What few words it takes to change a life. Just a few words, spoken gently and reluctantly, but life will never again be the same for our family. At the same time, not much has really changed—yet.
A week ago, on Thursday, February 4th, I saw on the ultrasound screen that our newest little girl had an obvious heart defect, so obvious that the ultrasound technician did not have to point it out to me. He answered yes, that is what is called a hole in the heart. He didn’t have much to say otherwise, in spite of my bugging him with many direct questions. Poor guy. Now I know that he was in a tough spot and I was not making it any easier for him.
Seeing the problem with her heart did not concern me, partly, I think, because the technician was so calm. He had scanned several of our other unborn children, and always been very open with whatever he saw, and I assumed that he was doing the same this time. Two thoughts did immediately come to mind:
“This little girl belongs to God.”
“I don’t want to tell anyone about this who has already decided that 10 is way too many children, and that 38 is way too old to be having them.”
I went home and excitedly shared the GIRL news with many family and friends. Finally we were having our little Verity! I emailed these pics, with an additional gender shot that was designed to forestall the inevitable question, “A girl? Are you sure?”
(Is it just my rose-colored glasses, or does she have a cute profile?)
I called a few people and told them about her heart. I googled “hole in the heart” and learned that there was a wide range of what that could mean for Verity, but most of the information looked encouraging. We began to pray that God would heal that hole.
Well. Now that we knew there was a problem, I wanted to be able to talk it over with my midwife at my next prenatal appointment, which was only a few days away on Monday evening, but I wasn’t sure she would have received the results by then.
So on Sunday evening, February 7th, I gave her a phone call.
I asked her if she had received the ultrasound results. She said yes, she had, and asked me what the ultrasound technician had told me. I explained it as best I could. She asked me if Joe would be coming with me to my appointment. This should have made me wonder, since it has been years since he has been with me for a routine midwife appointment. But I didn’t wonder, and answered “No.”
Then she told me that in all the (20?) years she had worked with this technician, he had never written up such a detailed and clear preliminary report. She stressed how unusual it was.
This is what I wrote down as she told me what the report stated:
- Atrial septal defect
- Overriding aorta
- Absent nasal bone
- Club feet
- Suspicious for Down syndrome
A hand immediately grabbed my heart and squeezed hard. My mind swam. Time slowed down and twisted into a surreal dream. I felt my throat close up and sobs build inside me. I fought to stay calm enough to finish the call. I don’t remember much of the rest of our conversation, but I remember thinking, “God will help us.” I think I said that, too. She said she was glad I had called, because she had been worrying about me driving the 45 minutes home from her office alone. I know she told me that I didn’t need to come to that appointment the next day if I needed more time, and I told her I would call her the next day to let her know.
Then I no longer needed to hold back the tears. My heart was being wrung in half. I stumbled onto my knees beside our bed, sobbing for help. “Oh God, help! Help! Help me!”
Then the thoughts began to come~
“Others will not love her.”
“They will reject her.”
“They will think she is not worth as much as normal children.”
“They will not celebrate her birth.”
“They will think she is ugly.”
“They will feel uncomfortable around her.”
“They will avoid us.”
“They will feel sorry for us.”
“They will say we pushed our luck too far and got what we had coming to us.”
And then as the medical realities began to sink in–
“She will need medications, therapy, surgery.”
“She will suffer pain.”
“The doctors and nurses will think it is a waste to perform expensive surgeries on a baby with Down syndrome.”
“They might not take care of her as well as they would a typical child.”
I had never felt this kind of anguish before, this anguish of knowing my child would be rejected, knowing that she would suffer as a little baby in ways that none of the rest of us have ever had to suffer.
I didn’t want this to be true. I didn’t want to face the fact that I had to tell Joe. But I knew that not telling him wouldn’t make it not be real. I wrote a note to my online friends to say that I had received very bad news and to ask them to please pray as I told my husband.
Then I called to Joe as he was downstairs reading to the children as he always does on Sunday nights. He heard something in my voice and came quickly, asking, “What is it? Did you lose the baby?”
When I could get the words out, and he understood what I was trying to say, he did not seem at all shaken by the news. He just hugged me to himself and let me cry. I told him that I could already tell that this was going to be an opportunity like none we’d ever had before to extend grace to others. Other people would be unkind, and we could not allow resentment to build up against them. We could not allow ourselves to keep track of who responded rightly and who responded wrongly and who did not respond at all.
Later, I sat in a daze with tears running down my face, reading page after internet page of information about what our little Verity was facing, and eventually had to stop, overwhelmed. I felt compelled to reach out for help from someone I knew I could trust, and who would understand, and sent a brief email to friends of mine from the past whose 7th child, Jon, has Down syndrome. His mom replied later that night with words of love and comfort and understanding that were balm to my open wound.
I decided to tell my online friends the news, although I hesitated over the risk that some may mistake my grief as a lack of love for this baby, or as a lack of trust in God.
Here is some of what I wrote to them, through eyes that were blurry with falling tears:
“…it looks like God has chosen to set our feet on a different path from any we have ever walked before.
Right now I am feeling many strong, raw emotions that I have never felt before. It hurts terribly deep down to think of people rejecting this little baby we already love so much. And lots of other emotions.
I know this is not a shock for God. I know that He designed this little one especially for our family, and that there are things He wants us to learn that He knows we would not have learned in any other way. I know that He is our strong Help, and that we can trust Him. He is just as worthy of our praise now when we are hurting as when we are rejoicing. And I will keep on saying the truth to myself. I know I will not grieve forever. But right now I am grieving.”
As I lay in bed that night, sleepless for hours, it felt to me like I was curled up on Jesus’ lap, being cradled in His arms. He was saving my tears in his bottle.