Apples to ūüćé.

IMG_2663.JPGOh yuk. Yuk yuk yuk. Picture me here right now just shuddering and making the ” I just ate a bug” face.
I didn’t eat a bug.

It was worse in some ways.

I compared my child to another.

I swore I’d never do it. I would not be that person. I promised myself and my child I would rise above.
VEHEMENTLY.

I understand we are in Holland and taking the scenic route and all that. I have seven other children, and not one of them is alike. I delight in the fact that my baby boy has remained more ‘baby-like’ then my other children, they who seemed to fast track thru the cute snugly stage into little kids, leaving me longing for the days of yore.

Last night we celebrated Thaneys accomplishment of linking two words together, (one of them was even crystal clear!) and using them in the right context. Had a wee little happy party over it, as we do all of his awesome sauce accomplishments; so hard fought for and achingly won. Each milestone is a cause for cake and celebration . Thaniel is three years old and I really am ( really really really) thankful for the pace at which Thaniel is becoming a person. I get it. I do. ( am I convinced yet? Are you?)

But today another three year old, this one on my school playground, had a lengthy conversation with me about his morning so far and though it was in a lispy three year old little voice… it was coherent , it was thoughtful, it was so much more than two simple words linked together, only one of which was even intelligible. That lead me to the wretched place of also contemplating how that same child at my school had put on his own outdoor shoes and followed instructions to line up with his peers and follow them outside and was going to do all of that same instruction following when he comes in and sits down at his desk, takes out his own snack and eats all by himself. And I had to slip away to cry.

Cry.

Like an ugly ,thoughtless, judgey, ungrateful, discontent, unsupportive ,bad mom.

A pity party. Not for me of course, for Thaniel …

Except it was for me. It could only be pity for me, because quiet frankly Thaniel is NOT busy comparing himself to other kids. He’s busy playing with other kids, and loving them and loving the world and stringing two beautiful words together to communicate in his own perfect way with those around him. He is NOT hung up on what he won’t do, where he won’t go, who he won’t be. That was all me today, mourning stupid preconceived prepackaged notions of ” normal” that are shoved down our plastic loving, photoshop filter making selfies.

I thought I’d outgrown comparisons.

I really thought I’d moved on and finally gotten clear of that fruitless joy killer. I spent most of my adult life comparing myself to other women and coming up staggeringly short. In high school I was confident, out going and vibrant. My parents loved me, my best friend was crazy awesome and I was sure of my place in the scheme of things.
But then I got married and very quickly I learned that my husband preferred anything other than me. I tried dying my hair, cutting and growing my hair, changing my clothes, changing my personality, losing some weight, gaining some weight, giving him children, keeping those children out of his way. Everything I could think of in my power and control to be something he’d love and want… but he didn’t. Why? What did they have that I didn’t? What did they do? What made them better or more deserving of love and desire than me? It eluded me. Whatever it was I didn’t have it.

And then he left and married another woman and loves her very much, proving everyone who said it wasn’t me it was him, wrong.

I spent the next ten years comparing myself to every woman I saw who had a successful relationship. Wondering over and over why I was unworthy of the same. Coming to the conclusion each and every time that I was some how less than, lacking and unloveable.

I completely ignored the unconditional and overwhelming love that had from the foundations of the world been held out to me.
I’d made the love of a man… a MAN! … my plumb line of worth, and brushed off with casual dismissal the fact that the designer of the universe, the ancient of days, who was and is…(you get it?) loves me with an everlasting love. I dismissed the fact that the only one worth judging me ALREADY DECLARED ME WORTHY. Like the whole world, I swallowed the lie that something in this tent of clay was important and that the soul inside it was inconsequential.

God met me on my knees in my kitchen while I mopped the floor, and asked me why I didn’t consider His love enough. He poured over me that day and described the way He waits to get a glimpse of me, how He loves when I bother to talk to Him, wants to be my first thought in the morning and my last sigh at night. Desires my company, considers me beautiful and love-ly and has so many plans for us together. All of the things I’d longed for from a man, all this time… He loves me.
And not the imperfect and imposed love of a parent. You know… because they HAVE to love you, you’re their kid. No- HE CHOSE ME!!!! Keeps choosing me, even when I have pushed Him away and ran after other lessor things.

For the past few years I finally let go of the ache and question. I’m enough to God, I need nothing else, and I stopped comparing.

Until today.

God please forgive me. Remind me again how the soul inside of Thaniel is exactly the one you intended him to have. That he is fearfully and WONDERFULLY made. That I am blessed beyond measure to know him and to be a part of your creative process in bringing him into the world, and help me divinely to steward his time here for your glory. Remind me that what he becomes and where he goes and what he does, has already been seen and planned by you and you call those plans Good! Who am I to call them less than. Forgive me for comparing Thaniel to anyone else in your creation. You made no mistake. He is just right. Father please, never let Thaniel sense any hint of disappointment in me, or look around himself and wonder if he isn’t somehow lacking from everyone else. Protect him please Jesus, from the lie our world clings to of outward perfection, while ignoring the eternal, the incomparable in each of your image bearers.
And finally Lord, could you please, in your time, meet Thaniel just as you met me, and let him feel and know and be filled with the indescribable love that only you can provide. Thank you for putting up with us, thank you for loving us. I love you too.

Dear you,

Maybe you just found out the child you are carrying may have or has Down syndrome, or some other such “imperfection” and right now you are mourning your dreams and hopes for the child you pictured having, the future you envisioned for him or her. Maybe you are comparing yourself to other parents of special needs children and thinking you come up short and could never ” do what they do”

I know. I feel you. Take a knee if you must.

But know this.

This child you are carrying was thought about and intended long before the foundations of the world. There is a plan in place. There’s a love growing inside of you that is just waiting to pour over you and fill you with more than you ever dreamed possible, it’s being held out to you, and it is without compare. Don’t¬†brush it off or dismiss it or in fear deny it in a pointless search for temporary (and false) perfection. I promise you, you won’t be sorry.

And hey Thaney… cake tonight pal. You rock your awesome sauceness and I’m crazy in love with you, never forget it kid.

New morning New mercy.

As I was about to write this blog entry… seriously, poised with fingers above the keyboard, snappy title in place and a head brimming with peaceful benevolent -isms, in the spirit of Rosh Hashana and the sweetness of a new year and all of Gods sweet new mercies, ¬†I received a phone call from my child’s principal and the poop began hitting the peaceful fan.

Websters dictionary defines Mercy as :Forbearance to inflict harm under circumstances of provocation.

I am provoked at at this moment.

It is the compassionate treatment of the unfortunate and helpless.

My child is particularly unfortunate at this moment.

My child made a ridiculously bad choice and the consequences will reverberate for some time to come and I want to lift my face heavenward and scream.

I was prepared to write this post about Thaniel and how he has finally discovered that he is a toddler and he is flexing his autonomous muscles. His ” or what?” Muscles. His “not your way, ¬†MY way” muscles. ¬†The ones two year olds typically flex, but for Thaniel it took three blissful years for him to find them. I’m guessing the whole low muscle tone of Down syndrome can be thanked ( That was a lame connection, better writers please excuse) ¬†I was going to write about how I am learning to juggle mercy with justice for this special little boy, whom I’m tempted to believe might not grasp the correction, until I watch him calculate how quickly he needs to snatch my iPad from my purse in order to run with it, and judge the distance he needs be keep ahead of me in order to escape capture. He’s a smart little ūüźí monkey. Several mommies in the DS club have given me this precious nugget of advice, and that is to not be fooled by Thaniels cuteness or ” specialness ” or pity him for all that is stacked against him, and as such, go easy on instruction and correction. They promise me I will be grateful I was strong ūüí™ in the long term.

After a particularly difficult morning of negotiations regarding the wearing of shoes versus going out into the brisk morning barefoot, and voting on which one of us was going to WEAR his breakfast ( I’ll give you a hint…it wasn’t him) ¬†I came to work and began to make lattes for my co-workers in an effort to shake my mornin frustrations. I find that the quickest way out of myself and into a right spirit and frame of mind is to serve someone else.

Instead of focusing on all the why me’s and the urge to throw myself a pity party complete with cake and matching napkins, I climb out by doing a little mitzvah for someone else. The direction of this blog was going to flow along those lines with a rousing challenge to all in bloggerville to do the same. ¬†I had this quaint little version of new morning mercy all bundled up and ready to regurgitate on you.

Ring ring…” hello, annoyingly trite? God on line one for you”

Did I mention the dog ūüź∂ ¬†was sick through the night all down the stairs? ¬†That I began the wee hours of this morning scrubbing said stairs… you don’t even know, you weren’t even there, but when I say sick, think south. ¬† ¬†That pales in comparison now with things being as they are. ¬†That was the good¬†part of today.

I had surgery on Friday. That was four days ago. Couldn’t my kid wait a week to throw this curve ball? I’m wearing a mask ( not a metaphorical mask, an actual factual hospital mask) during my classes ( sooooo embarrassing ) because I am absolutely bereft of white cells and can’t afford to get sick right now. Couldn’t my kid see I’m on my knees here and just praying to make it through this season? ¬†No. He seemingly lacks mercy. And now his choices are my problem and it matters how I respond. Because I’m a single mom and I have to prove the hype wrong.

But what does God require of me here?

Justice versus mercy.

The bible speaks a lot about mercy. Proverbs says justice and mercy should kiss. (I even tattooed the words on my wrists 12 years ago when I needed the reminder.) The bible says that we should love mercy, act justly, walk humbly. It declares the mercies of the Lord new every morning. Them are some pretty words coming from a book titled Lamentations. ¬†Ah¬†Lamentations, what a perfect name for a ūüďö book, totally suits my mood today. ¬†‘The steadfast ‚̧ԳŹ love of the Lord is everlasting, His mercy is new every morning’. ¬† So if I take Websters fantastic description of mercy and apply it IRL ( in real life… I’m hip) ¬†it’s saying that each and every day God restrains Himself from inflicting harm on us even though we have (obviously) provoked Him. That He chooses instead to treat us with compassion because we are helpless and unfortunate. ¬†Why?

Why doesn’t He just go ahead and smite us already? ¬† I’m sure God saw the presidential debate, what’s He waiting for?

At this point I am dreading the drive home and the inevitable way my blood will slowly heat as I consider what my kid has done , until at last I pull into the driveway where it will have reached its boiling point. I am dreading his possible stupid excuses and the way I will have to bite back my angry ūüė° retorts and act like an adult. ¬†Mercy is the farthest thing from my mind. Besides, mercy now would be soft, weak , and that is likely what landed me here in the first place.

Why don’t I picture this child ūüĎ∂ūüŹľ the way I see Thaniel? ¬†In Thaniels case, I see him as tiny and sweet and just a little helpless. ¬†I have to bring¬†myself to correct him because I know its what’s best for him. ¬†In¬†the case of my other child, he isn’t little , his cuteness has somewhat worn off under teenage-ness and he is absolutely NOT helpless. ¬†I will have to hold myself back from a heavy duty smite fest, but I am going to yell, loud and a lot!

Half of my anger is tied up in how this kid has embarrassed ūüė© me. This stupid choice of his has ‘bad mother’ written all over it and I’m convinced that’s what will be said about me. ” single mom…. unable to control her kids… typical.” ¬†Go ahead, call that prideful, ¬†but it’s the truth. ¬†The other half of my anger stems from hurt and betrayal . I know he knows better, and I can’t believe he’d still chose to hurt ūüė≠ me anyway.

Do we leave God feeling the same way?

Is He embarrassed ¬†that we carry His name as we run around all willy nilly messing up His laws and His ūüĆé planet and His plan for us, flaunting our bid for independence and daring God to punish us? ¬†People are watching and judging Him by the behaviour of His children, of His church and the opinion is often less than favourable. ¬†Is He hurt? ¬†Grieved because He loves us, His precious creation that He uniquely formed ,invested His own breath and likeness in , provided for and taught, only to have us scorn His way and stubbornly chose our own.¬†¬†Is He angry?¬†

I think I found my answer as I drove ūüŹ° home and let the realities of mercy wash over me. ¬†The truth is God sees us as I see Thaniel, small ,helpless and lovingly made in his image, ¬†He sees us as I see my other child, growing, wayward, stubborn. And¬†¬†He sees us the way He sees me, lacking the answers and means with which to cope. ¬† He’s moved to compassionate love in every way He views us. We are His children. So here is a little tid bit of truth regarding mercy that God showed me today.

Mercy holds back when it could unleash. It’s not weakness, it’s controlled power.¬†

As for our sin… that He views the same way that light views the dark. It doesn’t. ¬†They can’t inhabit the same space. They have no relationship with one another. It’s not poetic, there is no shadow, no shading. It’s not that God won’t tolerate our sin. He CANNOT. ¬†He is Holy .

The choices are all ours.

We have everything we need in Him. We are loved, provided for, accepted, healed and restored. We can choose to live in His abundance and freedom and infinite mercy morning after new morning. But we can’t bring our sin with us. We can’t have it our way and stil have a right relationship with Him. ¬†Simple pimple.

It would grieve my heart to no end if I ever had to shut my ūüö™door on one of my children, or to tell them they have no home with me. In fact ¬†I cannot fathom it. ¬†I understand now that I never have to. ¬†As I drove and God spoke to my heart, my anger melted away into realization. I didn’t have to yell, didn’t have to be bent and angry. It’s not my choice. It’s my child’s. I hold the door always open, my home forever filled with love, acceptance,provision and security. But son, you can’t bring your bad choices with you. As long as you understand, the choice is yours.

And you can’t play with my iPad either. ¬†ūüėä

 

Ps. I’ve only just discovered these ūüėú Silly ūüėĚ Emoticons and it’s like having a surprise party ūüéČ with just me and my tablets word suggestion bar. The highlight of my day was not spilling ‚ėēÔłŹ ¬†on myself, so just deal with it ok?

img_2477 Continue reading

a little to the left and up a bit.

So caring for Thaniel I have learned is so so much like a tightrope walker, leaning into the wind and bending knees just a little and feeling the rope in-between my toes and NEVER looking down. ¬†He gags on super, I watch for fever. He chokes on a drink, I listen for wheezing, He doesn’t poop, I adjust his meals… I balance and calculate and survey for results. ¬†He has had an off again on again summer. And I hate to say it… but I’m hoping for trouble to happen in my “down time” ¬†IF it’s going to happen..please Lord let it be while I am supposed to be on a beach somewhere suntanning.(Good Lord knows I am just cleaning out closets and preparing for next year.. no beach involved) ¬†So far I have dodged and avoided every crisis. Perhaps its time and experience, perhaps it’s prayer covering… but so far we have leveled out like that bubble tool the contractors used to do our kitchen floor. (someone please remind me that remodels NEVER take the “week” ¬†you expected and that living without a kitchen IS a major upheaval no matter what time of year!!)

Meanwhile Thaniels mommy has learned what it is to pray without ceasing. ¬†Here it all is, in a nutshell, for you.. my complete stranger reader . ¬†My mother has been in pain for eight months. Not fleeting moments of aggravation…eight months of chronic pain. Doctors and therapists and drugs have not helped and after every test they can think of the pain remains and her weight slips down daily… 30lbs and counting. she is under 100 lbs now and wasting away as we watch helpless. Thats HARD to deal with let me tell you. Meanwhile my daddy grapples with a cancer diagnosis and the surgery and treatment that entails. He spends all of his time researching cures and helps for mom so that his own treatment seems far off and future… but he is living with cancer inside him and it shows in the set of his shoulders. And then there is me, who has been blessed through the kindness of our friend Karen, to have been granted a team of experts who are working together toward a cure to the constant health struggle I have faced for the last 15 years.

Enter Dr.X. ¬†I’m not going to name him, because he is so awesome you will all try to get him to be your doctor. But this is a conversation I had with him

DR.X- Your husband left after the baby? did that devastate you?

ME- no, I knew he had to go long before he left.

DR.X- But are you ok? I mean aren’t you bitter? angry?

ME- no, are you?

DR.X-  um.., concerning your results we may have to redo the bone marrow biopsy.

ME- no. absolutely no, really?

DR.X- why? was it really THAT bad?

ME- you’ve never had one?

DR.X- no, I’ve preformed lots though.

ME- sign up for one and I’ll agree.

DR.X- walk me through it and I will.

ME-really?

DR.X- I think I could…yes.

 

And then we started a conversation, a real one. About how I could smile through my husband leaving and the loss of the life I thought I’d have, how my special needs child didn’t make me feel burdened but made me feel “granted”. How I no longer looked to others to satisfy the needs of my heart but looked instead to the creator of my heart to fill my needs. And then we touched on his needs… so briefly it was like the brush of a butterfly wing, but I knew he was calling out for something. And so I said what laid on my heart.

You are looking for the quantifiable. The measurable. The sure.

But God’s love, His plan, The whole point.Is just a little to the left and up a bit, your tests would miss it. we are put here to place our hands on one another, to learn, to love, to loose, to see the vastness and amazingness of it all…

And then we see the depth of our emptiness and we call out for the author and finisher, and HE fills us.  See?

There was some quiet.

There was a throat clearing.

And then there was a smile.

 

We took my blood,we talked about drugs , we even planned the next visit. When I left he took my hand and said these words.

This is going to mean healing… for at least one of us.

That is really ok with me.

Have you met the Author of your story? Do you know the plans He has for you? They are for your good..To give you a future with hope.  All you have to do is ask. DSCF4857

Fathers day for the fatherless.. (and are we really father-less?)

Father’s day is coming. ¬†For me that means a lot of happy things. My dad is awesome. I have a great father. The world’s greatest father in the history of fathers. ¬†But for ALL of my children¬†Father’s day¬† means pain and confusion. It means memories they don’t want, obligation they feel burdened by and lots and lots of ache.

I never intended that. And in the instance of my first husband, I know he didn’t either. ¬†We married young, and we were crazy in love. But he had an issue. A hidden demon that didn’t stay hidden. Like alcoholism it¬†overcame us both¬†and ripped our family to shreds. To my shame I did not “stand by my man”, but rather after 13 years I raised a pirate flag and began to do battle with him instead of for him.And while¬†¬†the vast majority could hear me recount the tale of the tape and exonerate me ¬†of any wrong-doing… I know the truth. I gave up, gave in and gave over to a defeated mindset and didn’t honour my vows of for better or for worse. In the face of worse… I ran. ¬†My children (The first five) were witness to knock down drag out fights. long silent battles, violence, and score keeping. Lots of it. I tried for years to live by my ex- mother-in -law’s example, by not bad mouthing their dad, but I know I didn’t accomplish that entirely.

My second husband didn’t ever try to mask his duplicity, beginning to date other women ¬†three weeks BEFORE our wedding. If I had known I would have run for the hills. But I didn’t and here we are.

So how do you celebrate father’s day when the example of father’s is so shady at best? I mean, I had to take dad number two to court to get him to even SEE his kids!! How do you celebrate that?

Thaniel has gone a whole year without laying eyes on his dad. He has no idea what “dad” is. Wouldn’t recognize “dad” in a line up… We haven’t heard from him in more than a year , don’t know where he even ¬†is… happy Father’s day Thaniel.

And yet here’s the thing I believe whole heartedly. Psalm 68:5 says God is a ¬†“Father to the fatherless, defender of widows–this is God, whose dwelling is holy.”

God is the Father to my un-Fathered children. Intended or not. God knew, and He saw and He made a way through. And He never intended to leave my kids wanting in the middle of a vacuum.

I kept buying into the fantasy of “I’ll be there for you” and God kept showing me only He can promise that.

Some of my kids have had great role models. My dad being the first and for-most,he is a constant in the storm. A plum line, an anchor. ¬†My brother is awesome sauce and he loves his nephews and nieces so so much , ¬†Rob Graham was a HUGE figure to them when the first five were young, and they still speak of his presence fondly. ¬†Bradley Bandit Brooks filled the roll of “dad ” to my kids for more years than their real dad ever did and I’m so grateful for Men that stand up, stand above and stand out. ¬†But what do you do on “father’s day” for a little boy who doesn’t know what a “father” is??

You have “Father’s day” anyway! ¬†and you celebrate his real Dad. The father to the fatherless. The one who adopts us all. Who holds us and nurtures us and teaches us and leads us in the way everlasting. The one who provides, protects, preserves, and connects us to what we really are. Spirit in flesh. One family . Which means cake for Jesus and balloons for Abba Father and reminders of scripture that Hallmark Jesus as our Heavenly Father. (and more cake)

I am forever grateful that God the Father holds both me, and my children at all times.13419001_10156927567305567_6170734822344451520_n(1)

 

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.

********************************

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!