To read about Project 3.21 click HERE
I starting this blog at the very end of Fiona's pregnancy. I had started my maternity leave, was enjoying my last couple weeks as a momma of two, and became inspired to start this little scrapbook of mine. At this point, Down syndrome and clubbed feet were fully accepted and the only real fear gripping my heart was for Fiona's heart. I have said it before, there is no tragedy to be told here. Fiona's little life is one of victory and God's grace. But back on March 11, 2010, I didn't see it that way.
I have shared my pregnancy journal entry from that day.
"Today was one of the longest, most painful days I have ever experienced. The doctors found that you have some pretty serious complications. I am trying my hardest to keep remembering that God is in control and that his purpose is greater than mine. I am in so much pain for you and scared of everything our family is about to go through. Your little heart did not form correctly. You are growing, your heart beat is healthy, but your heart is not right. They also found that your feet are turned in. If that is all that is wrong, both problems are most likely fixable after birth with some major surgeries. I will be praying everyday that that is the extent of the situation.
But Baby, there could be a lot more wrong with you. This is what scares me the most and what I really need God's help with being strong. If you do make it, I pray that you learn to love God and trust Him in everything. Although I don't like what is going on, God knows and has a plan for you and our family that is greater then I know. On a more positive note, we did get to see you a lot today in all the ultrasounds and you look adorable! No matter what happens your father and I love you and you will be the most beautiful girl."
I wrote this late that night, after hours of crying and hours of researching. I looked up everything I could find on the heart condition they thought at that point that she had. A defect called Transposition of the Great Arteries. My eyes saw scary words like "blue baby" "immediate surgery" and "mortality". My hands trembled as I typed in my next search. I could see the faces in my mind of what my daughter was going to look like and I didn't want it. I wanted the little girl that looked like me that I had been dreaming about since the day I knew she was forming inside me. So I cried and held that tiny bump on my tummy, loving her more deeply, but hating these thoughts that were going through my mind. There was not one second that I didn't want my baby, I just didn't want her to be the way they said she was going to be.
Down syndrome. NDSS.org. Kellehampton.com. I searched the sites, and read the facts. But mostly, I was looking at the pictures. And what I saw with my eyes changed the thoughts in my head.
I saw beauty.
I saw sons that looked like fathers and daughters that looked like mothers.
I saw smiles. Tons and tons of smiles.
And I turned into this half crying half smiling mess. That mixture of scared and excited, concern and relief. The light switch had been flipped in my head, and this group of people I once could only see as different, were now amazingly different. I tread these words carefully, because I did know some wonderful people growing up with Down syndrome. But its not what you wish for. You don't dream for those almond eyes. And to be honest, although I was "accepting" and kind to those kids, I didn't get it. I didn't see the beauty- my worldly "must fit this box to belong" glasses clouded my vision.
Well, it took having my daughter blessed with that extra chromosome to take those glasses off. And God did not give me any more then I could handle. He shook me to my core, showed me the worst of the worst and waited to see if I would still lean on Him and trust Him. And we did. Deep down, I wanted Him to say, "okay, you have had enough" and for Him to blow the medical world away with Fiona being born, with no health problems and not with Down syndrome. But that wasn't His plan.
Fiona is perfect- she is my beautiful gift who brought me closer to God and made my life more meaningful. God didn't make her heart perfect, but that horrible, highly life threatening heart condition they found in the first few ultrasounds "disappeared". Instead, she only had a condition that is the most common and was repaired with the least risky surgery. And he didn't make that extra 21st chromosome disappear, but her Down syndrome very little effects her appearance. I have to argue with people that she does indeed have the extra 21st chromosome. And I actually feel very out of place in the Down syndrome community because people look at her and think shes normal. My God, what a blessing to have to defend her DS diagnosis! But each child I meet blessed with this more difficult road I see completely differently now. I see what they have overcome, instead of their differences. I see kids that are strong willed, that don't take no for an answer and whose smiles come from the deepest part of their souls. Because they understand something that most of us don't. That life is a beautiful gift. We don't choose our life, but we choose how to live.
Thank you to everyone who has donated to Project 3.21. We are almost half way to meeting our goal for NDSS, but more importantly an overwhelming number of people have taken the time to read Fiona's story and see her amazing potential. Our gratitude for each donation exceeds words