Wednesday, August 29, 2012

Pain + Suffering = Blessings

Let me start by stating that I am not a controversial blog writer.. nor a controversial person by any means. I hate confrontation, shut down when people get upset, and take everything to heart. (Ask my husband..)

With that disclaimer in mind.. yesterday I was scrolling through my Facebook when I saw this image.

(Please keep in mind the disclaimer.. not really trying to stir up a moral debate NOR a political discussion.. 
Just sharing my thoughts..)

The image is startling.. sad. But what saddened me even more were some of the comments under it.

Someone was arguing that eagle eggs can in no way be compared to a human fetus because eagles are an endangered species and humans are obviously overpopulating the earth. He argued that Pro Choice is the only choice. He also boldly stated that if a child is found to have a "defect" the mother should have the right to spare the child from a miserable life of pain and suffering.

That stopped me cold in my tracks.

My daughter was born with a "defect."

Does this look like the face of a miserable life of pain and suffering?

After another woman posted a response on the link that she was, in fact, born with a defect that caused her pain every single day, but in no way was her life worth NOT living, the other man went on to clarify that by "defect" he meant that the child would surely be born dead, or would die shortly after due to complications.

Ohhhh... so you mean like the many MANY children I know who have CdLS, like my Ella, whose mothers were told that they probably wouldn't be born alive? That immediately after birth they were given the grim diagnosis that their child might not make it through the night? That they would never be able to walk, talk, eat, even breath on their own? And those same children that are today walking into their doctor's offices, staring them in the face, talking to them, proving them wrong.. EVERY DAY?

Or like this sweet baby, who has Trisomy 18. She was expected to be stillborn or live a very few minutes at best. She's 4 1/2 months old now. Has her family endured pain and heartache? Yes. Suffering? Of course.
Blessings beyond measure? ABSOLUTELY.

No one should have the right to decide for an innocent baby who is brimming with potential and life what they can or cannot, should or should not do. Who are we to decide who we think is going to live? Who we think is going to have a pain-free life? (As if that were even a thing!) 

Life is FULL of pain and suffering, defect or no defect. Imagine if you will.. The first woman on Earth. Her belly is swollen, excruciatingly painful contractions are coursing through her body. She has no clue what is happening. She only knows the pain. She only knows she is suffering. She doesn't know what is coming, doesn't know what is happening to her body. What if she were able to decide in that instant that she wanted it to end. Right then and there. To stop, press a magic button (no, I'm not talking about an epidural), and take it all away. All the pain, the suffering, the discomfort. GONE. A wonderful feeling I'm sure. She would have felt better immediately, euphoric even, justified that that kind of pain could not have been worth whatever outcome was to ensue. Little would she have known though, that along with that pain and suffering she took away, she was also taking away something else-- something she couldn't even imagine.. her precious "unknown" baby. The blessed outcome of that pain. Sure, she would be done suffering for a short while.. but imagine all the "unknowns" she would be missing out on.. Hearing the first amazing cries of her newborn, running her lips along the soft fuzz atop his head, the sweet smell of his chubby neck, the feeling of fierce love after seeing him smile up at her, his mother, for the first time, watching him grow and learn every day...

To take away pain and suffering is to also take away the infinite blessings that come directly from that pain. If we do not allow ourselves to struggle, to suffer through the storm, we may never be able to truly appreciate the awe and beauty of the lush green fields beneath the strikingly brilliant colors of the rainbow that ensue.

There are many things in this life that people don't necessarily deserve.

But an unborn child DOES deserve a chance at life. 

The Facebook conversation took a bit of a nasty turn after that, like discussion like this usually do, and I left feeling sad and downhearted about the world we live in.

Like I said, I'm not trying to stir up a debate. I hold no judgement towards people who have differing opinions, nor people who have had abortions (I know some). I know that your beliefs have probably stemmed largely from fear and inexperience in your situation. I admit I had many of the same anxieties and uncertainties before I had the privilege of "getting to know" my sweet Ella girl.

But what I do know is that our "defect," our "unknown" has been one of the greatest blessings in our lives and I cannot imagine a world where we "chose" not to even give her a chance.

Tuesday, August 21, 2012

Wait.. WHO turned a year older yesterday?

Many of you know yesterday was my birthday.. Yes, I turned another year closer to 30. *Deep breath*
But not NEARLY as close as my dear husband whose birthday was the day before mine.. hee hee. 

THANK YOU for all the wonderful birthday wishes and for making my day so incredibly special.
(The Dairy Queen ice cream cake from the hubby helped quite a bit too..)

Anyways, apparently all the hype leading up to the big day(s) made Ella believe she was turning a year older..???
I'm not sure...
All I know is she is throwing temper tantrums like a seasoned veteran of a 2 year old.

Someone please tell her she still has 4 1/2 months left!! 

My sweet baby girl has morphed, seemingly overnight, into a raging FIT, throwing her pacifier across the room when she gets upset, then hastily crawling over to retrieve it, sucking on it a few seconds, then remembering she's mad, throwing it again (she's got quite the arm..), and frantically rushing to get it again, for fear that someone will take it away (as if we would punish ourselves like that!!) 

I'm really not sure how to handle her fits.. They're actually pretty hilarious. But I know she's mad about something. She just has no way of telling me what it is.. And I feel like I should leave her to cry and whine a little like I did with the boys, but knowing that she'll get a tummy ache I just can't do that.. A little frustrating to say the least.

On a lighter note, she is also acting like a "big kid" by doing some really great things! Last night for the first time ever, she pushed up to a sitting position from the floor all by herself! She has been so close for months, just stubbornly refusing to even try. She'll do it if there's something (or someone.. namely me) to lean on for help, but she's never done it all by herself before. ( - : So proud of her!

And today for the first time she left the confines of her rug! We have hard wood floors in our house and usually she plays on the living room rug. Sometimes.. rarely.. she'll venture off of it to grab something from the toy stash nearby, but she usually hurries back after a few moments to its comforting warmth and security. She's NEVER shown any desire to go anywhere else in the house.. This morning she was playing nicely (on the living room rug) by herself so I snuck off to the kitchen to wash the dishes quick (Obviously we had a therapist coming soon..). I heard some thumping, so I turned around and there she was, rockin' the army crawl around the corner to come find me. SO CUTE! She then proceeded to tear all the magnets within her arm reach off the fridge, find and eat a leftover cheesy puff on the floor from yesterday, and nearly pinch her fingers in the front door...

While I was super excited to see her venture out on her own and explore, there are some definite downfalls to her newfound independence..
   • Now ALL the floors need to be clean. Every. Day. Instead of just the living room rug.. Occasionally.
   • All the microscopic, most fun to put in our mouths, very choke-able boys' toys need to be picked up in the toy room. Every. Day.
   • I can't escape from her. Ever. Again.
   • I need to make sure ALL the floor are clean. Oh, did I already mention that? I'm a little stressed...

Good thing she's cute..

*If you didn't know yesterday was my birthday, maybe you should "like" Life on M Avenue on Facebook?? Like how I threw that in there? Hee hee.. I even created a cute little link box-thingey on the side of the blog.. Someone try it and let me know if it works? I put off creating a page for "myself" for awhile.. I guess because it seemed conceited. Like I was trying to get people to like me, and create a fan club for me.. But that's not at all what it is. A big part of my desire for this blog is to connect with others, especially parents of kids with special needs.. So hopefully this will be a good way to reach out and encourage others! Thanks!

Thursday, August 16, 2012

Dear Mom, let's chat

Dear Mom,

We need to have a little chat..

I know you're frustrated that I am basically refusing to do any and all of my sign language.
Especially "more" and "all done" at meal times.
You know I can.
I know I can.
It's just that.. well... I don't want to.
I feel like, as my mother, the woman who brought me into this world and has shared nearly every waking moment with me for the past 19 months.. I feel like you should understand me well enough to just know what I want.
When I want it. How I want it.
It's not that I want you to read my mind..
It's just.. well, yes.. yes actually I do. That's exactly what I want.
I want you to read my mind.
Is that really too much to ask?

Yes? Well, then.. let me remind you of all the times you've walked through doorways and misjudged the distance between my head and the wall. Or the times you took your eyes off of me for what you say was only a second, leaving only the hard wood floor to catch my fall. What about the time you insisted on taking me along to swimming lessons in 110 degree heat and I refused to sit in the water to help me cool off and my face turned beet red because I was overheating? Or all the times you've had the audacity to let me CRY for more than 3 seconds, causing me severe gas pain?

Must I go on??

I didn't think so...

BUT because I am the amazing daughter I am, I thought I would put together a small tutorial to help you better decipher my wants and needs.

You're welcome.

Before we can begin a meal and even think about signs, I need a comfortable sitting position.

It could look like this.

Or this.

Either works.. But please, PLEASE leave that restricting tray off. I know you like to put food on it for some unknown reason. Or so I can learn to feed myself I guess.. but it my opinion it would work just as well for you to feed me with your own hand, leaving me not only more time to wiggle, but also more room to wiggle. And isn't that why you want me to sign? To hear my opinion? I thought so.
Thanks in advance..

WHAT THE.... Did you seriously NOT just hear me about the tray??

Anyways.. some signs (hee hee.. see what I did there.. get it?? "signs"?) that I might be done include (but are not limited to..)
Clearly getting more food on my face (and neck) than in my mouth..

Spitting my noodle out onto my arm.

Looking at my hands like I might want to move them back and forth, (which you say means 'all done') but not actually doing it..

Looking at you with a blank stare like I have no clue what you're saying. (The truth? I do.. hee hee)

AHEM! Are you still with me?

Moving on.. some 'signs' (HA! It never gets old..) that I might want more to eat include (but are not limited to)
Banging my tray with wild abandon

Smiling sweetly at you

Or crying.. both seem to work quite well

And looking at you with a blank stare like I have no clue what you're saying. (The truth? I do again.. hee hee)

I will warn you, that if you do not decipher these "signs" in a timely manner you will be greeted with THIS FACE, which means
"Look lady.. I'm NOT gonna do it. Not now. Maybe not ever... Just get. me. outta here."

Wait.. What do you mean this is more complicated??

It's easy.. I promise.
This face means I threw my fork off the side of my tray
(WHY... is there STILL a tray?)

This face means my Applelax (applesauce + Miralax for you amateurs) might be starting to kick in

And this face means..

Ahhh... nevermind..
All you REALLY need to do during the day is get more of these faces

And less of these..


and THE TRAY!! Seriously!!! What. doesn't. this. woman. understand. about. this??

Oye... She's never going to get it, is she?

Monday, August 13, 2012


It seems like just yesterday I was writing this post about the last day of school, dreaming of the time we would spend together and the fun we would have this summer. How is it possible that those days are already nothing more than mere memories that will be slowly fading with each passing day? The colors are already a little less vibrant and the focus is a little fuzzy.. but the smiles and giggles are bright as ever in my mind.

Don't get me wrong.. my mother's insight was absolutely right. Some days this summer were filled with splashes in the pool and popsicles and giggles. And some were filled with fighting and whining and crying. (Especially this last week... WOW!) But that's the beauty of time. A reflective look back, even on the hard times, can always bring a smile to my face, knowing we made it through together, stronger than ever. I'm thankful I got to spend the good and bad days with you.

As our carefree summer wore on, I started to sense the familiar school panic setting in (for me). I made a conscious decision to not set foot in a Wal-Mart after the 4th of July when they get their school supplies out (and to stock up on toilet paper and dish soap), not look at a Sunday Paper ad that had the words "Back to School", nor read the school newsletter with the school supply list in until at least August started. Everyone around me knew better than to utter the "S" word. And just last night I noticed this is what my calendar looks like...

Denial much??

No denying it now.. You are off to 1st grade and so begins yet another exciting chapter in our lives. I hope we have have given you not only the roots, but also the wings to fly.

As sad as I am to see summer end, to watch the calendar pages flap in the breeze, unable to catch them and slow them down no matter how much I try.. I am actually happy that there is an end to summer. Knowing there days were fleeting and there was an all-too-soon end in sight made me enjoy and appreciate these last 3 months even more. So here I sit, with a familiar ache in my heart.. torn between happy and sad. I suppose that's why they call it bittersweet.

I found this poem on a friend's blog and thought it was perfect for today.

I wonder what you're doing right now. 
And if everyone is treating you kind. 
I hope there is a special person. 
A nice friend that you can find.

I wonder if the teacher knows 
just how special you are to me.
And if the brightness of your heart
is something she can see.

I wonder if you are thinking about me.
And if you need a hug.
I already miss the sound of your voice
And how you give my leg a tug.

I wonder if you could possibly understand
How hard it is for me to let you grow.
For on this day my heart leaves home as 
I watch my baby go.

Thursday, August 9, 2012

Week of Lasts

And here we find ourselves..  the dreaded week of lasts.

Last Monday we'll sleep in..

Last time the boys will play all day in our pool.

Last time the morning will begin with "Hey! Do you want to go catch toads?" followed by "Yeah! Then ride bikes?" "YEAH!" before they even have pants on or eaten their Wheaties (or Rice Krispies..)

Last library story time.

Last time I'll get groceries with all 3 kids in the cart, leaving hardly any room for the things I "need".

Last time I'll have help unloading the dishwasher during the day.

Last time for lunch picnics on the deck.

Last time the boys argue over which song to listen to in the car - "D-I-S-C-O" or "Pop Goes the Weasel" are the current debates.

Last time I wake up to giggling boys "sneaking" up to my room to wake me by pouncing a baby kitty (or 8) on my bed.

Last time I'll contemplate if 10 AM is too early for nap time...

Oh I know these things will happen again.. There are school breaks, Christmas break, and of course weekends..  sweet, glorious weekends... But it's just never the same. It's hard to compete with these every day carefree, seemingly never ending days of summer.

All these 'lasts' have been making my heavy heart painfully aware of the steady passing of time. The evidence is everywhere. The outgrown sneakers haphazardly tossed in a pile on the porch, the faded muddy handprint on the door from last spring that has just been too cute to scrub off ever since, the swapping out of baby swings to big boy swings, trikes to bikes, and fat bats with plastic balls to metal bats and real baseballs. My babies are growing up. The evidence surrounds me, nearly suffocating me at times.

It's the fear of the unknown that is tugging at my heart the most. The unknown ways in which the boys will change between this summer and next.

What if Charlie outgrows his toad obsession? (not likely.. but still)

What if Nolan figures out that Captain Blackbeard really doesn't sneak into our house at night and during naptimes to leave them surprises or hide their snacks with a trail of "gold" leading to them?

What if the boys are too old for the same story time we've been going to every single Friday for the entire 3 years we've lived here? (Ok.. I think they already are technically too old, but I rationalize that since we're the only ones who have faithfully been there since Day 1, we've basically been grandfathered in.. right?)

What if they're not entertained for hours by the simplicity of baby kitties?

What if the boys decide they don't want to play basketballsoccerfootballwrestling in the kitchen while I'm tripping over them trying to make supper anymore?

What if Nolan thinks Curious George and The Cat in the Hat are 'baby' shows next year?

What if our pool is too small for them to enjoy so much?

What if they don't find joy in riding their Gator around all afternoon, picking me those annoying white "flowers" growing all over our yard?

What if they think they are old enough to have an opinion on wanting to *gasp* cut their hair short?

What if they're too old for the kiddie rides at the fair?

and the most devastating...

What if they grow out of being Best Buds?

All these "what if's" have been creeping into my mind and invading my thoughts this week. They have been staring me in the face, taunting me, teasing me, threatening to take away my joy and contentment during this precious last week of summer freedom with my boys.

Until I realized.. I have faced this before. I have conquered this before. It's really not so different than what I have already been through with Ella. The fear of the unknown. That difficult place between here and a distant 'then.' When you know all the things you hope and plan to happen aren't necessarily the things that are going to happen. Where you know the destination you want to arrive at, but the road map is nothing more than a blurry gray ink blot.

I am thankful for the lessons Ella's life has taught me this past year. We cannot dwell too much on the past, nor can worrying about our unknown future change anything.

We only have today. We only have right now. To live. To enjoy. To love.

To spend wistful days surrounded by the ones we love, enjoying God's blessings and reveling in His goodness.

So we do what we do...

Preparing for the future

Yet living for today.

Monday, August 6, 2012

Just a Little Different

The other week my husband and I were out in the garden custom designing a cute little fence for our fresh peas to grow along.  Okay.. not really. We were grinding down old cattle panels to slap together so our weeds peas wouldn't fall over. But anyways... I was in charge of singling the fencing posts out of the treasure scrap pile down by the barn that would be used and then hauling them up to the garden. Of course I wanted the strong, sturdy looking ones (those weeds looked pretty menacing) and preferable kinda-sorta-straight, so the fence stood up a little better.

I was carefully selecting the chosen fence posts, stacking them in a nice, neat little pile, when I suddenly realized that I was subconsciously avoiding the posts with little ribs in them. The best I can explain them is they looked like a screw, with all the little spirals going down the entire length. When I looked at the posts I had, they were all smooth and uniform. They were the same. The others were.. they were.. different.

I tried to push the thought out of my mind. "It's fine," I told myself as I started toward the garden, my tidy little stack of uniform posts in tow, now painfully aware that I was intentionally ignoring the fence posts that were different. I was very mindfully and purposefully avoiding them. I hauled a load up to the garden, but as much as I tried, I just couldn't get my very own, very hypocritical thoughts out of my head.

You see, my own daughter is what some might call "different." She has a rare genetic condition called Cornelia De Lange Syndrome (CdLS), which affects her growth and development. We don't know exactly what the future holds for her, but we are facing the very real possibility that it will be "different" that what we once dreamed. 
And we're okay with that.

I thought about her and the type of world I want her to grow up in, yet I still tried to rationalize it away.. 
they're just fence posts.. right???

They're not people. They don't have feelings. No one is going to know that I left the ribbed ones down by the barn and used only the standard, select "chosen ones" for my garden. Just because I don't want my fence posts to look different doesn't mean I'm not okay with my daughter being different...

Does it?

As I trudged slowly down to the barn for more posts, I knew what I had to do. I carefully and deliberately picked out a beautiful, unique, ribbed, different fence post and proudly carried it to the garden. It might be silly, but I felt a little bit of redemption pounding it into the ground, attaching it to the fence, and watching it stand tall and straight, doing the job it was clearly meant to do.

Is it just me or does that one in the middle stand just a little taller?

I know my one little fence post in my own little garden doesn't make much of a difference. I know it isn't going to change the world. But to me, it represents a new way of thinking. That different is not a bad thing. That it's okay. That we were never meant to all be the same. That just because something (or someone) is a little different, doesn't mean they can't stand up straight and tall and shine for the world to see 
(or hold up rusty old cattle panels for that matter..)

At the risk of losing readers by admitting my very cheesy movie preferences.. one of my favorite movie lines is from 'What a Girl Wants'..

"Why are you trying so hard to fit in when you were meant to stand out?"

My daughter's life may be different than what we once anticipated, our dreams for her may be different, but she is still a beautiful and unique child of God, created perfectly AND wonderfully different in His eyes.