Measuring growth

I think that probably the number one question I get asked is whether or not Mildred is doing whatever-the-developmental-thing-it-seems-like-would-be-age-appropriate-to-be-doing.

Is she walking yet?
I'm sure she's crawling all over the place!
She doesn't sit up yet?
When will she start crawling?
Is she talking?
What words does she say?
She's probably running all over and keeping you busy!

Now let me start by saying: I get it.
I find myself (still) asking these questions to mamas that I know, and even to some in the Down Syndrome community. I think it is important to acknowledge first that, in my own personal (and very limited) experience, these questions come from a place of absolute total love and caring. We ask these questions because what we really want to say is:

How is he/she doing? What is going on in their little world? Your child is beautiful and I want to share in your joy.

We tend to use milestones or other markers as measurements of health, happiness, and sometimes even projected success. This seems no big deal to the parent who's child is meeting all those markers within the "normal" range... but when delays begin to occur... what does that mean? Is my child ill? Does my child have delays? Do delays mean future struggles in life? If my child doesn't meet these rubrics, will he/she ever have a successful, fulfilling life?

Down Syndrome has helped me to try to separate things and accomplishment from intrinsic value and worth. If I'm completely honest, this is super challenging for me. I have spent my own life trying to be perfect, and do all the things and do them well, all while getting people to like me. Down Syndrome has shown me how ability/accomplishment oriented I still am in my heart of hearts. I have had to confront my "doing" instinct which wants to crowd out my "being." As the lyrics to one of my favorite songs go: "I'm Mary and I'm Martha all at the same time. I'm sitting at His feet and yet I'm dying to be recognized." ("Lament" -Audrey Assad)

Mildred helps me to just love, and not measure.
I was talking to another mom of a child with Down Syndrome after one of my posts last week and reflecting on this experience of comparison. Comparison is not just to other children and what they are accomplishing, but it is also to the rubric of "normal" development. And I am aware that this is not a phenomenon that is specific to DS. This is a parenting thing, not a Down Syndrome thing - comparison. I think the difference is that there is more weight behind the question of when these things will happen when you're a parent with Down Syndrome. It occurred to me in that conversation with another mom why that is...

Underlying everything, in the back of the mind of a parent of a child with Down syndrome, is the question: Will my child ever be able to do that?

This is important. It's scary to admit that I do have an underlying fear of how capable my daughter will be! Does that make me a bad mom? No. Does that mean I have failed Mildred because I have those flickers of doubt or concern? No. I think it comes from a deeply rooted societal question about the capability of people with Down syndrome. What I mean is this: as a society, we still don't KNOW that people with Down syndrome ARE CAPABLE. There is still a question mark hanging in the back of our minds as to whether or not that milestone is going to be achieved.

We have to make this stop. We have to change the questions in the back of our minds.
If I had known then what I know now...
there would be NO question in the back of my mind.

M holding my hand while we walk

So this is what I have to say for any parent of a child with Down syndrome (or facing a diagnosis of Ds), just as my brother-in-law so poignantly said to me:

Raising a child with Down syndrome is just like raising a typical child. They may not get to all the phases at the same time as other kids, but they
WILL get there.

When I'm at my best, I can see that clearly and confidently, and I have no fear. Mildred CAN. She has shown me that. And sometimes it looks different, and sometimes we have to work and work and work for things that come easily to others, but that doesn't mean she won't do it, because she WILL.

I have more to say, but Millie is awake, so I must go. :)

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.

Accepting the Diagnosis, and Going to Holland

Many people ask if we knew that Mildred would have Down syndrome before we had her. I guess the answer to that is: Yes and No and No. You can read about our first ultrasound indicator here, and about our genetic counseling and high-risk ultrasound experience here and here. Yes, we knew it was a possibility. No, we did not do the amniocentesis to confirm/deny a diagnosis. No, there were no concrete indicators on the high risk ultrasound, and the OB told us we had a healthy baby (more on that in another post). 

Here's the raw, vulnerable, (ugly) truth:
I didn't think my baby had Down syndrome. There was no part of me that expected a diagnosis.

I was being honest in my post when I said that we would be blessed beyond measure to have a baby with Down syndrome like my nephew, Timothy. I genuinely believed that! However I also genuinely believed (though I'm not sure I admitted it out loud to anyone), that it was statistically improbable to have two children with Down Syndrome within the same extended family. And I think part of our humanity (or maybe just my own sinfulness), began to operate on this "it's great for you, but it isn't going to happen to me" mentality. On the one hand, I loved every aspect of my nephew, and believed in his capability and was not disappointed in his diagnosis in the least, but on the other hand, I wanted MY baby to be perfect. That's the ugly. That is the part that I could just pretend that I never felt, and act like I'm the perfect Mama who never faltered in acceptance, but that isn't reality and I don't think it does anyone any good to pretend like everything is roses. It just wasn't what I had planned for my life, or for my child's life. 

That isn't the end of the story though, and I want to make sure any moms or dads who are facing a diagnosis and feeling this way know that. It doesn't stop here, with disappointment, confusion, fear, whatever it is you are feeling. It's not worse, just different. This poem, which is a popular one that circulates in the DS community, articulates the experience beautifully.

Welcome to Holland

BY EMILY PERL KINGSLEY

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

***

©1987 BY EMILY PERL KINGSLEY.
ALL RIGHTS RESERVED.

So you see,

It turns out... Holland is pretty great, and I wouldn't trade my Tour Guide for anything. :)

Feel free to send/comment any questions you may have, or things you are curious about and I'll try to address them this month!

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