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 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 my heart. 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.
***
Thank you so much for joining me in this journey during the month of October. Although I wish I had received my daughter with love and joy, it was through this emotional time that I came to recognize my brokenness. it was also in this time that I found great beauty, because of God’s love and compassion that surrounded me.
If you just joined in, make sure to read the first post: The road less traveled.
If you missed yesterday’s post, then read: A gift.
I do not want you to think that we came home and that Nichole’s diagnosis was no longer hard to accept. I had good days and some hard days. What was different, was the fierce love I had for my child. I wanted to love her and protect her. Yet sometimes, it was hard not to feel sad about her diagnosis. I have discovered that even now, as we approach new stages of development, I still have to grieve the diagnosis in different ways. But it is okay, it is part of the journey, and oh how I have been transformed in the process. THIS is my continual reminder that I am broken in my own ways, yet God continues to work on me and love on me. THIS is where I find the beauty in brokenness.
I would love to hear you feedback, or answer any questions you have.
Again, thank you for journeying with me this month. And thank you for sharing these posts on Facebook and twitter.
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Ellen I have read all of your October posts – they have been amazing. Thank you for sharing your journey. I LOVE the photo with this post – you are both gorgeous!!
Hi Ellen!
I appreciate your comment on grieving over her diagnosis at times. The wonderful thing about Nichole’s condition is that it is all she has ever known. She does not see life as a loss at all but all gain. Her optimism is what makes her special and what endears her to us all.
It is who she is! Yes!
I showed up half way through the month. Now I’ll go back and read what I missed. Thanks for sharing your journey and your insight.
Thank you so much for sharing your beautiful story. I think what I loved so much is that you were so honest with your feelings and I connected with you as I so many of those feelings as well. That makes me realise that we are all faced with those when we first begin the journey of special needs/disability.
I too have discovered a wonderful gift in my child’s “brokeness”. I also realised it was me who needed mending and not her and she has given me so much more than I ever could have imagined.
I am blessed and I am grateful.
It has been lovely to get to know you x
I had to stop several times because I was bawling! And my sparkle is almost 9 years old! The feelings are so universal, and yet so individual at the same time. My Phoebe also had another genetic based condition called Cystic fibrosis that I was told could not occur in the same child. But it did and I fight every day of her life to make sure she has a long one that surpasses all the estimates that she will die young. It is a deep longing love that I have never known that keeps me fighting for her. So far she is doing fairly well. Although, I am grateful that she really does not understand what Cf means like most kids understand it. She lives joyfully and fully while still sometimes fighting me with her daily treatments, but we get through it. We like to call her Tenacious P. I keep telling myself, I cant lose her. Not yet. She has so much more to teach me. Ok. I am crying again!! gotta go.
Julie, thank you so much for sharing a little of your story with me. Wish I could reach out and give you a big hug through the screen!
Thank you Ellen, I finally had time to read all of these posts. We had a similar experience with our son. He was born via emergency C-section on Father’s Day 2004. I had been told I couldn’t have anymore children, but at 44 I found that doctors don’t always know. He weighed #2 and was only 15″. He was born at 33 weeks and we were told he probably wouldn’t survive. God, in His Infinite Wisdom, allowed our son to live. He’s had many surgeries and procedures in his short 10 years. He is mostly healthy. He has such a wonderful sense of humor and he loves to sing and entertain. He made up the joke the other night: Chase: “Knock, knock” Me: “Who’s there?” Chase: “good” Me: “good-who?” Chase: “Good-night!” Then he fell asleep! He comes up with these gems all the time. Because of Chase, God has sent me a number of songs I hope to record sometime. One is about being chosen to be his Mom. I call it “He Chose Me”. Thank you, Ellen for sharing what many of us have gone through only to realize that we all “belong together” because God doesn’t make mistakes.
<3 Valorie/Chase's Mom
Valorie, thank you for taking the time to comment and share about your Chase!
These posts are beautiful.
So much of what you went through happened with my daughter when we received her autism diagnosis. I remember wishing that her disability was present physically so that I didn’t have to explain to everyone that she was different. It’s so amazing how quickly out perspectives can change for the better, and it’s so amazing to be able to enjoy all of the little things that we would have missed out on otherwise. Without our special kids we would have missed a lot!!