“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"

Tuesday, March 13, 2012

What I Would Tell The Me Of Before....


 Life as we knew it came crashing down around us on a crisp, sunshiny September day in 2010. As we were coming to grips with what seemed to us a catastrophic heart defect in our as yet unborn daughter, a simple phone call swept the rug out from under our already unsteady feet. With five little casually spoken words, "Your baby has Down Syndrome", the remainder of my hopes and dreams for little Lydia went up in flames and the ashes of the life I had planned scattered in the wind. Or so I thought.
As we gradually adjusted to this new development, more than anything my focus was on her heart. The Down Syndrome was almost a non-issue....something I couldn't wrap my head around because worry about the heart defect and consequently, open heart surgery, consumed me. Somehow, DS doesn't seem as big of a deal when faced with the words heart failure and the thought that in a very real sense, the baby that has consumed your every waking moment for months, the pretty little girl on the ultrasound screen, the miracle you prayed for for years, was at risk of dying.
However, Down Syndrome was something that could not be completely ignored. I wish that I could say that I never had a second's doubt about how amazing little Liddy would be, but if I tried to say that I would be a liar. I worried. Constantly. Would she walk and talk? Would she ever be independent? Would I love her as much once she was placed in my arms as I did while she was tucked safe and sound in my ever growing stomach?
 I truly thought I wasn't capable of being the mom of a child with "special needs". There were a thousand reasons that I believed that God had made a mistake in choosing me. I was too selfish, too impatient, too weak (and about a million more things). I prayed that someone somewhere had made a mistake. Instead of researching what it truly meant to have a child with Down Syndrome, I spent my time researching the percentage of wrong amnio test results.
Looking back, it was all ridiculous. Every single thought that went through my head, every worry that I held deep in the dark recesses of my broken heart. Most of them based on unconscious prejudices I never knew I had and outdated information handed to us which painted a very different picture than the reality.


There are a whole lot of things I wish I could tell the woman that I was before I became Liddy's mama. A whole lot of things I wish someone had told me. Almost a year of constant worry made me older, gave me a whole lot of grey hair, and made me shed bucketfuls of senseless tears.......
But that same year gave me great wisdom, changed who I am for the better, and taught me a whole lot about life.


 So here it is....a short list of the things I would tell that me if I could travel back in time.

1. Don't be afraid. Let go of the fear completely. Trust that God knows what He's doing and has no intentions of harming you.
2. Your baby WILL walk and talk. She WILL do everything your other kids do, albeit on her own time schedule. You can fully expect her to live on her own (in fact, she's going to be so independent at a year old that you'll have a hard time imagining her NOT living alone someday...)


3. Even though you think you'll have a hard time adjusting to her time schedule ( due to your natural born impatience) you will actually enjoy the slower pace. It keeps your baby a baby just a little bit longer and allows you to fully enjoy each and every accomplishment fully while waiting on the next.
4. There is nothing (nothing) in this world more uplifting than her smile. That toothless grin, which spreads across her entire face, bringing out dimples and putting a twinkle in her big blue eyes, has the ability to make the worst day better, dry tears, and make all right in the world.



5. You, the person who has always shied away from rocking the boat, the one who always avoids conflict, will find yourself standing up on a variety of issues..many of which you never knew existed or never had a solid conviction about in the days before. You will advocate. You will educate. You will have no problem standing toe to toe with anyone who dares to even attempt to put your girl in a box or slap her with a label.
6. You will realize that Down Syndrome doesn't define who your daughter is. Its just a part of her...the same as big blue eyes, soft baby hair, and a bubbly personality. She isn't a syndrome. She's your child.
7. You didn't do anything to deserve this. You aren't being punished for some long forgotten sin. You were chosen. You were blessed beyond words.


8. She is just like every other child. Unique. With her own goals, her own personality, her own thoughts. She will push you to the very brink of sanity (just like your other kids) on bad days. Yet, with a simple smile or a giggle, all the frustration will soar out the window and you will bend over backwards to do anything to keep that smile on her face.
9. Your big kids are going to adore her. And because of her, they will be more compassionate, more understanding, and champions for the underdog. Your son will bring you to tears with how proud he is of her several times in the first year alone, all while never seeing anything different about her.
10. Love doesn't count chromosomes.
11. Your family will become closer than ever before. The hardship of being separated will bring a new appreciation for the privilege of each others' company.
12. She will keep you laughing. She will make you bust your buttons with pride. She will light up your day with a simple smile.


13. She will teach you more about life, about God, and about yourself than you could ever hope in a thousand years to teach her. She will make you stronger than you ever believed and kinder than you ever hoped.
14. You will be joining a group of the most amazing parents that walk the face of the Earth. Every single one different, with different points of view. We may not always agree on anything other than one thing....we love our kids....and that alone puts us all on the same side, that of our children.
15. That which you fear most will one day become the one thing in your life which had the greatest impact. The fear gives way in the face of the best thing that ever happened to you.....


9 comments:

  1. Love this post! And I love, love, love the pictures of your daughter. That third picture - her lip! - precious.

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    1. Thanks Deborah. She has for sure got an impressive lower lip. You should see it when she's pouting. Absolutely heartbreaking. :)

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  2. I loved this too, it was so beautiful to read.

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    1. Thanks Jenny! I get it right every once in a while ;)

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  3. I think #7 is the one people need the most reminding about...
    lovely....

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    1. Amen, Holly. You and I are cut from the same cloth! :)

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  4. I am a Spanish 30 years old woman with a 28 years old sister with DS. I left Spain almost two years ago, and being apart from my sister is the hardest thing I have ever done in my life. She is the love of my life, I cannot not conceive my life without her. I will always be grateful to my parents for giving me the most precious treasure, a loving creature with amazing blue eyes who adores me and I adore her. Living with her has been an incredible journey and I hope I can continue to learn from her and have fun together, because I warn you!!!!!!they are so much fun!!!!!!!!!!!!!!!

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