The Last Day

Today is the last day of 2013.  The end of the year and a time to reflect on the past year and (maybe) make resolutions about the year ahead.  I have decided that I will not be making any New Year's resolutions this year.  Why?  I guess I feel that making resolutions causes us to focus on our weaknesses and failures as reasons to change instead of focusing on the courage and strength that we draw from to put one foot in front of the other every single day.  If I am better and I do better today than yesterday I am making progress and I will be able to look back on my year with satisfaction.  That is enough to ask of myself in 2014.

That said, I have been reflecting on the past year and all that has transpired.  There have been milestones, victories and disappointments, to be sure.  In the past year, our family has had to consider an alternate placement for one of our children due to severe behavioral concerns.  We examined ourselves and our resources and eventually made a decision that we would parent the child through the challenges and were unwilling to retreat from the commitment we made to our child in the beginning.  We are the parents and we know and love our children like no on else is able to.  Tough stuff.

We helped Angie complete the transition to kindergarten and the process provided a major reality check for me.  She did not sail into kindergarten as I had hoped.  Instead, she struggled and faltered and provided regular opportunities for me to practice humility.  I was required to look at her needs and her challenges in a new light and to realize that the measuring stick of the medical community, which finds her to exceed expectations, is not the same tool used by the education system.  The adjustment has been painful and I have grieved the experiences I wanted for her as I have replaced my expectations with new hopes and dreams.  I am sad and disappointed in myself because just a few years ago my only prayer was for God to let Angie live and here I am today, greedy for way more than she is able to achieve.  This year I will do better.

Our family has had broken relationships and disappointments within.  All families have these fault lines and gaps in relationships and this year we faced them head on.  The end of the year has brought our family healing and hope for the future.  We have courageously come together and silently agreed to do better.  My efforts to do better and be better each day will be especially focused on my family and what it needs to remain strong and unified.  Everyday life is hard enough without pain and separation within the family.

Although we have have struggled this year, I find myself feeling a sense of gratitude and resolve as I move into the next year.  We have overcome every obstacle.  I have a job and family that I love and a huge "village" of people to hold us up when the going gets rough

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I welcome 2014 and all it will bring.  Each day, an opportunity to start over and do better than the day before.

Christmas Magic

Have you seen the magic of Christmas this year?  It is all around us, just waiting to be found.  We just returned from a 4-day family trip to Cannon Beach and I saw it there.  What a rare blessing to have all six of our children together in one place.  My parents and my brother, who rarely travel due to their age and health issues, were able to spend a night with us at the home we rented and their faces reflected how much they needed the Christmas magic that was there. The everyday worries were replaced by magic of being in the presence of the ones who know you best, share your history and walk beside you in the everyday journey. We walked on the beach, shopped, played games together, and of course, ate sinfully delicious food.

The magic is everywhere if you choose to see it.  We learned that our children met secretly last weekend for a photo session so they could present the pictures as gift to us.  When the "big girls" invited Josh, Levi and Angie for a sleepover, we thought they just wanted to spend time together:)  Kaeley, who is an amazing photographer, took the pictures and even managed to get in them herself.  If you are a parent of children, who all grow up way too fast, you know how precious this gift of Christmas magic is to us.  Priceless.  Here are a few of my favorites:

The Christmas magic is everywhere.  It is in the people around us.  This week, our school had a number of cancellations due to the weather.  Angie's kindergarten class missed their field trip to see Santa at the Castle and the disappointment was felt all over town.  Leave it to Ms. Stafford to make sure the kids did not miss their date with Santa.  The class was supposed to make-up the visit on Friday and (wouldn't you know?) school was cancelled again.  Ms. Stafford worked her magic and we received a phone call that the visit was on if parents could get their kids to the Castle.  Could you ever feel the magic in that room!  Angie was thrilled to see her "school friends" as she calls them and to tell Santa what she would like for Christmas.  She won the Bingo game, making the day complete.  Christmas magic is alive-you just have to look for it.

I have not forgotten the real reason to celebrate the Christmas season.  Jesus came to save us as a tiny infant.  He humbled Himself so we could see and believe.  The miracle of His birth is beyond my human understanding but I trust His perfect plan without question.  I believe the Christmas magic that is all around is a sign of His perfect love for us.  An opportunity to set aside our everyday worries for a moment and focus on all that is good and right.  Look around you and see if you agree.

 I am ready to share more about our visit to the epilepsy clinic last week.  I have something really big to share.  I feel like I should whisper when I say it, even though it is not a secret..........We are beginning to eliminate Angie's last seizure medication.  Verrrrrrry slowly.

I have decidedly mixed feelings about having our girl without any seizure protection at all, but I agree with the doctors that it is time to try.  We will taper her dosage down over the next 2 months and if there is any sign of seizures, we will change the plan.  Angie has always lead the way in the past and I have no doubt that she will show us what she needs this time too.

Seizure medications have side effects and they can be really detrimental.  This particular drug causes agitation and cognitive delays. Who needs that?  There can be long-term effects on body systems, also, and Angie has had a boatload of drugs in her system over the past 5 years.  Why not try?

I have been asked if we will have Angie's g-tube removed if she is able to stop taking seizure medication.  The honest answer is, I don't know.  The medications, the g-tube, the special bed, the human supports we have in place, the many specialists and therapists- these all provide security and each layer that is removed leaves us a little more vulnerable to the "what if?".  To be sure, I am living less in the "what if" than I did in the past.  The days of keeping an overnight bag packed and a full tank of gas in anticipation of a middle-of-the night trip to the hospital are long gone.  The mind does not forget, though.  Sturge-Weber syndrome is a progressive disorder.  We have experienced a reprieve from the very worst outcome so far, but we are aware of the continuing risks.

What to do?  For now, we will just bask in the everyday wonder of this child and her miracle.  We don't have any decisions to make today that cannot wait for tomorrow. We have six healthy children and who could ask for more?  Our family is renting a home at the coast this weekend and all six of our children will be under the same roof overnight for the first time in years.  What more could a person ask for? We are elated and decisions and worries can wait.

I am going to end this most serious post with a few pictures of our adorable little elf from the Kindergarten Christmas program last week....

Throwing it into the pile

Today had a somewhat surreal feel for me.  It felt like God had a lesson for me everywhere I turned.  I left the house this morning already feeling emotional about Angie's appointment at the OHSU Epilepsy Clinic.  We first visited the clinic in December 2010 after being told that Angie was not a candidate for surgery to treat her seizures and that all medical options to address the life-threatening seizures had been exhausted.  That day we found hope and every trip back to the clinic reminds me of the long journey to surgery 6 months later.

Angie and I had some time before her appointment so I decided to stop at New Seasons to do some shopping and have lunch.  Shopping completed, we sat down with our food and I noticed a tall young adult bustling about the room.  He clearly had a developmental delay or disorder and I watched him work in awe.  He talked to himself and made repetitive hand motions, but he was working hard.  My kids can have jobs when they grow up!  Yes! I got up to get water for Angie and I struggled with the water dispenser.  Before I knew what was happening, the young man ripped the glasses from my hand wordlessly and filled them quickly and expertly.  I turned to thank him and he was glowing, so thrilled to be able to help, but he walked away as if not knowing how to respond to my thanks.  I think I love him.  What courage.  What strength to use his skills productively.  He brightened the room and it seemed as if the guests were happier for his presence. I'll bet his mom thinks he is a miracle.

We arrived at the hospital a little early for the appointment and as we waited I observed the families around me.  I always expect to see sick kids when visiting a children's hospital and sometimes the children are desperately ill.  Today, the epilepsy team was in a different setting than usual, the Child Development and Rehab department.  The children in this waiting area were children with "Superpowers" as my blogger friend Chrissy calls children who grow or learn differently.  Each child's Superpowers were different but all were clearly challenging.  Several were non-verbal.  I watched parents sigh, yell, roll their eyes, look to the other parent to chase the child this time, and appear completely overwhelmed. Weary. Sad. Afraid.  I wanted to help them, every single one.  But I felt completely powerless.  Their journey is theirs alone. At one point, I had to restrain myself from running after a mom who looked especially upset and exhausted.  I was reminded of the Pinterest pin below:

Think about it. Wouldn't you?  After today I know it is true.  At the same time as I was feeling helpless and sad watching the other families I was overwhelmed with gratitude for the beautiful life that God has given me.  I needed this lesson today and God, as always, delivered it right on time.  My children may have Superpowers, but they can walk, talk, laugh, and express their love in multiple ways every day.  I have been given so much.

Our time with the doctors was like a reunion.  Angie told them all about "Kindergarten school" and showed off some of her new skills.  We discussed some changes to her treatment, which is something I am going to save for another post.  It is a lot to absorb.  Dr. Wray asked if we would come to help him teach his medical students about hemispherectomy and Sturge-Weber syndrome again like we did last year.  I can't believe it has been a year!  Dr. Wray said that his students told him that meeting Angie and hearing her story was their favorite part of the class because it made the information real and relevant.  Go Angie!

As we pulled into the driveway at 4:15 this afternoon, Angie asked, "Is it jammie time?".  I wish. I guess we both experienced the day similarly.  I feel like I have traveled a thousand miles today and have arrived at my destination an older, wiser version of me.

So, I challenge you to throw your problems into the pile tonight.  Don't leave them too long before you grab them back (you wouldn't want someone else to snatch them) and look at them closely.  There are lessons and blessings to be seen in each one.  Miracle and wonders all around us.  I'll bet you will keep yours too:)

"Before" and "After"

I want to tell you about two wonderful people who have come into our lives and I have sat here for about 30 minutes trying to find the words. I want to make sure I am able to convey how much these two mean to our family and how our lives are better for knowing them.  You know how an event occurs and you start to define your life by "before" and "after"?  This is one of those times.

We met Heather when Jordan was a helper in her kindergarten classroom two years ago.  We only knew her peripherally then and had no idea how she would impact our lives.  We are thankful that Heather is now Angie's kindergarten teacher.  Jeff became our family caregiver in April of this year and that is when our "after" began.  We were struggling to meet the needs of our family and to fulfill all of our other responsibilities and we needed help!

These two have a heart for children and they have dedicated their lives to helping other people's children to learn and grow.  They spend their free time thinking of ways to benefit the children in their lives and I am grateful for their tireless efforts.  As I have mentioned, our children have some challenging behaviors and that is kind of an understatement.  Jeff and Heather have stood by us non-judgmentally and have worked hard to help us address the behaviors and to come up with strategies to minimize the behavior.  I am sure they sometimes go home at night and wonder what kind of crazy family they have become involved with, but they never let on to us.

Yesterday was a snow day in Clatskanie and Jeff and Heather braved the weather to come over so I could go to work.  Nothing warms a parent's heart more than seeing your child's joy in the presence of those you have trusted to care for her.  Angie is elated to spend time with Jeff and "Ms. Stafford" and I never need to worry while I am away.  That is a priceless gift.  Josh and Levi, although they require much less supervision than Angie, also look forward to spending time with Jeff and Heather and have had memorable experiences on their road trips together.

They made snow angels yesterday and I love the look of joy on Angie's face in this picture:

I have been thinking a lot about family and what it means.  The holidays, I guess.  Growing up, family always meant my parents and brother and the large extended family that lived in Astoria.  I grew up with grandparents, aunts, uncles, and cousins close by and I loved being able to spend time with them.  Today, I see family much differently.  I still love our time with our families.  Toby and his three brothers are hilarious when they get together and I love my sisters-in-law dearly. My mother and father-in-law are like parents to me.  But family is so much more.  Family is the people who surround you when times are tough, not just in times of celebration.  Family is the people who step in to give you a break when you are exhausted.  And call you on the carpet when you claim to be "fine" when you clearly are not.  They are your supporters, your listening ear, and your partners in doing the hard stuff that comes along in this crazy life.

Toby and I are grateful to have Jeff and Heather as family and we are thankful that God placed them in our lives at His perfect time.  Just when He knew we needed them.

Recovery mode

My plan to get the kids back on track is moving right along.  A few bumps here and there but a relative calm has settled over the house and I think we will soon recover from the nasty holiday weekend.  Whew!

Angie had an occupational therapy evaluation yesterday in preparation for her to start attending weekly therapy visits.  The evaluator, Laura, is Angie's long-time occupational therapist and Angie was thrilled to see her again.  We have been on a break since August when Angie's insurance coverage for therapy ran out for the year.  That is another story-my constant frustration with insurance coverage.  Another time.  I am working on using my Nice Words.

Testing days are hard for me as they are for most parents.  I see parents come to Progress Center every day with the same deer-in-the-headlights, "please tell me my child is fine" look that I must have had. Even after all these years I know I do.  I love those parents.  I want to take them home and take care of them.  To tell them that even if their child is not "fine", he or she is PERFECT and will teach them what is really important in this life.  And bring them unimaginable joy.

Angie performed well on the evaluation, even surprising me with some of her skills.  For example, her ability to hold fabric under her chin and fasten and unfasten the buttons in it with one hand.  Who knew?  Despite my pride in her adaptive abilities, I know that her scores were frighteningly low.  Laura, bless her heart, did not share the actual numbers with me.  We must have had a silent understanding that we both knew what we knew and it would not define the Angie that we both love.

After the testing, Angie and Laura got to play:

As we walked out of the hospital, Angie said to me, "Mom, I love Laura and Laura loves Angie." So, true, my love.  I am so glad she knows and feels the love.

Today, I attended a Citizen Review Board hearing regarding Angie's DHS case.  The CRB reviews each case every 6 months and serves as oversight to make sure DHS is complying with state child welfare laws.  I did not expect any surprises and there really weren't any.  The same CRB has watched Angie grow and thrive over the years and they are always overwhelmed by her progress.  It is a good reminder to me that although the day-to-day challenges can be disheartening, the big picture is that this child is a miracle!  Every. Single. Day.  She is alive and she is thriving.  Boom!

If you are still reading my blog, thank you.  This blog provides an outlet for my thoughts and feelings as my family continues on this journey.  Once I write them here, I try to consider them "given away" and not to dwell on them.  If you are on the receiving end, that is a gift to me and goes a long way towards helping me stay sane.  Thank you, my friends, for your important role in the journey.

The Calm After the Storm

I have a confession to make.......I couldn't wait to return to work this morning after a week-long break for Thanksgiving.  It felt like a safe haven after a long war-or something like that.

Our children need structure and consistency like they need food and water.  Thanksgiving, Black Friday, a weekend of late nights, and the excitement of decorating the home for Christmas have temporarily wiped out all forms of structure and consistency we had developed in our home.  Fear not, though, this mama is taking it back.  We are going to be back on track this week OR ELSE!  And the "or else" is that I will take a one-way trip to the crazy house, as I often joke with kids I am going to do.

Really, though, we endured multiple meltdowns, sibling battles, curse words, flying objects, naptime rebellion, and worse.  Every day for the past 5 days.  Enough is enough.  I try to stay positive most days but I am tired.

Ranting aside, we did enjoy working together yesterday to get the Christmas decorations out and getting the house ready for the next holiday.  Last night, we lit up the tree and it was as if a calm overtook our home.  Finally, peace.  Oh, and it was bedtime:)

What does she think?

She loves them!!

See?  Peace.  It has to be magic!

I hope your families have experienced a similar calm, even if it was preceded by a wild and crazy storm.  Sometimes that is the calm we appreciate the most, don't you think?  Tonight, I read a quote by Sigmund Freud that encouraged me-"One day, in retrospect, the years of struggle will strike you as the most beautiful".  I will hold onto this thought and tonight it feels like enough.

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.

Your children amaze me

Your children amaze me.  No, really. I know I have mentioned before how I am touched when other children are kind to Angie but I want you to know that I see it every single day.  Handing her a pool toy that is out of reach.  Helping her into a chair that is just a little too high.  Holding her hand on the playground at church.  Sharing a snack at a party. It just goes on and on and I am falling in love with the children of our community one by one.  Thank you for raising such wonderful, caring children who will be the wonderful caring adults of tomorrow.  Please know that their kindness never goes unnoticed or unappreciated.

Angie is absolutely thriving.  We had a whirlwind weekend filled with Normal. My favorite.  We went to the homecoming game Friday night so Angie could celebrate her friend Will's Princedom.  Is that a word?  It was freezing cold but worth every minute.  Saturday, Angie was invited to the pool with her classmates for a birthday party.  I have to admit, I was nervous about this one.  I was not at all sure that it was responsible to let her go into the pool without an adult.  I put on my Brave, though, and put a life jacket on my girl and watched her go.  And she did.  For over 90 minutes that girl swam and played with her friends and her momma sat on the edge of her seat, watching:)  Worrying:)

Sunday, though, was my favorite day yet.  Maybe ever.  On Sunday, Angie and I joined our friends in Portland for Disney on Ice.  I don't even know how to describe the experience.......amazing, stupendous, heartwarming, and fabulous all fit the bill.  I did not know how to describe the ice show to Angie so she really did not know what to expect.  Somehow we got seats in the 2nd and 3rd rows, only a few feet from the ice.  Thank you , Joelle.  It was perfect!!!  Angie's awestruck face put a smile on my face and it stayed there for the entire 2-hour show.  She is planning to dress up as Minnie Mouse for Halloween so seeing Minnie in life-size magic in front of her gave her the giggles.  It was a late night, but totally worth it. Unless you ask the school staff that had to deal with Miss Cranky Pants this morning.

They are struck speechless!

Princess Angie

So grown up!

Last night was a treasure.  Angie and her friend Ky talked and laughed in the car together like kindergarteners do.  Angie listened to Ky tell jokes and by the time we got home she had told a few of her own. Angie told one of the adults in the car to "use your nice words".  It was perfect.  I can't stop smiling.

I had some serious stuff to write about here but this has completely taken over my attention and I had to share it.  The serious will wait for another day.

Did you pray?

You prayed, didn't you?  Well, it worked!  Miss Angie had a much better day today and she came home with a chart full of stickers.  She could not wait to tell me about it when I got home.

Tonight, I took Angie to a harvest party at church.  We only stayed for about half of the party because it was bedtime (we try not to deviate from the routine on school nights) but she had a great time with her friends.  She participated in the games and decorated a pumpkin cookie before we had to leave.  I loved watching her follow the rules of the games along with the others.  There was a "cake walk" and each time the music stopped, she asked the child next to her if it was okay to take the neighboring seat before sitting down.  So sweet!  On the way home tonight, she said, "I am so happy, Mom!".  My mommy heart is happy too.

Angie has a speech evaluation in Portland tomorrow.  She has been out of speech therapy since her insurance authorization ran out in July because her insurance only allows for a specific number of visits within the calendar year.  I am anxious for her therapist, Chris, to see her and for her to show him the amazing gains she has made in the past few months.  Chris has been Angie's speech therapist since she left rehab after her surgery.  He knows how far she has come.  Still, evaluation results are always hard to hear, as the results are presented in terms of what she can't do rather than what she can.

We have been the recipients of so much kindness recently.  People don't always realize how much a kind word or a simple text message can mean when it comes at a low time.  Or, a small action without expectation of payment or thanks.  They mean the world.  Don't stop doing them, not just for us, but for anyone.  They mean everything.

Our "Stay Home" Days

Today was one of what Angie calls our "stay home" days.  Not because we always stay home, but because I do not go to work.  She asks each morning if it is a "stay home" day and today it was!  Here is what our "stay home day" looked like today:

Blowing Bubbles

 Making Halloween Treat Bags 

Snuggling With Mom

I love our "stay home" days, too.  Angie is so much fun to spend time with and she makes me laugh.  All. Day. Long.  I can easily become WAY too serious so the laughter is truly a gift.  

I am sharing the highlights, but since I said I was going to be real on this blog, I will share the low points, too.  Life isn't all about blowing bubbles, after all.  Angie woke up crabby and her mood did not improve at school.  The poor substitute teacher got to hear all of Angie's "choice words" as Ms. Stafford calls them and I am sure she was less than impressed.  I know I was not impressed.  This afternoon, Angie was supposed to have a family visit that didn't happen and although she didn't realize it was scheduled, I was completely disappointed and I cannot imagine anything that would keep me from visiting her once every 3 months.  That is about as real as it gets. You make time for what is important to you.  

Tomorrow is a new day. We have saturated our conversations with examples of "nice words" as opposed to "naughty words" and I know Angie is taking it in.  She has an amazing team of people guiding her at school and they have set the scene for success.  It is coming.  I just know it.  Now, maybe we can all pray for it too, just to make sure?

Mom to Mom

This is how grown-up and "Kindergarten" our girl has become.  I wonder every day at the growth she is experiencing in school, and at home.  It is hard to put into words, so I will call it "learning the ropes".   She is figuring out how the world works and is learning to adapt her behavior.  Hard work.  Every day, she shows us new skills and knowledge and it is thrilling to see!

I was contacted this week by a mom who could be me two years ago.  "K" has a daughter who is almost 3 and her daughter has bilateral Sturge-Weber Syndrome like Angie.  K's daughter is experiencing status epilepticus, which is a medical term for seizures that are nearly impossible to interrupt and last long periods of time.  Status epilepticus causes serious developmental decline.  She has these major seizures every month or so and the doctors are running out of options for treatment.  Deja Vu?  I think so. The doctors have said surgery is a longshot, even though that is their recommendation, and they have given the family little hope for long-term seizure control.  

Oh no you don't!!  We know better.  K and I have had numerous email exchanges and with each reply from her I hear her hope growing. She is terrified and desperate.  I completely understand.  And we both know that each child with SWS is unique.  But there IS hope.  I would be lying if I said that meeting K has not been as beneficial for me as for her.  My own hope is renewed when I recount our experience and I know that God is using Angie's experience for good.  I look forward to following her daughter's story and I am hopeful that another precious child can experience the renewal that has occurred in Angie.

This is what life is all about.  We all have experiences that can be used to offer hope to another.  I know we do.   That is how God set this life up for us.   Every single one of us.

Welcome to my new blog!

Well, I finally did it!  I have been considering replacing Angie's Caringbridge site with a regular blog and now I have taken the plunge.  This blog is a leap of faith for me, and a symbol of leaving past worries and anxieties behind.  We do not NEED a medical webpage anymore:)

I am honored if you have chosen to follow me and I want you to know that I am committed to being honest and real on this blog.  Our family is far from typical and we have some pretty crazy experiences that even I wouldn't believe if I weren't smack dab in the middle of them.  This blog is a place where I hope to share the entirety of our experience as we continue to help Angie heal and grow and as we ourselves grow at the same time.

I have said it before and I am going to say it at least once more.........our family experienced a miracle on May 27th, 2011 when Angie was given a new hope for her future.  We live each day with that awareness and we do not take anything for granted.

Thank you for joining me here, my friends.  After all, many of you have your own special role in our miracle.