fabulous tulips from my mother-laws flower garden.

Yes I am in Holland.  I love tulips.  I will be planting some this year.  I love windmills as well – always have.  Someday I will add one of those to my garden too.  Just recently I have discovered that I love to paint.  Thanks to Creatively Uncorked from Moorhead, MN – my friend and I have painted some 5 or 6 paintings with more on the schedule.  So I also have my own Rembrandts.  The best part of Holland though is the amazing people that are here with me.  Thanks to Little Bear I now sit on the board for Family Voices of ND, the consumer advisory council for IPAT (Interagency Program for Assistive Technology), I am involved as a parent educator with the Physical Therapy Department at the University of ND right here in Grand Forks, I am participating in a parent interview for an Occupational Therapy Student from UND, I am a graduate of the Partners in Policy Making program through the ARC,  and I will be presenting at a new EMT class this coming month on the section regarding special populations – particularly about kids with sensory issues, those that may be nonverbal and may be runners (think Little Bear and the individuals with autism.) Every parent conference I attend I meet new parents and advocates.  We share.  We help each other.  We talk about our tulips and windmills and Rembrandts and know that we understand each other. 

I don’t know everything there is to know about disability rights and laws but I’m willing to learn and I’m willing to share.  Little Bear is my inspiration and his infectious smile makes everything worth it. 

We continue to provide therapy for Little Bear and we are fortunate to have a fabulous school that has his best interests at heart.  What’s next?  Whatever Little Bear puts his mind too. 

The boys playing some driveway hockey over the weekend. Bear likes to be goalie.

Mom is aiming for riding a regular 2 wheel bike by summer end.  And Little Bear will be working on his basketball skills and helping Mom cook.

Always setting higher expectations…..

Bear looking his best at Easter.