Joy unspeakable and full of awesome.

Oh so much Joy. Choice JOY.

The kind you have to glean and cultivate, which might arguably be the best kind of joy there is.

For starters, my mommy is having better days, and while she still has pain, she can be heard laughing more and more. Much like her old self. My daddy, having fought hard with illness and the threat of cancer over his shoulder, is a constant source of strength, wisdom and awesome for me and my family. Thats crazy joyful! Many other men would have considered this present trial a reason to become bitter and grumpy.  I come from good stuff folks.

Thaniel has been relatively healthy for months now and is pulling words out of himself like a magician pulls that impossibly long scarf. Now mind you, my family might be the only ones to understand them but he’s trying and communicating and it’s all filled with awesome. He calls Moose “boose” and Maddy is “man” and Caily is “keey” and Judah is “dum”.  I mean seriously… it’s hard to handle all the cuteness.

I met with an awesome Metabolic Oncologist and he sent off a bunch of fancy tests , but he also sent me home with a lot of hope and silver type linings. I’ll take it!.

Wanna know why I find Joy so important? Wanna know why I place such a high priority on living my Joy out loud?  (maybe you could care less.. but hey, my blog, my overly quaint life lessons!)

Firstly, Joy is not happiness… that fleeting emotional high we get from finding a really cute pair of shoes.  Joy is a lasting and solid depth of character (and finding those same shoes ON CLEARANCE!)   I don’t want happiness.. it passes too quickly and will leave me high and dry when I need it most.

I find Joy important because it sustains me. It is my strength. It’s the rope I cling to, the anchor that steadies me, the protein I slowly digest during extended periods of fasting        ( sorry… gym refrence.. that just slipped in there)  Joy gives me courage I didn’t know I had, the ability to laugh it off, to smile at an angry face, to meet challenges with chin up and a positive outlook.  Bitterness or a heavy heart would not give me that.

I have lived otherwise. I was once very very angry. My husband turned out to be a liar and a cheat and the pain of that was like a living death. Eventually I stopped grieving and got angry.  At first blush, anger had everything I was searching for. I could once again get up in the morning.  I met each day with a fierce determination to make anyone in my way pay for it. I pulled off things I never thought possible. Anger and its little sister bitterness were constant companions and I loved them.  Anger can give you a false sense of strength. Keep you on your feet and moving. It can give you a twisted sense of courage. Sort of an “I dare you!!” type courage. It is not chin up, it is chin tucked, and waiting for a fight.  But anger will not sustain you. It can’t. It’s draining and empty, as empty as happiness

Fear is also a great motivator. It will bully you into doing things you wouldn’t do in a calm moment. ” I should hurt them before they hurt me”  “I can’t afford to trust, I should run now” ” I’ve been wrong so many times , I shouldn’t even try”  and seriously, fear has lead me to make some of the biggest mistakes of my life.  (On bad days those mistakes haunt me. They keep me up at night. They steal my joy) Regret is real people… poo on regret.

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Picture Joy as the roots of a great tree. So deep. They almost seem to have buried themselves into the core of the earth, and they hold that tree steady in the storm. Branches may break, leaves die and fall, but the heart of the tree is strong. Sustained.

Joy like that has to have a deep source.

I find mine in the Ancient of Days. In Jesus.

I find it important to live my joy out loud because I never know who is sitting beside me dying a little everyday without a source. Bitterness draining them dry. Pain sapping their energy, their will. Anger driving them in purposeless circles. My joy might be a light. A soft breeze. A fountain of fun.

Joy is humble. Know what I’m sayin?  If I come off like some lunatic happy freak and I blow away the poor hurting soul beside me with my “Happier than thou” self , then I need to give myself a shake.  Joy out loud doesn’t make people feel like they are lacking, or not cutting it, or worse, somehow faithless. Joy feeds. It welcomes. It accepts. It says, I’m sooooo not ok, but I’m ok anyway… and you’re alright too… come sit in my joy for a bit.

Joy is an umbrella that doesn’t deny the rain happening all around it.

It just says, “come be drier with me for awhile “.

I’ve looked on at wonder at some of the pristine fakebook stories of some peoples lives and have been tempted to feel less-than. Ever feel that? Joy out loud shouldn’t leave you feeling that way. Jesus didn’t. People were drawn to Him, even tho there was nothing remarkable about Him.

By the time Thaniel came along, and the whole “down syndrome” diagnosis with him, I’d learned some of the secrets of Joy. That I’d be ok, even though I wasn’t ok. That Jesus would walk it with me, and the sun would still come up.   When the big “C” word came along in my own life, that same truth sustained me.  Look, rain or shine, it’s 24 hours. 24. And in that space of time you have a choice and no matter what you choose, craps gunna happen… the only variable is how you handle it. I suggest you laugh… it’s a more comfortable ride.

And here’s the honest truth. If I die… I’m still gunna be ok.

Joy doesn’t happen overnight. And it’s not supposed to I think.  I think those roots need time and seasons to really dig down. I once heard a horticulturist say that a little drought is actually good for a tree, because the roots have to dig deeper for the life giving water, that apple trees bear more fruit when their branches are pruned right back and trained, that hot house tomatoes lack flavour, but wild berries are the sweetest.  I’m good with that. Today’s a good day and Joy is within my reach, so I’ll hold it out for you.  Tomorrow, maybe I’ll need to dig a little deeper to find it,

but I KNOW it’s there.

Maybe that’s the most important thing to learn about Joy.

Meanwhile, to remind me, I built a “JOY wall behind my desk. So that I could glance back and find some awesome, and so that the little roots around me could dig in too.

Sick of myself.

Do you ever just get sick of yourself.. I mean, it’s been tragedy after tragedy it seems and about the 600th time someone asks “how are things going?”  you just wanna puke because you are sick of your own dang self.

“It’s not ok”,

“it’s not going great”,

“the kids are not good”,

” I’m not fine, how are you?”

… it is a veritable tornado in your world and you are sick to death of thinking about it or talking about it or glossing it over or faking it.  I haven’t written in months for that very reason. There hasn’t been anything that I want to write about. No matter how many times little Anam asks me to write a new blog post!!  ( I love you Anam, you light up my life!! )

I have an ongoing fantasy wherein my answer to “how’s it going?” is a resounding “AWESOME!” and I mean it!

Down syndrome doesn’t give you a whole heck of a lot of ‘awesome and I mean it’… I mean, it does, cuz Thaniel is six kinds of awesome… but we are forever in a holding pattern of wait and see. Awesome this week is wretched next week… as I’ve already written , I’m grateful for the way Thaney holds me in the here and now and makes me grateful for the little victories. But I am heartsick for an extended period of peace. Real peace.

My mother has been sick for months. She contracted shingles and just happened to be that 1 in 3 that deals with the extended nerve pain afterward. It’s been months and months of specialists, exams, tests and so much pain and so Thaniels piano buddy and Gabe and Bens craft pal has been laid low and there is little end in sight. Meanwhile her caregiver and soul mate – my father – just recently came down with shingles as well and so we are missing our right hand man. Papa is the be all and end all. The glue that holds our worlds together… and he is down for the count.   I despair for my mother because I need her as the greatest example of perfect motherhood I have, and my dad… my dad is a plum line. I don’t know what is up or down without him. And so at the moment it is as if I am sailing on the ocean without so much as the stars to guide me (That’s a little over dramatic, but it writes good)  And on a side note, I’m sick to death of being on the prayer list… I know it’s ridiculous, but I feel like it’s a sign of weakness to be on repeat on the staff prayer request list.  If it were YOU saying that to me, I’d completely thrash you for how crazy that is.. but there it is. My family is ALWAYS on the prayer needs list and I feel like a class “A” loser for it.

Thaniel is walking a tightrope of symptoms and I am trying not to be overly worried about a growing trend in his breathing and bowels. He has done so so well in the last few months, that I am reluctant to envision another round of trouble.

And me. Sigh. My purse looks like a pharma plus store. I mark my days by how long I have gone without morphine.  I see a Metabolic Oncologist, a Hepatologist, an Infectious Disease specialist, a Hematologist and an Immunologist.  And now there is a blood clot. My right calf. It’s painful and swollen and hot and stupid.

I’ve had a blood clot before.. that moved like a wall toward my lungs and exploded into my left lung like an army battalion . ( see PE)   The result of which was intense pain, an inability to breathe for quite some time, a lung scan that looked like I’d been peppered with shrapnel and months and months of blood thinners and one doctor who called me “lucky” because ” blood clots don’t come and go, blood clots come and YOU go”.    And I’m just sick of myself and everything that comes with complaint central.   I want a holiday from symptoms and syndromes and such. I long for the days of sunshine health, of weight rooms and gyms and long afternoon runs and protein shakes. I miss talking about how much my three lift is and not how much narcotics I’m taking.

I’m sick.

Of myself.

I’ve heard it said that cancer robs you of your personal story. That you get melded into a joint narrative. And in some senses that’s a great thing. You become a fleck in a massive sea of understanding.  I’m just sick to death of this story.  The end of it is always the same and I am just bored. Bored of the plot line and the predictability with which this disease progresses. We get it cancer. You come, you take, you break, you steal. We are over you already.

I’m ready to write about the joys and triumphs, the milestones and masterpieces! and so if you will indulge me for the next few weeks, that is exactly what I will be doing. No more focus on what isn’t and what shouldn’t be. Instead I will be trumpeting the glorious joys and wonders that God is making apparent all around me. Because I know He is, I just have to be on the lookout for them.  If it seems a little contrived, I apologize.  If it feels a little fakey and put on, too bad, suck shoes… I’ve earned some make believe ok, little victories are still victories… no one needs to scale mountains over here, we’re just looking for beds to get made and for the dog to remember that the garbage isn’t a food source.

To start with, I should mention that Thaniel is beginning to put real words into his everyday speech.”Baby”, and “shoes”, “eat” and “No!”  Awesome sauce words.  When he’s dancing to Megan Trainor he’s singing NO NO NO! and when I get him ready in the morning he signs “shoes” and then says the word before I slip them on his feet. This is no small feat, this is months and months of repetition and playing silly games until the relationship between words and their meaning began to sink in for our little man. Watching him wake up to language is akin to watching Mozart discover notes, or  Michelangelo awake to colour. I feel divinely blessed to witness the splendor of discovery in Thaniel. No matter how many children I have, it will always be an immense gift.

Hold on inter weebs… it’s about to get a whole lot ‘fierce-joyable’ in here!!

 

I see feet. (lessons from rm662)

So I haven’t written in a while. For several reasons, firstly there really hasn’t been time… holidays and appointments galore and by the end of the day there just isn’t any anything left. Secondly there hasn’t been much in the way of Thaniel-ism’s to write about. The big news on Thaniel is there isn’t any! He’s healthy. Really healthy. There were a few false starts to that health, and a bit of figuring to do to get the whole picture looking good… but he’s finally on an upswing. Once I began to thicken everything he ate and drank and his lungs had a chance to heal, the difference in his overall health was profound. He’s eating, everything! and beginning to talk real baby talk, and developing. More than that, I’m able to concentrate on his development instead of what his temperature is and where his weight is and if his tummy is distended. It’s glorious.  Somewhere in the middle of that glorious relief my body said “I’m done” and the beginnings of a perfect neutropenic storm began.

I’m neutropenic, which just means I don’t have enough white cells to fight infection. I make them, but my own body kills them off before they can mature and be of any use. It’s called ‘chronic autoimmune neutropenia’, and for the most part it doesn’t impact my life too much as long as I follow some pretty simple things and keep an eye on potential hazards.  Somewhere in August I got a stomach bug (Thaniel had gastroenteritis secondary to a strep bug… and he shared with mommy) We were at Sick Kids hospital when it hit… I ended up in my own little stall with a bucket calling encouragement to him from behind a face cloth. That stomach bug invaded my liver, the liver put some pressure on my kidneys and I ended up in the hospital.  With drugs and a careful eye I was released and did ok until December, when another infection cost me a week in hospital and a more worried expression on my doctors face where my liver was concerned and finally that same bug sent me back to the hospital and surgery just last week.

That’s a lot of useless information for you. Here’s the good part. God showed up to teach me something really great while I cooled my heels on the geriatric ward (yup.. no rooms on the internal medicine floor available, so they put me with the seniors and closed the curtain around me)

At first I couldn’t even speak my throat was so swollen and sore. Razors met me every time I tried to swallow and a fever kept me pretty out of it, coupled with the painkillers dripping into my veins, the first two days were more or less a quiet foggy hum of ambient noises and sleep.  Then I began to wake and become more aware and I’m telling you, the place was a bit of a circus. It reminded me of a day care. Kids crying, shouting, playing, sneaking out, throwing food, hiding, and making general mayhem… except they weren’t kids, they were an army of 90 somethings bent on keeping their nurses busy and on their toes.   Lets call my roommate “Ann”.   Ann was 94 and in hospital for a fall she took that bruised her hip and knee pretty bad. It was thought at first she had a small fracture, but after ONE xray they determined it was just badly bruised. I emphasis ONE only because according to Ann she’d had two days of x rays and had a broken back and was planning on suing the hospital. Ann did a lot of hollering, a lot of calling for help, for a rescue, for a phone, for her daughter, for anyone to come and help her get back to her own bed. Because tho she was absolutely unaware of her actual surroundings, she was acutely aware that they were not HER surroundings.

I resented Ann for the first couple of days. I was tired and in pain and I wanted her to be quiet. I wanted the nurses to do something to fix her so I could get some peace. I wanted them to move her,  to move me… (If i’d been senile I probably would have started to shout about it just like her! ) If by rare occasion she was quiet a nurse would inevitably come in to check my vitals or give me more meds and Ann would call in her tiny granny voice “I see feet!”  and that would begin a rant about the bugs on the wall, the raccoon under her bed, the terrible menu and an eventual call for her lawyer. The nurse would leave and I’d be left with her ramblings and dementia.

I sound cold hearted don’t I? I know… give me a second…  I didn’t stay resentful just so you know.  The pain became more bearable and I grew some compassion and remembered I’m supposed to love like Jesus loves… so I began to pity Ann.  I had this awesomely spiritual moment of clarity wherein I stopped wondering “why me” and felt God had put me in Ann’s room to pray for her. Of course that’s what I was doing here! I was meant to pray for poor wee frail demented Ann. And pray I did. I noticed that a lot of Ann’s rants were spiked with a heavy dose of victim mentality. Blathering on about how she didn’t want to bother anyone, wouldn’t take much of their time and would pay them for their trouble if they would just get her a phone so she could call a cab to come take her home… or how she was sure her daughter had died on her way home and no one wanted to tell her about it and that was ok, she’d forgive them, she knew how busy everyone was… if they would just get her a phone so she could call her daughter and check, she wouldn’t even say hello, she’d just hear her daughters voice and hang up… sad huh? made me almost cry. So I called on my pentecostal upbringing and I rebuked stuff and renounced stuff and bound stuff. I prayed against all kinds of stuff and named and claimed some other stuff and stretched my hands out toward the curtain that separated us and I prayed up a good ol’ storm. It was all very holy and super spiritual.

And then I sat back and gave God a minute to be impressed by my super holy super spiritualness and rested in my unshakable faith that God would answer (hopefully by shutting Ann up for a bit ..er… giving her peace)   However God did not in fact answer. Ann continued to rant and ramble and I had my dad bring earphones from home so I could drown her out with daytime tv.

When my rental tv ran out and Ann was out for therapy, God had an opportunity in the quiet to deal with me.  And here’s what I learned.  It was pretty cool… you might wanna take notes (or just print this off, probably easier)  It turns out I was NOT put in Ann’s room to pray for her.  We do a whole lot of that don’t we. Praying.  And we talk a lot about how we don’t do enough of it. We all need to pray more. And pray for one another more, be faithful in prayer, pray without ceasing, “I’ll be praying for you”  and all that.  And it’s all good! it’s right and true and good.

But Ann needed more than just my prayers. She needed me. Thats what He showed me. I was the answer! I was right there. I was a curtain away from her need and her pain and her loneliness and I could be an answer and not just a request maker.

I swung my legs over the side of my bed and as soon as they hit the floor a little voice called out “I see feet!”.  I moved the curtain from between us and toddled over to her side. Her blanket was all smushed down, so while I introduced myself (several times until she heard me over her ranting) I straightened out her blankets. Then because she was still cold, I gave her my extra one, she called me “that nice girl who gave me her blanket” from then on, even during her rants.  After that I started to answer her when she’d be calling for help or calling for her daughter or such. Even tho the nurses advised I not encourage her, it seemed to quiet her faster if someone at least responded. Since Ann couldn’t reach her call button, I started to use mine and think up little reasons for calling the nurses in and would often add…”oh, and Ann needs her pillow picked up, she threw it again” or ” also, Ann was pulling on her catheter again, you might wanna check it” or ” By the way, Ann hid her cookies in her pillow and now she can’t find them, she’s going to sue someone if they stole her cookies”.   Her rants revealed that she was a war veteran and somewhat of a hero. I also learned she was used to the Red Cross coming into her seniors home and tucking her in, she slept better after I started tucking her in.  She wouldn’t take her medicine,would forcefully spit it out,  convinced the hospital was trying to feed her opium and make her a “dope addict”  (a throw back to her war days when she witnessed soldiers strung out on drugs) So I asked the nurses to keep the curtain back when I took my meds and would show Ann there was nothing to be afraid of.  I started to love Ann.  Ann’s little voice and her “I see feet” made me smile and giggle now instead of wince.

I miss Ann.

How beautiful on the mountains are the feet of those who bring good news, who proclaim peace, who bring good tidings, who proclaim salvation, who say to Zion, “Your God reigns!” (Isaiah 52:7)

That’s a lot of verbs in one verse. Thats a lot of doing. It’s active and moving. If it read ‘How beautiful on the mountains are the prayers of those who wish for good stuff” I would have gotten an A+, but in the ‘bringing it’ department I was a failure.  Please don’t think for a second I’m saying I shouldn’t have prayed for Ann, or anyone for that matter… of course I’m not. But God really dealt with me about trying to be more of a doer and less of a delegator.  To be His arms and voice and feet.  Somewhere someone is praying that YOU will be those feet for their loved one. They are praying desperately that feet will bring their co-worker, sick child, lost family member, estranged spouse, some good news, some peace and the story of salvation.  Somewhere Someone’s broken heart needs to see you coming and respond “I see feet!”

I learned all that AND got to eat a lot of Jell-o. Not too shabby my friends. Not.Too.Shabby.

IS THERE NOT A CAUSE.

If they had any idea of who I am, how I tick… words like , “we’ll see” and “tentative” wouldn’t flop out of their mouths like dead fish on a grocery scale.  They would understand that I live in the known, in the understood, in the answers. I flounder, like said fish in the unknown.  I was made to know. To puzzle a thing out until the maze is straight , the path is clear, the clouds part… soooo many other euphemisms and analogies… we could absolutely drown in them.

menthane But there I am, slightly sleep deprived in the x ray room with my lead dress on and my beautiful lead necklace snug while I feed Thaniel barium concoction after barium concoction and I know I wasn’t meant to hear the excited “There it is!!! aspiration! that’s a positive!”  but I  did, and I broke down then and there, even before we’d moved on to thicker puree’s and other answers, because this was confirmation of a years worth of worst fears and I was one part relieved and justified and one part inquisitive  and all parts  horrified as the truth of Thaniels situation sank in deeper and deeper. Each bottle, each lovingly handmade meal I painstakingly spoon fed into his wee body was slowly but surely drowning my son, as he aspirated on it.

I asked for a swallow study a year ago. I questioned the constant chest colds and pneumonias , I was angry at the pronouncement that “that’s just down syndrome” and that “they” have weakened immune systems, “he’ll just have to outgrow it” . But I followed the treatment. I adapted to the program. I failed my son at every turn and today I am brought so low and only held above water by the words of other mothers/nurses who have buoyed me with words of love and encouragement like “anyone would have done the same” and “you couldn’t have known”

Let me paint you a picture.

My son, tiny, helpless, gasping for air, fevered damp hair pressed against his head, tummy distended, shiny and red, he’s too weak to cry and I’m clipping him into his car seat while I pray under my breath… “Father touch him, Yeshua heal, Adoni undertake, see what I can’t, YHWY please!!! ‘ Driving in the dark down highways that have become familiar despite my country girl upbringing. Pulling into parking spots I now deem “favorites” .  Running with a stroller laden with a bag I have packed and ready in the car at all times into the emergency department with the words “dr…. is expecting us” on my lips.  What follows is a history… I have it memorized. A few cursory tests that are simplified and expected. Then the I.v, it takes several tries. We hold Thaniel down. The chest x ray is next. It’s always pneumonia.  We ultrasound his tummy, his bowels are backed up, he’s full of infection, he’s struggling to stay awake now, he’s weak. There’s vomit on his pajamas and his pant legs have blood stains on them from missed i.v attempts.  It’s 2 am, I’ve been up since 4 am the day before  because he wouldn’t eat and wouldn’t settle. He’s been in my arms in the rocking chair since I picked him up after work 9 hours ago.  His daycare worker is concerned. I am “concerned” ( what I really am is terrified).  What I don’t know is killing us both. I’m jealous of the knowledge his doctors have, I want to ring them like rags until what they know drips out onto me and makes me a better advocate for this little piece of heaven I’ve been blessed with. We are wheeled up to a room around 6am, I’ve emailed work… I won’t be coming in, I don’t know when I will be back.  I don’t know what is wrong, I don’t know what will fix it, I don’t know what I will do, I don’t know who will take the boys to school, make their lunches, get maddy and cail to work, take the dog to school, yes, the dog to school, help Judah with his home work, pay the bills while I’m bent over a prone body, hold benji during his night terrors, make dinner, do recess duty, be the mom/dad.  His dad sends a text “how is Thaney doing?”  ‘not well’ I say ‘can you help??’   ” you know I don’t handle that stuff well” and we hear nothing else from him… I don’t know, I don’t know, I don’t know.  It’s our third I.V today, they keep collapsing.  He isn’t responding to the new antibiotics, his body is rejecting the treatment. His lips went blue last night and and we put oxygen on, He has a tube in his nose, up his bum, in his arm, into his heart, and I still don’t know anything more than I did when I came in.  Two steps forward, three steps back.

This is the last year. THE WHOLE LAST YEAR.

This is the norm. I’m told this is to be expected. I’m frustrated but chastised because this is what we all face and didn’t I pray just to see my son born alive? didn’t I say “any condition Lord just get him here?” so who am I to complain?  So many have it worse, have it harder, have to say goodbye… suck it up, be grateful,

He has scars. I have scars. We are scared as a family.

I am blessed, but broken.

And then in an instant all of those hours and days and weeks and pain and questions are swept into one giant dust pan. “Aspiration”. He’s drowning. Daily. On the food I give him.  But there’s a cause.

David the beloved said it once.. and I feel it. “is there NOT a cause!”  He was talking to his brothers.

The philistines were taunting. The enemy was standing at the battle line and they hurled insults day and night. and David came apon the army of the Lord cowering in fear and in a second summed it up. “IS THERE NOT A CAUSE?!~”

In a few hours that boy  David would shuck off a suit of ill fit armour and grab a handful of rocks. Not alot. Just enough. He’d stride, loin cloth and slingshot up to the battle front and listen to the enemy call him a dog. a toy, a nothing.

I’m nothing.  Against Hirschsprung’s and trisomy 21, I’m nothing

He eyed up the competition, he took quick stock of the situation and he asked his bigger wiser brothers, “Is there not a cause?”  Doesn’t this situation warrent a response? isn’t there something we should be doing?? Isn’t there a plan of action? a reason? AREN’T YOU GOING TO DO ANYTHING!!!  And then he did… He just wound up and let one fly. Faith in flight. Size ain’t where you get your power from.

I distinctly remember feeling like I should be stomping my foot. A sense that I should be digging in my heels, an embedded response.

And then the last taunt landed over the battle lines, one more doctor asked if Thaney was in daycare and when I mumbled a guilty “Yes” and the wiser, more educated GIANT head across from me nodded in condescending pity I snapped

I cried and cried and cried. I cried so hard they couldn’t understand me, I cried so hard they couldn’t console me, I cried so hard they began to worry for me… and they called up a social worker.  Someone to mop me up and figure me out and get me to consent to the next treatment without histreics.

She ended up being my slingshot.

“are all the kids in your sons daycare in hospital??”

“no”

“oh”

“are all the kids in your elementary department home sick?”

“no”

“oh”

“so maybe it’s not that?? maybe it’s something else? maybe not everyone gets this sick this often??, maybe someone ought to ask why…”

She urged me not to quit my job, which I had just naturally assumed I’d have to do because who would purposefully do this to their own child??, she asked me to give her a chance to get me into the Down Syndrome clinic and see if they had more answers than what I’d encountered  so far. She asked me to have hope. She said “Is there not a cause?”

Flash forward to yesterday to those two doctors excitedly exclaiming over the first of many x ray’s “That’s positive aspiration!”   I should have been upset at that, but I wasn’t. I broke down in relief, in thanksgiving.. the giant had just received a blow to the head.

A cause, a reason, a justification. No more “that’s just down syndrome“, no more ” he’ll grow out  it”  a hint, glimpse, a shot.

We are a long way off. There are roughly 400 reasons why Thaniel would be aspirating what he eats. But the stone has left the slingshot and it’s embedded into the forehead of the enemy. An army is chasing it down now.

I know later David danced down the street in his loincloth, I know he celebrated and partied like it was 1999.. but I think maybe that particular day, just after he’d taken the head off of the giant that had for so long taunted and held captive the armies of Israel… I think he may have been a bit like me today. Maybe he found a quiet place to lay down his sword, put his head on his drawn up knees and wept.  Too long at war, too long harassed, too long unheard and now just crying for the lost, the wasted, the spent.  I have spent this day weeping in little bursts of grief for what has been, whats been lost, what shouldn’t have happened.

BUT WAIT

Tomorrow we celebrate.

Look out tomorrow.

Petechiae. Wait… what? … {June 2015}

As I type this Thaniel is in the hospital. The best I feel my country has when it comes to children. The Toronto Hospital for Sick Kids.  This would be a big long post with a big long explanation of how we got here to this point and what’s happening next, if he wasn’t a few nano meters from me sleeping for the first time since we held him down and poked him over and over to draw blood and place an I.V.   I’m just going to say this for now and post an update later.  Thaniel has petechiae all over his wee body.

Apparently that means his platelets are low and they are testing for all kinds of things now. Including leukaemia. The dreaded L word in the Down syndrome world.

I’m going to stare at his angelic face until they come back with results that say otherwise. Until they do… Stand by1433907527064-178693054.

 

*Update*   October 7.2015.

Well we ended up staying the month at Sick Kids. Thaniels results of those first blood tests came back and cleared him of everything except for low platelets (Praise God!).  He was worn out and sick. Enterocolitis, RSV,  dual ear infections , adenovirus with a very nasty and strong version of pink eye (that he shared with mommy and a couple of the nurses)  and something called C-Difficile . The month that followed was a veritable tight-rope. Enterocolitis needs a strong antibiotic to fight it, conversely C-difficile feeds off of antibiotic use (the lack of good bacteria) and both are potentially deadly.  I watched the medical staff fight alongside Thaney everyday.  He was constantly dehydrated as a result of the diarrhea brought on by the c-difficile, but his wee veins would blow out and render his I.V useless. His veins were limp and difficult to get an I.V because of the dehydration and the Phlebotomy team was called up several times a day to move defunct I.V’s to another sight until all options were exhausted and a Central line was placed. For 24 hours that gave Thaney a leg up until the line moved, coming out of the heart and lying dangerously close to it causing some arrhythmias and concerns about keeping it in. That 24 hours however bought his little body just enough advantage and he seemed to turn a corner.  As soon as safely possible Thaniel was taken off of as many of the antibiotics as he could be and the c-difficile was treated. Eventually the irrigations produced more than just putrid green water and Thaniels bowels began to work again and after four weeks of TPN and crossed fingers he ate his first solid meal by mouth and the light appeared at the end of the tunnel.

All in all the month was a blur for me. Exhaustion added to my own immune issues and I struggled with illness and eventually went on powerful antibiotics of my own to ward off what I could. Thaniel and I floated from day to day leaning on the strength of the nursing staff and the prayers of family and friends at home.

I have to say honestly that I broke down more times than I care to think about as my ability to laugh it off and see the positive was drowned out in a sea of question, doubt and helplessness.  I wasn’t alone.  Nurses cried with me when we had to hold Thaney down for another painful procedure, and one time I was even graced with a beautiful display of compassion and empathy; when an exasperated nurse, upon hearing that one course of treatment had created a brand new issue for Thaniel, put her face in her hands and cried a few of her own tears for him.  I owe them all a huge debt of gratitude.

I didn’t come back to the computer to update because quite frankly it was a difficult season and there has been a storm of activity since.

Firstly Thaniel was accepted into a great clinic that specializes in Down Syndrome care… Someone finally listened to my frustration over his health and he is seeing doctors from a plethora of specialties to pinpoint exactly how to help him out. And secondly he hasn’t slept a solid night thru since June, waking three and four times a night and having to be comforted back to sleep.  (yes I have tried the ‘cry it out’ method… it’s cruel and unusual when your little one is sick, just sayin) . Mommy is bone weary. Balancing home and family with work and Thaniels issues has left me thin in the ‘extra rope to cling to’ department. Some mornings I am literally sick to my stomach from lack of a solids night sleep, and feel it must be said… having babies is a young chicks gig!

As I type Thaniel is home with pneumonia.  It began as a cough he brought home from hospital following surgery September 11th and it hasn’t let up, settling farther and farther into his wee chest. The puffers are back, the humidifier is back on, the trial doses of antibiotics and vitamins are in full swing. His fever is a few days old now and climbing.  This is definitely the “down” side of ‘down’s’

But here is my declaration for anyone who cares to hear it.

My God is enough!. YHWH is more than enough!  All I and Thaniel and my family have needed HIS hand has and will provide and GREAT is His faithfulness to me! Stay tuned to hear how God turns every trial into good for us, because He was, He is and He will!

 

Lost and Found.

Some years ago I lost a baby.

That’s not news worthy, barely noteable.  It makes me another one in four who have experienced loss through miscarriage or stillbirth or infertility. I have girlfriends who have suffered, suffered longer, suffered more.

What is of note {for me} was my reaction to the loss.

I am, for the most part; a person of joy. Silver lining, cupcakes and unicorns, bright side looking kind of person.  I have a long standing belief that you can laugh or cry about a situation and it will not alter the outcome one iota, so you might as well laugh, and I do…a lot.  I know that rain falls on the just and the unjust alike, so you’d best learn how to dance in the rain. That’s just who I am.” Baby I was born this way”.

When I lost that baby I was already in a state of ‘unknown’ , where just about the only thing I knew for sure was that I loved this little one.  Held my hand over my still flat tummy and whispered promises of love and security.  I wanted this baby as much as I had ever wanted anything, despite the surrounding circumstances.  I had dreams at night of his sweet downy head laid on my chest, and I sang… as I always do, to this little angel. Joyful Hymns, love songs, lullabies.

However, at the time I was stressed and scared and slept little.  I’d been training hard in the weeks prior and even sparring. This wasn’t the first baby I’d carried and sparred in the ring with or even trained hard during the early weeks (without knowing I was expecting) but when I began to bleed, I also began to question,  judge,  condemn.  When at last in spite of my pleas for him to stay, in spite of my tearful prayers for God to spare him, he slipped from my body in a wash of agony and tears and was forever lost to me.  I knew, I mean I KNEW, I was to blame.

mea culpa, mea culpa, mea maxima culpa.

I get pregnant and deliver healthy babies. I just do. The pregnancy may not be uneventful, I may experience bumps along the way, but at the end of all things, downy wee heads rest on my chest. So clearly and without a doubt; I had done this. I was to blame. I was guilty.

That guilt began as a niggling idea and grew on a daily basis, until it was a constant companion.  I was angry at myself all the time.  I didn’t deserve to mourn and so I held the ache like a gnawing rot that would slip out in groans at night. I became reckless. I trained to exhaustion. I pushed the boundaries of my pain limits. I stopped eating if I felt I didn’t earn food.  I lashed out at others while I mentally punished myself. I shoved my loved ones farther and farther away and embraced a solitary thought life. I lost relationships as shame urged me to push away anyone who might see me for what I was , I lost faith in my right to approach the throne of God , I lost myself and hid the map.  I felt utterly lost.

Not the only woman to ever feel loss, but convinced I was the only one who’d deserved it. In my mind, I had failed my son and the One who had gifted me with him , I’d cost this sweet baby his little life… I was a killer.  Even now as I type this I’m choked up thinking of how hard it was to finally kneel at the site of my sons burial place and say anything other than a strangled out ‘I’m so sorry’.

jaze

Enter Thaniel.

I guess you’ve got to have a skewed sense of stuff to really follow my thinking.  Try this, look out at the world, tilt your head to the right , squidge your left eye up and stick your tongue out of the side of your mouth… there you go! now you see the world as I do.

Because I’m guessing that someone looking at things straight on would have figured that I saw Thaniels coming, and the diagnosis of Down Syndrome as punishment. Just desserts for past crimes.  I’ve heard of women and men who have said “what did I do to deserve this?” or “why me God?” and I said those things too, just not with the anguish or anger… I said all those things with awe.

God had seen fit to give me a second chance!. He’d opened my womb again in spite of staggering odds and was giving me a chance to redeem the loss. I couldn’t ever replace him, but I could honour his life with how I lived mine.

When I met Thaney for the first time and he put his downy head on my chest and those almond shaped eyes looked at me with such quiet trust and acceptance, I knew I was forgiven.  I couldn’t believe God had entrusted me with someone who would need more than just a mommy.. he’d need an advocate, a champion, a vigilant protector.  Oh how good God is!!

Like Peter who’d betrayed Jesus three times and KNEW his guilt, felt it, wallowed in it, carried it like his own splintered cross until Jesus offered him an equal opportunity to answer for his yuk… God had given me a baby I’d not only have to love but fight for over and over.

Such incredible grace poured out for my sake.

Yesterday a little girl from the school was at my desk and looking at a picture of Thaniel. She innocently asked a myriad of questions and then summed up our conversation like this.

“So not everyone gets to have a baby with Down Syndrome?”  {notice the word ‘gets’}

I reply “nope”

and she says “then I guess you’re pretty lucky , cuz you got one huh?”

*Holding back tears and trying valiantly not to grab her in a bear hug*

Yes.. yes angel I am. Lucky, blessed, cupcaked, silver lined, unicorn kissed, bright side sunburnt.

Found.

Thaney1

Down for the count.

Just before the advent of Thaniel, I was training for a figure competition. Kind of like a bodybuilding competition but less muscle-ey and more bikini-ey.  I did two a day work-outs, weighed my meals, Ran, stressed over poses, worked out some more, fretted over lifts and reps and revelled in the power I felt in the gym, in my body and in the control I had over shaping it all. I was winning. My coach was pleased. And then the stick turned blue.

As soon as the ultrasound tech and the midwives confirmed that Thaniel was outside the norm, I began to research. I understood he may be born early (and given that my last two babies were a month early it seemed likely) I knew low birth weights were a factor in all kinds of issues and so I ate. And ate. And ate. I gained 80 lbs with him, kept him in the 85th percentile throughout the last half of his pregnancy and at 6 weeks early he weighed a whopping 6lbs8ozs. I’d done it!

However, I’d done something else.

I’d gained an entire person in extra weight that didn’t leave when he entered the world.

I let it go at first, because I believe life and birth are tantamount to everything else. I gave myself the year to nurse him and be the mom and be soft and relaxed. But then when I weaned him I began to turn my eyes toward ‘getting back into shape’ .

I’ve lost 30 lbs so far. And a lot of opportunities to ‘enjoy’. I’ve denied and passed up and felt bad about every ‘failure’ since I began to diet. And today I’m wondering if what I’m doing has merit. Will it be enough? Will I ever be satisfied? Who gets to say when I’m done?

Don’t get me wrong. Fit and healthy is awesome. I need to be fit to handle the future Thaniel and I have together. But am I expecting beach body glam when I should be aiming for play date darling?  Is it vital that I’m a size four or can I just feel fabulous now?  A pound from now?, a size from there?

I have to be honest, a lot of my ‘person’ is tied to my looks and how I view them (even tho I’d love to not be that shallow) and so I won’t lie and say that I can do sweat pants and ponytails and be ok. And I love to box.. I mean I LOVE boxing and you can’t do it without a certain level of fit-ness. But do I need to be ready for the golden gloves? or can I stop mid class and take a breather?   How good is ‘good enough’?  For a praise and glory hog,  self admitted people pleaser and affirmation needer ,that’s a tough question.

may 046

Thaniel needs hearing aids, maybe surgery, maybe implants, and this whole last week I hover on the brink of tears.  I had to leave devotions yesterday morning before I dissolved into buckets of unshed grief-stricken blubbery sobs. The message was on asking for help, for getting the prayer we need, on coming boldly to the throne..chutzpah. I didn’t/don’t have that right now.

Mrs.Farrow…I’m nebbish.

Am I sad about his hearing? … yes, but the doctors are fairly sure the damage can be reversed.

I am bent double over the fact that I knew something was wrong and in an effort to not be ‘that mom’, I allowed my head to be patted and my fears to be shelved and I did NOTHING.   I took him to the audiologist and was ok with the “wait and see” we got.  I had him seen by family doctor and pediatrician and swallowed the uneasy feeling when I heard the reassurances given.

Now “hear” we are.

I was not good enough as his mom and I let this rather large ball drop.

If you were telling me this story, I’d serve you up all of the phrases we reserve for just this time. “you are doing the best you can” , ” It’ll be ok” ,”You can’t do it all” and others. But we don’t receive them unless we believe them, and I don’t believe them.

Just like I don’t believe I’m ok at a size 8.   How good is ‘good enough?’

The bible has an answer for that. It says there’s no such thing as “good enough”. That we’ve all fallen short, we all miss the mark, and even the good we think we posses is ‘filthy rags’ compared to God’s goodness. And there’s where I’m hiding. In God’s goodness. In God’s strength. In His ability to take the wasted and the broken and the weak and make it beautiful, make it right, make it whole. And I do believe that!  Lord, heal my unbelief.

I am not a size 4, I’m not a perfect mom, and I can’t back up when I punch… God and my coach both know.  And if you pass me this week and I look a little teary, please ignore it.  Failure cripples me, but God heals me, so I’m fairly sure I’ll be fine in no time. Perhaps like Thaniels ears, there is a chance for complete healing.

BTW’s if you haven’t done it already.. get your wee ones hearing checked.  And double checked! (haha).   I’m pretty much loving the E.N.T  (ear nose and throat) doctor who caught this now and set off all the alarms.

Call in your area for hearing clinics, most infant hearing tests are covered.

Thank you, Dr.Riddell.. as well as The Orangeville Hearing Clinic -http://www.hearingclinic.ca/

Should I be worried yet?

I’ve met a lot of parents in the last 20 months.  And they all willingly and welcome-ly share their journey. For the most part its.. ” yeah… the first three winters were rough”  Or, …”yeah, he had that, he got over it tho. They grow out of it.”    And “Hold on, it’s gets easier”.   A few say “Enjoy this, it gets a LOT harder.”

But through each telling I have a niggling. My questions are not truly being met. Their story is being told, and for THEM it is a solidifying and affirming experience, but for me, the question looms.

Should I be worried yet?”

htc 121

The general feeling I get is “NO”.

Nothing what-so-ever to worry about. Because these others all came thru, these others all came out on the other side, these ones are ‘fine’.

Except.

Some are not, Some did not.

And those ones don’t come to ‘group’ anymore. They aren’t talking. They are silently nursing their grief, anger and sadness. And I don’t want to join them.

My son is still coughing.Too much. He is still wheezing, a lot. He still lays his head down on top of the radio to “hear” the music and now he doesn’t hear me when I enter the room.

He doesn’t hear me.

I come in, call to him, clap my hands, and sing his name, but he doesn’t hear me.  I’m thinking it’s time for a second opinion. A louder voice. A ‘bigger’ doctor to weigh in on Thaniel’s ‘Rightness’ .

I’m so Canadian, so polite. The thing that holds me back are the smiling faces and soothing voices of all the mommies saying “oh don’t worry.. My little guy did that until he was…” fill in the age here.

But what if he’s not?

I allowed the same polite nonsense to mess with the first few school years of my third child Joel.  His teachers insisted something was wrong,  his father and some well meaners insisted there was not. He needed more discipline, “we didn’t have such a thing as A.D.D, back in my day”  He needed prayer to ‘pray’ it away, I needed to add more structure to his life, take sugar out, put greens in, take gluten out, put juices in, take wheat out, put fish oil in, take sulfides out, put minerals in… the list was endless, the expectations lofty… I tried it all and each failure was mine and his. His father called him ‘retarded” and asked his little four-year old face “what is wrong with you?”

By grade two he was uttering such phrases as “I’m too stupid to live” and “I’m sorry I’m me”.

It is to my shame that I let it get that bad, but it was at that point that I stopped being polite, and I called in the big guns. He was seen, and seen again and tested and tested again, and one tiny pill, for a few paltry years restored my sons dignity, his ability to form social relationships, the self-control to sit thru a class and follow instruction and by the end of primary school he was weaned off of it and had learned the coping mechanisms to take himself thru to the end of high school.

Could I have acted sooner? Could I have prevented harm? Could I have protected my son?

YES.

But I didn’t.

Should I be worried yet?

Some will say yes. Some will still say no. I’ve heard all about colloidal silver and green diets, wheat free and oxygen therapy , paleo and vegan, red meat deficiency and my favorite so far.. the “wait it out” method.   I’m starting to get hinky.  I’m starting to wonder if I learned anything the first time around or do I need a two by four to the forehead to understand that I AM THE MOM.  … “I am the sword in the darkness. I am the watcher on the walls. I am the fire that burns against the cold, the light that brings the dawn, the horn that wakes the sleepers, the shield that guards the realms of men.”   To quote a much better writer than I.   And the time for being polite ended the day my first baby boy took his first stuttering breath 22 years ago.  Who knows, maybe I just needed this nudge today. Maybe I just needed this push.  Feel free to add your own if you have wisdom to share.

However, if you have some new fangled,  shiny bangled, prepackaged, free ranged, hocus pocus diet and exercise plan that involves my son and I dancing under a full moon while chanting nursery rhymes….um.. Thank you politely , but we are full up.

phone pics April 002

come and see

Today’s staff devotions have been tumbling around in my head all morning like a load of towels in the dryer, heavy.  The video clip played dancing on my sub conscience and my heart like a river dance troupe ( https://vimeo.com/79288467 ).   The song ‘there is a fountain’ is the playlist that accompanies my thoughts and I’m driven to write. To get it out, to pour out of me the thoughts that want to be set free.

Today’s staff devotions dealt with a Christian perspective on homosexuality.  Specifically our response to it.  A loaded and emotionally charged topic to be sure.

I have two people in my life that I hold heart deep, to-my-core-important and I cherish them both with all of me. Two people I would stand and testify are true. Honest. Wholesome. Loving. Christ like really… if you could for a moment remove the un-Christ like element of homosexuality…  in other words, imperfect.  But then, aren’t I??

Let me tell you, I struggle.

So much.

I envy. Nearly every day I have one moment of unabashed envy for the relationships I see around me… Mrs. Pamela Heslinga and her handsome husband who is faithful and kind (not to mention the fact that she is tall and perfect without a speck of make-up on). Mrs. Cabral and her faithful loving husband who is clearly a great father… and countless others.  All I ever wanted was to be a wife and a mother and to honour God with the family I made. I don’t have that and ENVY those who do. Envy is a sin.

I covet.  The house someone else has, the car they drive that doesn’t have dents or french-fries in the cup holders, the time they have to pursue the gifts and talents and passions they have, the voice of another singer, the body of another … I covet, even tho it is clearly a sin.

I have gossiped, lied, stolen, hated (a sin God lists equal to murder)and the list goes on.

So who do I think I am that I can turn my head in the direction of someone else and point my nose in a downward direction?

Am I talking about inside the church? No. Judgement begins with the house of God. If my sister sitting beside me in church is living in unrepentant and flagrant sin, I have an obligation to love her enough to call her into question and love her into forgiveness and restoration. And she has the same responsibility regarding me.

I’m talking about that outward gaze we cast on the world and condemn them with our ‘holier than thou’ attitude.

“Let him who is without sin cast the first stone” (John 8:7) … I would have had to leave my stone and join that woman in the center of ridicule, had I been there for that incredible moment in history.

Here’s what I think. I can be free of my sin. I can put on the life of Christ as my mantle, my identity, my cloak, and shed the stigma and struggle of my sinful nature. I can be free, thanks to Yeshua and His sacrifice.  And if I can…

Look at Him… at Jesus, sinless son of God most high, sitting at a well

John 4:17-18   17  The woman answered and said, “I have no husband.” Jesus said to her, “You have correctly said, ‘I have no husband’; 18 for you have had five husbands, and the one whom you now have is not your husband; this you have said truly.”…

20″Our fathers worshiped in this mountain, and you people say that in Jerusalem is the place where men ought to worship.” 21Jesus said to her, “Woman, believe Me, an hour is coming when neither in this mountain nor in Jerusalem will you worship the Father.  22″You worship what you do not know; we worship what we know, for salvation is from the Jews. 23″But an hour is coming, and now is, when the true worshipers will worship the Father in spirit and truth; for such people the Father seeks to be His worshipers. 24″God is spirit, and those who worship Him must worship in spirit and truth.” 25The woman said to Him, “I know that Messiah is coming (He who is called Christ); when that One comes, He will declare all things to us.” 26Jesus said to her, “I who speak to you am He.”…

28So the woman left her water pot, and went into the city and said to the men, 29″Come, see a man who told me all the things that I have done; this is not the Christ, is it?”……

In spirit and in truth.

Let’s be truthful.  We don’t see here a great alter call, and this woman being made to repent and made an example to all… Jesus calls her on her “truth” and then speaks to her about a deeper truth, spirit deep. God is Holy, we are not , and no mountain or city or church pew is going to make us Holy. Only HE will make us Holy and we can’t get there from here. Not from judgement or good works or wishful thinking or membership. Worship HIM. Invite HIM in.

This woman goes back to the men of her village and she changes the landscape forever with those simple words…This is not the Christ is it?.

Isn’t this Christ?

He didn’t accept her sin… but He invited her to worship Him. I can’t stay in my sin and worship Him. Worship changes me. He shows up and it changes me. It’s that transforming empowering love I want to live in… Jesus says, ‘come and see where I dwell’  And I have found it’s a beautiful and grace filled place.

A short story to illuminate my point.  Many years ago my van was stolen, the van I drove my (then) five children around in. My ‘Christian’ church going ex refused to help me.  However, my gay friend, whom my ex routinely referred to in horrible derogatory terms as in “keep that ‘f’ away from my kids” opened his cheque book and shelled out 1200.00 for the repairs and didn’t bat an eye. Who acted more Christ like there??  Beloved, lets be mindful of who sits in the seat of judgement and who doesn’t. Lets be grace filled… and lets learn to love. Until the whole earth knows us by our love.

There is a fountain filled with blood, Drawn from Immanuel’s veins,

And sinners plunged beneath that flood Lose all their guilty stains.

The dying thief rejoiced to see

That fountain in His day;

And there have I,

though vile as he, Washed all my sins away.

Dear dying Lamb, Thy precious blood Shall never lose its pow’r,

Till all the ransomed church of God

Are safe, to sin no more.

E’er since by faith I saw the stream

Thy flowing wounds supply,

Redeeming love has been my theme, And shall be till I die.

 When this poor, lisping, stamm’ring tongue

Lies silent in the grave,

Then in a nobler, sweeter song, I’ll sing Thy pow’r to save.