More alike…no really.

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

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

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

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

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

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

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

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

Because truly. We are all more alike than different.

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

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

Apples to 🍎.

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.

I’M PROLLY GUNNA CRY ALL DAY.

Today is NOT world down syndrome day, but since Brampton Christian School (greatest school on the planet FYI) will be away on March break for the celebration, they flipped the date 3-21… and we are celebrating today 3-12.  B.C.S is decked out today in multi-coloured crazy socks to show their support for MY SON and people just like him, people like me and you and you and you… all different but so much the same.  And the whole thing has made me crazy emotional. I’m crying as I type.

Can someone please explain to me how this little boy with his crooked smile and his squinty almond eyes has turned me…fiercejoy, into a blubbering mess??  At the first hint of support or love that is shown to him by anyone, I melt.  I’ve spent a good portion of this last year crying rivers of happy tears, emotional moved to soggy-ness tears.

It’s as if I’m expecting the worst.

I’m expecting stares and whispers and pointed fingers and when I get open admiration and respect instead, my eyeballs get so shocked they spill.  And maybe in part it’s because I want to protect him so badly. I watch him fight so hard and struggle for every inch of his growing and becoming that I feel this fierce and overpowering drive to put a hedge around him and make his way easier. He does his fighting with a smile and baby jabber and I do mine with watchful eyes and clenched fists.

I am so crazy proud of my school today. Not just for the socks… that’s fun, and everyone likes fun. I’m proud of the way they asked questions during my classes with them these last three weeks, and became irate when I quoted the current abortion rate for kids with T21.  Of how they ask about Thane nearly everyday,  and add him to their classroom prayer lists, how they call him “so cute” and the littlest ones ask if he can come to school with me yet?. I’m proud of the way my colleagues hold us up in prayer all the time, and how they love me by loving Thane.  I’m so proud I’m prolly gunna cry all day.  The rainbow of colours that line the hallways today screams that bullies don’t have room here, that discrimination doesn’t have a place, that inclusion is a forgone conclusion and that LOVE WINS.

Every time.

When I became a single mom a year ago I woke the following day with a crisp and clear resolution. That Thaniel would never feel the gap. That he would lack for no thing that I could offer him, whether it be material or emotional or spiritual.  I didn’t have a plan as to how I’d pull that off mind you, just that resolution.  Days like today I see it. I feel the fullness of the life he is going to lead, it reminds me of the way air enters a balloon and pushes out the sides. Each deep breath in when we are at our end and struggling; finds it’s release in the awesome sauce way we are held by our friends and family and Thaniel’s world becomes bigger.

I realize that these are the easy days, the days when he is little and cute and you really can’t tell if he has deficits or not and everyone just wants to “hug the baby” . I realize that the real mountains are ahead.  When he is big and maybe loud and silly and I’m the only one that finds him adorable.  But for today I’m gathering his army of supporters around us like a squirrel with nuts to carry us thru.  And when I go home tonight I’m going to pull him into my arms and bawl like a big girl and tell him all about the school that put on crazy socks and wore ribbons and celebrated HIM today.  Thank you Brampton Christian, it means the world to us.download_20150312_123136download_20150312_123130

Here`s what I know so far

“I bet you wish you’d stopped at seven huh?”

That was an actual sentence uttered in the staff room to me. A fellow colleague had heard me ask for prayer in the morning staff devotions, for my unborn child who wasn’t expected to live, and that was his offering to me. “Bet you wish…”

I stood stunned. which is good. If I had been able to speak I would have said something I’d later feel great about, but still have to apologize for. The problem is, what he said wasn’t far off of what I’d already heard coming from all over. The first ultrasound technicians reassuring hand on my thigh and an encouraging lilt to her voice “These babies rarely survive anyway” , My G.P’s pointed ” You have seven healthy children and lots of time to exercise your options”  and the first visit with the obstetrician…  “I’m so sorry.”

Apparently everyone had already written this kid off.  I was clearly carrying something to be sorry about.

(For anyone already angry on my sons behalf. I changed family doctors, changed OB’s and even changed delivering hospitals.  The first geneticist I spoke with at the new hospital said plainly “we honour all life here, how can we help make all this easier?”  )

I was pretty angry about some of those words, but I’ve had a year and a half with my son now and all of those ugly, ignorant, well-meant but misplaced words have fallen away and I am left with the brilliant and awesome and encouraging.  It’s those words and those people I’d rather write about.

For starters there were my midwives, who were gentle with their pronouncements and kept my “odds” (what a ridiculous system of unnecessary worry those are) to themselves for nearly eight months. (my odds were 4/5 BTW) and called this pregnancy  ‘extraordinary’ but said it with hope and not apology.

Next there was Vicki. I can’t thank Vicki enough.   When I told her what doctors suspected and how they were interested in doing more tests she said ever so eloquently “screw the tests, enjoy your pregnancy” and “your having a baby. It eats it sleeps it poops, don’t let anyone tell you different”   Vicki has a grown daughter with DS and she rocks several flavours of awesome sauce.

My parents were amazing, they held me close when I first announced the test results, they prayed with incredible faithfulness and fervor for Thaniel’s life and health and they covered every gap caused by the extra involved with his pregnancy.

And then there were my children. My brilliant children who just loved and celebrated along with me. Who never complained about all of the visits I had to take to the hospital an hour and a half away, or how we had to cut back on a lot of stuff since I was on a partial leave from work, or how I missed my then youngest sons very first day of school, and then the next four weeks of school.. My children who fended for themselves (with my parents help) and who didn’t spend our time on the phone complaining about what I was missing, but instead they asked about their cute little brother.

I quickly became a single mother as Thaniel’s father couldn’t cope with his diagnosis and left… but in reality I have never ever felt like a single parent because of my incredible family. We are a village.

At work I am loved and supported. I was given extraordinary grace all throughout Thaniel’s pregnancy and ever after. My co-workers have baked and cooked and gifted until I’m humbled by them. I’ve had to miss weeks at a time and they pitch in and give up and rise every time. And they have never let on that it’s a hardship, even though I know it is.

What am I trying to say?

Maybe you just got the news. Maybe you went to the internet to read about this diagnosis and you stumbled upon this blog. (Please for the love of all that’s pink, stay AWAY from Wikipedia and google nonsense when it comes to your baby) If that’s you, if you are reeling and doctors are hinting, and family is `sorry-ing` and former friends are `tisk-tisking` let me give you this gift. It`s all I’ve got in the way of Down syndrome wisdom, because I’ve only been stumbling through this myself for the last year and a half.

You will get new friends, who are several shades of brilliant and they will quickly become very dear to you. You will be embraced by a community of parents unlike any other who will seem like family from the word go and will hold you up when you have little to go on.  Your family, the good ones, will come together as you have never experienced before and this little miracle you are carrying will be without question the greatest thing you ever did, and you will call yourself lucky in no time.  (If you cried when you heard, don’t feel bad… a lot of us did and as much as I regret it now .. as much as I wish I’d thrown a blue and yellow party instead, it`s alright to mourn the stuff you `thought` was important.) And all of those other people will fade away. They can’t take the awesome. They will disappear, shrink, cease to be important. I promise.

And on behalf of Thaniel and myself.. `congratulations!`

(it really is just a baby… eats, sleeps, poops. she was right)

That first beautiful night.

I’m just gunna come right out and say it. MY KID IS THE CUTEST. I mean, I know your kid is cute, and I have seven other babies here on earth (and little Joseph John James in heaven) and they are cute.. but even they will tell you. Thaney is THE cutest. He just is. Full stop.

That first beautiful night, holding him, I was so rolling around in that. I held him cuddled into me. He was a snuggle-down-in kind of baby right from the start, and I basked in the all-encompassing cute of my kid.

I also reveled in the health of him.

I mean, I was warned of all the possibilities , but he didn’t seem to have any of them. He popped out and my mother exclaimed over and over thru her tears “he’s perfect! he’s perfect!” and he was! Breathing difficulty. Nope. Heart trouble. Nope. Kidney issues, (he pee’d on the delivering doctor). Nope. He scored near perfect apgars, and I saucily smiled to myself when the pediatrician noted to a nurse that Thaniel seemed to have “really good tone”. He was six weeks premature and still a whopping 6lbs 8ozs! I had delivered a giant healthy perfect baby boy!.

It appeared as if my boy had dodged every Down syndrome bullet there was. I was gloating in a new mom of the worlds cutest baby kind of way.

When all of the medical stuff died down and Thaniel and I were safe in our room I took a good look at this sleeping angel. All of the worry and doubt slipped away. I could so do this. Down syndrome schmindrome. I nursed Thaney and he slept and I slept and I was at peace for the first time in months. He didn’t wake for hours. I even gloried in that. Already he was showing to be an easy baby. He didn’t wake with the morning light, so I woke him and tried to nurse him. He wasn’t really interested and fell back asleep. Well, he had just been born! that’s hard work. I let him sleep. I facebooked his arrival, talked to friends and family on the phone, and Thaney slept. I woke him again a few hours later and tried to feed him. He was grumpy about it, fussed and fell back to sleep. His diaper was dry. He slept. He was sleepy, he slept, he didn’t cry, he slept, he didn’t eat, he slept. He slept. He slept. He slept.

I had a nurse call the pediatrician, and since we were to be released the next day, she mentioned he’d have to sign off on our release anyway. My perfect baby boy slept thru his pictures, thru my family coming to visit. Thru the nurse getting his weight. The pediatrician came and checked Thane over and relieved my fears. “He’s just worn out, he’ll wake soon and then you’ll never get any peace”…

My nurse gave the doctor a hard time. She didn’t agree. He didn’t care, he was used to this perfect storm of a Caribbean nurse being vocal about her opinions. He left. Thaniel went back to sleep. And my beautiful mouthy nurse said to me “Don’t you let these ones send you home until you KNOW dat baby is ok” I tried to go back to that first beautiful night, with my perfectly beautiful son, who perfectly put me at ease, but I couldn’t. A nagging gnawing growing roots fear was starting to climb from my spine up into my sub-conscience. Thaniel slept. I prayed.

Somewhere in the hours right before night, my nurse came back in, to check me, check Thane and say goodnight and goodbye. She was ending her shift and wouldn’t see us again. She took Thaniel out of his swaddled blankets and tickled him under the chin and patted his back and said her goodbyes and then laid him down, and when she did, he spit up. green. If I had been alone in the room I would have changed his clothes, threw his blankets in the big bin of linens in the hall and that would have been it. I wouldn’t have known. Green bile, no appetite, lethargy, a big round tummy… I wouldn’t have known what those things laced together meant. By my beautiful nurse did. She called for the charge nurse, who called for a doctor, who called for a transport down to their NICU, who called for tests and someone from across the street at the children’s hospital to come take a look at him, and that doctor then called me into the NICU (where my son now had a tube down his nose, into his tummy sucking all that green stuff out) and explained to me that my son had a blockage somewhere in his bowels. He used the word ‘obstruction’ followed by a lot of information about Down syndrome and this complication… I heard obstruction and stared hard at him trying to hear the rest of the words.

He mentioned “Hirschsprung’s disease” my brain heard Hirschsprung’s DISEASE” He mentioned huge words. Surgery, necrotising enterocolitis, colonoscopy, colostomy, ileostomy, stoma…it was like an ocean of terms flowing over my labour weary mind and washing away the peace and calm of that first beautiful, perfect, smug night. My cutest boy had NOT escaped unscathed. I was NOT better than all of the other parents who had walked this road, I was afloat just like they were, I was in NEED just like they were, for more than trite phrases and platitudes. My son was in need. He was at risk.

When the transport came for him and they explained that I could not come with him, but would have to walk across to the hospital for sick kids and register him there and then I would be brought to the NICU and they would explain things further, I had a big girl moment. I Pressed my lips together and nodded. When they rolled him away in that huge enclosed crib; I had a little girl moment and broke down in the hallway. Sobbing out the fear, the disillusionment, the pride. This was our second day together, my beautiful perfect son and I, and already he was teaching me more about myself than I think I’d learned in the 41 years previous. When night finally fell on our second day, I was not holding him snug beside me, I was not sleeping soundly beside his precious and perfect form. I was standing at a window staring at his shape now obscured by tubes, monitors,lights and so many nurses. And that first beautiful night felt like it had happened a million lifetimes ago. I thought this was as bad as it could get. I can almost feel the sad grins of other knowing parents as I type that. The next weeks would educate me better than any pamphlet could. How glad I would be that my Saviour walks on water, because I was in the deep end now.

thaney3

amazing (invisible) grace

Some time in September (it’s February now) Thaniel got sick. Just a cold, a virus, his doctor said, and Thaney would be fine.  I brought him back over and over again in those first few months to bang on his doctor’s office door again and again to say “he still isn’t better… shouldn’t he be getting better?”  but I was assured this was the way, that this winter was a bad one and Thaniel would be ‘just fine‘. Since then Thaniel has been hospitalized thrice, with the flu, pneumonia, the dreaded R.S.V,  been on oxygen, had surgeries, and once we nearly lost him.  Thaniel needs procedures done every three hours to keep his bowels cleaned out , is on enough meds to embarrass a pharmacist and every sniffle or sneeze causes me to hold my breath and look at him cross-eyed.

I’m finding grace a difficult emotion to grab hold of.

I have this deep in my belly feeling that when I question his doctor now on just why Thaniel has suffered as he has in the past months with ‘just a virus’  that his doctor is circling his wagons. That I am being fed a party line, that someone is passing the buck and Thaniel’s weak immune system (a product I was told, of his Down syndrome) is whats left holding the bag. “Look on the bright side” the doctor chirps, “next year he’ll be SO much stronger because of all of this”

Did I mention we nearly lost him THIS year?

I do understand that Thaney has a weak immune system. I understand immune systems pretty well actually. I myself am Neutropenic (my body kills the white cells it makes before they can mature) and so I can often be fodder for whatever cold or cough is flying around, and what is “just a virus” for some becomes a full-blown knock down drag out brawl for me. Pneumonia is common for me, so is strep. I’ve lost organs to inflammation and infection. I know from immune systems. And while my son has been battling to stay upright, I’ve had to fight alongside him. So that I don’t get sick. Because he needs me. To give him those meds and procedures, to keep finding foods he’ll eat so he gains back the weight he’s lost, to go to work so I can earn him a living, to have a clear head while doctors give instructions.  Fighting means taking shots that force my bone marrow to produce white cells quickly and in greater quantities. It hurts. My bones ache.

Did I mention I’m finding grace hard?

But here’s the thing. Right when I want to complain, and rant and let the whole world know how bad I really have it (kinda like I just did) Someone in my ‘ special needs moms’ group will post that her baby has gained their angel wings, another will give us the funeral information for her 22-year-old son, another will send an email that they never even made it home from the hospital. And all of a sudden I am acutely. I’ll say again, acutely aware of the invisible grace surrounding myself and my son. I can almost feel the tangible arms of grace holding that kind of grief at bay, even now, even as I type this. Grace is flowing, not from me, but for me, and for Thaniel. Amazing.

I once heard a quote.. ” sometimes the desire to pray, is in and of itself a prayer, and God can ask no more of us”.. or something like that. And I relate, if not agree. I pray lots, and lots, and not just for myself and my needs, but others too.. but I think the spirit of this quote resounds with me for this reason. Sometimes my prayers are just post it notes, and the real cry, the REAL need is somewhere buried in the paper work and I can’t articulate to utter it. I’m praying, but I’m just putting out decoys in the water in hopes that the real ducks will show up. And I think it’s absolutely AMAZING when they do! When God shows up with the grace I can’t muster. Well if He can, I can try.

Here.

Now.sick kids

I forgive the doctor who ignored me, I forgive the E.R. nurse who belittled me, I forgive and release the doctor who cleared Thaney to be discharged, only to have him back in hospital again hours later with pneumonia, I forgive the student nurses who put Thane in more pain and distress because they didn’t know what they were doing, I forgive the doctor who treated me like a paranoid mom  and said that constant illness was “par for the Down syndrome course”  I forgive, I release. In the immortal words of Elsa (or Anna, I never remember which) I ‘Let it go”

Because we NEARLY lost Thaney this year. But we didn’t.

And he will be stronger next year, and so will his mama. Next year I’ll know how to shake the white coat and get it to hear me. ( Hopefully I’ll know how to do it with grace.)

Waiting for the whole thing.

I do NOT live in the moment. I`m just not one of those zen-types who exist in their own here and nows. I live in a lot of places. In my head, in the past, in a book, in the future. But the present is anathema to me. I`m always waiting it seems. Like all those who suffer from the same, I`m always looking for the day when. Or remembering the days when. And when is never now.

Such was the case when I was expecting Thaniel. Expecting is not a good term for it. For starters, HE was a complete surprise. Then there were all of the complications, I wasn’t expecting any of those. It began with a simple ultrasound, which revealed a large septated cystic hygroma, thick nucal measurement and became gentle hands on my shoulder and a midwifes offer to meet me at home to discuss my extraordinary pregnancy. My plans for a home birth were tossed and I was transfered to care at a high risk program. He wasn’t expected to live. If he did, he wasn’t likely to be mobile, or not suffer from serious issues, and I didn’t live in that now. I lived in future ultrasounds where I would hold my breath until the tech said she could see a heart beat. And then I lived for the next week, and the next…

thane

I prayed future prayers, and I relived past pregnancies. Past loss. And I prayed some more. I fell in love with this little bean of a fighter who surprised a few seasoned white coats when the hygroma ceased to be, and the spots on his heart got smaller, and he didn’t just live. He thrived. Somewhere up in the 85th percentile in size, Thaney grew and grew stronger everyday. And I waited.

So I lived, check up to check up. I opted out of the amnio I was offered in those early weeks, mostly out of fear. Fear of miscarriage (lets face it, after eight babies I have a trigger happy uterus) fear of truth, of knowing. And also because really it wasn’t something that would help. It wouldn’t change my outcome one way or the other, and so I chose instead to wait until it was safer to do those tests. I waited until the 32nd week. And then waited two days, and then waited for the receptionist to look up my results, waited for her to call a doctor over to the phone to read them to me. And then waited for the room to stop spinning.

Down syndrome. for sure. for certain. In that moment. But I wasn’t living in that moment, I was already off weeks down the road with all of the what ifs and what nows. I barely slept for the researching and reading and planning.

In a few days I’d go into labour . Labour is funny. It has a way of forcing you to pay attention to the moment. Minute by minute. Contraction by contraction. Your mind really can’t bare to think much beyond just this one contraction, and if you do, it only takes the next contraction to snap you back to that moment.

He took his sweet time. Over 30 hours of hard active labour. Two of those entertained by the sweetest nurse trying to do a little guided imagery with me. I had to focus so hard on not laughing in between contractions it actually helped me. Then there he was. Perfectly flawed, perfectly altered, down right perfect. He scored 8 and 9 on his apgars… for those who may not know, trust me, that’s good. In future posts I’ll tell you all about those early days. About the first beautiful night, and the next worried day, and the next terrified day and the weeks of pain and doubt and prayer that followed. But for now I’ll end with this.

I have never been someone who lives in the moment. But Thaney holds me there all the time. He seems to hover in time, and it causes me to hang out there with him. Right now. This moment. And I am absolutely loving most every moment.