When I was about half way through my pregnancy with my 2nd child, we went in for what we thought was a routine sonogram to peek and see if we were having a girl or a boy. We already had a beautiful 2-year-old little girl at the time and were very excited to grow our little family. Instead, we were told the baby had many defects and probably wouldn't live through the pregnancy. If she did survive the pregnancy, the delivery could kill her. If she happened to live through delivery, her quality of life would be very poor (there was a good chance she would have severe brain damage). We were then given instructions where to go to abort her.
I was lying there still trying to process all of this information when my husband spoke up and let the doctor know that we would not be going for an abortion. I still remember the look on the nurse's face who was in the room when my husband said this. I don't know what she was thinking but she had a look of shock on her face as if she could not believe we would choose to continue with this pregnancy. Her shock also might have been that not aborting the baby was an inhumane thing to do; that we were choosing to make the baby suffer. We chose not to end her life because God created her life and we had no right to take it away (Ps 139:14).
We prayed for this little girl as did our friends and family. As they closely monitored her throughout the pregnancy, God began working a miracle right before us and the doctors. She was born with nothing on that very long list we were given! For the first time in months, I had taken a deep breath - she was okay. There have been many times I wish the story would end there but it doesn't. When she was nine weeks old, a test came back saying she was down syndrome.
My heart broke with this diagnosis; I didn't know how to process this emotionally or spiritually. A question I struggle with has been "God, why would you bring her through all that, only to have this?" I wanted to know “why” so badly but just could make no sense of it. I didn't know that I should or even how to reach out for help during this time. So I did what I knew how to do and that was smile and stay busy. I had a 3 year-old and a newborn. As if that wasn't enough, I was finishing college, went to a Bible study at my friend's church, and there was always some way to serve at my own church.
When I was alone I would break down and cry I didn't know how to move forward, I was scared of what the future might hold for my daughter and our family. Everything I read about children with down syndrome listed all the medical problems they have and things they wouldn't be able to do. They were all so hopeless and cold. I had to stop reading them because they were not helping - they were making me worse. I didn't want to feel this way anymore and would turn off my feeling the best I could. I also began withdrawing and keeping everyone at a distance.
I knew that even though I didn't understand “why” that God was my only hope. Friends would ask how the baby was (she was doing great) but never how I was (I wasn't so great but no one could see that). I was lost... I was a Christian and very active in our church but I was still lost. One of my favorite authors describes three different ways to be “lost.” One of them is; “I feel that my life is dropped and lost. ...that it felt as if someone had cut the strings that held her life together and she had fallen and rolled under the sofa – and no one had noticed.”  I could be in a room full of people and still feel alone. I'd read and pray, even though at the time, God felt far from me. But He also gives hope in quoting Luke 19:10 “For the Son of Man has come to seek and save the lost.” God never left my side. He is faithful and did not leave me in this time, He came after me.
When my daughter was 12 months old, we celebrated her 1st birthday, and I finished college. On the outside, I seemed to be doing okay; but I wasn't. I was choosing not to feel what hurt so bad and I was not in a good place. The next month, just days before Father's day, I found out I was pregnant with my son. I wasn't even sure I wanted to try for another child. He was not planned; after all, I still had a baby in my arms. I was scared to death of being pregnant again. W\hat if there was something wrong with this baby too? How was I supposed to do all this? My son was a gift from God that I didn't even know I needed. Getting pregnant with him took my focus off of myself and everything I did was because these children needed their mother.
I chose to bury the pain in my heart so that I didn't have to think about it. This didn't always work and I still had nights where I would wake up crying. I would ask, “Why won't this go away?” It wasn't going away because this hurt wasn't healing with time; it was still there and as painful as the day I got the phone call. Because I didn't know what to do with how I felt, I just didn't want to feel it. I was growing callus.
But God is faithful and did not leave me in this time, He came after me. I was lost for a long time. Grace was five years old, when God began to soften my heart until one night, by the prompting of the Holy Spirit through a woman's Bible study, I finally cried out for help to God and to a good friend.
In the following days we met, and for the first time I told her my story and how I was struggling. After so patiently listening to me she then asked me a question that I will never forget. She said, "What do you see now when you look at your daughter?" My answer was, "She is a miracle." I heard those words come out of my own mouth; but it was as if I was hearing someone else speak to me. I have always known that the very fact that my daughter was alive was a miracle of God; and she was hitting every developmental milestone despite having down syndrome. She continues to be a miracle; but I had not connected this miracle with the pain that broke my heart.
My friend's question has changed the way I see things and making this connection has taken the sting out of that painful day. I still don't have the answers I wanted and there is still an ache in my heart for my daughter that may never go away. This time with my friend will be a day I will never forget; and I will always have what she taught me. She looked across the table from me, with tears running down my face, smiled at me (yes, she smiled. and I remember thinking "why are you smiling?") then she told me "God will use this and you..." She explained how God will use this to reach and encourage others that many cannot.
This was the first time anyone looked at me and said these words. I may have heard or seen them somewhere along the way but I never thought they applied to my life or maybe I just wasn't ready to hear them. This time there was no missing it... she had listened to my story and my struggles and she was telling me that God does and will use these things in our lives, nothing is meaningless.
My daughter's name is Grace (God's undeserved favor). Her story is still being written... not only is it a miracle she is alive, she likes to prove wrong every label put on her and does many things she should not be able to do with down syndrome. She is a perfect picture of God's Grace.
Palms 139:13-16 says, "For you have created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful; I know that full well. I was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book."
While Grace's diagnosis came as a surprise to me (and the rest of us) it didn't to God. I have struggled with this very thought... “Why, God, would you choose this for her?” I have not always praised Him for making her the way He did. There are still days I cry and wish all this would go away; but now I know that all this has a purpose and that it was “ordained” by God. This word “ordained” caught my attention in a new way as I read it this time. “Ordained” here is the Hebrew word yāşer and it means: “God as creator or Maker, has its focus, His planning and forming the creation as a skilled craftsman.” “We aren't victims of rogue molecules or rebellious cells. Every fiber, molecule, and brain wave answers to His command. He is in charge!”  Let that sink in for a minute... I don't know your story; but this is true no matter what the situation.
Doctors cannot explain why down syndrome happens; it just does. There is no rhyme or reason to it. This thought is pretty hopeless in itself; but I have hope because I know that everything is under His control. I don't have all the answers to my questions but His thoughts are higher than mine  and when my human mind can't understand, I have this promise from our amazing God - “I know the plans I have for you declares the Lord...” and I hold on to this and many other promises God gives me and you in His Word.
Walsh, Sheila “Good Morning Lord” pg88
Like 19:10 NIV
“ordained” 3570 Zondervan exhaustive concordance 2nd edition
Max Lucado “Before Amen”
Isaiah 55:9 NIV
Jeremiah 29:11 NIV