My Home

Clatskanie, Oregon is My Home.  This may not seem like a huge revelation, but in a way it is. When I moved to Clatskanie in 1992 I was a young mom of two from Astoria and I had no intention of living anywhere but there. I was born and raised in Astoria.  My family was there and so was my heart. That was before the opportunity of a lifetime came along in the form of a pizza parlor whose owners were retiring and asked us to be the new owners.  So, with a heavy heart, I followed my husband and we began to build a new dream.

A few years after we moved to Clatskanie, the Great Flood of '96 hit the pizza parlor and we were devastated.  Thousands of dollars in damage in just a few hours in the middle of the night.  Four feet of mud and sludge inside the business where we were building our dream.  This was the day I knew my heart had found its new home.  When the sun came up the next morning, a huge number of people came and asked what they could do to help.  Our friends were all there to support us that day.  Even more touching were the dozens of people who showed up having never met us personally. Some commented that they had eaten at our restaurant, but they were virtual strangers before that day, just helping out for the greater good of the community.  For hours we worked side-by-side to try to save what we could of the restaurant's contents. In the following days, Toby and I began receiving checks and notes in the mail from community members wanting to help and we were overcome by the generosity on our behalf.  One evening after dinner, a knock came on our door at home and we opened the door to a gentleman delivering a check from the community.  The check was in the exact amount needed to recoup our losses (though we had not shared the amount with anyone) and we were completely overwhelmed with gratitude.  This is the Clatskanie that is My Home.

Years have gone by and we have not forgotten the gifts from our community, both tangible and intangible.  We have continued to receive the love and support of the community in different forms but always in the time and manner it was needed.  In 2004, our family hosted a young girl from Haiti who was in the United States to receive crucial orthopedic surgery.  The community came together and held a fundraiser on her behalf to help provide for her needs.  The local middle school classes showered her with toys and gifts that she had never imagined she would have and a little girl was made to feel like a princess.  Francesca was well-known during her 9-month stay and the community overwhelmed her with love and affection throughout her stay.  This is the Clatskanie that is My Home.

Toby and I have children with special needs.  We learned quickly that the world as a whole can be a cruel place for children who take their time reaching milestones and may look and act different from their peers.  Not so in Clatskanie.  Here, our children have been accepted, included, and honored.  In a world that recognizes physical beauty, strength, and academic prowess, our children have never been made to feel less valuable than others in our community.  Last week, Toby and I  attended the monthly Positive Behavior Support assembly at the Clatskanie Elementary School.  We watched as two girls with special needs were included in the relay contest.  The girls were provided helpers so they could compete, and were cheered enthusiastically by a school that wanted them to win.  They were surrounded by love and I was brought to tears as I considered the larger message.  This is My Home and I am proud.

Since opening a second restaurant in Scappoose last year, we have been questioned regularly about whether we will be moving our family there.  Not a chance.  Toby spends long hours away from home and his commute has increased by 90 minutes per day.  We miss him and I wish we lived closer.  However, nothing will take me away from this place that has loved my family from the depths of its soul.  This is My Home.

Building Relationships

See this girl? She is a winner.  Those are her words, all day long today.  Mom, "I am A Winner!".  Angie received a Golden Paw award at school today for Building Relationships.  I know, isn't that perfect?  Her teacher was spot-on.

Building relationships is a hard skill.  Not only for kids, but for many, many adults.  Actually, I think we become worse at building relationships as we get older.  I am not sure why but I suspect our pride and selfishness just gets in the way far too often.  Broken relationships?  Halfway-there, mediocre relationships?  Those we have mastered.  Not Angie, though.  She is all about connecting with others and engaging them in conversation. Angie has never met a stranger. Or I should say, no one stays a stranger to Angie.  She has expanded her world by building as many relationships as she can.  I admire her so much.

After the awards were given, a number of kids from each grade level were chosen to participate in a relay activity.  Angie was one of the 6 kindergartners chosen to compete and my protective Mommy heart was instantly worried.  Why do I do that?  She can do ANYTHING!  I was so proud as Angie rolled her pumpkin (a ball) down the gym floor, picked it up, and ran back to her team.  She sat in her spot on the floor and cheered for her team and at the end of the activity, the Kinders were The Winners!......thus, Angie's repeated comment that she was A Winner for the rest of the day.  She made it clear that it was not the personal award that meant the most to her, it was her participation on the winning team.  There is a lesson for us here.

I mean what I say when I tell you that Angie was sent here to teach us.  I may be overthinking, but if I am it is working for me.  Every single day I learn something from Angie's approach to life.  She takes on every challenge believing she is able.  And she is.  She greets every day looking for good.  And she finds it.  She is not burdened by her physical limitations and they do not hold her back.  My life has been changed for knowing Miss Angie and I would venture a guess that others that Angie has built relationships with along the way would say the same.  What a gift she has given us and I am thankful we were able to celebrate her yesterday for her impact on our lives.

Where is your comfort?

Everyone has a different idea or concept of comfort.  For some, it is the home where they grew up.  It can be a certain blanket, a food, or a pair of pants or a shirt that means comfort to you.  I am all about being comfortable, especially after an especially trying day.  I have a pair of denim overalls that just seal the deal for me after a long day.  I don't know what your special brand of comfort is, but I realized something about myself yesterday that was a little surprising......

The hospital brings me comfort.  Weird?  I know, but let me explain.  Angie and I went to Emanuel Hospital in Portland yesterday for two different appointments.  First, Angie had a speech therapy visit with Chris, her long-time speech therapist.  Chris handed me a report he wrote after Angie's recent speech evaluation and this is how it started, "Angie is a happy girl who is well-known in this facility."  I read that first line and I realized how true it was.  The professionals who have worked with Angie really get her Big Picture. They are not focused on her performance on a specific day or one behavior she is practicing.  They REALLY know her. And they are on her team.  They are cheering for her and have been for five years straight.

The report went on to include the words "low intelligibility", "impulsive", "significantly delayed", and "severe receptive and expressive language disorder".  Tough stuff.  But even all of those tough words are overshadowed by the comfort of knowing Angie is with the people who are in for the long haul.  They know where she has come from and where she can go, with the right supports.  Comfort.  Just like that.

Angie's other appointment was with "Dr. Steve", her rehab doctor.  Dr. Steve, whose last name is about 23 letters long and is not pronounceable, was one of the first people to greet us when Angie was transferred to Emanuel after her surgery.  At that time, Dr, Steve assured us that our girl, who resembled an oversized newborn at the time, would make daily gains in rehab and would leave the hospital a brand-new girl. Dr. Steve was right.  At this appointment, Dr. Steve cheered Angie for her new skills since starting kindergarten.  He listened to my concerns and validated each one.  Dr. Steve will be appealing the recent insurance denial for neuro-psych testing for Angie and he will not give up until it is approved.  Dr. Steve is one of Angie's champions and he reminds me of how much we have to be grateful for.  She has come so far.  Why do I forget?  I don't know but for now, this is comfort.

We have so much to be grateful for.  My sense of comfort when we are at the hospital is not about the building.  It is the people.  They have never let us down and they tirelessly look for ways to improve Angie's quality of life.  What a blessing to be in the presence of people who are devoted to making lives better.  They love what they do and it is not just a job.  Comfort.  It can be a place, clothes, food, people, or just knowing that resources are being devoted to making life the very best it can be.  Whatever it is, my wish is for you to experience a little bit of comfort.  Every. Single. Day.  Go find it:)

I am back!!

I can't believe I have been away from writing so long.  I really need a dose of writing therapy every couple of days but I have been at a conference for work in Bellevue since Friday afternoon and am just beginning to get back to reality.  Toby was able to attend the conference with me and we learned so much, both personally and professionally.  I was stretched WAY outside of my comfort zone.  I am still processing all of the information so maybe I will write about my experience another time.  It actually was life-changing and I am anxious to put my new perspective to work.

Angie had a great day at school today.  By definition, that is a day when she did not use any naughty words and did not have to go to time out.  YEAH ANGIE!!!  However, despite my pride I am realizing that I have been placing far too much importance on the rating of Angie's school days and this is something I am going to change.  Don't get me wrong, her behavior in the classroom is very important, but I have been allowing it to define her for me.  Angie is miracle and her perseverance and positive attitude are a lesson for us all.  Angie's behavior does not define her. There is so much more.  Energy, exuberance, joy, humor, compassion, drive, empathy, love, and so, so much that I don't even have words for.  Starting today, those qualities will be foremost for me as we continue to help our precious girl adapt to the rules and routines in the classroom.  I owe her an apology and she deserves better.  She is better.

Speaking of deserving better, don't you think we all deserve better than we allow ourselves to have? By that, I mean our harsh judgments of ourselves.  You know what I mean.  All of our  self-talk of "I Should Have", "Why Didn't I?", "Why Did I", Why Can't I?" Why do we do that to ourselves?  It is the same behavior as my limiting my definition of Angie to her "daily rating", only worse.  Please stop.  I know you and you are amazing, compassionate, thoughtful, generous, smart, humble, people.  Your behavior does not define you, your heart does.  Be easy and forgiving to yourselves.  Be gentle. You deserve it too.

My Hero

I know, here I am writing two days in a row but I could not let another day go by before I share this.......See this guy?

He is my hero.  This man is the most amazing husband and father in the world.  We have been together since we were babies, really (well, 17 and 18) and I never imagined what our lives would look like 26 years later or how much I would still adore him.  Women get together and bash their husbands every so often.  It is kind of like a sport, and that is fine.  But I can honestly say that I have never been able to participate.  He is just too good.  Don't get me wrong, I realize no one is perfect and it will always drive me crazy that he leaves his clothes on the floor and wipes his face on the kitchen towel (gross!), but I respect him far too much to trash him to my girlfriends, or anyone else.  He has done too much for me.

This man comes home early when he can hear in my voice that I am having a rough day.  He rearranges his schedule to attend important meetings for the kids.  When our daughters lock their keys in their cars, REPEATEDLY, he rescues them without complaint.  He tells me I look great even when I know that my current look is more "up all night with the baby" than Hot Mama.  He is my best friend and the person I run to with my good news and my troubles.

Today we had back-to-back IEP meetings for Levi and Angie.  Both kids had a rough start to the school year and Toby and I were not sure what we would hear today.  The meetings went well and we were impressed by the teamwork that occurred to ensure that our kids' needs were met at school.  The teams will be doing some evaluations to assess where the kids may need more help or extra support. Toby advocated for both kids and his compassion and true love for both kids came through as he spoke.  I don't know if I have ever loved him more.

Not to take away from this rambling post about my amazing husband, but I want to share that our school staff ROCKS!   Despite the nightmare stories that circulate about IEP meetings, that has never been our experience and we are thankful that God plucked us down in Clatskanie to raise our family.  Our children are in the exact environment that they need to be and the people they spend their days with truly care about helping them become successful.  I could not ask for more.

Tonight, as I lay down to sleep, I will thank my God for His goodness in giving me Toby for my husband and for drawing us to this wonderful town filled with love and compassion. I am one lucky girl.

We went to the park today.  No big deal, right?  Just a regular day as a parent of a 5 year-old.  It was more though.  This morning a friend posted a Facebook invitation to meet at the park for an impromptu play date.  Knowing that this friend has a daughter in Angie's class, a daughter who is basically Angie's self-appointed guardian angel, I decided to bundle Angie up and go. 

It was a beautiful Fall day and I visited with the other mothers as we watched our kids play. Kids squabbled, asked for help, came to get sand out of their eyes, climbed, went down the slide, and were just kids.  Angie included.  Again, a regular day, but for me it was so much more. Every "normal" experience Angie is able to have is a gift to me.  As one of my favorite bloggers wrote, "This perspective, this point of view, is a gift that mothers like me live with. We mother each day with our eyes wide open, not just marking the fatigue and the fevers and the falls that happen without warning, not just for these things, no. Our wide, open eyes also savor the sweetness in a smile and the simple joy that comes with laughter, that simple actions and movement can take great effort,and therefore are a gift.  This patience, this perspective, even my point of view didn’t come naturally. It has grown with time, with each new diagnosis, with setbacks and with each new achievement. This place I am in- can’t even be taught, or even learned through observation, as I once believed."  I am so thankful for the awe that Angie has put into my world.

Today, I am grateful for my eyes wide open to the miracles and wonders that every single day brings.  I pray that I will never lose my awe for what matters most.

A Memorable Day

Yesterday was a memorable day.   To begin with, Angie had an annual speech evaluation and SHE TOTALLY ROCKED IT!!!  One year ago, Angie's testing results determined that her speech was at the 22 month-old level. Today, Angie tested at 44 months.  I will do the math for you, since it does happen to be Friday and if you are like me, you have the week from you-know-where.  Angie has gained 22 months of speech skills in 12 months.  She is a rock star!!  Her therapist was not sure she would be able to complete the testing, which lasted for 1 hour and 20 minutes, but wouldn't you know-she did!!!

Some days seem to last forever and you start to wonder if you were dreaming them.  We met some friends for dinner and had what I can only describe as a surreal experience.  As we sat at out local pizza parlor (which Toby and I happen to own) a retired Clatskanie teacher sat at the next table and referred to Angie by a term I will choose not to repeat here. Really? I thought our community was above that.  I chewed on the experience for a bit and tonight I sent him a message about Angie's miracle and the joy she brings to our family.  I encouraged him to re-think his choice of words, particularly in public and to consider people with special needs as valid members of society.  To his credit, he responded immediately with what seemed to be sincere sorrow and regret.  I want to challenge my friends here to do the same.  Do not stand for our precious special ones to be treated with less than respect. Call it what it is-it is not okay.  Our special angels have enough challenges to endure without the added weight of hurtful words.

These are hard times for all of us.  The challenges that my family is facing are not unique.  We all have something.   Tonight I urge you to reach out to someone, anyone.  You cannot go wrong. Everyone you know is struggling with something.  Don't be mistaken, my struggles are not special or unique because I blog about them. The blog is just the outlet I have chosen.  Look around you.  I promise, there is someone in need of a smile, a hug, a meal, or just some true understanding.  Just do it.  You will not be sorry.

What not to expect when you are a parent

Everyone read the series of books about, "What to Expect When You are Expecting" before having our children didn't we?  For me, they were second only to the Bible on my reading list when I was pregnant.  I felt really prepared to be a parent and most of the advice and information in the books proved to be useful and true.  I believe that my first three children were ahead of the game due to the knowledge I gained from my reading.  I love those books.

Nobody prepared me for this.  These children who grew in my heart do not follow any of the timelines in those books.  For example, it did not tell me to expect the sleepless nights to last until my child was 11, and probably longer.  They did not prepare me for having more professionals involved in my life than I have relatives.  Or, for conversations including the term "DNR" or "heroic measures".  I was not prepared for the embarrassment and even humiliation at times that my children's behavior would inflict on me.  Nothing can prepare a person to place their child out of the home for a time to keep the family, and the child, safe.  Nothing.  What book would have told me that you would lay beside your child in the hospital for almost a month without knowing if you would take them home again?  Or that you would spend hours at a time researching remedies for seizures, aggressive behavior, sleeplessness, speech delays, and such?  That the solutions would elude you time after time despite your best efforts?

I love books. I have been a reader since I was a child, teaching myself to read at the age of 4.  If only a book could tell me how to take away my children's pain from living in a world that does not understand or recognize the enormity of their struggles.  I want to write such a book but I am too tired.  Can you help me? Can you tell the world how hard it is for these kids?  Can you stand up for them when they are mistaken for "naughty kids" when they are really doing the best they can to overcome the daily onslaught of Hard?

My family is fortunate to live in Clatskanie, a community that comes together to comfort and protect one another.  To bring relief in times of need.  But the global picture remains the same.  No book could have prepared me for this war and I need all the help I can get.

Serious stuff

Today is the day for serious.  There is an insidious disease among us and it is 100% preventable.  Do you know about Fetal Alcohol Syndrome?  I did not know much about it, either until my family was touched.  According to the National Organization on Fetal alcohol Syndrome, 1 in 100 babies have FASD, nearly the same rate as Autism.  FASD is more prevalent than Down Syndrome, Cerebral Palsy, SIDS, Cystic Fibrosis, and Spina Bifida combined. Alcohol use during pregnancy is the leading preventable cause of birth defects, developmental disabilities, and learning disabilities.

A few more facts about FAS.......The Institute of Medicine says, “Of all the substances of abuse (including cocaine, heroin, and marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus.”  The effects, which are lifelong and irreversible, include physical deformities, slow growth, vision and hearing deficits, poor coordination, developmental delays and learning disabilities, and behavioral issues.  FAS is an "invisible disability" in that people who are affected often do not have physical signs of disease.

Our 11 year-old son, Levi, was formally diagnosed with FAS in 2010.  We knew when he came to us at birth that his birth mother used alcohol, along with almost every other street and prescription drug that is available.  We knew he was severely affected because of the full body tremors, inability to drink formula without choking, stiff muscles, and his cry which occurred for hours at a time.  When Levi was about 6 months old we began to be able to leave the house with him again and our lives looked something like normal.  It was new normal, though, and the normal has changed continually over the past 11 years.

Levi has the kindest, most tender heart I have ever known.  He cares deeply about people and animals and he wants to please.  He is sweet, funny, and generous.  But he could have been so much more.  My heart aches for what will never be.  Because of FAS, Levi's overall functioning is that of a 5 year-old. As he grows up, it will always be that of someone about half of his chronological age.  He does not understand cause and effect, has difficulty following simple commands, struggles with learning, and is oversensitive to touch, sound, smell, and any type of change.  These are just a few of his challenges, there are many more.

Did I mention that FAS is 100% preventable?  If you are considering having children, or know someone who is, please consider this very seriously and share what you have learned.  No amount of alcohol consumption has been proven safe during pregnancy. The short-term gratification of having that drink will never be worth the long-term consequences for your family.  I am sorry if this post has brought you down. That was not my intent, but I did say I was going to be brutally honest and this has been on my mind.  

Levi is a blessing to our family and to the people who know and love him.  He has unlimited potential and has much to offer to the world.  We are grateful that God placed in him our family and our world is bigger and brighter because of his presence.  Please do not mistake my message, but smile when you see him because you know how much he has already overcome.