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.