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.

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

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.)