Today, our guest blogger Molly, continues her story about finding out that her daughter, Nora, was to be born with special needs. You can read Part I, here.
Noraatthepark-300x200Life with Nora was the most beautiful and the most painful fourteen months of our lives. Somehow the moments that we experienced with death knocking on our door made the seconds seem more vibrant than they had in the past. The routine, the monotony of each day was thrust out the door and each moment held terror and beauty in ways unexpected. Death was right before us and we could shirk in our fear or we could make the most of each second. We tried to embrace the latter as much as we could.

Molly and her daughter, Nora.

Molly and her daughter, Nora.


After the devastating news that Nora’s heart truly was “broken,”we moved on to prepare for life with her with as much joy as we could muster. I had to be induced so that all the proper professionals would be present. It was a most blessed labor. The pain of it and the joy echoed deep human truths that resonated even stronger with us this time around. Once she was born they let me hold her for a brief minute before whisking her away. Instantly Aaron and I knew, this would be a long road. The reality had arrived. She was not well and my soul groaned from its depths.
In the 14 months of her life, Nora underwent four major surgeries and countless procedures. She was diagnosed with a very rare syndrome which was named as the underlying cause for her heart and some of her other medical issues.
The only way we got through this time was with a ton of help and support. With me not working and Aaron’s hours limited in order to be with us, money was very tight. We received money, gift cards, food, babysitting, and lots of words of encouragement. I had a group of women with children that had similar issues and we met monthly to share the pain and the fears that weighed so heavily on us. My mother came and lived with us every Tuesday through Thursday for the whole year  just so Evie would have more attention and so Aaron and I could get away on weekly dates. My aunts and uncles visited and prayed. Our families rallied, our friends rallied and many others did too. It was Nora’s village. She brought a community of people together that selflessly loved her and us and it was beautiful; truly a time of light and love at a time when one might expect much darkness.
Nora

Nora


Nora grew, developed and flourished at home. She had a team of nurses who cared for her and doted lovingly on her as if she were their own. As Nora’s mother I had to resign that special sort of “ownership” we as mothers can sometimes feel. I had been so overly protective of Evie, hardly allowing others to step in but with Nora I was forced to let go. I didn’t know what was best, so I had to trust others. Over time I learned to let go of my control. This letting go and allowing Nora to have a team of mothers was also formative for our family.
For being so small, Nora’s personality was the biggest in the room. This sweet little peanut would pull on her tubes to get more attention, she clapped and blew kisses and despite all the medical care she was just a baby who did all the baby things. Because she couldn’t talk but had such a great need to communicate with us, she and I developed an understanding between us. No words were spoken but we understood each other. We could sense each other’s spirit and hearts. She was the light of our lives and we were hers. This “broken” child was anything but broken. She was vivacious and zesty. Sassy and sweet. Adorable and delightful. She was our Nora and we were so glad to have her. The “work” of it didn’t feel like work. It felt like a joy to care for such a grateful, precious little daughter. We all did everything for her. A machine breathed for her, a machine fed her, a machine tracked her vitals constantly but all of that disappeared and all we saw was her. Her beautiful soul and her strong spirit showed in her vibrant smile. Her courage and feist came through as she worked to learn to roll over and to sit up in her therapies inspiring us daily. We were the lucky ones just to be able to witness this little hero. Everyone that met her felt blessed to have met her. Her affect was moving and powerful. Her strength of presence and her beautiful soul won their way into the hearts of everyone.
One of the more memorable moments and examples of this was when we had some teenage visitors. Our babysitter innocently brought some friends over without telling them what they were going to encounter. These boys and girls came in and were instantly transformed. Their guards went down as this amazing sweet child blew them kisses and clapped her hands. You could see their shoulders go down and their walls disappear. They immediately began to ask questions about her and her surgeries and who this little powerhouse was and what had she gone through and why. She was so free and joyful and vulnerable with them. Her joyful vulnerability gave permission for these “cool” kids to let down their guards. It was because of her “weakness” that all were reminded of their own and felt comfortable opening up to her. Why these paradoxes come together is a mystery to me, but I saw them in her.
This child, this amazing miracle, full of personality and spunk and attitude was the strongest human
Happy Nora.

Happy Nora.


I ever met. She faced her reality with courage daily. I asked her often if it was all worth it, she always showed me it was. She wanted to be here, every second. She savored her life. She worked so hard to make each moment count. Our life before Nora was good, but we didn’t know how good. She taught us life is precious, sacred, and should be cherished.  Now we strive to live the moments breath by breath with faith, trust and hope.
This littlest hero shook us from the comfort of our own controlled little world to a great big crazy world full of life! Life is messy, hard, and uncontrollable. Embracing it in the way she taught us to has rocked our world in the most powerful way imaginable.