It's Saturday morning, 8 a.m. and I just woke from a horrible dream.
I dreamt you had Down Syndrome.
I was so sad, just wanting so much to change everything and have a baby with no special needs, and to feel like the part of the nightmare that was my pregnancy- the fear, the bad ultrasounds, the markers, the doctors warnings, the low movement of you in my tummy...was over. And in my dream I looked around me at all the "perfect" babies, and women having them, and young moms who didn't even want to be moms, and I thought "It's not fair!!" I cried and cried in my dream, tears of loss, and disappointment, and frustration, and GRIEF. I cried so hard I woke myself up.
And Lily, I'm still here.
I'm still in the dream, and I don't care how many people try to encourage me with words of hope, or look-on-the-bright-side, or even silly cliches. It hurts.
I'm just going to be painfully honest, because that's what writing to you is all about. It's not for anyone else, although I'm happy that people might read my letters to you and see that we're really okay, and know how much we love, love, love you. But writing to you has always been my therapy, because I have a tendency to bottle up my stress and anxieties just to prove I'm a strong person..and it ends up hurting more. So, at the risk of soliciting unwanted advice and words of wisdom from well-meaning loved ones...who've never been in this particular dream...I just want to say it hurts.
Because you have Down Syndrome, Lily.
I haven't said it here on purpose all week. Not because I'm ashamed, or love you any less, or because I'm embarrassed or don't want to face the truth. I just wanted a week to dwell on all the beautiful things that you ARE.
You are so perfect, you act like all my other babies, and you look like them all too. You have dreams in your sleep, happy dreams, where you laugh or smile, and I wonder what you could possibly be dreaming about at this age. You have bad dreams, where your bottom little lip turns down into the cutest pout. and you frown and look like you're about to cry, and I wonder what kind of dreams a newborn could have that would elicit those expressions.
You have fussy times (few) and sleepy content times, you have times when your eyes are wide open and you quietly look around at all of us in wonder. You startle if we lay you down too fast, you curl your tiny fingers around our big ones, you root around and open your mouth so widely, looking for food when you're hungry.
So many "normal" things you do, that it's hard to believe you have Down Syndrome. If I didn't know, and I looked at you from every angle...I wouldn't know. In fact, all of your siblings keep asking me- are we sure, Mama? Because you look so normal to us.
But then there will be reminders. A conversation with a doctor or specialist who says something that brings reality, like "babies with downs tend to..." or "Because she has downs, when she's older you'll want to...."
Or I'll have a bad dream... and cry so hard I wake myself up crying...
And then I keep crying.
I am just being honest, dearest Lily.
I'm grieving too.
I'm grieving because...because of a lot of things...Grieving because you'll never get married. I know, people will say- but you have two other daughters who will marry. But YOU won't. You won't have heart to heart Mommy/daughter conversations, where you tell me just how much you're hurting, or what boy you like and why, and where we analyze what so-and-so said and how it made you feel. You won't read a favorite book of Mommy's, like Jane Eyre, and tell me how much it meant to you, and what you got out of it.
You might even start to look different than us..
So after I cried, cries so hard I'm surprised I didn't wake everyone up, I realised you and Daddy weren't in the bedroom with me...so I came out to the family room and saw you sleeping in his arms, while he slept too...
And a flood of emotions filled me, because I realized there are things we are going to experience, and are experiencing...that we've never experienced before.
Because of your low muscle tone, combined with being premature, you have had a hard time nursing for more than a few minutes. We need you to gain weight so you will wake up more and be able to develop muscle tone, and be able to learn how to nurse. So we have been feeding you Mama's milk in bottles, and Daddy has been especially good at getting you to take your bottle. Since we've been home, you've woken up on your own for feeding time. It has been so wonderful to see you act hungry, and polish off your 45 mils of milk on your own. But in the hospital, Daddy was the one who was able to get you to take your bottle most of the time, even in your sleep.
Daddy did the 6 o'clock feedings the past two mornings so Mommy could get some much-needed sleep.
And that simple little scene that I walked in on- Daddy asleep with you in his arms after feeding you- made me realize, we're going to be okay.
You'll never get married....but you'll always be Daddy's girl. It breaks his heart that some day Mackenzie and Abigail are going to love another man as much as they love him...and he's going to "give them away". But he'll never have to give YOU away, Lily.
Right after you were born the doctors whisked you over to a table by my bedside to look at you, and give you oxygen. You were turning blue and staying blue without help. Daddy was right there, watching your every move, and telling me what was happening. When it was decided you would have to go to the nursery to be worked on some more, Daddy went with you while Mommy stayed in bed, waiting for the effects of the epidural to wear off. Daddy was with you two hours, holding your hands...because you wouldn't let the doctors put anything on your face to give you oxygen if he didn't hold your hands. You fought so hard, yanking cords out, trying to keep all the equipment away from your tiny face. Daddy talked to you, and consoled you, and helped the nurse finally get tubes in your nose, and taped to your cheeks, so you couldn't pull them out again.
When we found out you had to be transported to OHSU after you were born, the doctors said one of us could go with you. Mama's doctor did not want me to go- because I still needed to recover from having you. I would not be taken care of at the hospital in Portland, only you would be a patient there. Right away Daddy said he was going- and he was going to make sure he rode in the ambulance all the way with you, and watched every step of everything the doctors would be doing to you when you got there.
All through your first night at Doernbechers, Daddy was there. He watched as the doctors performed the transfusion/exchange procedure, allowing your blood to thin and flow more freely. He even took pictures so later Mama could see what they had to do to you. He held you and talked to you, and kissed you, and took care of you when Mama couldn't.
And while he was there, one of the male nurses named Larry, introduced himself. Larry has a son with Down Syndrome, and I think God placed him there that night to talk to Daddy.
I've told you before, Lily-- Daddy is the eternal optimist. Always looking at the bright side of things, never worried very much about what the future might hold. He takes things as they come, doesn't anticipate disaster or tragedy. He just has this philosophy- we'll cross that bridge when we come to it.
So I don't know what was going through his mind, as he was crossing that bridge that night after your birth. I'm sure there was a huge range of emotions he was feeling- pride, love, awe, joy...and grief.
Larry talked to Daddy about his son, and what a joy and blessing he is, and how he has changed their lives and enriched them so greatly. He told Daddy we are going to so enjoy you, and even through all the challenges we'll face, we will still love you just as much, if not more, than our other children.
A few days after we had been in the NICU I was looking through the stacks of information we were given. I found a printed out piece of paper with the title Welcome to Holland at the top. On the back of the print-out was a hand-written letter...
Sam and Patti,
I wanted to give you a copy of this. It was and is helpful for me and Janelle. I know you will get a ton of advice whether you ask for it or not. Please excuse me giving my 2 cents...
I just thought I would encourage you to just enjoy Lily. I know there are plenty of questions about medical and practical things, and I think you will get the important questions answered. I just think that one of the most helpful things I have seen/learned from my wife Janelle, was to just enjoy our son. He/Lily are a gift from God just like our other kids. I think the more I just enjoy my son, the more the rest of the things seem to fall in place.
Hope to see you again,
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
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 guide books and make your 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 that 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 guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never 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 that 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 Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I'm staying in Holland, Lily. I'm going to have my moments of longing for Italy. Every now and then there's going to be a reminder of the dreams I had for you, and I'm going to allow myself to mourn the loss of those dreams. But Holland is a beautiful place, a place I've never been before...and I'm not going to miss out on all the beauty because I'm pining away for Italy.
Your Mama oxox