We received the results of the baby’s genetic testing on Monday morning.
There is a 99.5% certainty that our child has Down Syndrome.
At my age, the chances of carrying a child with Downs is 1 in 10 (some statistics site a 1 in 30 risk factor). I am the 1.
When the doctor told me the news, I literally gasped for air. And then the tears came. And came. And came.
I know I will read this blog one day in the future so I want it to capture what I am feeling and thinking at this moment. And what is that?
I don’t want a sick child.
I don’t want a special needs child.
I don’t want to be this mom.
But I am.
I need to call this what it is – a cross and a burden. That might be shocking to some of you. It’s probably not what I am supposed to say. But it is the raw truth. I wish I could be full of grace and acceptance and understanding. I refuse to believe this makes me a bad person. I think it makes me real. And maybe relatable. And it captures where I am at this time. I will travel through this place and settle in a much better attitude.
I know God loves me. I know God will bless me and my family through this child. I know God is beautifully orchestrating the events of my life and leading us on a new path.
I know. I know. I know.
But right now I need to cry and feel the range of emotions.
I’m not angry. I don’t understand the situation but it’s not anger. It’s seems hypocritical to accept all the good and beautiful in life and then throw a fit when we get the bad and the ugly. Why do I think I deserve one and not the other? Why me? Well, why not? I don’t have a name for the emotion. I feel like a lost child, alone and searching for my family.
My mother once told me a story of her good friend Marilyn. Marilyn was a wildly talented woman who had been diagnosed with an aggressive cancer. As I remember the story, Marilyn heard the grim news, spoke with her family, and then asked for privacy. And then she let God have it. All of it. Anger. Despair. Hopelessness. Fear. But after that moment of raw emotion, she passed into a state of grace and moved forward with acceptance. That story always stuck with me. And it came back to mind as I received my own difficult news this week.
I hope the same will happen for me. With my faith sustaining me, I will move through these emotions to my new normal. My inner Pollyanna will show up eventually and I will play the Glad Game once more.
I will do the research and make the best decisions I can for my child.
I will become an advocate and a voice for this child and others.
I will be a new kind of mom and do it to the best of my ability.
Telling the kids the news was memorable. Gathered around the family room, Greta on the speaker phone from her office, I couldn’t get the words out. It was like I had cotton in my mouth. So Sam told them. Johnny immediately said that we either needed to play video games or eat chocolate. He then bolted from the room, grabbed a box of chocolate fudgcicles from the freezer, and distributed the bars to everyone. Johnny has all the makings of a great father and husband. The kids said they expected the news.
And then Michael said, “Mom, it’s not a bad thing. It’s just a thing.”
He’s right. It’s just a thing. A really big, unknown, kind of overwhelming thing.
My family has been my rock. Through tears my mother simply said, “Kathleen, all I know is that God loves you. And I love you too.” It was if her arms reached through the phone and wrapped me in an embrace. As soon as we hung up, she began looking into flights to come stay with us for a few days. Her instinct is always to walk into the burning building. She knows that there are more important things in this world than coronavirus. She longs to be with people who are suffering. While she is not going to visit at this time, just knowing she was packing her trusty Witch Hazel hair spray and prayer books comforts me.
My older brother Dennis has taken his fair share of emotional phone calls from me. He allows me to speak my mind and share my rawest emotions. I’ve spoken things to him that I was afraid to even think. My older sister Karen is in full planning mode. She no doubt has a Plan A, a Plan B, and maybe even a Plan C. She’s changing our will to better accommodate and protect a special needs child. She has been with me when four of my children were born. I know she will be with me every step of the way.
My sister-in-law offered to take a couple of the kids for us. Michael and I will drive the girls to her home later this week. Rocky and Miffy will have a ball at Camp Miriam soaking up the love and attention from her three precious children. I can’t wait to see her and her family. What a blessing that they can go have some normal. We will swing through and see my sister’s family on the way back. I have received so many wonderful emails, texts, cards, and phone messages. I am slowly responding to each one of them. Thank you for flooding my life with hope!
Finally, I want to tell you about my new friend, Linda. We struck up a conversation at Johnny’s T-Ball practice last week. Linda has a beautiful, spunky special needs daughter who is 3 years old. I watched my children watch little Grace playing. I’m sure they were imagining what our child might look like. And I saw their faces grow gentle and soft. It just melts your heart to see a parent with a special needs child. You imagine what their life must be like and you admire the courage and dedication. Linda has fast become a wonderful support and has embraced my situation. Naturally, I texted Linda when I heard about my baby. She responded with the best advice I have received.
Feel all of it.