Give Credit Where Credit is Due

Dear Liddy,

This week has been a busy one already...Monday saw us (Caleb, you and I) driving to Indy for your appointment with the Down's Clinic. While it was wonderful to spend the extra time with you and Caleb (and to visit Miss Emily) the actual appointment just about did me in. We saw the nurse practitioner there and although I am sure that she's a very nice person, your Mommy was not a fan. 

I consider myself extremely educated nowadays about Down's Syndrome. And I can tell you that without any question, I am an expert on you. I may not know everything there is to know, but you are my baby and I know YOU. I know what your strengths and weaknesses are, I know perfectly well what you are capable of. I know the ins and outs of your heart condition and I have seen how far you have already come.

 I do not appreciate someone who has never laid eyes on you at all to come in the room and not even give you the chance to prove to her how amazing you are. I don't appreciate not being listened to. And I especially do not appreciate you being pigeon holed into some textbook definition of what DS is supposedly like. Just because you have a couple of letters behind your name doesn't mean that you know everything. 

Maybe I take offense because I remember all the things we were told to "expect". And I have watched you do the opposite of every single one from the day you were born. Or maybe it has to do with the fact that even I understand that there are no set of exact "symptoms" that every single child who happens to have that little extra chromosome exhibits. While one child may have extremely low muscle tone, another may not. While one may have trouble gaining weight, another may not. You all are as individual as everyone else is, and I would expect someone who works around such special, amazing kids every day to realize that, acknowledge it, and act accordingly.

You have been eating from a bottle for almost 4 months now and you don't aspirate. You eat baby food from a spoon like a pro and you love it! You have been rolling from your back to your tummy for 2 months now, and are quite an expert at it. You have gained an impressive almost 6 lbs from the day we brought you home from the hospital. You hold your head up like a pro, and are happiest when you are sitting up so that you can watch the world go by. You are determined to crawl and practice every time you get on your belly. By every indication, you are exactly where you should be developmentally, exactly the same as any other baby your age, just a tad bit smaller.  And it angers me to have someone not give you the credit that you deserve for all that you have accomplished, against the odds, with nothing more to guide you than our love, a little therapy, and sheer determination.

You are yourself. With all the grit of every single strong woman who has come before you. While all of the women in our family carry that spine of steel heritage within us, you have more determination, strength, and courage than all of us. Maybe more than all of us combined. You have examined the odds and decided that they just don't suit you. And I admire that in you more than I could ever say. Because of your superhuman accomplishments, you have made ME stronger than I ever was. You are a fighter, and although I always considered myself one too, you have made me more of one. And I will fight to the death to prove how absolutely awesome you are to anyone who ever doubts you.

Needless to say, I'm pretty sure that that NP won't be seeing you in the future. After all, there's only so much tongue biting Mommy can do. lol

I love you so much, Bug.

XOXOXO,

Mommy

Peaceful Easy Feelings....

Dearest Bug,

We live in the house that I grew up in. It's not a big house (especially not for two boys, Daddy, Mommy and you!) but it's as comfortable to me as an old pair of jeans...it may be worn in places, but it still fits me perfectly. :) By far my favorite place in the house is the front porch. 

My fascination with front porches came long ago. Lazy summer evenings spent watching Caleb ride his bike and play with his friends, while drinking sweet tea (or sometimes adult beverages) with Joy, who started as my neighbor and became one of my dearest friends. We spent many good times on my porch (or hers) sitting back and watching the world go by. That porch was the site of some of my greatest joys, funniest stories, and even my greatest sorrows. Thus began a true love affair.

When I moved to this house, several months before I met your daddy, one of the very first things I did was buy comfortable chairs for the front porch. I spent many evenings of that first summer ensconced in the ambiance of "country" living. Our front porch is where I mourned the passing of the greatest woman I have ever known, and it is where your Daddy and I spent our first date. :) 

Life got hectic and I found that I had less time for porch sitting in the evenings, which is my favorite time of day to spend there. I had forgotten how easily that old peaceful feeling creeps in when I sit there and let go of all the stress of the day.

Until last night.

Our neighborhood goes to bed rather early. The darkness surrounds me like a warm comfy blanket, and the only light is moonlight. The stars spread across the sky like a thousand diamonds, and lightning bugs play tag among the tree branches. A symphony of tree frogs sing from the softly rustling leaves. This is what I have been missing. :) 

I came in last night more at peace than I have been in a long time. And I made myself a vow. Every night from now until winter, after the kids (including you!) are all tucked in and the chores are all done, I will spend at least 10 minutes soaking up the peacefulness found on our front porch. I hope that when life gets stressful, I will be able to find my little piece of paradise nestled sweetly there in front of the place filled with all the people I love most. 

From My Front Porch Looking In~Lonestar

Oh yeah
Yeah oh yeah

The only ground I ever owned was sticking to my shoes
Now I look at my front porch and this panoramic view
I can sit and watch the fields fill up
With rays of glowing sun
Or watch the moon lay on the fences
Like that's where it was hung
My blessings are in front of me
It's not about the land
I'll never beat the view
From my front porch looking in

There's a carrot top who can barely walk
With a sippy cup of milk
A little blue eyed blonde with shoes on wrong
'Cause she likes to dress herself
And the most beautiful girl holding both of them
And the view I love the most
Is my front porch looking in, yeah

I've traveled here and everywhere
Following my job
I've seen the paintings from the air
Brushed by the hand of God
The mountains and the canyons reach from sea to shining sea
But I can't wait to get back home
To the one he made for me
It's anywhere I'll ever go and everywhere I've been
Nothing takes my breath away
Like my front porch looking in

There's a carrot top who can barely walk
With a sippy cup of milk
A little blue eyed blonde with shoes on wrong
'Cause she likes to dress herself
And the most beautiful girl holding both of them
Yeah the view I love the most
Is my front porch looking in

I see what beautiful is about
When I'm looking in
Not when I'm looking out

There's a carrot top who can barely walk
With a sippy cup of milk
A little blue eyed blonde with shoes on wrong
'Cause she likes to dress herself
And the most beautiful girl holding both of them
Yeah the view I love the most

Oh, the view I love the most
Is my front porch looking in
Yeah
Oh, there's a carrot top who can barely walk
(From my front porch looking in)
A little blue eyed blonde with shoes on wrong, yeah
And the most beautiful girl
(Beautiful girl
From my front porch looking in)
Holding both of them
Oh, yeah~

Good night sweet angel...I'm off to commune with the porch!

XOXOXOXO,

Mommy

Dedicated to Special Care Nurses

Dear Liddy,

After your doctor's appointment today, we took a small side trip over to IU to visit one of the nurses who took care of you in the NICU there, Emily, who is very soon moving with her family to Georgia. We went to say goodbye, even though I am sure that she will be a visitor when you have your OHS. I wanted very badly for her to be able to see how all of her hard work payed off and what a beautiful, happy, and healthy baby you are!

You had a wonderful team of ladies who took such great care of you while you were there and although we loved them all (and they all loved you too!) two of them really wiggled their way deep into my heart, Emily on day shift and Karen on night shift.

Emily was there on the very first day that they brought you over from Riley's NICU and she immediately fell head over heels in love with you. That would have been all it took to steal your mommy's heart too, but when I found out that her married name was the same as my maiden one, it was true love. :) Little did I know how very much she would make a difference in my life, and that after three weeks of both of us fighting to get you home, how much of a friend she would be to me. 

Karen was on duty for the middle of the night feedings. I didn't spend as much time with her as I did with Emily, because frankly I was half asleep when I was around her. lol But she spent a LOT of time with you and was known to carry you around with her while she did various things during the wee hours of the night after Mommy and Daddy went home. And now since you've been home, I have been lucky enough to build a friendship with her through the emails, pictures, texts (and even a visit) we have shared...

There really aren't words to thank these two amazing ladies for all that they did for you, and for me. They have held my hand and wiped my tears. They have spoken frankly about what needed to be done and have stood beside me fighting to get someone, anyone, to listen to our concerns, our fears, and our wishes. They have given me sound advice and unwavering support. They celebrated each of your victories (almost walking on air with every ounce that you gained!) and practically cried with us with every setback. They giggled and fussed over every outfit we brought in for you, and had to go show you every day so that EVERYONE could see how very adorable you looked. These two fought to take care of you on the days that they were working! They have guided me, befriended me, and loved both of us deeply...and I adore them both!!! I sincerely hope that we are every bit as blessed by the nurses who will take care of you during our next hospital stay as we were the last one!

I am so sad to see Emily leave, but I also feel that she was here right when we needed her, and will do bigger and better things as she moves on. Georgia, I hope you know how very lucky you are!

Here Comes the Rain....

Dearest Lydia,

I have been wanting to write this post since our Florida trip but never quite found just the right words that I wanted to say (or the time to quietly sit at the computer and contemplate them either!). Unexpected events yesterday made it seem necessary. We had an unexpected visitor who drug up some old hurts that had seemingly healed. Turns out those scars we thought we were carrying turned out to simply be shallowly scabbed over wounds. And all this made me think that somehow life always throws you a curve ball when you feel that you are least prepared to handle it or when you have more than enough worries settled within your heart already.

The similarity to our weather lately is rather uncanny. While parts of our country are battling horrific droughts, others are dealing with immense amounts of rain, including us (although this month has been better!). There has been wide spread flooding and many people have lost everything they have, all while people in drought stricken areas would almost kill to have a little of that extra moisture. I feel deeply within my heart that this is what is happening in our lives as well.

All it takes is a quick look around to find plenty of people whose lives are plagued by a drought of the spirit, while we, as a family, have had more than our share of rain during the last year.

Even as I watch the storm clouds gather on the horizon, knowing that once again it's going to rain, I feel as if WE are the lucky ones. 

Rain makes things grow while drought causes things to wither and die. And I have to say that all this extra rain has allowed me to flourish. I think it has caused the entire family to bloom, as beautifully as any flower. 

There are times when I wish desperately that I could see the rain coming as easily as I could standing on the beach, watching the ocean become windswept as waves of water came washing over its surface.

But life doesn't give us those guarantees. The rain usually takes us by complete surprise, even when all the signs are there that it's coming. It's easy to miss the rising wind, the gathering clouds, and even the thunder and lightning, all beautiful in their own way. However, a storm is nothing without the cleansing kiss of the rain, which makes everything green and bright and fresh.

I find, looking back on the last year, that even though there have been times where I have pleaded with God to show me just a glimpse of sunshine, I am grateful for all the rain He has seen fit to shower upon us. That rain has cleansed us, made us strong, and allowed us to appreciate the sun just a little bit more. Without those storms, we wouldn't be the family that we are today....

Maybe we wouldn't appreciate the greatest blessing He has given us in you. 

So when I see those black clouds rolling in, I'm going to lift my face to heaven and tell God, "Bring on the rain." Because I know that when it passes, I will be a better person; stronger, more humble, more appreciative, and more at peace.

I love you, Lydia Anne, and I can already see blue skies ahead.....

 

XOXOXO,

Mommy

Magical Tricks....

 

Five months old...and already determined to crawl. Frankly quite perturbed that you can't. 

 

Shaking toys around like a professional, if key rattling was a career.

 

Blowing raspberries. Aunt Cheryl has been trying to teach you this for months, and you figured it out all on your own!

Laughing....my very favorite! I'm pretty sure there is no end to the ridiculously crazy things I will do to have the chance to hear this giggle!

Time Stops For No Man...Or Woman

Dearest Lydia,

Here we are. Well, here I am anyway...you are nestled sweetly in dreamland. :)

It is almost 11 pm and I'm pretty sure that I too should be snuggling into my warm soft bed for the night, and yet, here I am, wide awake with my mind running circles around itself. AGAIN. Somehow, when the house is quiet, my mind starts working overtime. 

I can't quite put my finger on one thing precisely that is causing me to lose sleep. I think that it is a combination of all the little worries that I try to ignore all day. In the daytime, I stand strong in the faith that God will take care of us, and because of that I can carry myself with strength and confidence. In the dark, I still believe that He holds us in His hands, but that old "fix-it" mom syndrome takes over. 

We are three weeks out from your surgery....a mere 21 days. Those 21 days are going to fly by way faster than I am ready for them to and then, we'll be handing you over for repair of your little ticker. I am much more at peace with this than I was even a month ago (thanks to another beautiful baby girl who sailed right through her own) but there is no way to completely silence that persistently annoying voice that whispers out of the corners of my mind. And its soooo hard to prepare for the fact that our world stops existing for however long it takes to bring you home.

 

This quiet life we have built filled with laughter, smiles, silly boys, and a cozy home will be traded for a hospital room filled with monitors, tubes, wires, doctors and nurses. 

We have already decided that even if your brothers are allowed on the ICU floor that we are not going to bring them down. They love you so much, Liddy, and if I'm scared about what you will look like afterwards, what will seeing you laying there do to them? But with that decision, even though it might be the best one, comes the grim reality that its possible that we will not be seeing them for a couple of weeks. They understand. But it still makes your daddy and I sad to not be with ALL of our kids, even though we know its only temporary. I just have to keep telling myself that after this, we never have to do anything like this again....At least I HOPE not!

Time doesn't stop just because I want it to. I wish so much that I could keep these precious moments forever, without the threat of OHS hanging over our heads, with you and your brothers just the ages you are now (although without some of the teenage attitude Caleb has lately lol). I'd be perfectly content for nothing to ever change. But no one asked me. I can no more stop time than I can change the color of the sky or make the sun stop rising. So I guess that I am just going to be forced to spend 21+ more days sitting up at night, long after everyone is tucked in their beds fast asleep, whittling at my worries like an old stump of wood until something beautiful emerges........

After all, that's how I got you! :)

I love you to the moon and back. I love you to the depths of the oceans. I love you 1000x the number of stars in the sky. Always.

xoxoxoxoxo,

Mommy

Taking on the World, One Smile at a Time

Dear Liddy,

I have found that children's books hold much wisdom between their well loved pages. Some of my very favorite books when I was a child myself are still the ones that I have read to Caleb, and will someday read to you. Winnie the Pooh, which taught me about friendship, differences, and unconditional love. Charlotte's Web, that taught me that every day miracles do happen, and that even something we fear can be a thing of beauty in itself. The Velveteen Rabbit, which taught me about the magic that comes from truly loving someone. I never read a whole lot of Dr. Suess when I was little but when Caleb was little we read quite a few of his books. By far my favorite was, and still is, "Oh! The Places You Will Go." And I just want you to know, baby girl, that I simply can not wait to see the places that YOU will go either......

Oh, the Places You'll Go!

by Dr. Seuss

Congratulations!
Today is your day.
You're off to Great Places!
You're off and away!

You have brains in your head.
You have feet in your shoes
You can steer yourself
any direction you choose.
You're on your own.  And you know what you know.
And YOU are the guy who'll decide where to go.

You'll look up and down streets.  Look 'em over with care.
About some you will say, "I don't choose to go there."
With your head full of brains and your shoes full of feet,
you're too smart to go down any not-so-good street.

And you may not find any
you'll want to go down.
In that case, of course,
you'll head straight out of town.

It's opener there
in the wide open air.

Out there things can happen
and frequently do
to people as brainy
and footsy as you.

And when things start to happen,
don't worry.  Don't stew.
Just go right along.
You'll start happening too.

OH!
THE PLACES YOU'LL GO!

I know..without a single doubt...that you are going to take on the world. With your sass, your spunk, and your radiant smile you are going to capture the hearts of many. And that may be your greatest gift. :) 

I had a long talk with my dear friend, Joy, the other night and while we were talking about you, she said, "Heidi, you have changed so much since Lydia was born." She's absolutely right. That change is you. I see things so clearly that I never took the time to see before.

I wake up with a smile on my face and lay in bed listening to the bright and bubbly chatter emanating from your bassinet. I am the overjoyed recipient of your beaming smile when I lean over to pick you up. You laugh at me, laughing at your silly faces..and I just KNOW that you are going to be a little clown, always making everyone laugh. 

You absorb everything around you like a little sponge, and Heaven forbid I should start to worry that you won't do this or do that, because even though I never say those things in front of you, you just seem to know. Within a short amount of time, you will PROVE ME WRONG every single time. I love that! One of these days I will get it through my thick head that I should never doubt you. You are absolutely amazing!

This week you have:

~Become a pro at grabbing your toes and holding onto them for dear life. You are even working on putting that chubby little big toe in your mouth.

 ~Eaten baby food and cereal the last few days. I'm glad that I waited a little bit longer, even though we've already tried to do this before. You just weren't quite ready the first run time and seemed to get very little actually IN you. All of a sudden, you are eating from a spoon like a pro. Well, like a pro 5 month old. lol

~Learned to blow raspberries...usually with a mouthful of food. :P

 

~Gotten even better at head control, arm control, AND hand control. You can grab your favorite keys, shake them around, switch them from hand to hand, and even are starting to throw them around. You can hold your head up proud and strong for minutes at a time, and are beginning to hold yourself up for small amounts of time on your arms.

~Allowed quite a few different people to hold you...some that you hardly know or who you don't know at all. That is a tremendous stride for you! I think partly you are doing it just to prove me wrong. lol All that worrying for nothing! But I am overjoyed to see you enjoying the people who love you so much, and allowing them to enjoy you too! :)

I'm so proud of the bright and beautiful girl that you are, Lydia Anne. And I know that I say that all the time, but I feel compelled to say it again and again. :) I want you to never forget, and to always know exactly how much your family loves you....or how very blessed we are to have you in our lives. 

All of my love,

Mommy

Newest Song of the Week.....

Dear Liddy,

Imagine my total surprise and excitement when you and I went grocery shopping the other morning (to waste time while we were waiting to pick Caleb back up from band) to find that my favorite (and I do mean FAVORITE!) author had released a new book. Oh happy happy day! Of course, I had to have it. And couldn't wait to start reading it either. 

That was Monday and after using every single spare minute I had to read, read, read, last night I finished it. lol

The book came with a c.d. of an artist I have never heard of (Ellen Wilbur). Although I didn't love every song that was on it, there were two that stood out; one specifically called "Faith". I felt the lyrics could have been written about this crazy road we're on, you and I and the rest of the family.....and because of that, I wanted to share them.

Faith

lyrics by Ellen Wilbur

You didn't say there'd be no pain, instead you made me strong.

You didn't say I had a voice but you gave me a song.

You didn't promise safety but you made sure that I am.  

I know there is a reason that I found you when I did. 

Take another breath although I can not spot the air. 

Take that first step even though I can't make out the stair. 

Faith is being sure of things that others can not see. 

I believe in you because you believe in me.

I'd rather walk on water than skate upon thin ice, learning what is gained from selfless sacrifice.

I'm stepping off a cliff beneath my feet is sky.

But if you can not catch me you'll teach me how to fly.

I know the moon will pull the tide behind it every night. 

I know there's electricity because I see the light. 

Faith is being sure of things that others can not see. 

I believe in you, because you believe in me.

Fairy tale is different from what I used to dream. 

Castle's not a castle, love's never what it seems.

Don't need a happy ending, just a second star.

Won't listen to my lie because I'm bleeding with my heart. 

Even when it doesn't shine, I know there will be sun.

Can't predict the future but tomorrow's gonna come.
Faith is being sure of things that others can not see.

I believe in you because you believe in me.

God never promised sunny skies and straight paths. He never promised that this life would be easy, or fun, or without heartache. He never promised me that I would have endless days filled with nothing but happiness. But you know what? He did promise that He'd never leave. He did promise that He would never give me more than I could carry. He does have immense faith in ME, as proven by the beautiful gift of YOU.

This week, I am at peace. I don't know quite what it is that has caused it...Maybe it was days spent in the sun with the ocean breeze blowing in my hair and the most amazing view spread out before me. Maybe it was truly getting to know you. Maybe it was tiny Ollie breezing through her surgery and getting to come home so soon. Maybe it was the answer to all of my prayers.

We're going to be just fine. I believe in YOU. :)

xoxoxoxo, 

Mommy

Back to Reality.....

My Dearest Itsy Bug,

We got back from vacation on Wednesday morning at 3 am. I had every intention of writing a post before now about our amazing retreat to the sea and the varied accomplishments that you achieved while we were there, including turning 5 whole months old! :) But guess what. I didn't get that done. lol Carole was here at 5 pm Wed. for your therapy and I spent the rest of Wednesday (and part of Thursday too!) putting everything in the house back in order. Then Ayden came on Thursday night and Caleb came on Friday morning. We spent the day yesterday with Grandma, GG Garnet, and Aunt Cheryl; followed by the long awaited meeting of Aunt Ashley, Uncle Joe, Kenzie and Madi, who are visting from Louisiana, with you. :) Aunt Ashley was sooo disappointed when you didn't cooperate and come out while she was home for Christmas and she has been dying to get her hands on you ever since. Thank you for being such a good girl!

Anyway, among all the hustle and bustle, I did not get the post that I wanted to write written because I was having too much fun! lol

Last week, I got to spend a lot of time getting to know you even better than I already did. With this fifth month's passing, you have become even more of a interactive player in our family. There are certain things we can do that make you giggle every time, and you have decided that you like it very much when Mommy calls you Itsy Bug. You have shown a stronger stubborn streak (as indicated by your tummy time woes this week). You have gotten rolling to your stomach from your back down pat now and can hold your head up super high for longer periods of time now. So you lay on the floor, rolled to your belly, pulled in your legs and started them moving with all of your might. Unfortunately, these early attempts to crawl are met with resistance because you haven't figured out that your arms have to be involved too. You also get aggravated if you have to take your hands away from the general vicinity of your mouth.

Your thumb really is your best friend ( you even try to stick it in your mouth while you are eating!), and is constantly a mess of slobbery goo.

 You are VERY proud of yourself that you can hold your head up...and even showed off for me enough that I got some truly adorable pictures of you.....

 

Just look at your sweet face. :)

I have to admit that I was a little nervous about the sleep situation on vacation. I was worried that you would refuse to sleep without your fan, your bassinet, or your home. Yes, you have taken short naps in your playpen but never have you slept there for an extended period of time. You just started putting yourself to sleep, but so far at home you need the fan, the TV, your cuddly blanket (not covering your precious toes of course!) and the confines of your bassinet. You actually slept in the condo in a separate bedroom from us in the condo where we stayed, and I wondered if you would end up in bed with us, or cuddled on my chest on the couch. I shouldn't have worried! Not only did you sleep wonderfully in your playpen in your own room, you decided this week to tell me when its time for bed. You adjust your blankets yourself now, typically nuzzling a corner of the blanket that you have artfully arranged beside your face. You roll around in your sleep and aren't often in the same position that you were when you went to sleep as you are in the morning when I come to get you up. Another sign that you are growing up!

You also get quite the attitude when you get a pair of sunglasses on, even if they don't actually fit........

You sing, in your own way. You have a variety of sounds now that you use to voice your happiness, your hunger, your sleepiness or sometimes even how much we are irritating you. Last week, you figured out how to grunt. And have spent the last week growling at us like you are a cave woman. lol

You seem to enjoy sandy toes....

 

and Mommy's morning commune with the sand and the sea, which I am fairly sure you had no clue about, but which you happily participated in every single morning just the same...swinging peacefully in your swing on the balcony overlooking the sea.

You decided that letting the waves wash up onto your feet is pretty fun, but getting any other part of you wet is completely unacceptable. You enjoy looking at the ocean and listening to the waves, but kindly keep you out of the sun and the heat unless we are prepared to deal with a major melt-down.

You rode a boat for the first time....

where we saw dolphins.....

Well, Daddy and I saw dolphins. You..well, lets just say you decided a boat is a very nice place to watch the backs of your eyelids.

Eh. Who can blame you? It does rock after all.

You rode in the car like a trooper, and were an angel in every restaurant we took you into. Once again, collecting hearts........

including your mama's. :)

Now we're nicely settled in at home again. It was a wonderful break, a peaceful interlude in the midst of the madness that has been the last year. There is still a little madness to come, as your surgery date grows nearer (now just one month away!). But hopefully our little beach jaunt will give all of us the strength and the peace that we need to face whatever comes our way!

Mommy loves you, baby!