I hope this finds you in a place where you are ready to recieve what I am writting. I am talking to parents who discover that their baby will require heart surgery and may or may not have down syndrome. I want to tell anyone who is facing the same road we are now traveling...IT will be ok...it doesn't feel like it right now...but it will be ok...
I have the need to share the way I was feeling in September 2010 when I found out that my unborn baby was going to be born with a heart defect that will require surgery and 50% of babies born with this heart condition also had down syndrome. I was supposed to be going to find out that my baby was a girl and then go shopping for cutsie little pink outfits and clothes. I was unprepared for this diagnosis, something that I had not imagined would ever happen to me. This stuff happens to other people, not me. I spent the next few weeks crying. Crying for myself, crying for the life of my baby, crying for her future, crying because I didn't know what this diagnosis really meant or what it really would look like, or how others would treat me and my baby, crying because there was nothing I could do to "fix" it, and fearing that I would not see my baby as beautiful. I struggled with knowing and not knowing. I prayed for a miracle healing. I prayed for God to just let me have her. I feared she would not make it through delivery and then if she did I feared she wouldn't make it through surgery. I was ashamed of some of my thoughts and worries. I was ashamed of some of my feelings. I felt soo alone, even though I had a support network beyond explanation. I felt like no one understood what I was going through. No one really understood my dreams of the "perfect" baby were shattered.
Her delivery brought mixed feelings, excitement for the arrival of my baby girl, fear that I would finally have to face the reality of whatever happens once she was born (would she live/die, would she have down syndrome or not) and guilt for not feeling anything but joy. I cried though the delivery...not because it hurt, but because I was scared. Scared of facing reality. When she was born and I held her in my arms and saw she was alive, she was moving, and breathing, and ALIVE...I held her closer and longer. I didn't want her to go away. I wanted her right here with me. I wanted to protect her. I wanted everyone to love her. At this point we didn't know if she had down syndrome, but that was not the major concern. What kept me up at night worrying was that soon she would have to go through a massive open heart surgery. Someone would cut her open on purpose to fix her heart. I struggled with this one all the way through till she was 5 months and old enough to have the surgery. For now, I had her in my arms and I wanted to do everything I could to make sure she survived the surgery. We added her to EVERY prayer chain you can imagine. We started prayer chains on facebook, we added her to prayer chains on the web, and through word of mouth. There were soo many people praying for my sweet Ellie Mae.
Jumping ahead...Ellie's surgery...brought soo many fears and MANY more tears. My biggest fear through all of this was loosing her. Everything else we could work through. I couldn't handle loosing her. I repeated OVER and OVER...please don't take her God...please let me have her...please let that be your will. It was his will. We spent 11 days in the hospital and she did wonderfully. We have our beautiful baby girl and she will grow up and grow old and we will be fine. The diagnosis is scary because you do not know what it really means, or what it looks like. No parent wants their child to have to have a surgery, a disability, or both. your feelings are ok, it is normal to have these feelings. I wouldn't change anything about my beautiful baby girl. My little Ellie is a blessing to our family She has brought us closer together and closer to God. I still do not know what raising her will look like, but I don't know what raising my other two children will look like either No one is guaranteed anything. All I know is I will love her and my other two children and do the best I can for them. When I look at my little Ellie Mae, I do not see a baby with down syndrome, I see my perfect miracle from God. Her smile is beyond words, her laughter is enough to break you into tears. I never imagined loving a human being as much as we all love her. Please know once, you get past the initial shock of everything, you will be happy beyond words. You will have a new outlook on life and a peace beyond words. You will be ok, your baby will be ok, God will bless you as he blessed my family...with our extra chromosome....My prayers are with you for strength and peace.
Here is a story that explains the emotions you feel...I did not write it....but I clung to it the first few weeks...
WELCOME TO HOLLAND!!!
WELCOME TO HOLLAND
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.
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
