Down Syndrome

If you are a pregnant Mom and you heard these words, or you just delivered your baby & the doctor uttered these words your world has probably just shattered around you. You want to run as fast as you can backwards, back toward the time where Down Syndrome didn't exist in any way, shape or form, when it came to your baby.

Last year on this very day my life fell apart around me. Our doctor told us so casually that Ollie Faith had multiple markers for Down Syndrome like it was a for sure thing. The words rolled off her tongue so easily. How we sat through an entire ultrasound beforehand with big smiles looking over our precious baby girl now blows my mind. We had no idea when they were looking at her hands that they were racking up a list of "markers" to confirm a diagnosis. We just saw a beautiful hand, we were so excited.
As she shared the "bad" news, I sat in that chair with my pregnancy hormones in full swing, numb, but in control. I wasn't going to let her see me cry.

The moment after she said Down Syndrome, she talked about the heart defect & open heart surgery. To me that was worse. And she said we had to wait 3 weeks to do a full ultrasound of the heart to know what we were truly up against. 3 more weeks of agony, trying to figure out what heart defect our baby would have & what that would mean...I researched too much.

Earlier that morning, on the way to our appointment we thought we were going to have an awesome ultrasound and a date day. We had it all planned out. A much needed date day - how perfect - that didn't happen. We had luckily discussed that if something was wrong, we were not doing an amnio. We weren't risking a miscarriage.  We wanted this baby with all our hearts. We were both ok with Down Syndrome, but didn't think it was really going to come up. Thankfully we had that talk ahead of time & knew our decision when it became our reality.

Jade & I left the clinic, I kept it together until we reached the van & then I bawled. All these dreams for this perfect baby were gone. Everything I wanted for her, gone. I grieved the child I thought I lost.

That night we went home, and decided the best thing to do was write this blog. We live in a small community & we wanted everyone to have the facts from our mouths, not spread around town like hot gossip that would immediately be twisted around into some form of the truth. Unfortunately even with the blog, some people had started a rumor that Ollie wouldn't survive my pregnancy - I wanted to round house kick them in the head. No that's not nice, but people infuriated me & my emotions were high.  Another person left a comment on my blog that I should abort her - I was furious & quickly deleted the comment.
I had to go to work the next day and email my friends, family, & co-workers what we found out. I sent out my blog & waited. I sat and cried at my desk, most of the morning on and off. Someone else would get my email or read my blog & send me kind words & sympathy. It was an awful day and I thought it would never end.

Everyone felt so sorry for us. I had so many people pray for us, but I quickly realized we were receiving a lot of pity.

I had people not talk to me. Good friends, didn't talk to me, like they didn't know what to say. I can honestly say, being ignored is far worse than answering any kind of question they had. I would rather talk about it than have someone be uncomfortable around me...awful just awful.

My Mom quickly found me a great resource. This e-book was so helpful for me. It told me to tell people up front what I expected from them. That I had to lay it out for them on what I felt & how I expected them to feel.  It seemed silly to me at first, but I quickly realized it was what I had to do.  And front that point forward I knew I didn't want their pity.

When people told me they were sorry, inside I was mad. My baby wasn't dead, she was not less. I felt her kick, I felt her move, I wanted her completely, and she was loved. From then on, I made it clear on my blog & in person that Ollie WAS our gift from God. That she was exactly who we wanted her to be.
I wanted people to celebrate her, and that she was still a baby & still our very much wanted daughter.  I craved knowledge. I wanted people to ask me about her. The more I blogged and talked, the better I felt.

Thank goodness for Jade as well. He picked me up and put me back together. Many times I cried on his shoulder. I cried during church. I cried in the bath tub. I cried in bed. I tried to pray it away, even though praying it away made me feel guilty and wrong in my heart. I think knowing about DS prenatally may be easier in some ways because the day of her birth I celebrated & I had done my research - nothing was a surprise, but at the same time its harder in ways because for 5 months I carried her around with the unknown weighted on my shoulders...wondering what will my life be.  When she was in my arms and so so beautiful it was much easier to bear.

God knew what he was doing all along.

Jade & my faith became my glue. I realized Down Syndrome would be fine. There are far worse things than Down Syndrome.
I knew Ollie Faith would dance, sing, run, play, giggle, clap. I clung to that. I became ok with Down Syndrome, and mainly feared open heart surgery.

What I didn't know during my pregnancy was the huge profound way that Ollie Faith would change my life, and my heart from the inside out. Her smile lights up the room, and her life has given me so much to be thankful for.

Now I thank God daily for 3 copies of the 21st chromosome. Without it, Ollie wouldn't be Ollie. She would not be extra special. We are blessed to be a part of the Down Syndrome community & we are blessed to stare into her gorgeous eyes and see the little sparkle of heaven shining back.

A year later, a lot of lessons learned, and my cup runneth over. I just can't believe what I thought to be the worst year of my life, has now transformed me into a stay at home Mom that gets to really be there for all the ups & downs of life with my 3 beautiful blessings.

If I could go back and tell myself anything about what life would be like now, I still wouldn't do it.  I needed these life lessons.  I needed to learn & grow.  Ollie has made me in to a better person, into a better mother.

For those of you walking this journey, I will tell you not to be scared, but you still will be.  All I can do is share my beautiful family with you, and know that pictures of life with Ollie will give you a sense of comfort that you can do this too!  For those of you local - we are going out tonight to celebrate.  Last year we crumbled at home & tonight my family is going out to dinner as a team to enjoy the blessing that was in disguise.  Thank God for his awesome, breathtaking plans!

"You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God. They cannot be numbered! I can’t even count them; they outnumber the grains of sand! And when I wake up, you are still with me!"

Psalm 139:13-18