Wednesday, December 12

Six years ago

Six years ago today I asked the labor and delivery nurse to wake my husband up, I was ready to deliver the twins.  There was deep snow outside the windows of the Bellingham Labor and Delivery room.

I asked her for two tylenols and within minutes was ready to push Baby A, Thomas William McMillan, into our OB's hands.  Six pounds and thirteen ounces of sweet baby!

Twelve minutes (.... long .... minutes...), the ultrasound on my belly showed Baby B had not turned head down.  And without missing a beat, the second OB calmly told me to take a deep breath, and she reached to find two feet and delivered Liam Scot McMillan, our footling breach.  Seven pounds and one ounce.

Sorry for the details, but one person out there I'm sure likes a good labor and delivery story. 

Names in our family mean alot.  Hannah and Nathan are both old family names on the Schlagel side of my ancestry.  Hannah's middle name is her grandma Ilene's.  Nathan's middle name is his father Michael's name.  Thomas was one of my favorite cousins growing up and his middle name is my father's name.  Liam is the last four letters of my father's name and his middle name is Colin's middle name (and yes it's Scot with one two, old school scottish).  Three names are Hebrew, Hannah (Grace of God), Nathan (Gift of God), and Thomas (the Twin).

The twins were born on the 12th month, 12th day and 12 minutes apart.  Which today is even more wonderful thinking it's 12/12/12 for their 6th birthday!  Tommy's teacher shared that it won't happen again for 100 years, what a neat date today is.

Liam stayed on oxygen support most of the first day.  I really missed not being able to hold him but that rush into the world didn't help his lungs deflate and then inflate the way they should have.  Thomas was layed on my chest and after many attempts to breastfeed he was seen to be failing by Colin in various ways.  And even with a prenatal possible diagnosis of Down syndrome.... little did we know the rest of the story.  That his heart had two large holes.  That he had Hirschsprung's disease.  That the rest of the year would be spent restling with do not resusitate and quality of life.  Thank God to our miracles!  Including how the twins have changed us as a family, for the better. 

Happy Birthday Tommy and Liam.  Oh my you both have been treasures!

Wednesday, November 14

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 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.

Wednesday, October 10

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.
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.
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.

Monday, September 24

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.

Sunday, September 16

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. 

Friday, August 31

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:
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!

Thursday, August 23

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.

Wednesday, August 22

What works for us Wednesday

Boy do I have some catching up to do!  So many travels and fun experiences to share.  We have been busy so there will be a few picture filled posts coming your way.

But first a "What works for us Wednesday" for ya!

I thought it would be fun to give you "Tommy reviews" of a few of the places we have been lately.  Not any any particular order but here goes.

Tommy took his very first carousel ride and judging by his expression he gave it a two thumbs up.  I decided not to risk things by putting him ontop a horse, so him and I sat in a stationary bench on the carousel and he really enjoyed the motion, lights, sounds and watching his two brothers close by.  Tommy gives the Spokane Riverside carousel two thumbs up! 

Tommy has been on many, many walks this summer.  And although this photo shows us in western Montana at the lake house and lagging behind Nate, daddy and Liam.... Tommy liked sitting in his stroller and going on morning walks before the sun got too terribly hot.  Stroller rides in the summer time are a thumbs up from Tommy!

Sun hats are never, ever, a child's favorite piece of clothing attire, but alas when you are WHITE as a sugar cube and your hair has virtually NO COLOR to it.... your head becomes the most vulnerable place for a sunburn and your parents slap an Indiana Jones version hat on ya to keep the sunburn risk a bit lower. 

We bought two hats, one for each of the twins, and on Tommy's I sewed a chin strap to "encourage" him to keep the hat on.  But Tommy gave the hat a big thumbs up and no chin strap was needed.  Look at that nicely shaded little pale white face.  He even signed hat to request it be put on.  Tommy's review of the sunhat was positive~

And the funniest Tommy review is saved for last.  Writer's note: he DOES have a diaper on.  We arrived in Great Falls, MT for two days of visiting a dinosaur dig and four musuems.... but Tommy wants to give you a review on the Holiday Inn.  Oh. La. La.  He eyed the trundle bed that we added to the room and hoped right in that perfectly made bed and tucked himself in.... I couldn't grab the camera fast enough.  Tommy gives the Holiday Inn in Great Falls a HUGE thumbs up for relaxation.  Writer's note:  This hotel had a waterslide, indoor pool, hot tub AND bouncy house.  Liam's comment when he saw this:  EPIC! 
Tommy agreed!

Sunday, July 15

Hannah's high school graduation family trip

Hannah graduated from high school and we thought it would be wonderful to take a family vacation together to celebrate her accomplishment.

She loved the idea of going to Great Wolf Lodge in Grand Mound which is a few hours south of us. 

We spent the night and played for two FULL days there in the waterpark.  At Great Wolf they do an amazing job assuring that every single age group has something fun to do.  Each of the six of us had a blast!!

Hannah and Nate rode the Howling Tornado (with a 60 foot drop) four times!  Liam rode 5 of the 6 slides along with me, I was so impressed with my 5 year old danger seeker.  Alberta Falls is a fast single or two person slide and he really liked it.  My favorite was the River Run which me, Hannah, Nate and Liam loved to go on together, it was fast with lots of lights and rock music.  Colin, Nate and Liam went on the river run together too.  Colin and Tommy loved the outdoors water park.

What a fun way to celebrate big sista's high school graduation.  She will start at Western Washington University in the fall and we are so proud of her.

Friday, June 15

Kindergarten preparations

I'll admit, five years ago I had no idea what inclusion meant.  I knew there were special needs kids alongside my "typical" older children in classrooms, but never really understood how important inclusion was.  Within the last five years my heart has grown so huge for children with development delays and I appreciate inclusion and efforts toward it.

Now that we are finishing our third year in early intervention preschool we needed to think about what kindergarten will look like for Tommy.  So, I have been reading and studying inclusion in education in all of my spare time.  I really submerged myself in the Infant/Early Childhood Conference classes both these past year and tried to broaden how I thought Tommy would access his education.  

Today Colin and I visited the Life Skills K-6 room at the school that the twins will attend in September.  Yes our transfer is official!  We are not attending our home school, but another in district, where the boys have been for their preschool years. 

Liam will be in a general education kindergarten this fall, his skills are ready to join his typical aged peers.  Tommy will have a Life Skills teacher for kindergarten.  That was hard to write.  Hard to say.  In some ways I felt when Colin and I agreed that it would be the best choice for him, we were somehow selling out.  I felt like we should push Tommy to excel and to demand that he be placed in kindergarten general ed class.  But then we quickly realized, the life skills program would support Tommy the best.  And that he was not ready to be in a mainstream classroom all day.  I will share with you that I am now totally comfortable with our decision.  And actually am really excited!

I will totally admit I was really anxious about the visit and worried a bit too much that I wasn't going to like the program, the environment, the teacher, the paras, oh the list goes on.Within minutes of meeting Tommy's special education teacher, I could tell his passion was with kids and that he would listen to our  needs and wants for Tommy's education.  Granted we do a type of "homeschooling" with the twins on pre-K skills, we really want a strong kindergarten program to lead his education and interests. 

Tommy will be in the special education room for 980 minutes per week, the general education kindergarten room for 670 minutes, and he will receive 45 minutes of speech and language therapy plus 30 minutes of occupational therapy.  When I think of the data regarding when children with Ds "peak" in their education, it's around 12-13 years old, so I really want to make his time at school and at home in these early years rich with experiences for education so I can pack it all in his adorable head!

Very excited that the time he is in the Life Skills room he will be receiving "Discreet trial training", more specifically the "Styer/Fitzgerald" method for functional reading skills, manipulatives for math, shapes, colors and some day soon sight vocabulary.  Discreet trial training is exactly what I had read was appropriate for encouraging kids who have processing and rehearsal difficulties. 

Disappointing that he will not be able to receive sign language support, nor will he be able to receive a 1-on-1 para aide.  For a non verbal child those two things coupled together are really difficult.  Rather he will be paired with another child and have a paraeducator to share, and I can see how Tommy would benefit from that if his paired student had typical speech and language.

I believe the room will have 16 total kids in the fall, about half in the morning and the other half in the afternoon.  One teacher and probably 3 or 4 paraeducators.  So that would be approximately a 2 students to 1 teacher ratio.

The daily routine starts around 9:30 and spends alot of the beginning time on social skills, how to introduce yourself and talk to someone else, how to make a friend.  There is one child in the room currently who is about 8 years old with Ds, so of course I was more attentive to how he was being taught and shadowed him thru his rotations of learning.  The time spent of functional reading using the Styers/Fitzgerald seemed really productive for this student, he was given positive reinforcement and it was "errorless" so the teacher prompts the child for the right answer, which for today was phonics based on a sight/flashcard of the letter. 

The rotations went from around 10-11 with changes every 17 mins between stations.  Different stations worked on different skills and all seemed very child and education centered.  I was happy to see that a few of the stations were in rooms off of the hallway and had very few distractions once you were within the room, which is great for Tommy to pay attention and learn. 

At about 11 all the kids, in this morning group there were eight but only 6 present today, come together for circle time on the calendar.  This section of the morning also stressed phonics and number concepts and was done in a sweet way giving the child a sense of community also with his friends. 

At 11:30 they go to lunch with their age appropriate peers which is terrific and hopefully Tommy is well received in his kindergarten room to make some friends for lunchtime. 

The afternoon is focused on Tommy being inside his general education kindergarten room for music, pe, computer time (which he loves right now) and recess.  Of course the paraeducator would be there to support him.  We have requested that Tommy and Liam be in two separate kindergarten classrooms, and since there are three classrooms we believe that should work.  It's important for them both to have their individual friends, access learning in their own ways and experiences to their own interests. 

I'll be sending the special education teacher an interest inventory and the current two page document on Tommy's sensory seeking activities.  So that the teacher can even better tailor the education and rewards to things that Tommy adores.  So, for now we have the perfect plan for Tommy and Liam's kindergarten learning.  A plan that will require alot of hard work on our part at home and a lot of hard work on some very dedicated teachers in their school. 

I'll soon post our summer "homeschooling" ideas and goals if anyone is interested in pre-K ideas.

Saturday, May 26

Dynamic duo does dentist

The most amazing things happen with our dentist.

We have been seeing her for exactly five years.... but this was the best visit.

Other than Liam having a cavity on one of his back molar crevices....

Tommy actually did a "high five and knuckles" to our hygentist when she had on surgical gloves.  Oh yeah.  For all those out there with kids that have experienced WAY too many medical appointments and fear surgical gloves like wasps.... she made it fun and relaxed and his warm little eyes wanted to high five her so bad he just up and did it. 

I explained how important that moment was to her.

She smiled and calmly said "I know".  And she does.  See she is with kids with special needs at our dental office.

In a nice big, full of light, fairly sound proof room.  Yep.  For the last eight or so visits (every six months since the twins were six months) this hygentist has helped us.  Make normal more normal for Tommy now that we have more "normal" types of medical visits.  What a gem she is.  With alot of assistance we actually got Tommy to sit in the dental chair for the first time too!  Don't ask how we usually do his dental exam, you don't want to know, ha ha. 

And our dentist is amazing too.  Her niece has Down syndrome on the other side of the nation, so Tommy's huge smile reminds her of someone she loves very much and doesn't see as often. 

Such a great dental visit. 

Two fun days at the Whatcom Museum

I really enjoyed our first day at theWhatcom Museum with just my two teens and scouting out the art plus the children's area.

I have a 'thing' about not taking Tommy anywhere that I haven't been first. 

Have you seen how fast he moves? 

So I was so excited to see that the Children's museum has only two exits, and one of them has an alarm on it (emergency exit).  Ha ha.

So the second day, Nate and the twins and I expolored the children's part to the museum.  Oh. my. What fun!

The pictures are a little blurry because I haven't perfected the indoor setting on my mobile fun.

Life is good.

Monday, May 14

Flower pot recycling

Recycling flower pots!

I started with a multipurpose sealer and painted the entire surface of the flower pot.  After washing them and convincing the earwigs and bugs to vacate.

Then I used a acrylic paint, because that's what my junk drawer had... a partially filled bottle of "Metallic Christmas Green".  And since Liam was helping me, I thought that was perfect.... it's his favorite color so we went BIG.  Big GREEN.

I only painted the outside of the container, after all .... they are hanging.  And if you can see the inside of the containers while they are hanging... well... you probably can't fit in my house :)

The last step might not be necessary but we sprayd "Gloss Spray varnish" because I thought they would look nice shiny.  Heck, everything looks better with spray high gloss shiny. 

Enjoy the sunshine!  And if you can recycle something.... use metallic Christmas green, ha ha

Monday, May 7

And the last is..... Liam

Liam is almost five and a half years old now.  He remains an amazingly sweet, gentle, and kind boy.

He is just finishing his Pre-K program at early intervention preschool.  His team of teachers is so wonderful and the weekly speech instruction there is helping him.
He goes to Connections Speech and Language every other week and has lots of fun playing games with his SLP there.

He really enjoyed his Awana program this year it was every Wednesday.  And children's church on the weekend.

He LOVES being outdoors and especially riding for miles on his bike.  With us of course, but he loves his bike!

He is getting taller this year and really likes wearing baseball hats.  He loves when the older kids are with us, just this past weekend with all six of us home he said, "I want it to be like this forever!".  Very sweet.

Liam and Tommy are both playing TOPS soccer, here is Liam (farthest right) waiting for some action with the big soccer ball.

Liam really enjoys heading to our nearby beach.  Some weeks we are there at least one day a week and he often wants more than that!

Liam loves a 'ride' on daddy's shoulders down to our nearby lake.  Which is great after dinner exercise for us.  Liam continues to be our littlest guy, but his heart is huge and is such a sweet kid.

Wednesday, May 2

Tommy's update

I haven't done so well with getting all four kids updates out in four days, but so goes planning! 

Tommy is almost 5 1/2 years old, he is LOVING his third year of early intervention preschool and is just the most animated person in our family.

He plays TOPS soccer on Wednesday evenings at our local sportsplex and although the task of kicking the ball is fairly lost on him, he enjoys scurrying around smiling and checking out his friends, the astro turf and giggling.

Although Tommy is non verbal and has limited sign language, he gets his point across and is up to three sign combinations.  In addition to his SLP time at preschool, he goes once every other week to a local Speech center to learn more.

Tommy had two procedures done this year which is far less than previous years.  The procedures were both to check his ears.  One was to verify that he didn't need ear tubes and the second procedure was a sedated BAER hearing test which he passed with flying colors.

During the procedures, our local pediatrician had asked Seattle Children's to draw Tommy's annual bloodwork and again this year his platelet count has fallen.  Since he has Down syndrome and Polysaccaride Antibody Deficiency syndrome, we are concerned he has Wiskott-Aldrich syndrome or something else (which I really can't bring myself to even say until our pediatrician mentions it more than she has already, trust me, the L word is on her radar).  So in 4 months we are having a complete bloodwork done again and assure that the L word isn't happening and make sure those platelets that he has are still large and haven't shrunk like Wiskott-Aldrich.  I'm not sure what the comorbidity with Hirschsprung's disease is with all this immunity issues, but there you have our little medical miracle in a paragraph!

We simply LOVE loving Tommy and he is just such a precious kid to us, we are so lucky!  Just like all of our kids. 

Sunday, April 29

Day two of four kids

I love updating everyone on Nate.  He turned 17 years old last month and is so much taller than me now!
Here is his favorite place to relax, Locust Beach hammock.  We watched the surf skiers with their sails (you can barely see one near the cloud) on the day this photo was taken.  Nate loves being outside.

I thought this picture of him was wonderful at Clark's point beach.  He is one tall skinny guy.

Nate is so easy going and really enjoys spending time with his family.  Loves to camp, walk on the beach and just relax.  He is in his first full year of Running Start at Whatcom Comm College and if he keeps going at his current class load he will graduate from high school next year with his AA degree.
Nate and his dad trained and accomplished the Lavaman this April in Kona HI.  The Lavaman is an Olympic length triathalon. 
Out of 1,500 approx people, Nate placed 220 in the biking leg and overall very well.  He has so much self discipline!  Him and his dad continue to train daily (sometimes even twice a day) for the next triatholon. 

Gorgeous pictures from teh racecourse in Hawaii.

And here is the finishing leg of running (Nate says that's not his best athletic skill) and finishing, which was probably his favorite part!

Nate is such a positive and loving kid, we just really enjoy him so much!  His younger brothers love him so much and so do we.
My favorite thing about Nate is that he continues to remind me Tommy with his Down syndrome is just a natural part of life, if I see someone else with Ds, he will remind me that they don't want to be looked at or admired any more than just another person in the world.  He puts such a normalcy on each person in the world, no matter what.  He reminds me that we are all just so equal.  I love you Nate!

Friday, April 27

Four kids in four days

I'll start my four days for four kids with my oldest Hannah.  Two short months ago my baby girl turned 18!  And we had a fun birthday party.  Here she is with her brother Liam and cousins Owen and Maddie.

Hannah loves to spend time with her family.  Here we are at the Woodland Park Zoo feeding the penguins.  She loves all three of her brothers lots.

Hannah continues with gymnastics and tumbling.  And from our backyard you can sometimes see her upside down!

She still loves to see the baby goats when they are born, or talk about animals to get on our farm.

Hannah has spent the past two years attending Running Start which allows her to graduate in June from high school with lots of college credits.  She works part time and makes it to numerous evening meetings that she has.  She is a girl on the go!

She went to Senior Prom and looked fabulous.  We enjoyed getting our manicures together and chatting about prom and college plans.  Hannah is going to attend Western Washington University in the fall, which is her dad's and my alma matter. 

Hannah's faith has given her continued strength, she is almost nine months sober.  She volunteers in children's ministry, finds encouragement reading her bible daily, listening to wonderful Saturday night sermons and remembering to give her worries up to her higher power a wonderful and loving God.

We love you Hannah Ilene Hughes!  Hard to believe how much you've grown in the last few years.

Tommy Adventures