Our Scarlet Letter(s)

It struck me last week as I walked down the aisle of the grocery store, Mildred sitting in the cart in front of me watching all the people and all the things (per usual) that so much has changed. I have changed so much. We've come so far in just 16 months, this Millie girl and I.

I vividly remembered walking the aisles of my favorite store (which shall remain nameless, but its logo is a big red target), overcome with a paralyzing uncertainty, wondering what everyone saw when they looked at my baby. I, of course, was infatuated with my newborn love (because what Mama isn't? But also:

yeah. that's what I thought. ;)

I felt like there was this enormous question mark hovering above our heads in true Hester Prynne fashion. I felt the eyes of every new adorer as they seemed to search her closely for answers: "Does she?...Doesn't she...?" I was defensive against an attack that I never actually encountered, but felt that somehow would come. I felt that the whole world could see a diagnosis that I had missed, and I still couldn't see it. I also could feel the weight of people's questions as they fought to keep them inside, unsure of how to ask them. 

I remember feeling desperate for people to just tell me what they were thinking, or wondering, but also being terrified of the answers, or lack thereof - feeling like I owed the world an explanation, but resisting feeling like I was putting a disclaimer on my own daughter.

It is interesting to look back now at that time of confusion, and pain, and postpartum hormones (so many hormones!) and see it with different eyes. What was I so afraid of? So much. I was afraid of so much.

 What will her life look like? Will she be a vegetable? Will she have a fulfilling life? Will she ever go to college, get married, have kids? Will she be able to be independent? Will we always be outsiders now? Is everything going to always be hard and different? Will she still be beautiful? Will people make fun of her? What will her ability level be? What is it going to be like to have a special needs child? 

Here is what I realize now: those questions aren't all that dissimilar from first time (or new again) parents. The difference is how much we take for granted as being a given. The hard truth is that nothing in this life is a given (save for death and taxes, as my Papa Joe would say). Eating, breathing, crawling, walking, reading, speaking, interacting, etc., they are not guarantees. Each of those things is an accomplishment in and of itself, just ask any special needs parents and they'll tell you how amazing each of those steps are. And we so easily forget that health is not a given for any one of us, Down syndrome or not.

Down syndrome has given me the gift of perspective.
Because of Down syndrome, we get to work really hard, and truly celebrate each milestone with gratitude.

So...
when you're in the store and you run into the newly postpartum mom or dad, what do you tell them?

"Congratulations. He/She is beautiful! What a gift!"

because no matter what, they really truly are.

October is Down Syndrome Awareness Month!

Happy October 1st! 

I have always LOVED the Fall, and October is the beginning of the holiday season (aka the BEST time of the year!), but October now has extra special meaning to me (us) because I get to celebrate the GIFT of Down Syndrome in our life! I'm hoping to try to get up a post a day discussing something related to Down Syndrome: struggles, blessings, myths, truths, hopes for the future, anecdotes, and of course... lots of cute pictures!

It would be remiss of me to forget about wishing you a blessed feast of St. Therese of the Child Jesus, also know as St. Therese of Lisieux, and St. Theresa the Little Flower! If you don't know her yet, here's a brief bio:

"Therese Martin was the last of nine children born to Louis and Zelie Martin on January 2, 1873, in Alencon, France. However, only five of these children lived to reach adulthood. Precocious and sensitive, Therese needed much attention. Her mother died when she was 4 years old. As a result, her father and sisters babied young Therese. She had a spirit that wanted everything."  (You can read more about her here if you're interested.) 

Precocious. Sensitive. Had a spirit that wanted everything.

This brief description makes me smile because it could be about Mildred! 

St. Therese focused on the Little Way - using every day simple acts of love and sacrifice and offering it for love of God and sanctification of herself and the world. She wanted to bring love to everyone she met, and committed to spend her time in Heaven doing good (spreading love) on earth. 
I have to believe that St. Therese, in her simple profundity, passion, and love for the Lord and those around her, is pleased to share her feast day with the launching of Down Syndrome awareness month. I see the beauty of St. Therese in the simple profundity, passion, courage, and love that is so innate in people with Down Syndrome. A purity of heart that is so specific, and beautiful, a heart knit together with purpose.



St. Therese, pray for us! Help us to love more like you do, and help us to have the loving heart, and joyful spirit of our loved ones with Down Syndrome.

An Open Letter to my Daughter on Her 6th Day of Life

My little Pearl,

It has been just 6 days since you challenged me to be the bravest I have ever been. At 39 weeks along in my pregnancy, your amniotic fluid was low and they sent me for an induction. After 24 hours, 2 doses of Cytotec, 2 failed epidural attempts, 1 successful epidural attempt, a dose of Pitocin, and an emergency c-section, you came into the world crying. 

It's true what those poetic mamas always say. The sound of your voice (though it was a strange sound because you had fluid in your lungs) was the most beautiful thing I had ever heard, and it awakened something deep inside of me: a love for you, my first child, my newborn daughter, my Mildred Pearl. 

Your doctor began your newborn screenings after they invited your daddy to cut your umbilical cord, but all I could do was wonder what you looked like, how big you were, if you had that full head of hair that I had ordered... Your daddy returned to my side while they cleaned you up and I could hear the nurse telling him that you were struggling to keep your oxygen levels where they should be (you were hovering around 80%) and that they were concerned that you might have an infection. They admitted you to the NICU for observation and care, and your doctor added that you were showing soft markers for Down Syndrome--the shape of your eyes and the thrusting of your tongue--and she ordered a blood test to confirm. 

I caught a glimpse of you as the doctor and nurses rolled you away to the NICU. Your daddy asked them to hold you up so I could see you, six feet from where I was laying while they finished surgery. I cried at the sight of you. You looked just like newborn me. You were my daughter and I loved you instantly.

I didn't see you again until almost two hours later when they wheeled my bed next to yours on my way to a post-partum room. When I saw you, they had your arms and legs strapped down because you were so squirmy and strong, and you had tubes attached all over you. Even in that condition you were beautiful, my new baby. We had to spend the night apart from you, though. Not getting to hold you, was awful. I don't think I will ever forget when they placed you on my chest for our first skin-to-skin time almost 24 hours after you were born. It was heaven. It still is. You, my Millie Pearl, will always be my little glimpse of heaven. 

Over the next several days as you were released from the NICU into our care, your daddy and I soaked up every moment with you and enjoyed getting to know you, discovering all of your little quirks and peculiarities. I spent many of those hours staring at you, trying to see the Down Syndrome that your doctor saw, but I couldn't. Yes, your eyes are almond shaped, but so are your daddy's. Yes, your nose is tiny, but my nose is small too--and you're a tiny baby! Yes, you thrust your tongue, but so did I, and your grandma, and your great grandma too. They're wrong, I thought. Those were all just family traits.

Yesterday, when we took you to your first check up, the doctor told us that your genetic test had come back positive for Down Syndrome. I fought back tears, (mostly from "baby blues", but also, partially, from shock). He gave us an overview of the upcoming appointments that would make sure you were healthy (you are), and left us alone to pack up your things. I cried. I held you close to me. I hugged you. I kissed you. And I cried. 

I want you to know why I cried, sweet girl. I want you to know that I am not disappointed in you. I cried for you. I grieved the loss of things that you might not have in life, and all the hurt or frustration you might experience along the way. I mourned the way some people might react to you, or treat you when you're older. I ached for all the struggles you might have to endure because of your condition. My mama heart wants so badly to protect you, to save you from all of that, and I can't. 

But in my sadness, the Lord whispered a beautiful truth: you are created exactly how you were meant to be. You were knit in my womb before I even knew you were there, and you have had that extra little chromosome from the time your DNA was formed. This is not something that just happened to you on your fifth day of life when we found out--this is an integral part of your creation that we are just getting to know (along with that cute little pouty face you make in your dreamy sleep). 

Your dad and I want you to know some very important things, Little One. We want you to know that you are capable of anything you commit yourself to--just like everyone else. We will help you in every way that we can, to develop your strengths (and strengthen your weaknesses) so that you can accomplish every single one of your aspirations. We want you to know that, because we love you, we will challenge you even when it feels impossible, because it isn't impossible, and you ARE capable. 

We also want you to know how beautiful you are. I have realized that part of the reason I don't see Down Syndrome features when I look at you, is because I just see my daughter, with a tiny little button nose, small, intricate ears, a tongue thrust just like her mama, and eyes, a round face, hands and feet just like her papa. You are more like us than you may (someday) like to admit. I want you to know, that people have told us over and over and over again what a pretty little baby you are. And they're absolutely right! Like a beautiful little doll. Our little love.

The other reason that I don't see Down Syndrome when I look at you, my Millie Pearl, is that Down Syndrome is something that you have, but it is not who you are. You are our daughter, Mildred Pearl, and we love you with a love that is unlike anything we have known before. Many people have told us how lucky you are to have parents like us, and how, "God could not have picked more perfect parents" for you, but I think they're wrong. We know we're the lucky ones. And we are so grateful for all of the things you are already teaching us about love, faith, and joy. Keep teaching us, our pure little soul, and help us to be more like you. 

All our love,

Your Mommy & Daddy