Dangerous Hope

I hope my kid defies the odds. Beats the statistics. Exceeds expectations.

I can’t be alone in this. I mean, I might be… but I don’t think I am.  If we’re talking  ‘typical ‘ kids, I KNOW I’m not alone in it. We all want/ expect/ drive our kids to be their best.  But when it comes to a non typical kid, there’s an unspoken thing that hovers in the air like smoke from a nearby campfire… you aren’t supposed to wish things were different for this kid. You aren’t supposed to want to “fix” them or change them.  You embrace the journey just as it is and work with what you have. And I can agree with that to a point.  But I just know. I mean I KNOW I’m not alone.


I have a dangerous hope that Thaniel will defy the odds. And I can’t seem to shake it. I cannot bury it in the propaganda of acceptance no matter how hard I try. I say dangerous hope, because if I’m wrong. If all my pushing and working and effort results in an unhappy and stressed out little person and …. here’s the crap….  a disappointed mother, then my hope was a reckless thing.

Unfounded Hope leaves you unguarded.  

I don’t feel like my hope is unfounded. I feel I have seen examples of kids with Down Syndrome that have broken the sound barrier. College grads, entrepreneurs , business owners, artists, writers, actors, speakers… These shining few who stand out like Sirius the dog star against a backdrop of unbelief.  So I sense that my hope in Thaniels ability has merit.  And yet it still fills me with guilt that I harbour it.  I don’t tell anyone what I’m aiming for when I run thru the alphabet with him.  I don’t say that what I’m hoping for isn’t that he will master it before he starts school and therefore will keep up with his peers, but in truth , my hope is that the letters will jump out and grab his imagination and he will write a book that will rock the world.  But can you see how this secret hope has me wide open and vulnerable?

You never know.  But… you kinda know.

Hope begins with disappointment.  

When it comes to hope in my own life, my gloves are always up.  That wasn’t always the case. I know it couldn’t have been. We just don’t start out that way.  How do I know? Because I have held my trusting open newborns in my arms and I know they don’t even register the concept of ‘hope’.  They don’t have to.  Everything they need and want is a sure thing. There is no time at their start that they are left wondering if their needs will be met.  None.

Hope is a concept that’s born from disappointment.  From that one time that things didn’t go to plan and so you ‘hope’ they go better next time. You were let down this once and so you ‘hope’ to be held up from here on out.  As infants , my children had no reason to ‘hope’ . They knew.  

That all starts to change when I start slipping. When I don’t rush to answer every call. When I don’t give in to every want. Hope begins with Disappointment.

Hope ends with disappointment.

If you let someone down enough times, eventually they will stop hoping things will change. They will come to expect that you will continue to fail them.  I think that may be the case with Down Syndrome?  I think in the beginning we didn’t hope. We thought we knew that these kids weren’t capable of anything other than the basics of life , if that, and so we didn’t hope for more. And then of course we saw our expectations met, and we didn’t risk hope for anything else.

Who , I wonder , was that first reckless soul ? That warrior of hope who looked at their beautiful T21 baby and said silently in their heart ” You can do it” .  And then pushed to see it happen.  Who swam against the waves?  Who were the first few who didn’t see with eyes, but felt with their whole selves that possibility was a seed and you just had to plant it?.  Whoever you were… Thank you.   Shhhhh, I feel the same way.  My boy is going to sing, despite the fact that you can’t yet understand him. My boy is going to play music, despite the fact that he can’t read the notes yet. My boy is going to write, despite the fact that he can’t grasp a pen yet. MY BOY IS GOING TO FLY.  Despite all the odds.  Because I have this dangerous hope.

Hope, the double edged sword.

In my own life, I see hope as a knife.  It scares the daylights out of me.  If I were to walk you back into my childhood and bring you with me through to this day; you would no longer hope for me either.  I cling to things like grace, but I have little use for personal hope.  Experience has taught me to guard my heart and keep my gloves up.

I joke with the people around me … things like “If it’s out there It’ll happen to me”  and I laugh after I say it. But I believe it.  Neutropenia means that every virus, infection, sickness.. is coming for you.  I want to be fierce…. what I am is weak.

I laugh off references to my personal life.. the fact that no man has ever been faithful to me.. that I am constantly left alone… and I treat it openly with a shrug and a ‘whatever’ attitude. But my soul is curled up in the fetal position because the truth of the matter is I am always alone.  I let go of hope long ago.  Because it hurts to hope. It costs too much to hope.

Every Time a doctor proposes a raft of tests and I begin to think that they may chase down an answer and I may see a light at the end of this tunnel… I’m left alone.  Every time a man says he will stand beside me and walk through the stuff and I give in, even an inch… I’m left alone.  Hope is the knife that slides in and leaves me bleeding every time.

Every time. 

So now what? 

You know, and I know, that I can’t stay this way.  If you’re like me, you know, and I know that you can’t stay that way. This isn’t living. This isn’t the way it was supposed to be.     SO WHAT DO WE DO?   We cannot go back and erase or change what’s happened. We can’t repair the breech. We can’t restore expectation…. or can we?

My soul, wait thou only upon God; for my expectation is from him. He only is my rock and my salvation: he is my defence; I shall not be moved. In God is my salvation and my glory: the rock of my strength, and my refuge, is in God.  HOPE in him at all times; ye people, pour out your heart before him: God is a refuge for us. (Psalm 62)

…  I remember those words from the Psalms.   My expectation is on you oh Lord.  There isn’t a man on the planet that I can rest in like that, and I don’t have to.  I hope in God.  If I am left alone, I am not alone. If I am torn to shreds, I am not without a healer, If I am disappointed, I have this trust in you. If I meet with storms, I have a refuge.  Oh man!! that’s good!!  And so when I wake up and my first reaction is to shut it down, I remember who holds me, and I answer from that place .When I want to put my gloves up, I remember who my defender and rock is and I open my heart up a little more and with a grateful heart I hope.  I hope. I hope. I hope!

We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain… (Hebrews 6:11)


Today I am so broken. You see. You saw me yesterday so laid low that looking up was costly.  I can’t even see past my own pain today to glimpse the hope I have in you. But I know it’s there. This hope that enters the inner sanctuary of my life, behind the curtain of who I pretend/profess to be.  There I find my hope. And it’s in you.  You see how I want Thaniel to be more. And I don’t know. Maybe that’s your plan, maybe it’s not but I have hope. For him and for me.  My hope is frail and it’s flawed and it sometimes resembles more of a life jacket than a banner flying proudly… but Father I cling to you! only you! you alone are my hope and expectation.  Keep me here. In this place of tender resignation. I have nothing but you. I need nothing but you.

God I ask for those around me that are empty of hope. May they reach and find in you a firm hold.

I love you Yeshua.

Living a vertical life.

I have a hole where all my  hope and trust and joy and faith slips out almost as soon as it’s poured in. I don’t know where the plug for it is. I’m not sure if I lost it or if it was stolen.  Whatever the case, it’s a fact.  I can sit in a church service,  worship with abandon, hear a word tailor made for me, leave filled with such confidence in the God I serve, the plan for my life and the brightness of my future.. and sometimes before I’ve hit the parking lot, some rancid thought has slid into the place that confidence once held and I can almost FEEL the good drain out.

My faithless heart has lies on loop

It’s the same for me in relationships.  Any relationship.  I am so sure of you, of your care for me, your loyalty, your genuine desire to be a friend…until I am six steps away from you and then I am riddled with insecurity, doubt, fear and all of the joy that we just shared is in a puddle at my feet. If you and I are friends you may not know this about me. Maybe this is the first time you are hearing this awful truth, or maybe , secretly, you are just like me.

 I have a good friend Kristen, who used to call my withdrawal from human contact and emotion, “turtling”  lol.  I love that word picture.  I really do feel like that sometimes. I shrink back and go someplace dark and safe and pop my head out when I’ve sorted truth from lie ūüôā  ( Gratefully Kristen was always there waiting for me… you’re the best Kitten!)  But for others, this pushing away; as I wrestle with my demons , is exhausting and they can’t sustain the effort it takes to constantly reassure me and keep me from hitting the road.  I understand.. believe me I do.

I know soul deep that this is no way to live. I KNOW it… and while knowing or admitting is half the battle, it doesn’t change it.  Knowing however does arm me with understanding. I understand that I have to be diligent.   Like a diabetic testing their blood through the day, vigilant about what they eat. I test the messages that fill my head and heart against the word of God or the truths I know about a person. I rehearse those truths until the lies are quiet. I do this everyday.  Just enough to stem the tide.

I cannot afford to live a horizontal life.

What in the world do I mean by that?  To me living a horizontal life is living by what I see and feel. Living by what’s around me. On my level, surrounding me.  Too often that kind of life becomes mired in a geasy fog of discord and fast judgements.  We have a very horizontal society I think. We are instant and emotional. We lack depth on a whole and only respond to what is an arms breadth around us.  This is so not me judging.. lol.. because, of these sinners, I am chief!!

When Thaniel came along I was knocked horizontal. lol. I mean flat out . All I saw and heard and thought was on a level line . I saw the immediate and nothing else.  I was so filled with fear and guilt that for a few weeks I was deep in a dark place of thinking I shouldn’t even be here on the planet with the rest of the ‘right’ people.  That place of despair was flat. It was me laying face down. Wholly horizontal.

 I had to look up. 

If I had bothered to look up during those days I would have seen a plan and a grace and a promise that was being offered to me. If I had bothered to look up I would have seen the vastness of possibility and not the finite wall in front of me.  When I finally did look up it was because of a song.  The lyrics of which grabbed hold of me and gave me a little shake.

Give a read.

I am the Lord your God, I go before you now
I stand beside you, I’m all around you
Though you feel I’m far away,
I’m closer than your breath
I am with you, more than you know

I am the Lord your peace, no evil will conquer you
Steady now your heart and mind, come into my rest
Oh, let your faith arise, lift up your weary head
I am with you wherever you go

Come to me, I’m all you need
Come to me, I’m everything
Come to me, I’m all you need
Come to me, I’m your everything

I am your anchor, in the wind and the waves
And I am your steadfast, so don’t be afraid
Though your heart and flesh may fail you
I’m your faithful strength
And I am with you wherever you go

Don’t look to the right or to the left
But keep your eyes on me
You will not be shaken
You will not be moved ooh
I am the hand to hold, I am the truth, I am the way
Just come to me, come to me, cause I’m all that you need

( Come to me-Bethel music)

Cool beans right??  It’s in this way that I live a vertical life. Digging my feet into these truths and looking up.

How does living vertically benefit someone like me? Someone for whom hope is fleeting and love appears distant and faith is misty?    For starters it takes my focus off of the things that are temporary.  Perhaps someone I love is having a bad day or a busy day or like me a pain filled day… those don’t last forever and my perception of their care for me shouldn’t be based on the moment, but on the grand total.  Digging my feet into the solid ground of time spent and trust built keeps me from spiraling into a false sense of rejection.   Perhaps I’ve just been given bad news, or Thane has hit a health snag, or one of my children has behaved like… well, like a child, and I’m wondering where God is in it all and if I’m alone with the whole mess. Looking up helps me to remember that His view is so much larger and He has already seen the end of the journey I’m on.  I’m held.

This blog today is an exercise in this practice.  As I type my hands are shaking with the pain that is barely contained. My back is clenched in a tired knot from holding myself still, I have a furrow on my brow.. pain and concentration drawing  lines across my forehead. I want to cry. I want to make fists with my hands. I don’t want to deal with the outside world. I want to draw inward and give in. Give up.  The pain is real. So when I say this next bit, don’t think for a second that some kind of mind over matter thing is going on, or that I’m somehow overcoming it with a saintly wisdom or faith. It’s here, it’s real and it isn’t going anywhere soon. But my feet are dug in.  I need to say that again.  My feet are dug in .  I’ll play worship and sing thru gritted teeth and tears. I’ll remind myself hourly that I am loved and silence the voices that say I’m not worthy , that I will be left, will be alone.   If you are reaching out to me right now I won’t politely smile you away and keep your offer of friendship and love at arms length, but will be brave enough to trust.  I will allow the strength of Joy to buoy me for this time.

My eyes are looking up.  God will not be leaving me in this place forever, there is an end to this and until that time, He is faithful and true, He is my rock and my fortress, He is acquainted with my pain and my feelings about it and He sees me. He will not leave me. I have this HOPE, this promise. It’s as sure as the sun standing in the sky. It’s as vast as the blue and the clouds that climb up and up and up, it is as unknowable and unsearchable as the space beyond that.. His promise to me is everlasting. Solid and unchanging.  This is my stand.  The hole where my hope slips out is plugged up for a little while longer.

Abba Father I ask that you would pour these truths into the hearts and minds of any of those that need it today too.



cails pic

You might look at that title and justifiably assume I’m talking about being the single mom of a million kids and having what it takes to survive a weekend with them… lol, that would make a great blog! I bet there’s one out there!! ¬† But nope. ¬†Not what’s on my heart today.

My heart is inside Saturday. The middle. ¬†During lent and heading up to the season of Resurrection, my heart is stuck on Saturday. ¬†We all gather together and ‘celebrate’ that wretched day ‘ Good Friday’ and much is made about the cross (rightfully so) The depth of the love of God to send His one and only son for us, the pain and torment of the cross and what it meant for the triune God to be separate for the first time in any time. ¬†It’s a Holy and somber day. And then we jump to Sunday and have a mad party for the joy and elation of the risen Lord!! ¬† ¬† ¬† ¬† ¬† ¬†¬†¬†UP FROM THE GRAVE HE AROSE!!!¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬†I remember singing that as a kid and the crowd of people around me just belting it out with so much passion. ¬†Sunday is such an awesome day!

But Saturday. ¬†Nothing happens on Saturday. Saturday is forgotten in the center of the world’s greatest drama. ¬†Back after the crucifixion it was all hiding in rooms, and denying they knew him, and grief and fear. Saturday is the void.¬†

Depending on your life… you may spend a lot of time in Saturday. ¬†I know I have. ¬†That time after my life has been torn to shreds and everything I knew is gone. Everything I built or held to is just gone. ¬†It’s dead. And not just overnight. That dead doesn’t rise up with the sun, no… it stays dead. gone. dormant. silent. dark.

Day after endless day. ¬†Like a fog that rolls in and will not leave. I hate that Saturday! ¬†What do you do with that? ¬†I know the message of the cross is one of HOPE. . That Jesus is alive and that all the stuff that happened before is swept away in the new life of our resurrected King. ¬†But for now, for Saturday, He’s behind a rock and we can’t see what He’s doing on our behalf. We can’t see the war He’s waging. We only know the night is lonely. ¬†I know the message is that Sunday comes. ¬†But until then, what do you do?

Here’s what I’m chewing on.

15 Then Nathan went home. And the Lord caused the son of David and Bathsheba, Uriah’s widow, to be very sick. 16 David prayed to God for the baby. David fasted and went into his house and stayed there, lying on the ground all night. 17 The elders of David’s family came to him and tried to pull him up from the ground, but he refused to get up or to eat food with them.

18¬†On the seventh day the baby died. David‚Äôs servants were afraid to tell him that the baby was dead. They said, ‚ÄúLook, we tried to talk to David while the baby was alive, but he refused to listen to us. If we tell him the baby is dead, he may do something awful.‚ÄĚ

19¬†When David saw his servants whispering, he knew that the baby was dead. So he asked them, ‚ÄúIs the baby dead?‚ÄĚ

They answered, ‚ÄúYes, he is dead.‚ÄĚ

20 Then David got up from the floor, washed himself, put lotions on, and changed his clothes. Then he went into the Lord’s house to worship. After that, he went home and asked for something to eat. His servants gave him some food, and he ate.

David understood Saturday. ¬†All that stuff with ¬†Bathsheba and her husband happened, and God was mad and Nathan was mad and the rug was just pulled right out from under this great king. ¬†There’s a baby involved and consequences of Sin, and it’s all a mess, and then there’s a death and David enters Saturday…

But David didn’t mope around on Saturday. Sure he didn’t dance in the streets,¬†but he didn’t just sit around and let grief swallow him either. He got up, he got on with it, and he worshiped. ¬†He went to the Lord’s house to worship.

Man I miss that important bit so often. It’s Saturday and it’s all gone to crap and I’m scrambling to remember when it was good and figure out how it went wrong and I’m chanting the promises of God about His showing up on Sunday. But I wallow on Saturday. When what I ought to do is go over to His place and worship Him. ¬†There’s so much comfort and clarity in the house of the Lord in that place of worship. My situation is laid down for a bit, not forgotten, ( how can you forget ? ) but for a time I focus on the beauty and Holiness of my Saviour. I stop trying¬†and just respond. Strong hymns of truth wash over¬†me and¬†cover me in armor for whatever is ahead, ¬†sweet choruses that reaffirm the realities of His love for me , sink in and clear out the distortions of what my head has been thinking and leave in their wake fresh air. I breathe deeper. ¬†Nothings changed, but everything’s changed. ¬†¬†

Saturday may just last the night, or it may be months, years, I know someone who’s been in Saturday for 17 years and counting!! ¬†… Sunday may not show up for some people while they breathe on this soil. ¬†But Sunday¬† IS coming. ¬†In the meantime… get up, ¬†get your hair did, ¬†have a nosh, and then Worship Him.


I can’t bring back whats gone. I can’t. Some things I’ll never see again. {Some things I never want to see again ūüėČ } I can’t make Saturday speed up and manufacture some false version of happy to fill the time between death and resurrection . ¬†But I can worship you. And really, ¬†I love to worship you! ¬†You are so worthy! so beautiful! So Holy! ¬†You fill all the cracks and all the ripped open places. You give¬†me all the stuff that I don’t have and the things I don’t even know I’ll need yet. You infuse¬†me ¬†with strength I don’t deserve and love I couldn’t hope to have any other way. You’re the love of my life Jesus! ¬†Worshiping you is like date night only better. ¬†Like a meal after fasting for a long time. Like sleeping in after a long night. It’s just so good. ¬†Please remind me when I get tangled up in what’s going on. ¬†Forgive me for putting all the other stuff first, ¬†for worshiping other things, and people and habits and pain. I get it all wrong – a lot! ¬†But when we’re together and I’m just focused on you , I change. I’m changing. Worship helps me see you clearer, and that’s helpful if I’m ever going to become more like you. Thank you God for being so patient with me.


(Also Jesus could you comfort those who are mourning loss. I know we can’t speed Saturday up, but can you hold those who are there right now? Thank you)

(also also.. Woot Sunday!)


Tripping thru hope.

That would be the best way to describe my journey to the heart of this subject. And just like last years excavation of joy-¬† The fates, or universe, ¬†or enemy of our souls …however you choose to look at it.. is working overtime to make hope seem out of reach and … well hopeless.

Thaniel contracted scarlet fever. ¬†Read it again if you have to, I sure did. Scarlet fever. ¬†Like didn’t that die out with smallpox and polio?? ¬†for serious? ¬†But there we are, my little warrior sporting a temp of 105 + ¬†with spots, a rash, and beyond miserable. ¬†Rightfully so.

Our nights were once again sleepless, I watched my baby boy struggle to swallow and look at me with fear as he tried to understand the pain and why it hurt to drink. I laid awake waiting for the alarm to go off to check his temperature again and readminister tylenol. And as in all health hiccups with Thane, I watched for any and all changes in his bowels and held my breath. Asked my other children to be on call for extra help and to understand why I was napping during ‘movie night’ . And then my own fever began, and I held him with sympathy because his pain was my pain.

I found it adorable when the Doctor seeing to him looked wryly at me and said ¬†” ideally you won’t be the one caring for him, he’s very contagious” ¬† Both neutropenia and I chuckled under our breaths at the idea of putting my sick youngster into the hands of someone else to spare myself a future illness. I opened my mouth for her to peer into and she grimaced and gave me her sternest “why” face. ¬†As I type I’m just basking in the drug induced glow of painlessness during the strep throat that came with caring for Thaney in his need. ¬†HE IS ALWAYS WORTH IT.

Hope is definitely not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.             Vaclav Havel

What is it to hope in the center of struggle? What do you hope for, or put your hope into?  What does it look like, sound like, feel like , to cling to something when everything around you is beating at you with fevered fists?

¬†That’s just it though, Hope doesn’t need to be clung to.

Hope clings to you.

I have this vision in my head of lashing myself to that center mast..(is it mast? I don’t know, I don’t sail.. is there another word for that big pole thingy that sticks up in the center of a boat?? lemme know) ¬†Anyway, I have this picture in my head of being strapped to that thing and weathering the storms that that come my way. ¬†My arms wrapped tightly around that pole, face pressed into the wood as the wind and waves assail me. ¬†The pole being Hope, and the storms are my life.

But what I’m learning is that Hope is the ocean.

It surrounds you.

Let us hold unswervingly to the hope we profess, for he who promised is faithful. Hebrew 10:23

That pole I’m clinging to is a false sense of “I can do this” ¬†It’s a lottery ticket as a retirement plan, it isn’t going to save me, it just can’t. ¬†Silly pole. ¬†I have a friend in the Navy and she’s described ¬†WALLS of waves coming at their war ship..I bet she’d scoff at my tiny sailboat mast that I have my arms wrapped around.

The Lord is all I have, and so in him I put my hope. Lamentations 3:24++

God is our very¬†PRESENT Hope the bible says. We HAVE this hope says another verse. We’ve got it! He¬†came, He declared Himself¬†for the whole world to see and hear… ” are you tossed? ¬†Jesus¬†said..why? ¬†why do you fear?? look!! ¬†I’m right here in the boat!! ¬†I’m your only hope, and I’ve got you.”

What happens if I fall overboard into that ocean? What will I lose? ¬†Really what am I afraid of? of risk? of loss? of pain? of drowning?? ¬† I’m so tired of kicking and fighting and pushing ahead despite having no clue where I’m going, I just know if I stop I’ll collapse. Aren’t I already drowning? Aren’t I already in pain? ¬†What if I just spread my arms wide and let the ocean hold me. Stopped kicking and let the waves carry me. ¬†What if I put myself in God’s hands and allowed Him to cling to me?

I went to sleep with that idea bobbing¬†in my head and woke several hours later to a text from a dear friend that simply said ” I just felt I should tell you ‘You’re awesome”

¬†It was like a tap on my shoulder from Jesus saying ” I’m here, I got you” ¬† And I slept like a baby after that.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

Thaniel weathered the storm too. Scarlet fever behind him… one more war well fought. He’s my hero. ¬†His wee nose looks like something tried to chew it off, and he lost 2 pounds and he doesn’t trust me when I say somethings “yum” right now ( had to give him medication that was definitely NOT yum ) But he’s singing again , as is his mommy and we are floating together.

Maybe try it out. ¬†I’m just sayin. What could happen? ¬†Someone won’t get all of you all the time? Maybe dinner gets ordered in tonight? Maybe the dust settles and just stays there for a bit? Maybe you say no. Without guilt or reasons or fear. ¬†Maybe you sink. But I promise you this… The whole ocean is Hope. The wind,the waves, the salt, the sand and the bottom is Hope too. ¬†I’ve lain there this week, looking up at the sun though the storm crashed all around… the storm was on the surface and couldn’t touch me on the floor of that ocean. Let go and let God.

‚ÄúErrors, like straws, upon the surface flow; He who would search for pearls, must dive below.‚ÄĚ ¬† John Dryden.

Return to your stronghold,O prisoners of hope.

                                    * OUR FEARS ESTABLISH THE LIMITS OF OUR LIFE* 

Thats just one of the sentences that are currently blowing my mind as I work through Pete Wilson’s awesome sauce book ” Let Hope In” .  

I told you all a blog or two ago that after last years awesome sauce trek through the world of Joy, I chose ” Hope ” as this years study. So far I’m flummoxed.  

Pete says ” if we fear heights, we will stay low, if we fear people we’ll stay alone, if we fear failure, we simply won’t try” 

Wow. Yup. And wow again. 

Hope to me seemed to be a flighty mamby pamby wishful type thing. You cannot bank on hope. However, as I learned with joy, there is sooooo much more to hope than meets the eye. And this week the subject of fear as a hinderance to hope came up.  Both in this great book ( get it get it get it!!) and in my personal life.

I have a lot of fears. Not of spiders ( though seriously, I will scream and nope ) or heights, or even of dying, I don’t fear pain or danger or probably a hundred things I actually should fear… I fear emotions.  I fear anger and disappointment in others, I fear despair..and find it so hard to climb up out of it if my feet slip down there. I fear falling in love, of being that vulnerable and open to hurt again, I return again and again to the pain I’ve known in past relationships and quickly shut down or sabotage any possibility of new, despite a longing to connect and be loved, because I’m trapped in the fear…

            I fear failure most of all. Feeling like I have failed is the greatest fear in my life.

When Thaniel came along that fear reigned supreme for two solid years. At first it was the fear of the unknown. Because we as humans base our expectations on our experiences , the unknown is such a daunting and dark place. How will we know what to expect if we have no idea what’s coming??  

Pete Wilson calls what we know a fenced yard where we feel relatively safe, and the unknown is everything outside of that fence, vast and scary.  I’d never had a child like Thaniel and didn’t know what was coming or how I would handle it. Fear walked beside me as close as my shadow. 

You’ve read about my struggle within these posts. Feeling as if I’d let Thaniel down, was letting him down, couldn’t match the need, dropped the ball over and over, didn’t have what it took to advocate for him properly…was going to lose him.  Fearful all the time.  

Fear drove me like a cattle boss with a whip.  Little sleep and too much reading and far to much worrying to do anyone any good. Fear was like a vice grip around my heart. And I did it all in the name of ” love”.  Love for that precious little gift God had entrusted me with. 

But here’s a little of what I’m learning and I’m going to chipmunk it back to you in case you need to reach for hope today too. 

First…. Perfect love casts out fear. It’s really the only antidote

And since my love is always flawed , I need to ask God daily to give me His love.  For my children, for my students, for my friends and loved ones. A perfect love that will replace any fears I have.  I have to take all of the what ifs and what mights and wrap them all up in Gods great big love for me and let Him carry them. 

Secondly… are you ready for this?  Hope is solid.  

Listen…”  Through Him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character and character produces hope, AND HOPE DOES NOT PUT US TO SHAME, because Gods love has been poured into our hearts through the Holy Spirit who has been given to us.   ”                ( Romans 5:2-5) 

Hope does not put us to shame  literally means it won’t let us down. It will stand. 

Hope takes chutzpah!  It takes a very strong person to hold onto hope and not let go, but hope in God won’t let you down.  Ever. It’s worth the effort, the struggle, the push. 

As a little side story, I hate running..  hate.  As in hate. Full use of the word. However, I have a good friend who runs and seems happy about it and so I set a challenge for myself to run 8k in 45 minutes. ( no mocking me all you runners out there! I have little legs!!)  I just got on that stupid treadmill and started little by little… and it seemed to me to be an impossible goal because my lungs were going to explode and my legs would only go a few minutes before they felt like they’d fall off, and I’d leave the treadmill for the weights that I know and love, the workouts I’m comfortable with, that I’m familiar with. But then the next day I suck it up and try again. 

And it’s been painful. Shin splints and calf pain and my knees say mean things to me when I walk up the stairs now.  But I’m still trying.  And last week I ran 6k in 45 minutes and was SO elated I spent the day walking on a cloud!! The bible says that ” Hope deferred makes the heart sick, but a desire accomplished is sweet to the soul” ( proverbs 13:12)   It was sooooo sweet! I wanted to stop perfect strangers and tell them what I’d done!   That one day ( cuz I haven’t repeated that success again so far ) has been worth the pain, and pushing.  Don’t give up on hoping just yet. 

Oh Abba, 

I don’t want fear to limit me, and I really don’t want fear to leak out and limit my children either. Teach me to hope in you, to look only to you, in you alone am I waiting, you’re my only expectation.  Help me to lay my fears at your feet and walk away with your sure and secure anchor of hope. Help me to leave the past in the past and look to the unknown with hope! You are in my future!!! How can it be scary?  ” The Lord is my portion, says my soul! Therefore I will hope in Him!!”  Have you ever let me walk alone? No.  Will you ever let anything happen to me and not be right there with me to help me handle it?  No. Will my hope in you ever leave me high and dry? Nope nopity nope nope.  God thank you for your perfect love. Let it wash over me today, taking fear away and flooding into the lives of those around me. I’m so in love with you Jesus. 


Nope nopity nope nope

Have you ever?  I mean, you can’t even? not one more step, not one more bite, not one more weight, tragedy, conflict, or next thing?

I will tell you honestly, that’s where I am.  Picture me on the very edge of the teeter totter and one more heavy thing on the other side is going to send me flying thru the air.  I am one step from the edge and they’re playing polka music.

This past ‘season’ I’ll call it ( sounds so christianeese) has been like watching one of those juggling buskers who stack the rolly things and platforms under them and then grab all the balls and hoops their hands can hold and then lights them all on fire … I’m looking on saying , nope nope nope! Just waiting for the whole thing to come tumbling down.

I am weighed down.

Fighting for joy and searching up hope and clinging to the things I know beyond a shadow are true, but nevertheless… heavy. And asking God to make it make sense or give a time line on a lightening.

And I’ve been so focused on all of the fire balls in the air I’m sure I’ve been missing the little graces that surround me. But I didn’t miss them last night

I mean I nearly did, because I need sleep like air these days and every minute that tics past bedtime kinds freaks me out in a ” if I fell asleep right now I’ll get 6 hours…now 5 1/2 … ” kind of way.  But right in the middle of the freaking; Thaniel stopped my desperate juggling and held me in the air suspended on pure love. Too Poetic?  Here’s how ( and then tell me if I’m right)

He can climb out of his crib. Masterfully. {And before the sanctomommies write in to give their two cents, his new extended length special strength crib is in its box in the hallway and if I can just hold one more fire ball I’ll get around to putting the thing together.}  Last night ‘Round about 11pm (many hours past his bedtime and mine) Thaniel happily knocked on my bedroom door, and I opened it confused to see this sleeper clad monkey standing there. We did a dance for the next hour of my putting him back to bed and he waiting long enough to lull me into a false sense of security, and then he’d be back at my door, smiling up at me and saying his signature sing song “HI!”

I made a bed on the floor ( my own bed is tall, I’d worry all night he’d fall out) and I lay down beside him and wrapped my arm around him. Whispered “go seepies now” and traced little circles on his back.  He did not go seepies.  He also flung his arm around me and attempted to make circles.  I was firm with him “It’s seepies time!” He thought that was hilarious and put his forehead against mine and licked my nose. I was sooooo tempted to be angry, to get riled up and let the worry of all the things I wouldn’t get done tomorrow because of this lack of sleep tonight; rule my emotions, except for this one thought.

This was my  only job right now. Being loved by this little gift.

He gave me copious kisses.  Played with my hair and sat on me.  He put his little hand on my cheek and said my name over and over while I tried not to laugh and pretended to be asleep. Eventually his hand slipped to his side and my gorgeous baby boy fell asleep. And I stayed right there. On the floor beside him. Drawing little circles on his back and singing to him softly. And thanking God for a suspension. For the moment I’d been asking for.  A lightening.

I almost missed it. I almost shoved it under the rug of all the things that go wrong on my way to  ‘perfection’.  If Thaniel wasn’t the treasure of love that he is I might have.

Dear God,  not for the first or last time I’m thanking you for ignoring my idiocy and my ideas of  ‘right and good for me’ and giving me instead , YOUR BEST.  Thank you for Thaniel. 

Thank you also for Jen who never fails to be ready to pray and encourage, that’s awesome sauce too.

Please friend today , if you are juggling, if you are teetering… try if you can to notice the little graces meant to hold us up for a moment.  And fill your heart up on them for the journey ahead.


Where’s the rewind Button?¬†

Have you ever seen the movie ” The curious case of Benjamin Button” ? I saw it a long time ago but rewatched it the other night for kicks; and as often happens , it sent my mind on a rabbit hole of an adventure.  The premise behind the movie is that Benjamin is born old and slowly becomes a child. His life is in reverse.  I actually know someone who in a different sense has lived the same experience. 

He never missed school as a kid, worked incredibly hard to become a champion in his sport at an early age giving up much of the fun and pointless endeavours kids his age would have been taking part in, put himself through school and quickly owned and operated his own business and then signed his life away to serve his country all before age 30, he’d lived the life of a middle aged adult in fast forward .  Now he is following his passion and acting goofy and having fun and it’s like watching the kid in him be born. It’s awesome. 

Thaniels life will also be curious.  His development right now is slowed down, as if his becoming is in slow motion. At three he is still very much my baby boy and I adore that I’m getting to savour and enjoy each milestone in an unhurried and focused way. 

However at some point things for my baby boy are going to change. Physically his body will begin to age faster than even my own. He will be ” old” before he is old.  From early age to middle age doctors note the formation of Alzheimer-like ‘plaques and tangles’ in many people with Down Syndrome. His bones and joints will age rapidly. Hair loss, vision issues, hearing trouble and even though it’s getting better and better every day, his expected life span is shorter than my own… by the time the movie was over and my brain had stopped spinning down this dark abyss of fear and the unknown I was an emotional mess. I felt panicked and wanted to call a halt to the whole process. “Just let him have what everyone else gets to have!” I wanted to scream at no one in particular. It wasn’t fair. Its wrong. It’s a rip off of epic proportions .  I didn’t scream.  Mostly because Thaney was sleeping beside me tucked into my arm, the tears streaming down my cheek were dropping onto his little head.  I had to breathe deep to quell the panic. And close my eyes against the stark picture I was painting and ask God for a real word I could cling to until the storm passed. 

Isaiah 45:9 came to mind. Typically I throw that verse around tongue in cheek ,when I want someone to stop bugging me about how many children I have, as the end of verse 10 says ” woe to one who says…woman what are you giving birth to?” But verse 9 says this

  “Does a clay pot dare argue with its maker, a pot that is like all the others? Does the clay ask the potter what he is doing? Does the pot complain that its maker has no skill?”  

This is my blond translation.  ” Don’t bug me Pammelah about the way I’ve made your son, are you saying I didn’t know what I was doing when I made him?” 

But I would never NEVER imply that God made a mistake in making Thaney all jacked up on chromosomes! ( would I??? )   Thaniel is perfect. 

Dear God,  

Please help me to number my days and Thaniels days, so I remember to use them wisely. Give me a heart of wisdom and fill it with joy. Please don’t let the realities of an unperfect world marr my view of your perfect sovereignty. Thank you for the opportunity to know him and to love him just as he is, just as I am. Thanks for having a sense of humour and making me the bundle of nonsense I am. 

I love you Jesus. Go ahead and make whatever you want, I’ll shut up about it.  Amen. 

Oh ps: Thank you for the men and women who serve our country. Bless them, keep them, bring them all home.  Amen again.

Wake me up when December ends.

20170104_162116I for one am sooooo glad to see 2016 go. And not for the reasons most people are. ¬†I wasn’t particularly bothered by the results of the American Elections, I didn’t know Prince or Leonard Cohen personally. Sure cancer kinda kicked my butt in 2016 but I feel like I pushed back a fair bit and we have enjoyed peace and real joy for the most part. Maybe it’s not so much the year as that last stupid month. It drove over me like a big wheel at one of those monster truck thingys guys get so excited about.

To begin.

I took the epically bad advice of beautifully well meaning friends and decided to “get out there” and attempt to have a life. And so I ventured. And for a very short time it appeared as if I could have what everyone was talking about. A relationship built on friendship and trust and mutual… wait, this is Me! ¬† I’m neurotic and emotional and I over think and undervalue and I just don’t get it. I can’t go gentle into that good night, I don’t know how to play the game… I suck! Lol. ¬†I don’t know how to trust, and I’m still fairly sure that while I may appear to be easy to love, I’m even easier to leave and that men in reality only pause in my life to tear it apart and leave me to pick up the pieces.

And while I was fretting and over thinking and trying not to let my insecurities swallow me whole, the world around me was rocking. One of my son’s put me thru my paces by testing the bounds of my motherly love for him. Just stupid behavior and he knew better, ¬†But I began to worry that my divided mind was somehow contributing. Was I not paying enough attention? Was I daydreaming when I should have been engaging? ¬†And then Thaniel and Gabe both got sick and the nights became sleepless for us for about a week.. was my work suffering? Was I dropping the ball there? ¬† I had a very grumpy oncologist tell me he disagreed firmly with my choice to pursue naturopathic help this year.. I hate letting authority figures down… was I making the wrong choices? Was I missing the bigger picture? And in the midst of all of this I began to feel as if every turn,every direction was a dead end of failure. I was bound to miss the mark. Somewhere, somehow, someway I was going to lose.

And I did. I lost it. New years eve after a wretched day of organizing schedules for the new year, driving in the ice and snow to get kids where they needed to be, a very near miss on those roads and the internal fear that I wasnt cutting it any where, the storm in my brain built to a fevered pitch and I had one of those ‘put me in a padded room’ type melt downs.

Good riddance 2016.

Clarity is a much underrated and under appreciated thing. ¬†Perspective. The opportunity to stand back. Take stock and adjust course. I needed to do that and I didn’t. ¬†I went headlong into chaos while screaming order order order!

Only God moves on the face of chaos and calls it into being. He knits universes together, cells into people, brokenness into beauty. That’s not my job.

And I waited too long to ask Him to step in and take control.

I’ve watched Thaniel try and try and try to do a thing. He’s so stubborn. Headstrong. He’ll fight and fight and cry and scream and fight some more. It’s worse if I step in and try to do something for him. I’ve learned to wait. Quietly, patiently until he has exhausted his own attempts; and then this brilliant little boy will turn to me, make the sign for “help” and say in his adorable little voice “Hep mama?” “Hep Pease ”

How beautiful is that? What relief and comfort for us both in those words.

Help please.

And I’m so so happy to give it and to watch his little face break into a grin when he senses his want or need is going to be met. ¬†Reminds me of the hymn ” oh what peace we often forfeit, oh what needless pain we bear, all because we did not carry, everything to God in prayer”

2016 is gone. I won’t miss it. Hopefully I don’t miss this simple lesson again ( for a long time)

Last year’s devotional and exploration for me was JOY and I loved getting acquainted with the word and what it means.

2017 belongs to HOPE. This year I will be stepping out and learning what it means to bury the past in the past, leave shame and doubt behind and leap into HOPE.

Come with me. It’s bound to be the coolest of beans !

Rambling on New Year’s Eve.

It’s as if the chill outside slipped under my shirt. My skin. My heart. Frangible me, delicate see? You’re looking at the wrong picture tonight. Rag doll, ethereal. ¬†Born to obey but not ¬†feel. My skin. My heart. Vulnerable ears, intangible fears. Create whatever you want it’s alright.

I need you to forget me.

Like a dog in the car on a hot summer day.

So fragile tonight, so very cold. My skin. My heart. Tenuous grip, stiff upper lip. This is an alone that fills the cracks. Of my skin. Of my heart. A thousand came before me, a thousand stand in line . Insignificant and mute. It’s only a matter of time before my skin and my heart. Break.

Panic at the disco


I have a serious need to please. No. really. It’s somewhat crippling. Have I already told you this?  Well it’s true. It’s problematic, and sometimes it saves my tushy.

Now there’s a difference between my ridiculous need to please, and the desire to do a good job. To do your best.  The desire to give it your all is a good thing. My need to please is not. Because of it I am easily manipulated, easily crushed, easily broken.  Because some people refuse to be happy with anything, I can end up bent over something I really had no control over. I lose sleep and my lunch over things that were not in my control. I’m working on it. Bear with me.

When I was boxing it turned out to be a great thing. My overwhelming need to please my coach is the single most reason I won my bouts. I was a fantastic boxer when it came to pushing myself and the time I put in on the heavy bag and on the focus pads, but I was a horrible boxer in the sparring ring! I mean wretched!! I can’t hit my team mates, can’t do it with any conviction… I love them , I cheer for them, I cannot hit them. And so it has never surprised me that my coach had little to no confidence in my abilities before my first match ever. She ( my opponent) was awesome. Seven undefeated fights to my none, a south paw ( I’d never even sparred a south paw) she was focused well coached and ready. I was trembling, unprepared and scrambling. My coach said to me right before I climbed in the ring ” you can’t win, so just go in there and have some fun”

And there it was. His assertion that there was no way I could please him was the button he needed to push. Maybe he wasn’t being mean, maybe he was brilliant.. whatever it was it worked. I ended her unbeaten streak that day and began my own.

When it comes to work I have a driving need for my boss to like me. Not just be happy with my work, but approve of me as a person.  It makes me somewhat neurotic. If I get sick… and let’s face it, the leukaemia really ruined my shots at a ” perfect attendance ” record award…. I feel a desperate need to mask and avoid until I have no other option. Because I don’t want to let her down, let the team down, fail.

When it comes to relationships, I’ve given up. Full stop. I cannot seem to win that fight no matter how hard I try. The thought alone makes me break out into a sweat. There’s only pain on the other side of that coin. I steer clear.

When it comes to Thaniel. Oh Lord, when it comes to Thaniel, (all of my children really, )I NEED to do it right. I don’t micro manage their days, because that isn’t right. But I fall apart when they make mistakes. I over think and over worry and over guilt like the worlds best Jewish mommy. When Thaniel is sick, I take copious notes, research until I feel I deserve an honourary medical degree. I consult with anyone who has said medical degree and will give me the time of day, and I beg God for wisdom. And I cry. A lot.

My point?

Galatians 1:10 says,  ” For am I now seeking the approval of man, or of God? Or am I trying to please man?  If I were still trying to please man, I would not be a servant of Christ.”

and then in later in Galatians 2:20 it says ” I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me”

And finally in Isaiah 64:6 it says ” All of us have become like one who is unclean, and all our righteous acts are like filthy rags..”

There is way too much in those verses to blog on, but this is my blonde impression.  The only real approval I need to seek is Gods, and the word says He loved me and gave Himself for me already. It’s not me, it’s Him. It’s not ME it’s HIM.

When I seek the approval of man, I am negating the acceptance God already stamped me with. I’m saying, ” God, your love is great and all, but I just need one more opinion”   When I work to gain that approval in my own power I’m saying there’s something in me that deserves the applause, and finally when I break down because I feel I didn’t make the mark or someone didn’t give me a medal, I’m placing the flesh back in a place of importance and denying the life of Christ.

None of those things are good, in fact, for a real need to pleaser I’m not doing such a bang up job pleasing Jesus am I?

Thankfully God made me and gets me, thankfully He’s patient with me, thankfully He is made perfect in my weakness. ( Thankfully my boss doesn’t read this blog!)

Now if only I can follow my own words-



What if someone held me close? Would I break? Would I snap? What if the words were tender and sweet? Would I fall? Would I Crack? And what if somebody wanted to know; who I was, what I think, how I see? What if they looked until all that they saw; was my soul, was my self, only me? And what if they loved me? What if they said it? What if they felt it, believed it and meant it? And what if I sensed it? What if it covered us? What if like rain or like skin it became us? And what if instead of the fear and the fight, what if it felt like a lyric sung right? And what if I gave up, gave in, gave him. What if instead of a closed door , I said come in? What if I didn’t think nothings forever, but instead you held me like we were really together? What if for once the odds fell in my favour, what if for once my heart wasnt in danger?  What if?

More alike…no really.

I heard the sweetest/saddest/sweetest story this week and I want to share an abbreviated form of it with you, and then share my heart.

The story begins with a little newborn, surrendered to authorities and failing to thrive.

Failure to thrive is no joke. I was warned of the possibility when expecting Thaney. That low muscle tone, or poor reflexes may result in an inability to tap into our instinctual drive to survive. It was during those visits with doctors and the warnings they gave, that Thaniels dad began to form the opinion that he “couldn’t handle” the future with Thane.

This other little one was given to a foster family and eventually he was adopted by them, but as the telling went, I got a sense that the story teller felt he was lucky. Blessed even to have been taken in at all. Essentially unwanted, unworthy and ‘ graced’ with people who decided to put up with him anyway. Like they were doing him a favour.

I understand that. I always felt that was what God had to do in my case. Until I really met Jesus and He just flooded my heart with the depth of love He felt for stupid clumsy me… but up until then, I figured He was a ‘ Saint’ and that’s just what saints do.

Enter Thaniel. God’s living breathing walking talking pooping singing hugging loving example to me of just how deep and wide and full and eternal and all encompassing and perfect love can be. And I know my love for Thaniel¬†and he for me only scratches the surface of our Savior’s love for us both.

So here is my Christmas homily for that little newborn who felt rejected and despised and taken ‘anyway’ . It’s for you who might be feeling like you don’t qualify. For you who feel that if you work hard enough you’ll earn a place at the table.. and for Thaney bear, may you never ever feel that you are anything less than God’s most perfect design. Formed with purpose, on purpose and to my absolute joy and thanksgiving.

I have nine children (eight earth side and one heaven side) . All carried in my own body. Genetically all mine. Flesh of my flesh, bone of my bone. They should be all the same. They eat the same foods, and go to bed at the same time, I sang the same lullaby’s to each of them as they rested on my shoulder and I rocked them to sleep. I wrote them stories, and told them at bedtime, passed down the same traditions, introduced them to the same Saviour. But they are all so different. Despite all of the sameness, they are all so different. Unique in their personalities, character traits, emotions, behaviours, viewpoints. And the gap only widens as they get older. Outside influences seep in and colour the canvases once blank for my choosing.
Difference can be divisive. It can sever ties, cut communication, end relationship. Difference is scary, it’s odd, it separates, excludes, sets apart. No one really likes difference. For all of our uniqueness we are the same in that. We don’t understand difference.
How do we relate to the other? How do we communicate? How do we find common ground? Because the common seems to be the only way we bridge that gap. For some reason we are unable or unwilling to leap across a chasm and accept difference for what it is. We search for a common. A same.
My ninth child is different. VERY different from his siblings. He looks different. He sounds different. He learns different. He moves different. He was carried and nurtured and cared for the same, but he is far and away different. The very core of his DNA is altered and apart. He is genetically different. He stands alone.
And yet, his sweet unique is pulling my family closer. Despite all that sets him apart, he seems to call everyone to him. In our home, in the grocery store, in the mall and on the street. People draw near to him. And it‚Äôs not just him. We, my family and I are all drawn now to others like him. So different from ourselves, but now seemingly bound together in some strange but awesome family of ‚Äúothers‚ÄĚ . I see someone like him and my heart responds with ‚ÄúYOU TOO!‚ÄĚ I feel joined, familiar, the same.
How is this? That we are different but so alike.
Jesus was this.
Jesus was the same. Born of a woman. Carried in a womb. Delivered in a baptism of blood and water. Raised, loved, taught, and tucked in, just like each of us. But He was so apart. So very different and unalike. We considered Him afflicted and rejected and we didn‚Äôt understand His difference. Fully God / Fully man. All at once like us, and all at once nothing like us. He walked with us, and we never really knew Him. We turned Him away. We didn’t want everything that came with Him. We knew not what we did.
Until the spirit opened our eyes and we received Him as He is.
After which, everyone we met who had brought Him in; became familiar, family. We could look at someone across the chasm of race and colour and socio-economic standing and say ‚ÄúYOU TOO!‚ÄĚ And feel bound together. No free man, no slave, One God, one family. Same.
Now, I’m not for a second relating my son to the most high. Not at all. But it’s that same drawing, that same camaraderie I feel with him and those like him that I feel with the family of God. And it leads me to believe that despite our difference. We are more alike.
My children are all different. But they are more alike.
My Christian family are all different, but they are more alike.
You just need to let the spirit in.
When you see my son, and you note his difference, and you consider him afflicted and perhaps intend to reject him… stop for a second and let the spirit of him in, and see if all of a sudden you don’t find yourself in a sea of family, of oneness with humanity, of same.

Because truly. We are all more alike than different.

Everyday that I have been a single mommy to this most awesome baby boy, has been one filled with a¬†dual prayer… ” Lord Jesus, please let Thaney never feel even for a second that he was unwanted in anyway, and God, Thank you. Thank you Thank you Thank you!

And when it comes to that other little baby boy, ¬†Thank you God for him too. Thank you that he did thrive, that he found his family, that they were blessed enough by You to have the privilege of knowing and loving him, Your creation , Your glorious design. And thank you that he found You, the author and finisher of our faith, the greatest qualifier ever. Ancient of days, we love you too. ūüôā