Patience, attitude, the half-brother to Jesus, and Woods coffee

A few trials have come my way.  Such is life, right? 

Every single person reading this has been faced with trials.  Some big, some small, some life changing and life ending, some with new beginnings....each invoking their own pain, their own joy and a certain attitude that over comes us as humans. 

I'm here to tell you, I'm a wife.  A mother.  A sister, a daughter, a friend.  I'm an employee.  A farmer.  A Jesus loving believer.  And with all of those roles, comes a few issues of late.

Our pastor, who we have enjoyed for 10 years, who has preached at our church for approximately 28 years, was dismissed because the membership of our church wanted a new pastor to grow the church and take in a new direction (as I understand the issue).  I was confused, angry at the decision, sad for my own loss in a great teacher and anxious for what this change means to my faith.

My daughter, a freshman in college and a recovering alcoholic, continues to work a great program in recovery but her mental health struggles are now larger and more evident without the self medication of alcohol.  I am sad that she has such a struggle with co-occuring disorders, and worried for her future.  Beyond anything, I want the best for each of my four kids and strive everyday to be the mother they need, and at times I feel an absolute without a doubt failure at that task. 

My son, a kindergartener with symptoms and habits and behaviors from multiple developmental delays, struggles to be a kindergartener, struggles to be ready to learn and how the teachers plan for his access to an education continues to seem noncoordinated.  I am frustrated at what seems to be an unordinate amount of time, not just from me but also all the teaching staff, in coordinating services and people and care within systems that I thought and had dreamt were suppose to be coordinated already.  I'm disappointed that systems are just as imperfect as me as a human being.  It's really confusing and non sensical at times.

My oldest son is preparing college applications to University of California schools.  I cannot even adequately share how much his absence in my daily life will change my positive and fun loving attitude, he and I share a very mellow outlook on the human experience, often keeping each other in check, I sincerely enjoy parenting him and all that we talk about and learn from each other. 

The farm has taken much time this year to prepare for winter.  New drainage systems in the pastures to allow for standing water to drain quicker has taken much efforts by my sweet husband to dig, and redig, to design and redesign... and redig, ugh.  Lots of money thrown toward drains. 

Our marriage has taken a back burner to the struggles of late, and that is never what I or my husband intend to have occur.  We celebrated our 10 year anniversary and we both feel.... "we need a redo on that celebration".   We love to talk and dream and conspire but let's face it with life it's harder to fit in the "planning" portion of a marriage.

A friend died.  A dear sweet beautiful and wonderful mom of a four year old boy.  A colleague, a coworker, a friend to drink coffee and catch up with.  Someone that is still a follower of our family blog even though she is following from heaven now.

My parents are getting older.  Funny concept huh?  And my mom is scheduled for knee surgery which is much needed after many years of pain.  But the thought of my parents, who gave me such an ideal and sheltered childhood, aging... getting older... is pressing on me lately.  It makes me more concerned.  Makes me ask them if they need help preparing the house for winter. 

Somehow, I allowed the recent trials to consume me.  To have all of my thoughts channeled just to issues at hand.  I lost my view, myperspective.... and for a sheet moment I lost the belief in my faith. 

So, I checked myself into Woods coffee on a Sunday evening.  Kicked the miscellaneous teenagers that were lounging on the couch near the fireplace off after I overheard they had been there since 3pm (it was after 6pm).  I curled up on the giant couch with a carmel machiotto coffee and my bible.  Turned to the chapter of James (which was written by Jesus' half brother, and may have been one of the first books of the new testament.  Interesting facts!)  It was the last sermon that I listened to my pastor preach.  It was one of those profound experiences that you sit in your church and feel, this is all for me!  So much so, that I wanted to read the book of James in full (which is only five chapters), and thinking about the application to my life was where a cup of coffee always helps!

"..count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing."  James 1:2-4

I thought I knew patience before our twins were born.  I thought I knew patience before collaborating with education.  I *think* I know patience now.  Well, the fact is, by testing my faith, it continually teaches me patience.

"But be doers of the word, and not hearers only deceiving yourselves. For if anyone is a hearer of the word and not a doer, he is like a man observing his natural face in a mirror;  for he observes himself, goes away, and immediately forgets what kind of man he was. But he who looks into the perfect law of liberty and continues in it, and is not a forgetful hearer but a doer of the work, this one will be blessed in what he does."  James 1:22-25

I am always concerned that I don't share my belief systems with other people ("hey look I'm a Christian"), but rather that I try to be Christ like, as C.S. Lewis in "The Great Divorce" "There have been some who were so occupied in spreading Christianity, they never gave a thought to Christ".  Maybe, by showing others compassion and grace they will feel loved.  Calling yourself a Christian does nothing without the actions.

Recently I read an article on Taoists philosopher, Yun Xiang Tseng, theory "Game of Life". In this "game", there are several players, "the victim", "the persecutor", "the hero".  According to Tseng, each of us plays each of these roles throughout our daily life.  He warns however, that sometimes these roles are not what they appear. When you are a hero, you are sometimes a victim. When you are a victim are you seeking to prosecute? When you are a prosecutor do you believe you are a hero?  The secret he says, is to enjoy the position you are playing, but when the day is done, remove your mask, and separate yourself from your role. This he says, is the key to happiness. To the Taoist philosophers, emotions are like decorations in the living room. It is important to notice and explore them; but when you are done it is more important to place them back upon the shelf where they belong.

My attitude had gotten in the way of me processing thru the recent trials.
"Do not grumble against one another....as an example of suffering and patience...we count them blessed who endure. You have heard of the perseverance of Job and seen the end intended by the Lord—that the Lord is very compassionate and merciful."

Over the past year I have learned that grace can be found in the moments of the day that I allow others the dignity of working thru their own decisions, on their own path of struggles, and not being the solution but a resource to their success. Grace is sometimes a verb which is defined by a characteristic of honoring someone else with respect and allowing them their achievements thru being their own hero.  Solving their own problems.  And in that my attitude has changed. 

I reread "The Pastoral Practicality of Law-Gospel Theology" Tullian Tchividjian (who is Billy Graham's grandson, long story) who says "If we really love people and want to see them truly set free, we have to get out of God's way and let the crushing work happen so that the gospel can do it's curing work".  I've seen far too many people 'rescued'  by parents and family members which has actually ruined their lives because their fall has been cushioned by people that "love" them- robbing that person from ever experiencing true deliverance because they never experienced true desperation.  "God's office is at the END of our rope" because grace always runs downhill-meeting us at the bottom and not the top.

I have a vision for this next month.  To set my sights on a goal of being humble, loving and patient, wise, intelligent, genuine and sincere and celebrating opportunities to be a resource to people, but to keep my perspective that it's God's plan and He is control and I'm thankful that these are all trials to count as joys to my life, even in death... I can celebrate her friendship.  The human experience is profound.

Scouting for sanity

We are settled into school routines, Hannah at the University (her dorm and roommate are so cute), Nate full time at Running Start, and the twins as active little kindergarteners.  Go ahead and laugh about the difference between helping my oldest two on college level math and then helping my littles on coloring "only THREE ladybugs" on the page.  I know you are laughing with me, right?

All the after school activities are in full gear.  One of the sweetest activities is the Awana church program that Liam attends at a neighboring church.  It's only his second year but already he is accomplishing tasks within their program.  Earning "badges" for his Awana vest.  Patches that show his accomplishments.  Colorful and bright and slightly coveted by him.  Badges that are symbols of his skills and his knowledge.

So I got to thinking....
What would it be like if "parenting children with special needs" had a scout program? Brimming full of badges.  And we wore some type of silly sashes or vests with all of our colorful patches on it?  Our skills and knowledge would be sitting ontop our puffy little chests with pride.  Goofy huh?

Maybe the "scouting for special needs" badges would include a beautiful red heart shaped badge because so often as parents we wear our hearts on our sleeves, get a lil emotional at times, convey our thoughts with the most passion and belief possible.   After all, some of us have watched our children almost die.  A few times.  And a few people reading this have lost their child.

There would be hands on activities in our "scouting for special needs".  Similar to how I image boy scouts have "how to build a fire" on their week long campout.  Ours though would include a hands on lesson for how to change a five year old boy's poppy diaper.  While he decides that all 42 pounds of himself needs to be in the next room.  At the exact moment that you remove his diaper.  And he runs.

Or for some friends it would be cleaning a trach on their child that has. the. most. amazing. defensive. moves.  Like karate kid on fire while you are trying to clean it.

Or maybe for another child's parents it would be a hands on activity like oxygen tank wrangling.  I'm sure a badge with a cute rodeo illustration of a mom wrangling an oxygen tank up the front house stairs and over a few toys would be great.

And let's not forget the "replace the feeding tube, in the dark, alongside I5, while a state trooper tries to 'help' you" activity.  That poor trooper was a wee bit traumatized, thought I would get the 'first responder' badge after she nearly passed out.

We could even have a week long "scouting for special needs" camp.  Which of course would take place in a hospital.  80 miles away from your family and friends.  Fairly isolated.  With just your sweet struggling ill child, yourself, a half couch to "sleep" on, and your hair looks so greasy for many of those days, you resemble yourself back in middle school.  The camp would take place during the week of Christmas.  Maybe a cheery colored badge with a tree on it?

Maybe we could have a fee structure for our "scouting for special needs" program that is so complicated it involves insurance companies, personal excel worksheets to track explanations of benefits, nonsense limits on activities that are much needed, waitlists to get into activities and use your entire savings.  A few times over. This badge might have a dollar sign and a telephone on it.  Because on the phone about insurance or care coordination will happen, often, in this program.

I'm not sure if boy/girl scouts has a foreign language badge, but I'm here to tell you "scouting for special needs" would have one.  And the test for your understanding of that foreign language would happen on day one.  With no textbooks to read and memorize the definitions of the words.  Only your presence at grand rounds, sleep deprived, when your child has been admitted, and everything is verbal and the doctors think you understand.  It is all latin.  Or greek.  It's the "medical" foreign language. 

And of course you wouldn't receive your "scouting for special needs" badges unless you enjoyed a lot of humor.  Sometimes fairly dark humor like in this post.  Sometimes a lot lighter though and very fun.  Best when your husband pranks your child's physician, as he is about to discharge your sweet baby and has come to your hospital room only to check for bloating and distended tummy (which is totally flat and our bags are literally already in the car after three weeks of being inpatient), your sweet hubby stuffs something under your child's gown so his tummy looks realistically bloated.  And your doctor laughs so hard when he figures out is a joke.  And five years later sees you in a lobby at Children's and asks where your crazy husband is.  And laughs again.  Just keep it real.  And fun.  Because we know and have seen, life is fragile and oh so very short.

Humor is best also when shared with friends and family and thru some amazing support groups like Whatcom Center for Early Learning playgroups, Parent to Parent support meetings, Arc of Whatcom County and Down syndrome outreach events.  Support in getting to know other parents.  And realize it's totally okay to use your humor and laugh about the most painful experiences. 

In the end of "scouting for special needs" the program would graduate you. 

But it is you that has gotten so much more from parenting a child with special needs.

More character.

Patience.

Compassion that makes you ache.

Enjoyment of every single moment.

A need for large volumes of coffee.

An ability to be present, in the moment, in a split second.

Laughter.

An ability to cry like you have never seen a person cry before.

Honesty.  And it bears repeating, honesty with yourself and to others.

Forgiveness. Period.   

Love for your family that is so intense.

An absolute faith.  That is so freeing. 

A unique ability to fall asleep, when given a pillow and a blanket. Or one or the other. Anywhere.

Profound Joy

That you want to share your child with the world.



Motherhood is not a competition

Today is my birthday

I'm 44 years old. 

And I'm kinda feeling it this year (big grin)

I've been employed in the best job in the world

motherhood, for almost 19 years

And you would think that by now

 I would understand that my own experience as a mom is unique.

My children are each unique. 

Four beautifully and perfectly made kids. 

Each with their own strengths and weaknesses.

And yet, from time to time, in the small free moments of the day

I cannot help but begin to compare myself to others

Or I start to think about why can't my child be just a little more "x", like hers?

Or why can't I be less anxious, like she is always so calm

Or maybe if I went to the gym more, I'd have more energy like her

And I forget

That motherhood is not a competition or a series of comparisons

It's a unique experience

One that I never thought would turn out like it has

Never. Thought.

And for all the times that I started to compare myself or my kids to someone else

I now realize are little lost moments

So I'm thinking for the next 44 years, by the grace of God

motherhood will be absolutely savored

for whatever it is

the joy, the grief, the friendships with other moms, the parenting of my four

because it's all mine

and I need all those little moments.

Why Tommy should be in your classroom

"Take the first step in faith.  You don't have to see the whole staircase.  Just take the first step." 
Dr. Martin Luther King, Jr.

Edited 10/8/12 for how it will appear in P2P newsletter
Tommy and Liam started their Kindergarten education with a two hour “orientation” this September. This was provided by the three kindergarten teachers at our local elementary school. Each classroom was divided into half, with a morning orientation for half the students with their families, and an afternoon orientation for the other half of the students and their families.  Liam loved meeting his teacher, classmates and seeing his Kindergarten room which he would be in the next day. Tommy really enjoyed seeing the other kids and wanted to explore the room, touch everything and everyone, and walk the hallways.  Although they are twins, they are as different as day is to night. Both with their own beauty, both perfectly made, and both needed as a student in Kindergarten. I cannot say what the other parents at orientation were whispering or why they wanted to stare at Tommy. Maybe it’s because he is fairly loud at times. Maybe it’s their first time seeing a person with Down syndrome. I didn’t have time to ask them. But it felt as though I would be embarking on a journey where I had no handbook. Only the knowledge that Tommy is an individual. An energetic five year old boy. A brother, a son, a friend to most that he meets. A child that has a keen emotional intelligence, a boy that loves to play basketball. If those parents wondered “why” Tommy was there for orientation, maybe I would share with them these thoughts.

Today’s student body isn’t “typical or normal”. 2 out of 10 children have a mental health disorder. 1 out of 6 children have a developmental disability. 1 in 110 children have autism. 6 million children have food allergies, some
of them life threatening. Diagnosis is becoming more sensitive given modern science and services or therapies for those children more important. It’s harder to see a classroom of students without some of those students having special needs. Often invisible special needs. Our family shares an interest with all the other parents in the classroom to figure out how inclusion works. How Tommy can join the other students and learn and play and access his education. Inclusion isn’t impossible, it just takes teamwork. A sense of community needs to exist within the school and that classroom for inclusion to work. Parents and teaching staff all work together for inclusion to work.

If you are not focused on a classroom to include EVERYone then you are still practicing segregation.  History shows segregation based on gender, race, faith, disability.... only further marginalizes.   Societies that marginalize people, could also hate them.  "if he were in our classroom he would disrupt the lesson and ruin it for 26 students".  "he wouldn't be comfortable".  If you are a person who professes to be against bullying at school, but think that not allowing students from the Life Skills room into the general ed classroom is okay, you are condoning that SOME people are different and they don't belong.  That is a form of bullying.  It simply needs to be overcome at a very early time.... let's say Kindergarten.  Where kids can get a strong sense of EVERYones value and include each person in the day of fun and lessons. 

When done correctly, inclusion is great for every student and teacher and support staff. It’s a giant school and family community that celebrates strengths and works to even out the differences thru support. Children bring all kinds of gifts to this world. Different levels of intelligence, learning styles,
behaviors... and when working as one, it works. It will take parent volunteer hours and special hearts of teachers and support staff to make inclusion possible.

“ The IDEA (Individuals with Disabilities Education Act) was originally enacted by Congress in 1975 to ensure that children with disabilities have the opportunity to receive a free appropriate public education, just like other children. The law has been revised many times over the years. The most recent amendments were passed by Congress in December 2004, with final regulations published in August 2006 (Part B for school-aged children) and in September 2011 (Part C, for babies and toddlers). So, in one sense, the law is very new, even as it has a long, detailed, and powerful history. It’s a great law! Complicated, to be sure, but well worth understanding and implementing."  NICHCY - National Dissemination Center for Children

Most importantly, the IDEA is about making a community, a society, accessible to everyone. If a child has a peanut allergy, you are legally required to make his school safe. If a child has a behavior issue, you are legally required to create a safe environment. And as a parent I will volunteer and help in the classroom and with the staff as much as possible to make
this work. And in the process, friendships amongst children will be formed so that someday we won’t notice differences.

Maybe awareness of people who experience developmental delays needs to occur more in Kindergarten. Maybe starting at orientation. Maybe by a parent to other parents. Inform yourself, like I did, through some amazing girlfriends and research and then inform others. Tommy needs to be in your classroom!

Tommy is starting to learn the routines in his Life Skills classroom.  This classroom will provide differentiated instruction, mostly I believe thru discreet trial trainings and a specific curriculum.  Which will meet him where he is engaged and learning.  Then he will spend time, hopefully soon, with general ed Kindergarten for music, pe, recess, lunch.  And I can help the other parents understand why Tommy needs to be in the Kindergarten classroom.  Inclusion, do it, as much as you can. 

Liam is LOVING his Kindergarten experience, so many new friends and ideas. 

Today's blessings

I've spent a little bit of time lately getting a little sad over hard stuff....... and small stuff ........and just plain "things" in life.  Just a little bit of time.  But enough spent on that to remind me to focus on all my blessings.  And there have been so many lately I wanted to share.

Today started off with me REALLY sad for a variety of reasons.  I don't get that way often, I'm usually a fairly positive person, but gee whiz what a pity party there was in my home this morning!  My great aunt Sally was probably rejoicing in heaven knowing her genetic pool passed on the ability to cry "a good cry" and use a substantial bit of kleenex. 

After the tears were wiped away, we headed out for our first appointment which was at the ENT.  Let me help you understand some of my "feelings" lately by sharing that I forgot some of Liam's "needed medical care".... you know when the dr tells you, follow up with us in a year.... or.... he will need that ear tube out in two years.  Well.  When you are the healthy twin..... your mom forgets your medical needs a wee bit. (And she is pretty sure she overmedicated you thinking you were the unmedicated other twin a few times, but that story is for a different day).  A few years past the needed appt to 'take out' his remaining ear tube, our pediatrician saw it at a well child visit recently.  Totally lose.  Not helping him hear.  But she couldn't take it out.  So off we went to the ENT today with all my mommy guilt of forgetting about this need waded up inside me.  Liam was very calm and such a great listener that the dr had a great peak in his ear and after deciding he wasn't going to be able to pluck it out.... wala!  The dr succeeded with great thanks to his patient and we now have no ear tubes in Liam.  And I'm writing it here so I don't forget, ha ha.  I am so blessed with an obedient child, great local medical care, and forgivess.  Children are such blessings.

We left the ENT and headed over to PeaceHealth Pediatrics to get Tommy his immunizations that Bellingham Immunology coordinated.  Since Tommy has Polysaccaride Antibody Deficiency he is moderately immune compromised and Immunology hoped to boost his own immunology before the twins started kindergarten.  But for some reason the communication didn't happen like it should have.  And I'm stuck with the twins, a stroller, Tommy in his walking harness... in an abyess of back to school kids vaccination overflowing lobby.  When suddenly I heard a nurse calling my name and our favorite nurse (who had left for Hospice employment) was back and she had all the immunizations needed ("you tell me what they said and we'll find the paperwork later").  Five minutes flat we had three people restrain the boy wonder that Tommy becomes when a medical professional slips on rubber gloves and pulls out a needled syringe.  Where exactly does that strength come from?  His defensive moves are amazing!  I am blessed with a mutual respect from medical staff that defies any expectations.  I truely didn't expect her to help us as much as she did.  But she was placed in our path today and for five years has been a blessing to Tommy and our family.

Next stop was to drop the dynamic duo off at Promise childcare for the afternoon to play with friends, learn about God, practice some preK skills and get some just plain fun with friends.  Promise has been such a blessing to our family.  They never blink an eye when we ask if we could come back for short term child care.  They always welcome us even though Tommy's wandering ways, nonverbal language and behavior issues make it a challenge.... they have open arms.  Every. Single. Time.  You bless me everyday Promise (Shari, Jen, Megan, Misty and everyone).

Sneaking in exercise is such a guilt ridden pleasure for me.  So I stopped by the gym (I got to a Christian gym Thrive in Ferndale) for a quick run on the treadmill and some ab work.  I had a packed afternoon planned with a vet visit and housework then dinner and a beachcombing walk so this was my only quick moment to work out. 

When I checked my phone and facebook really quickly.... I was feeling stressed and a wee bit down.  And then I saw a message from my nephew's wife Keeley.  She is heaven sent I am here to tell you.  ALWAYS encouraging.  ALWAYS kind and sweet.  She was sending me some of the kindest words I had heard recently and this post:

http://rachelmariemartin.blogspot.com/2012/08/dear-sweet-mom-who-feels-like-she-is.html

Which hit home in a way that caused this momma to have tears streaming down her face in the parking lot of the gym.  I'm amazed by God's "timing" ability.  And how he places the people you need, for "things you need", right smack dab in front of your face at the right time.  Keeley your friendship has always been a blessing.  Watching you be Christ like in your entire life has been such a pleasure. 

Finally home this afternoon for a vet farm visit.  This was probably one of the worse feelings for the week next to losing our dog last week.  Our goat had an eye infection from our local fair.  Fairly simple I thought from experience.  When we got her back home onto our farm our sweet neighbor had given us some antibiotic eye paste and sure enough for a few days our goat had clear eyes.  So after isolation for a few days I decided, well, that seems to be done so I'm putting you back in with your herd.  BIG mistake.  Last night I found my sweet goat completely blind.  Her eyes glazed over in a cloudy film. Her body bumping into her stall walls.  Her teeth grinding from the pain in her eyes. I was so upset at my own decisions and her pain that I started vomitting.  My hubby called the oncall vet and we were talked thru some decisions and ways to keep her comfy for the night (small stall and dark with grain hay and water).  So the vet came out and with IV antibiotics, pain relievers, a dyed eye test for corneal abrasions, eye antisthetic to relieve the local pain plus eye antibiotic ointment.... we were left with a goat that feels MUCH better and the vet has high hopes her vision will return fully.  She did mention that we were about the eighth family who had this "fair goat eye infection".  Insert grrr here.  The vet complimented us on our gorgeous nubian goats and then we decided together to do the same procedure to the ENTIRE herd.  We agreed it was a bit of overkill, but one of the kids in the herd had weepy eyes.  Great decision.  Hard on the back though.  And the vet is eight months pregnant.  God created such wonderful companions in farm animals.  And it's such a blessing to have great vet care for them.  A good vet who teaches you along the way. 

Tonight it's hot dogs for dinner (Liam's request), Nate is housesitting so he won't be here tonight, and we will head out to the beach for some shell collecting and relaxation. 

Hope you were blessed today too!

 

Sweet Sadie dog

On August 18th we had to make a tough decision and put our sweet 8 year old boxer to sleep after xrays showed she had a massive stomach cancer.

We were heartbroken.  But she was so sick and in so much pain from the cancer.  We knew she would want to go to heaven and be pain free.

Now we enjoy the memories of our sweet Sadie dog.  And her twin sister Cookie is so lonely without her.

This first picture is the night we brought them home, Hannah and Nate wanted SO BADLY to sleep with the puppies on the floor.  I remember this night and felt so lucky to have puppies and kids who adored them.  Very precious memory.

Colin fell in love with Sadie immediately.  She would prove herself as the very loyal, stoic, sweet tempered dog who was always the outgoing and adventerous one.

I loved little Sadie puppy too.

She grew into a lovable boxer gal that had a wiggle butt and a BIG smile.

She was always the thoughtful one of the pair.  Ever the thinker dog.  With her floppy boxer lips that often where found to have cookie crumbles or something else clung to them.

Favorite Sadie spot was somewhere cushiony.  Often times that was on the couch!

Sadie loved to be in the action shots.

Cookie and Sadie were always side by side for their entire lifetime.  For boxers that means alot of down time.  And Sadie is missed by her sister and her whole family.  We loved you Sadie doggie!

Peaceful walks in Montana

Just wanted to share with you what I saw for two weeks on my morning walks.  The stroller I was pushing kinda limited my ability to trapse thru the woods and take many more pictures of the woodland flowers but I thouht you might enjoy the peacefulness I found.