“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Wednesday, February 22, 2012

Facing Toddlerhood.....

I can't believe how much my baby is growing up. It seems like everyday she becomes more a toddler (without the toddling) and less an infant. It's enough to blow the mind!

Exhibits 1 and 2:

I didn't think it was possible for her to be even MORE full of laughter...but somehow she is....

In fact, life seems to overflowing with more lately......

More upper arm strength

More curiosity...

More adorableness.....

More sweet smiles....

and yes, even more sass.   

Look out Daddy. I think this girl is already starting a love affair with shoes. :)

Sunday, February 12, 2012

A Big Mistake

A few days ago, I made a mistake....
I followed a link to an article written by a father about his son with Down Syndrome. The mistake itself had nothing to do with the article itself (it was beautiful) but instead of reading the post and leaving, silly me had to read the comments.
And there lies the mistake. I know what I will find in the comments section. It rarely varies. Inevitably, if you find a public article about DS or about aborting babies with DS, you will find a whole lot of people who truly believe that our kids are "suffering", that DS is a crippling disease that needs to immediately be eradicated. There is continual commentary about the difficulties of raising a child with special needs, about the effects on marriages, sibling relationships, and financial repercussions. All from people who aren't raising a child with DS, and who despite a thousand arguments from those of us who actually ARE, would be the first in the abortion line if they were to have a positive result from the "new non-invasive blood test." 
The battle lines are clearly drawn and it's obvious that those with such strong opinions can not be swayed from them any more than we can our own, not even with words chosen carefully, calmly stated. I know this.
So why do I still feel as if, when faced with blatant ignorance and immovable, insurmountable misconceptions, I have to at least make an attempt to be the voice of reason with those who can't be reasoned with?

Its a path that leads to no where fast, as well as one that leaves me with a bad taste in my mouth and deep sadness in my heart.
We've come so far to stall here. Its disheartening to see so much misunderstanding, so much denial, so much discrimination, so much just plain fear. It all boils down to a great fear and distrust of anything different than the ideals we have in our minds.
But if I'm honest here, the only thing that separates me from the ever growing "them" is love. In the early days after the bomb dropped in our lives, stamped with the words "heart defect" and "Down Syndrome", the fear consumed me. Almost totally. The ONLY reason my daughter is now sleeping sweetly in my bed is because the love I already had for the tiny bean who would be my Lydia was already stronger than the fear.

Yes, my daughter has Down Syndrome. But while it might not be the trip that I had planned, it is better than even the carefully laid out tour of my dreams could have hoped to be. Each day brings more to soak up, a virtual feast of sights, smells, and sounds that file themselves quietly away inside my heart for remembrance during the storms that will inevitably return at some point in the future. The brightness of a smile, the twinkle in eyes as blue as the ocean, musical laughter ringing in my ears, the sweet, sticky smell of the curve of her neck and the warm, silkiness of the hair on the crown of her head.
Every one as much a miracle to me as the fact that the sun rises each morning or that the pull of the moon moves the tides. Each a daily reminder that sometimes life gives us so much more than we deserve.

I am honest to a fault sometimes. I've said it a thousand times already, and will probably say it at least a thousand more. I didn't ask for any of this. But sometimes, you just get lucky and God gives you what you need anyway.

I'm sure I didn't change any minds over on that board. And as sad as it could make me, it's not going to change the fact that I know something they don't. I know that my tiny girl is going to become someone amazing. She is beyond perfect in my eyes. I know that she is loved, she is coddled, she is well cared for, and she already knows that she can be who she is with us without reservation.
Those bitter, scared people are the ones missing out.........on all the love they could be giving.
And as for me, life is wonderful.

Tuesday, February 7, 2012

Wordless Wednesday...a Few Hours Early

I don't do this often...(usually because I can't keep my mouth shut!) but I have so many beautiful pics from this weekend that I simply can not keep to myself! Enjoy!!!!!!

Yes, folks. She's feeding herself. :)

She obviously thinks this is a super model pose. She does it every time I take pictures in the high chair!

Sunday, February 5, 2012

Introducing "More" :)

In the midst of trying to get Liddy to dance on video yesterday, I caught this little gem over and over again.......
Welcome to the world of ASL. Liddy can sign "more"!!!!

13 Months

Dearest Lydia,
You have grown up so much in the last few weeks. It literally blows my mind to watch you change, learning new things at a rate so fast that I miss them if I blink my eyes for just a second.
Our house is constantly filled with your laughter and there is no sound sweeter to my mama's ears than that of a happy baby. That laughter proves that you are secure, you know you are loved, and you are ecstatic to be here with us. 
You make us laugh. You make us proud. You make my heart sing. :)

Surely there is no mama as blessed as I am.
Tomorrow you will be 13 months old and as each month rolls past, I can't help but reminisce. Its almost a compulsion to look back on the last 13 months in awe, in wonder, in overwhelming gratitude. 
You have changed this family. Not just the family confined within the four walls of our home...but the extended family as well. All it takes is a smile to bring every person you meet to their knees in humble adoration.

We are ALL better for knowing you....for having you as a part in our lives. 
We could care less if you are doing the things that other babies your age do....crawling, walking, talking. It doesn't matter. You prove every single day that you are strong and determined, that you are smart, that nothing can hold you back when you set your mind to something. 

You don't have a disability. You don't wear Down Syndrome like a rock around your neck. You are already determined to defeat the odds that have been stacked against you since the day you took your first breath. You are shooting down stereotypes, which fall in the face of your grace and beauty. You show your joy in living with an ever present twinkle in your captivating eyes.
Make no mistake...God made you perfectly. He gave you every single thing you need to face this world, to show everyone else what we already know.....that you are an angel. More precious in His sight than the most precious jewel. Immensely precious in my own sight, worth more to me than any Earthly treasure.

There is only ONE you. And I am so thankful that I get to call you my own........

Happy 13 months, Princess Sassy Pants. Mommy loves you so very much!!!

Thursday, February 2, 2012

A Broken Heart No More..

The month of February is Congenital Heart Defect awareness month (as well as Turner's Syndrome awareness month!). 
Most of you already know that sweet Lydia was born with a broken heart. That tiny heart has been the source of me facing my greatest fears, it has brought about my biggest worries, it has forced me to give God my most precious treasure despite my raging terror, and it has brought me my greatest joy now that it is broken no longer....
We were 22 weeks pregnant when the doctor told us that he only saw one valve in Liddy's impossibly tiny heart, a "hard" marker for Down Syndrome,which led us to have an amnio immediately. Not because we had a burning desire to know, but because we wanted all of the cards on the table so that we could make plans for her birth that would put her in the best place possible for her safety.
We knew on that day that no matter what the amnio showed, we would be facing open heart surgery in the near future....the timing was the only thing entirely uncertain.
I was in the beginning days of a second level anatomy class and strangely enough (divine intervention, anyone?) the week we found out all of this we were studying THE HEART. I have to admit that when it came to the lab part of the class, where we were dissecting one, I spent the entire class choking back tears. Yet, I can guarantee that at the end of that section of the class, no one  learned more about the heart than I did. I had a driving force to absorb as much as possible that no one else had, because it was vital to me to know. My profs were amazing about staying after class and answering all of my questions about the normal anatomy versus Liddy's anatomy. 
I even was brave enough one class period to take in the dvd we received of an ultrasound and show her heart to the class. 
Liddy's heart never fully formed a septum (the center dividing wall) which left her with a giant hole in the center of her heart. The septum's formation is actually what divides the original single heart valve into two valves, one on each side. Because Liddy's septum never closed, she was left with the single valve which spanned the space where the septum belonged. 

What a Normal Heart Looks Like

What Liddy's Heart Looked Like
In all honesty, I didn't concern myself with Down Syndrome as much as I did her heart. Her heart was the center of all of my worry. While I did grieve over what I thought was the death of all of my hopes and dreams for my daughter, the fear of what her birth would mean to her already broken, mangled heart consumed me. Down Syndrome didn't scare me half as much as the thought that I could lose her before I even had a chance to really know her. I just wanted my miracle to live.
She was born, in better health than anyone had ever told us to expect.

 Despite most babies with a condition like her own rapidly declining into clinical heart failure, she never did. She gained weight slowly as we waited on pins and needles for the day we had known was coming for months already........
July 14th, 2011. Barely 6 months old. A little over 13 lbs. 

With hearts paralyzed with terror and voices choked with tears, we kissed our angel and handed her to a nurse for surgery and settled in the waiting room for what amounts to the longest day of my life. Almost 8 hours later, we were brought in to see her for the first time.......

There aren't words to describe the agony of a vibrant, sunshiny baby girl being returned to you 8 hours later, so still. 
A complication of her surgery had disconnected communication between her atria and her ventricles, which left her temporarily on an external pacemaker until it could be determined whether she would need a permanent one placed later. 
It took almost 4 days of waiting before I got to hold her. Four days of heart rending pain, helplessness and in Liddy's case, downright anger at these new circumstances she found herself in. She fought us, she fought the nurses, she fought to sit up on her own (which she wouldn't actually do until much later). Until the moment it was decided that I could hold her. 
She knew. Peace descended.

13 days post surgery, she again went under anesthetic for a pacemaker placement. While my fear level was not quite as high as it was before her OHS, I was a nervous wreck. It seemed that it took so long to catch glimpses of the girl she was before surgery that I was terrified that she would return to the lifeless child who had greeted me not quite two weeks before. I was immensely sad that my tiny girl who had already been through so much now had to go through more. But just as the OHS was necessary to save her life, the pacemaker placement was necessary to get us all home. 
My fears were needless. She was awake and smiling when we saw her after that surgery. And three days later, we were heading home.........with the storm at our backs and nothing but sunshine ahead.

While this ordeal was easily the most difficult and painful thing I have ever experienced in my life, there was many good things that came from it. I learned that God is in charge, that He hears my prayers and that He answers them...not always in the time frame I have in mind or in the manner that I would wish, but He answers just the same. I learned that we are lucky.....so many families there in the PICU with us those long 13 days had things so much worse. I learned how strong I can be when it is warranted. I learned the reason for those long days poring over anatomy books, studying the heart...I needed every lesson I learned to understand the doctors entrusted with her care and to continue advocating for her (at every morning's rounds! I'm sure those doctors were so glad to see the last of me!) I learned that NO ONE knows my baby the way that I do; what she's saying without a word, what she is capable of. But most importantly, facing losing her made me realize exactly how very much her presence in my life means to me and how fiercely I love her.

Over 6 months later and without the scars or the tiny bulge in her belly where her pacemaker resides, one would never know what she has been through. Never know that she was born with a CHD. 

For now in her chest where a broken heart once resided is one as new and as perfect as anyone else's.

"Make broken hearts brand new.....That's what FAITH can do......."