Every test Nichole had at the hospital came back negative. Yet, one test would lead to other tests, as her blood work continued to show abnormal liver activity. During the following days, as we waited for Nichole’s several tests to be done, I became obsessed with reading “Gifts.” I cried with every story. I underlined words and phrases that spoke to my heart, and I wrote on the margins of the book.
Andy, on the other hand, was reading all he could on-line about the different tests and possible conditions doctors talked about. We laughed, as one of the doctors asked Andy after discussing a certain test that would be done the following morning if he was a doctor too.
“No” Andy replied, “I just have a lot of time in my hands to research.”
The fact that my husband was so knowledgeable of what was taking place medically gave me incredible peace. I did not have to worry about Nichole’s health. I was working on finding my new dreams, and expanding my hope for the future.
“Honey, listen to this” Andy said to me one afternoon as he clicked on a link for the National Association of Down Syndrome. “There is an article here called: If People With DownSyndrome Ruled the World.”
“Is it good?” I asked.
“Affection, hugging, and caring would make a huge comeback” he read.
“I like that!” I responded.
“The words “clean” and “fun” would be used in the same sentence” he continued.
“Oh! I really like that!”
“Weather would be the only essential news item.”
“Hey! I exclaimed, “That is the only part I care about too!”
We laughed. I sat by him and we read the article. We laughed. We smiled. And we agreed, the world would be a much better place if people with Down syndrome ruled the world.
“If God showed up right now” Andy said, “And offered to take Down syndrome away from Nichole, would you chose that?”
“I don’t know,” I answered truthfully. “I think I would want to right now, because it is so new, so different. Yet I feel that if I made that choice, I would be missing out on something big. And I would regret it. What about you?”
“No. I want her to have Down syndrome” Andy responded, “God intended for her to be this way, and I would not want to change that. God has great plans for her.”
“Yeah. I think He does too.”
In the middle of the night, I walked back in the dimly lit corridors of the hospital after depositing 2 fresh bottles of milk in the fridge. The night nurse approached me.
“Hi Ellen, how are you guys doing?”
“So far so good. They still can’t find anything wrong with Nichole, so I guess that is good”
“Yeah…you know, I noticed that book you are reading.”
“The book “Gifts”?”
“Yes. I hope you don’t mind, I flipped through it a little bit.”
“That’s okay”
“I just wanted to say…that you are very lucky.”
“I am?”
“Yes you are. My husband works with adults with disabilities, and well, we have fallen in love with people with Down syndrome.” She smiled, “We have been trying to adopt a baby with Down syndrome, but there is a huge waiting list.”
“Really?” I asked surprised.
“Yeah. We have looked at international adoption too, but it is so expensive, we just can’t afford it now. We have 2 kids, and we are done. The only way we would try again, is if we had a guarantee our baby would have Down syndrome.” She laughed at her own statement, “I know! It sounds crazy! But you are lucky. You have been given a precious gift. And you will have so many blessings in your life because of her. There is just something about Down syndrome, I don’t know what it is, but it really is special.”
“I think I am beginning to learn that.”
“Well, I don’t want to keep you awake any longer; I just wanted to say that.”
“Thanks…actually, do you mind if I give you a hug?”
“Not at all.”
I hugged the night nurse. I did not catch her name, and I had not spoken to her much that evening, but she had given me a gift too. She was so genuine. She did not see my child as broken, or as a mistake. She knew she was perfect. And she knew that the gifts that would come to us because of Nichole, were gifts she wished she could have in her life too.
After 6 days, we left Mayo’s hospital. The diagnosis was no more than an immature liver that was just taking a little bit longer to learn how to work. We had medicine and we would be back in 2 weeks to do more blood work.
We picked up Ellie at my mom’s house and spent the night with her and my sisters. Nichole was held, kissed, and loved.”
The next morning we drove back, happy to be making our way home. It occurred to me that just 3 weeks before; I had taken a broken baby home. I had been devastated about her diagnosis and had wished for my life to be different. This time around, I was coming home to celebrate life as a new mom. Love had quickly taken me, all of me.
Flashes of color I had never seen, began to make their way to me. I was mesmerized by the colors, taken by their beauty.
How was it possible, that I had gone for wishing for my baby to die, to knowing that I desperately needed her? How was it that in 3 weeks, my baby girl had taught me more about unconditional love than I had ever known in my lifetime?
This was not the road I would have chosen willingly. Yet, now that we traveled that road, I knew, just as Andy knew; that I wouldn’t want it any other way. And like Andy, I had been surprised by joy. Joy, and peace, and love.
There was open, unknown space before me, but I would feel the warmth of my baby girl as I held her close. She would lead the way. I wanted to begin the journey. A journey into a beautiful wildness. It would be a journey full of love. So much love.
The End
Don't miss:
Road Marker 321
Road Marker 321
Level 2 Ultrasound
Your Baby Might Have Down Syndrome
Surprised by Joy: Part 1
Surprised by Joy: Part 2
Surprised by Joy: Part 3
Surprised by Fear
We Belong Together
A New Family
She Has Down Syndrome
Nursing
She Has a Broken Heart
Fooled Them All
My Mother's Arms
Tears Flow
She Is My Own
I Chose Love: Part 1
I Chose Love: Part 2
Flashes of Color
Your Baby Might Have Down Syndrome
Surprised by Joy: Part 1
Surprised by Joy: Part 2
Surprised by Joy: Part 3
Surprised by Fear
We Belong Together
A New Family
She Has Down Syndrome
Nursing
She Has a Broken Heart
Fooled Them All
My Mother's Arms
Tears Flow
She Is My Own
I Chose Love: Part 1
I Chose Love: Part 2
Flashes of Color
Ellen, once again this was a beautiful - and beautifully written - post. You definitely have a way with words. I melted where you wrote about your conversation with the night nurse at the hospital; I myself actually have a desire to be the mother of a child with Down Syndrome someday. Getting to know different special needs kids - of all kinds - through the different blogs I follow, including yours, as well as different people I have come to know personally with Down Syndrome, makes me want to experience that beauty and love for myself.
ReplyDeleteI've tried to check in frequently through this journey so that you would know that your words were reaching me...but I have to say, again, this was such an amazing series of posts. Thank you so much for sharing this part of your life with Nichole.
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