The Reality Is....

I've had something on my mind this morning. As I was scrolling through my Facebook feed when I got up, a link to an article a friend had posted last night caught my eye. It was a blog post written by someone who I am sure is more professional a writer than I am and who has been a parent of a little girl with Down syndrome slightly longer than I have. The title itself put me on edge somewhat, "My Child with Down Syndrome is Not a Gift From God." Of course, I had to go read it. There were some things I STRONGLY disagreed with.
Now, don't get me wrong. I fully believe that every parent has a different journey. I believe that all of us were "given" a child with Down syndrome for different reasons, despite the fact that sometimes its difficult to completely grasp what exactly those reasons are. And I totally get that our kids are not all the stereotypical angels full of nothing but sunshine and never ending joy. I live myself with a very real two year old hellion, who has the most magical smile, but who can also go from sweetness and light to a biting, kicking, smacking, temper tantrum throwing heathen in the blink of an eye.

 Lydia is, without a doubt, equal parts her father and myself. The good, the bad and the sometimes ugly. Down syndrome, while a large part of who she is essentially, does not in any way DEFINE who she is. She is, simply, herself. However, where I beg to differ with the a fore mentioned article is here: While she is equal parts her father and me, she also possesses her own qualities that are MORE than anything we could have ever given her. And I have to believe in my heart that God, in His infinite wisdom, bestowed and polished those qualities within her which would give her those things she requires to overcome the unique challenges she has faced, and will continue to face, in her life.

No one wants to hand their 13 lb six month old over for open heart surgery. No parent wants to sit in a waiting room for 8 hours, jumping every time a nurse or a doctor passes by, waiting impatiently for the news that all is well yet fearing the opposite. No parent in their right mind would choose that for their child, or themselves. However, having walked that path, I can say without a single shred of doubt that those hours in surgery, the painstaking process of repairing a tiny heart which would not have continued to beat without those surgeon's hands, without that ordeal, without the painful and long recovery filled with set backs, none of us, including Liddy, would be the same people we are today.
No one wants to watch their child struggle through hours of therapy to do the things that other children do without careful consideration and tons of practice. We work UP to major tasks that come so easily to other babies, younger than she is. I wouldn't have chosen this for her...However, it was the life given to us and her drive, her stubbornness, her sassy attitude give her the motivation to try hundreds of times if that's what it takes...and it makes the accomplishing that much sweeter. I've been the mom of a typical developing toddler and I can guarantee that, although the accomplishments were exactly the same milestones met, those accomplishments were, while causes for joy, never celebrated the way they are now. Maybe that makes me less of a mother to my son than I am to my daughter in your eyes.  In my eyes, it was all a matter of simply lacking the perspective I have now.
No one wants their child to be stared at, made fun of, or hurt. I choose to believe (and more often than not, I'm right) that Liddy gets stares where ever we go because, let's face it. She's gorgeous. She's captivating. There's a magical quality within her that makes people every where stop and gather near her for just a glimpse of her heart stopping smile or a bright bubbly "hi".

That's, again, part of who she is...the precious imp with the alabaster skin of her great-great grandma, with the big blue eyes of her mama, with the same nose and mouth as her brother but with a smile entirely of her own. Will she have her feelings hurt at some point in her life? More than likely. Just as more than likely some day some little punk is going to tease her for the very thing I revere so much in her, her uniqueness. But I hope, with all of my heart, that the self confidence and acceptance of herself that we are fostering in her now will carry her through those hard times. And if not, then she will always have her mama to cuddle her and remind her how very much she is loved. For exactly who she is, Down syndrome and all.

So with all that being said, I agree to respectfully disagree with the author who believes that her child isn't a gift from God. It's completely within your rights to believe that. As for me, I fully believe that my child is. One given to teach me, and so many others, lessons we never even knew we needed to learn before her existence. And for every single thing she has taught me...patience, unconditional love, confidence, pure unadulterated joy, heart ache, faith, tenacity, and the power of God's infinite grace....I am immensely thankful.

A Break From the Norm

This post won't be about Liddy. It won't really be about Down syndrome. It'll be a break from what this blog usually focuses on....simply because I feel strongly the need to put my two cents into an ongoing debate that is the focus of a whole lot of attention this week...and will continue to be in the coming weeks, and even possibly months. Gay marriage. I'm sure that I don't have a lot to say that hasn't been said already (and more than likely somewhere with much wider readership than my own humble blog) but I DO feel that it still needs to be said.
I am a heterosexual woman. I consider myself to be a Christian, despite the fact that I don't currently attend church. I was raised in the church and while I may not know everything about the Bible, I do know enough to get by and to try to live according to God's will. Not that I always live a Godly life. I sin. I make mistakes. I am forced to ask for God's forgiveness on a regular basis.
With all that being said, I wholeheartedly support gay marriage. It's probably not a subject that I had ever given much thought to before Liddy was born and if I had had a leaning one way or the other, I probably wouldn't have voiced it publicly. Before Liddy, I was sort of a coward, I'm ashamed to admit. A rock the boat sort of girl I have never been. However, the person I was before Liddy has been changed and the new person I have become simply can not and will not remain silent when I am faced with what I believe to be injustice and inequality.
Who am I to say that someone should not enjoy the rights I myself enjoy or the rights that I fight so hard for for my daughter because they were born with a different sexual preference than I myself was? How can I not openly embrace the couples I know who are loving and deeply committed to each other, who accept others for who they are without question? And how can I, as a self proclaimed Christian, declare them as sinners unworthy of compassion, acceptance and love?
So while I see the divide grow, even within our Down syndrome community, I can't help but ask myself..."How does this happen?" How does the same group of individuals who fight so hard for their own children's inclusion, acceptance, and basic human rights turn their backs on another group of people who are only asking for the same thing? Because, in essence, that is PRECISELY what is happening when someone declares their aversion to everyone being treated equally.
"The Bible says that homosexuality is an abomination." I hear you. The Bible also says that anyone who eats the fat of an animal should be cut off from their people, any one who blasphemes the name of the Lord should be put to death, we shouldn't eat beef, or cut our hair, or wear clothing woven of different fabrics. More importantly, it says that we should love our neighbors as ourselves, leave the judgement to God and forgive the sins of others, just as they forgive us of our own. So where do we get off proclaiming to be Christian, yet acting so very un-Christ-like? I'm pretty sure that Jesus would be highly disappointed in some of His people right now.
"Let he who is without sin cast the first stone." Hmmm. So who here is capable of casting that first stone? I know for sure it's not me. And I am pretty positive it's probably not you either.
So can we all just agree to disagree, if that is the case, and let others live their lives as they so choose? Can we let them marry who they wish, whether we condone it or not? Because in my opinion, we're all just people searching for happiness and personal fulfillment. Most of us want a better world for our kids to grow up in. A whole lot of us fight tooth and nail for our kids to have the same rights that "typical" people do.And I would bet solid money that if someone tried to make a law that said kids with Ds could never get married, all Hell would break loose. I know I'd be right there fighting for all I was worth. Which is why I'm throwing my hat into THIS fight as well. These people who want nothing more than to get married are someone's children, someone's sisters and someone's brothers. Someday it might be YOUR child. And don't we all deep down just want our kids to be happy?

Spread love, not hate. Because the world could really use a whole lot more of one and a whole lot less of the other.......

Who We Are- WDSD 2013

When we started this journey 2 and 1/2 years ago, we had no idea what to expect. Our firsthand knowledge about Down syndrome was limited at best and everywhere we turned, we heard more negatives than positives. We didn't reach out to the Ds community (in fact, I'm pretty sure that we had little idea that such a large community even existed!). We moved through the days remaining before Liddy's birth in a fog, never knowing that love and support was as close as reaching out through our computer screens.
2 years ago, on March 21st, 2011, everything changed for us. As I haltingly, hesitantly made my way through what seemed like thousands of posts, I cried a whole lot. And something more...those posts celebrating kids and adults who shared an extra chromosome with my Liddy showed me a whole new world existed that I never dreamed of. I opened my heart, my mind and my arms to a whole new family.
Over the last two years, I have grown to dearly love this worldwide family. There have been so many times that I don't know how I would have made it through that first year without them.We HAVE a support system, a loving family and truly amazing friends, yet somehow having friends who have walked in your shoes and have paved the way for you gives you courage and strength that you didn't know you had. The difference between those first bumbling steps into the Ds world to the confident strides we now walk with are in part largely due to these amazing ladies and gents who have shown us the way......

So who are we today? We are an average family who has faced what to some seem like extraordinary challenges. We are battle scarred, yet those scars add to our beauty, not detract away from it. We are stronger than we could have ever imagined we could be. We have faced the darkest days we could have dreamed of two and a half years ago and emerged into the light again, more confident, more faithful, more dedicated, more amazing than ever before. We have realized that the dreams we had for Liddy are still achievable, still within our grasp, and that she is perfectly capable of becoming whoever she sets her mind to be. We are more in love with our daughter, our sister, our grandchild, our niece, and our cousin than we could have ever believed was possible. We are inspired by her determination, her grace, and her inner beauty on a daily basis. This girl SHINES.

Who is Liddy? Well, that answer is a little more complicated. ;) She is a fanny shaking, finger snapping, car dancing angel. She is a sassy and sweet princess who never lets you forget for a single moment that SHE rules this household and has all of its occupants wrapped around her tiny crooked pinky. She is a little sister totally enraptured with her big brothers (and totally captivating to them as well). She is bubbly, and spunky, and stubborn. She is the very sunshine on a cloudy day. She is giggles and grins, pouty lips and crocodile tears. She is belly laughs and silliness. She is typical two year old attitude coupled with sweet baby loving. In essence, the light of our lives. :)
Happy World Down syndrome Day! Looking forward to a lifetime of celebrating the tiny package of dynamite we named Lydia Anne.