Thursday, February 28, 2013

When you pick a little baby up.

When you grab them around their middle and gently lift up, and they arch their back and bend their legs up, and bring their arms up to their head and even sometimes grab their faces. They squeak and yawn and stretch... But still stay soundly asleep.

Those are such sweet moments.

You were born into a strange world.

Like a candle you were meant to share the fire.
I don't know where we come from, I don't know where we go,
But my arms were made to hold you, so I will never let you go.
'Cause you born to change this life,
You were born to chase the light.

Mesmerizing eyes. Those brushfield spots...

muah. <3

Someone finally discovered his feet!

His 'thinking' face.

I just can't get over those eyes.


He has one dimple. Only one. It just kills me with cuteness.

Even his cry face kills me with cuteness.

Look at that head control..

Just some quick baby spam! Happy almost weekend!

Sunday, February 24, 2013

The Things People Say.

Almost daily, I think, I am baffled by the responses I often get by strangers when it’s mentioned that Jaxson has Down Syndrome. It might be bad of me, but at times, I almost have to choke back laughter at some of the responses.

And anger, too.

Just the other day, two nurses ogled over Jaxson at my grandmother’s house while they set up some equipment to keep her congestive heart failure at bay. When I mentioned that we had to start packing up or we’d be late for therapy, they were shocked, “Therapy?! For what?” I then explained that he had physical, occupational, and feeding therapy sessions, to which one nurse responded, “All because he was a premie?”

I felt something weird inside at that moment. They didn’t notice? Was it wrong of me to feel a touch…I’m struggling with a word here. Something along the lines of relief or happiness or maybe a little shock. Anyway, it was all wrong to feel.. but it still happened.

I couldn’t contain my smirk at this moment. I knew what was probably going to come, “No, because he has Down Syndrome.”

Nothing of significance followed immediately. Except my senile grandmother, (whom I’ve kept it a secret from only because I liked that she was the only one in the family that didn’t look at him and see the characteristics. She loves his features and tells him every time she sees him. It makes me swell with the most happiness, and usually, tears) whipped her head around and shouted, “Now who said he has that? Tell that doctor to pull his head out of his ass, he ain’t got that.” Oh, how I love that woman.

A few minutes later, the younger nurse, still in the nursing program actually, approached me and told me again how adorable Jaxson is. We chit chatted about all of the cute things he does, I bragged, ect. But then she said this (essentially, but I’ll quote it nonetheless):

“When my daughter was eight years old, I loved it. It was my favorite age and still is. One night I told my husband this and he said that it was too bad she didn’t have Down Syndrome, because then she could be eight forever.”

This is a medical professional in training. Jesus.

Anyway, then she went on to speak about the innocence that people with Down Syndrome have. How they’re immune to the bitterness of the world, on and on… I, along with any other parent walking this path, have heard these statements a million times, I’m sure.

(Side note, after reading about the young man with Down Syndrome who was just asphyxiated by police officers, and not to mention a few other heart wrenching news stories that all deserve much more press than they’ve gotten, I can assure anyone, no one is immune to the bitterness in this world)

But I guess, my reason for writing this blog is my own confusion. How do I handle these situations? I’m still stumbling around this new path. Do I take pity on people like this? Nicely explain how wrong and ignorant they are? Do I jump down their throats and clearly take offense? Don’t they deserve that? To know how hurtful their words are? Should I even care… does it matter?

I think it does. Like all great things that change within this world and bring about a new and positive perspective, and better treatment, it started with someone somewhere trying to change a viewpoint.

But how do you change it? Or educate, I suppose, is a better word since change takes education.
My first reaction in the above situation was offense, but I didn’t make it known. Just felt it. And for some reason, I laughed with her after she said it. Why did I do that? I’ll chalk it up to shock. I re-play it in my head and try to think of ways I should have handled it. Sometimes it involves me grabbing her by the throat and shaking… but I figure that won’t educate her much. Do I blatantly say, “that’s a very rude thing to say?”  

I think it’s best to just let people know, “hey, my son won’t be eight years old forever. He’ll be a valuable member of this society, capable of all emotions.”

I should have just said that. *Slaps forehead in disbelief. I think my issue is that I’m constantly overcome by shock, and lose my footing. I need to get past that.

Situations like the one above happen much too often.  And I’m still tender and vulnerable; I want to be rude back to people, yet sometimes I want to burst into tears. How dare you, my son is perfect. Neither of which will solve anything.

I just need to find my footing on this path. I need to find solid ground and a strong tree to hold onto. Jaxson needs more than a hesitant “vulnerable” mother, he needs an advocate.

Grandma, I think I’m the one that needs to pull my head out of my ass. (And a vast majority of society as well)

Any suggestions for handling these situations? Any responses you made that had an impact? Any times you lost control and jumped down someone’s throat? Am I wrong? Tell me your stories. Educate me.

And just for good measure:

the way's he sleeps.

Tuesday, February 19, 2013

It's mornings like this I cherish.

Pre-sunrise cuddles. When my little squirmy baby succumbs easily to sleep and sinks peacefully into my chest. No struggle, no reaching for everything in sight. Just heavy eye lids and rhythmic deep breaths.... and maybe the occasional snore. These moments are few and far in between lately.

I remember holding him delicately in my arms in the NICU. I'd grasp his teeny hand and wait patiently amidst the cords and beeping machines for the handful of times he would peak up at me sleepily. I would keep his room light off to make it easier for him. It was always brief; just a flicker of his deep blue eyes before he'd surrender to exhaustion and melt into my arms once again. This was our daily routine and I lived for that tiny flicker of blue.

Now I can hardly get those eyelids to close. That flicker of blue is now endless, and the hours of cuddles have turned into a wiggly battle for affection. Or in his case, everything in the room that's the least bit interesting. Oh how he's changed. And in only six months... There's still so much to come!

But before I run off on a tangent and give paragraphs and paragraphs on the countless joys these past six months have brought me and how I can't believe there's so much more to come, I must go and enjoy this rare cuddle before he's suddenly a teenager.

Happy Tuesday!

Thursday, February 7, 2013


I was told by a therapist not too long ago, as we watched Jaxson struggle to reach out and grab a toy, that most ‘typical’ babies struggle with something like this for only a week, before it’s mastered and they move on. Jaxson has been struggling with it for well over a month. I watch his little brow furrow and his eyes cross as he tries desperately to grab a hold of that colorful little toy just inches away. He gets so close, pinches it with his fingers, then drops it. And so we begin again.
At first, hearing this statement hurt. My baby was indeed dragging behind, even if with something small. But I’ve had to stop myself. I’ve had to really think about this, lay-awake-at-night-tossing-and-turning think about this. What is it that matters most to me? That my child rushes through his milestones? That he grows up quickly? That he looks and functions like everyone else does? That he outgrows his need for his mommy sooner than later?
No, no, no, and definitely no.
Thinking back to when Jaxson was first born, when the joy and empowerment of bringing a child into this world was replaced by fear, doubt, and grief, I never once thought I would be where I am right now. I had hoped I would be, but could not see myself in these shoes. As guilty as I felt then (and even now for ever thinking it), I was not sure he would bring me happiness, or fulfillment; I was not sure I could love him or protect him or guide him as I would another child. I was terrified.
And there are still times, fleeting moments that pass too quickly to leave any significant change in the course of my day, that cause the slightest twinges of remorse, the slightest pin-prick of fear that I felt the day he was born. These are tiny moments I try not to notice. Like when I see Jaxson next to another baby his age or even a bit younger, I try not to compare. I try not to notice the ways in which he is slowly falling away from the “typical” path of a child his age. Now, don’t get me wrong, every child will do as they please. I’m not saying I expected him to follow in exact footprints. But there are some obvious differences now. I can see them when I observe him with another child. I can see how much more sturdy their head control is. I can see how easily they reach for a toy and hold it close to them. They roll over with more ease. They’re closer to sitting up or crawling. They take in solid food. I notice the shape of his eyes more too, the way they pinch at the corners. I notice the flatness of his nose. How short his arms are, how stubby his legs. I notice how much harder he has to work towards something that comes so naturally to others.
I was told by a nurse after he was born that comparing my child to another would be one of the biggest mistakes I could make. Though this can be true in some cases, some that I’ve obviously come to notice as of late, I think all of this has taught me something:
I can see now that I’ve been given the gift every mother wishes she could have: to keep their baby their baby just a little bit longer. I have been given a few extra sweet moments with my baby that I would otherwise not have. He may need me to support his head a bit longer, he may need a bottle a bit longer, and he may not crawl or run away from me too soon. I may have to carry him around while other moms are fighting to hold tight to their little one’s hands. He may babble longer before he completes a word. I may get a few more close moments of feeding in my arms instead of a high chair.
But there will come a day, as with any child, where he lets go of my hand too, a day where I fight to keep his tiny fingers in mine. He won’t need me to feed him anymore. He won’t need a physical therapist. He won’t need me to help him sit up, or grab things or hold his head up. He’ll beg me to let him put his own clothes on. He will bathe himself. One day, he will tell me those five bittersweet words that leave a mother crying both tears of joy and sadness, “I don’t need your help.” And I tell you what, all of those moments I got to hold onto just a little bit longer than most, the one’s that I feared so deeply at first, will be the sweetest and most cherished of them all.  
Because in a world where time is ever fleeting and the best moments are here and gone much too fast, I have this: A beautiful little boy that needs me just a little bit longer. Though sometimes I find myself hoping Jax reaches a new milestone just when a “typical” child would, or maybe even sooner, I am more at peace with his abilities (or lack of) with every new day. I have been given the beautiful gift of a few extra special moments to relish, and with his first half-birthday creeping up, oh how thankful I have become for all of his small differences.

Sunday, February 3, 2013

Our week in a nutshell:

What an interesting week we've had.

Jax had his first visit from the physical therapist!

She was very impressed with his abilities, and even let out a "holy cow!" when she discovered he could lift himself up using her hands. I was one proud mama.

He discovered how much he loves sleeping on the couch (in the oddest yet cutest positions):

 So dreamy.

He also learned how to fall asleep in his crib without me rocking him first. My heart broke a little... and I think I must have checked on him every other minute at least.

He discovered bubbles:

And television...:

 He got milk-drunk at target:

 He decided his left hand is much cooler than his right, and has shunned it (seriously, it's like he doesn't realize he has two hands):

 He discovered his feet, and got a little more adventurous in his bumbo chair:

(please take a moment to admire his adorable cardigan. I wish I would have gotten it in every size!)

He got to hang out with some friends:

The little girl in front is Karlee (in the blue). She's a week YOUNGER than Jax. He's just so teeny, not that I'm complaining. He's still in newborn/ 0-3 month clothing. Talk about getting my money's worth!

The poor guy had to endure his mommy ogling over how cute his wittle butt is:

Really though. How cute.

And as usual, he melted my heart:

Oh, those beautiful tired eyes.

And he decided he could be camera shy. Either he looks away, closes his eyes, or gives me the blankest of stares. Picture taking is getting rough:

He'll be five months old tomorrow too... oh lord. Slow it down, little man. Mommy's not ready.