I met Annie through my blog last year. I started writing her on email, followed her blog (The House That Jade Built), and then probably stalked her on Facebook...That sounds about right. :) I wanted to make sure that she didn't get bogged down with the fear that came from the diagnosis....I was blessedly pleased to watch her face down the looming new life with prayer, joy, and hope.
When I asked her to write a guest post for this month, I was thrilled when she said yes! And it was beautiful to read her heart, offered to a new parent.
I am writing you this letter today to give you hope.
First a little of my background, on October 4th, 2010 I was pregnant with our third child. A child that we were so excited about & decided not to discover the sex so we could be surprised at birth. And surprised we were. On that day we had a level II ultrasound and a somber doctor looked us in the eyes and told us our baby had several soft markers for Down Syndrome, and a birth defect that would most likely require open heart surgery. We later found out that yes our baby girl would absolutely need open heart surgery.
It's normal to walk out of those appointments shattered. We were exactly that. I grieved a child I thought I had lost. My dreams of her future were gone. They popped all around me, bubbles bursting, plans unfolding. From that point forward I walked by faith. I researched & made friends in the DS community. I prayed constantly. I tried to pray away Down Syndrome, but more frightening her AV Canal. For the most part I was strong, but I had nights where I would break down. It was hard. Very hard.
On February 10th, I was finally induced at a major hospital to meet my daughter. I was so excited and scared to death that her heart would be worse than they expected at birth.
She finally arrived a much chubbier girl than they had anticipated. Her heart was stable, she nursed like a pro, and she was stunningly beautiful. We left that hospital 4 days later taking home our sweet daughter and expecting heart failure within weeks.
The doctors were right. She faced heart failure, slow weight gain, countless doctor visits, and medication that I charted to keep track of. At a day shy of 4 months of age, Ollie Faith was handed off for open heart surgery. I kissed her cheeks and told her to be brave and that Jesus would be holding her hand. It was the hardest day my husband & I have ever faced, but we did it because she needed it.
She was a champ. Five days post open heart surgery she came home on merely Tylenol sporting a brand new badge of courage.
It's been another 4 months and she is finally gaining weight. We have less and less doctor appointments to attend, and more and more in home therapy appointments to get her gross and fine motor skills going. Ollie Faith is the essence of the word amazing.
Last October Ollie's diagnosis broke us. We thought it was the worst news we had ever received. This October she is in our arms and quite clearly one of the most beautiful gifts we have ever experienced. She is what society views as imperfect, but in our eyes she is perfectly perfect!
I never imagined that I would become a mother to a child with special needs or that I would face a major surgery one of my children, but I am just that now. I honestly wouldn't have it any other way. Ollie Faith has rebuilt my broken heart into this beautiful masterpiece. She has filled it with faith, patience, strength, determination, and love. She has blessed her older siblings & her aunts, uncles, cousins, and grandparents beyond measure. Our community has prayed constantly for her and in turn she has educated a small town of 5,000 on the beauty of that one extra chromosome.
I look her in the eyes every day and she knows I am her Mom. I can see the love in her eyes. She holds so much joy in her smile, and I know she is happy and I know she feels loved.
So if you are a new parent and just received this diagnosis. I know it feels like the end of the world to you, but I promise this bundle of joy will be an amazing gift! This journey doesn't go without bumps in the road, but parenting typical children doesn't promise a smooth and straight course as well! I promise you that once the grief is gone and you have patched up your heart you will realize that this child is exactly what you needed in your life, and you will be blessed time and time again with the surprise of an "imperfectly" perfect child.