Monday, November 18


Earlier this month we were suppose to go to camp.  "Suppose to" was the operative words.  Seattle Children's had sent an invitation in September for us to go to a weekend with some of their staff and volunteers to what looked to be a wonderful and magical looking place called Camp Korey.

Each weekend at this camp is generally a different kids with 'special needs' group, we had been invited to 'pelvic restoration camp' because Tommy's Hirschsprung Disease caused him to lose most of his colon.  Some friends were also going and I was beyond excited.  I had a list of questions for my friends like "toilet training" and "their thoughts on inclusion" and "sleep training".

I had generated excitement in Liam and Colin too!  I was reciting what activities would be enjoyed and reminding everyone that there "is even smores around an indoor safe campfire!"  So after we met all the pre reqs for camping, applications submitted, emergency contact lists, special accommodation lists, last minute flu shots.... bags were packed and crammed in the van.  Tommy travels with a lot of "just in case" accoutrements and all had been meticulously packaged in luggage.  Day before we are to leave, cue the big illness in Tommy.  Low grade fever and junky cough.  We met with our pediatric folks and our local immunology peeps and the group conscience was NOT to go to camp for the weekend.   It was a good decision, 7 days later Tommy was diagnosed with pneumonia and put on a coordinated home care plan.  All decisions are good right?  No regrets.  Right?

All the thoughts of our family doing a 'normal activity' evaporated.  Liam was sad we weren't going to camp.  Us as parents were sad we wouldn't be able to seem somewhat normal for the weekend and be able to talk to other parents about truly shared issues and struggles.  I stepped into my shoes and trudged to my van to unpack that evening and even kicked the tires thru my tears as I ripped all the luggage out and spat bitter words into the night sky.  Why can't my entire family enjoy one activity at one moment in time together?  Someone is always missing, or Tommy inevitably is sick. 

I've been struggling with concerns about Liam and how being raised with a sibling with chronic illness effects him.  Even Hannah and Nate while away at college, get to hear of current "Tommy illnesses" during our twice a week calls.  I know Tommy's illnesses effect them, and seven years ago when Hannah and Nate were just 12 and 11 they spent Christmases in Seattle Children's hospital and Ronald McDonald houses.   They have tube fed Tommy, given him nebulizers, changed his diapers at age 5 (insert visual of scared tazmanian devil smeared in poop). 

Don't get me wrong, I love Tommy and will go to the ends of the earth for him. Everyone in our family have and would again.  I recognize daily that his joy is more Christ like than any I will ever know in this world. All of that is a given.  But sometimes, I wonder while raising a chronically ill child, have I correctly struck that ever so ginger balance in motherhood of raising children and being a wife all while still keeping Tommy safe and healthy.

Sometimes that ginger balance feels more like driving in the dark night and hitting one of those large deep and wide puddles, the kind that you can feel the weight of the water slow your van, and hydroplaning.  The kind where even moving the steering wheel left or right doesn't matter.  The kind of hydroplaning that all you can do is hope.  Hope that the momentum and direction was right before you ever hit the puddle.  I think ours was right. 

While I was reading this wonderful family's blog post I was reminded again how I question daily my mothering.  My purposeful actions each moment of the day.  I try to find the middle path as our SLP reminded me of last week.  Not the extremes, the middle.

And with a very sweet surprise call from my favorite social worker at Children's last Friday, I was reminded to find the middle again, I lit those candles that glow with battery lifelikeness so that Tommy can't burn his hands on, and line my bathtub and relax and think about my entire family and how I can continue to love loving each one of them.  And I plan our next camping trip.  And I start to list all the benefits of the next place and time and dream of our family together making smores.  And hope.

Tuesday, November 12

Thank you

Since I have never received a dozen roses before in my life.......  

I didn't realize they would be this beautiful....

or the sentiment so strongly felt in the words.  
But I did realize my family was *this* loved.

 Because I can always feel it.

Even when my head is lost in the thickest fog and my heart is so amazingly homesick.  And the words coming from my mouth less than eloquent and lacking grace.  Thank you.

Hard choices are coming.  Purposeful decisions for our toe headed hurricane.  And love so strong we feel it although we can't see it.  Faith and hope in a dozen roses.....

Thursday, November 7

IEP season

Yesterday we attended the opening meeting for the annual process, called an IEP meeting, for scoping Tommy's current functioning and in some small efforts designing what his education will look like for the year. 

As most of you know we asked our school to repeat Tommy's kindergarten experience and his kindy teacher asked for him specifically to return to her classroom.  That, as most of you know is a energy and heart investment.  And to get another year of kindergarten for Tommy has been wonderful these past few months.  We are thankful for teachers that 'get it'.

There are many specifics to the IEP we are still examining and searching ourselves for what is best for Tommy's access to his education.  There are many 'feelings' (really stretching out the 'eeeee' sound there) and honestly I'm pretty disenchanted.  And generally, I'm a really optimistic person but this one really has me.

My personal perspective is that Tommy's access to his education is controlled by people sitting around a table who mostly have very little and intermittent experience with Tommy.  Half the committee knows him well, and half the committee has very little knowledge of how he accesses his education.

I don't believe inclusion will ever be successful unless there are co-teachers in gened.  I wish, with all my heart, Tommy could stay in gened longer but realize the design of our district's teaching doesn't support special education kids in the classroom.  And since we as parents represent Tommy at the discussion, all I can say from his end is that transitions... push into gened for circle, pull out for life skills rest and work stations, push in for music, push in for enrichment, pull out for slp, etc create havoc to Tommy's extreme dislike of transitions. 

He is asked to make more transitions during his day than a gened student.  Why do we do this to kids in life skills who detest transitions?  Because we try to disguise it as 'inclusion'.  Because we are afraid to say education is still segregated?  Tommy should be in your classroom

IEP's always have an element of the unknown, different agendas (even though it should only be Tommy's education), levels of knowledge about Tommy, belief systems come into play and in the event of a disagreement the school districts typically have more resources to gain the upper hand in a dispute. So right now, I don't even believe an amended IEP is really even an option.  Visions of David vs Golliath come to mind. 

So when I was reading this article.  Mostly to refresh my own memory of some facts.  While meeting with some new families with children with Ds over the recent few months, I had forgotten some of the 'facts' because... well, quite frankly they don't matter anymore to our family.  I can't recite to you all physical differences Tommy has due to Down syndrome, because they don't appear to us anymore.  But when I was reading the article, #9 really stood out to me.
From the article:
#9. Mothers of individuals with Down syndrome typically exhibit better psychological well-being profiles in comparison to mothers of individuals with other intellectual and developmental disabilities. There is extensive evidence that mothers of young children with Down syndrome experience lower levels of stress, more extensive and satisfying networks of social support, less pessimism about their children's future, and they perceive their children to have less difficult temperaments. A major study also found that divorce rates were lower (7.6 percent) for families of children with Down syndrome as compared to 10.8 percent in the population group with non-disabled children and 11.25 percent for families of children with other congenital birth defects.

Now that my friends is ground breaking news to me, lol.  Personally I'm really hoping that happens for me soon!  Because at the IEP meeting I was not exhibiting 'better' psychological well-being.  Insert image of a Siamese cat being tossed off a sky scrapper here, lol.  David vs Golliath IEP issues always have kinda made me anxious.  Tommy needs to communicate, but the supports are withdrawn.  Tommy needs behavior modifications, but it's minimal in the IEP.  And I'm not sure the amendment process would work, as we have taken that path last year and it was exhaustive for little benefit.  His education is just taking a different path, all is not lost.

After reading his prior book Outliers, I really wanted to read his new book, especially after I saw the reviews included insights on disabilities and the title was David vs Golliath.   "The challenge is that the people who might appear to be underdogs or to be burdened with disadvantages actually aren’t." 
Us as parents hope that Tommy's access to his education will focus more on seeing his potential and ability and support him, rather than continue to close doors to ways he is accessing his education. 

I pray for the school district, as their load is limitless and resources slim.  I pray for wisdom in knowing what pieces of Tommy's education to focus on and which to let slip.  I am thankful for Tommy, who was perfectly made and who's joyful smile gives our family hope and unconditional love.  IEPs come and go, and even in this process and analyzing all this paperwork we will focus on the good and find joy and ways to support his team of teachers and increase our homeschooling for him. 

"For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."  2 Corinthians 4:16-18

Tommy Adventures