“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"

Saturday, October 1, 2011

What I Want You To Know About Life With Down's Syndrome

There are so many in our world who believe that a child born with Down's Syndrome is a burden on their families, on their peers, and on society in general. They call our children names, vehemently argue in support of aborting our babies, simply because of that little something extra that makes our beautiful children, simply put, who they are. I even read a comment where someone called our kids.... my beautiful daughter included......defective babies.
Well, in honor of Down's Syndrome Awareness month, I'm just gonna tell it to you, the doubters, the haters, the misinformed and the uneducated. Straight as an arrow. No bullcrap.

I didn't choose this. I had every right to expect something different. I expected what I had always had before, a healthy baby. It's truly an eye opener about how lucky you are to have had perfect, healthy, chubby babies who have grown exactly as they should and developed right on schedule or early when faced with one who is sick.

However, my baby girl was a miracle from the very beginning. It wasn't even supposed to be possible for me to get pregnant to begin with. After weeks of a threatened miscarriage, I literally begged my doctor to do whatever he had to to save her. I willingly took Herculean doses of hormones every single day for six whole weeks....me, who can never remember what she had for lunch, let alone to take medicine twice a day every day. It made me feel like I had been run over by a Mack truck. I couldn't concentrate on a darn thing and I am positive that I drove my family insane. But I FOUGHT tooth and nail for this baby. I would have died for her even then, when she was barely a bean on a tiny screen. I saw her heart beating. I was in love from that moment on.

So, even when the triple screening came back with a higher risk than was normal for someone my age for both Trisomy 21, otherwise known as Down's Syndrome, and Trisomy 18, which is always fatal shortly after birth, we steadfastly refused an amnio. Even a 1 in 500 chance of miscarriage was too high a risk, and we had already decided to stay the course no matter what. Our child. Our miracle.
She proved to me again and again that she was strong. That she was smart. That she was fighting just as much as I was. By the time we saw her face for the first time, I was already completely enamored with everything about her. She already had personality.....spunk and sass and pure joy. She danced. She played. She revolted against being poked, being prodded, or being measured. She sucked her thumb (sometimes both of them!). And actually looking at her face; her eyes, her facial expressions, her chubby cheeks; and watching her on screen antics, knowing that she was my princess, my chance to have a baby daughter in my life, my heart expanded more than I ever thought that it could.

Even when I thought my world was crumbling at my feet, that love never wavered. That determination to see this through, to deal with whatever we had to just simply to have her here with us. Life became a steady stream of appointments, ultrasounds, non-stress tests, and echocardiograms, along with almost continual bad news and a litany of new fears and worries. Tears were a regular occurance at any time or place. And still, I loved her with all of my being.
I gladly trekked from doctor to doctor, tracked weight gain and growth, and made plans to deliver in a city almost 2 hours away from our other kids simply because I loved her too much not to.
I learned new scary terms, like atrioventricular canal defect and recussitation island. They struck fear in my heart, the very sound of them, in relation to my tiny baby. Open heart surgery a sure bet in the future broke my heart in two.
We truly had no idea what we would be facing when she was born. We were told to expect a very sick, very tiny baby.
We were given a 7 lb pink princess. Perfect to us in every single way, even with her broken heart.

I endured 3 1/2 days of induced labor, two units of blood, and a manual D&C. I sat in that old recliner in the NICU so much for three weeks that it probably still had the indent of my rear when I left. I got up every morning, packed a bag with drinks, snacks, pretty clothes for her, and what seemed like gallons of milk and drove almost 2 hours to her bedside (trying to get there before morning rounds) to sit there holding her all day, until it was time for me to drag myself away from her and drive 2 hours home where I had other kids and other responsibilites waiting. I learned to talk to doctors, to stand up for her if necessary, to know her every breath. Was it easy? Heck no. Did it matter if I was there every single second of each day? Maybe not. But it mattered a whole lot to me. Because I loved her.
I learned to place a nasal-gastoral feeding tube. I learned to mix special formula. I made batch after batch. I learned that she could eat from a bottle, if we fed her formula instead of breast milk. I learned to carry a monitor that was constantly going off for idiotic reasons with me everywhere I went. I learned to blindly place probes back on in the middle of the night. I learned infant CPR, which I was absolutely sure that if I ever needed it, I wouldn't remember anyway. I learned to coordinate the endless stream of phone calls ( ordering supplies, scheduling doctors appointments, dealing with insurance companies, etc.) around nap times. No second was wasted. I have handed my tiny girl to a surgeon, fighting tears of panic and waves of fear. I have spent hours in surgical waiting rooms, jumping at every nurse who passes, praying my heart out. I have watched my vibrant, spunky girl lay in a bed, not moving, not smiling, not laughing, as she struggled to recover from open heart surgery. I have watched her struggle for every breath, knowing that I would lay down my own life for her to just live. I have had thousands of conversations with God; some when I was thankful, some when I was screaming at Him in anger and frustration, and some where I couldn't even form words to encompass the scope of my fears. For her. For a life without her in it.
I fought like Hell for this "defective baby" and I spent so much time worrying about whether I would be a good mother to her, whether I had the faith and strength that I needed to get through, whether today would be the day that she got sick or something catastrophic happened, whether she would ever lead a normal life. But, looking at her face to face, my doubts were erased.
I am good mother to her. Probably a better one to her than I was to Caleb. My strength and my faith have grown and I have made it through 9 months of hospitals and doctors and fear. I faced losing her and still fought to keep her here. And I have no doubt that she will lead, while not what some would consider a  normal life, an extraordinary life just the same. I stand firm in my belief that she will change the world. Just as she has changed mine.
Our family is better because of her presence.
Don't pity us. Our choices were the right ones. We don't deserve your pity. We deserve your admiration. Not because we are doing what a growing number of others refuse to. Not because we want to be martyrs. Admire us because we are the lucky ones. We are blessed beyond what the scope of words can even express.
Even amid the extra ugly facts that living with Down's Syndrome requires, the beautiful extras that additional chromosome adds are well worth the rest. To watch the baby with such a horrible prognosis starting out overcome every obstacle placed in her path, with a smile on her face and a giggle on her lips, makes me truly believe that we all have a lot to learn about what is really important in this life.

Down's Syndrome isn't a curse. It doesn't destine our kids to a life filled with less. It gives them a life with more.

I love my daughter. Not despite Down's Syndrome or because of it. I love her because she is herself. And she wouldn't be her without it.........


  1. Wow, beautiful, wonderful, amazing post, Heidi!! This definitely is what spreading awareness is all about. Loving our children, wanting a better world for them, showing the world how perfect they are.

  2. Again, excellent post. You have a way with words and lovely photos of little Liddy Bug.

  3. Thank you for this post.

    I'm a girl who had a cleft lip and palate; I've always felt mildly guilty at the expenses my parents go through and the amount they give up for me. Seeing your love for your beautiful daughter makes me feel better about what I put my parents through.

    Liddy is one of the prettiest babies I have ever seen. Make sure she knows it. There will always be people who judge and criticize, but that's just because they don't know what they're missing.

  4. Wow is right! Amazing post Heidi! Its beautiful to hear how badly this little girl was wanted right from day one. She is so blessed to have you as her Mom :)

  5. What a beautiful post that I know captured the thoughts and feelings of many parents, myself included. I couldn't have said it nearly as well or as eloquently, so thank you! Your daughter is beautiful and you are absolutely right, our families are better because of our children with Down syndrome.


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