Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Tuesday, January 10, 2012

Making Room

Sydney, Isaac, and Julia 12/1/2010

Life without Julia just isn't the same. There is a huge hole in my days and nights. My arms are missing that extra 10 pounds of cuteness. Julia changed so much about our family life. I was on bedrest beginning with week 30 of my pregnancy with Julia. Then when she was born, Marc and I decided to hold her pretty much around the clock. Early on we thought she would only live a few days and we wanted someone (one of us) with her and holding her at all times so she would not be alone. As the days and weeks and months passed we continued to hold her nearly all the time. It was comforting to her and to us. And she was so cute! When those big brown eyes would gaze up at us and later when she would smile up at us and then even later when she would reach her hand up to us-- well, we just couldn't put her down! While one of us was holding Julia, the other could focus more attention on Syd and Isaac. I realize, though, how they also made room for Julia in their everyday lives. Before Julia was born, Isaac always wanted to sit with me and he would frequently come into our room at 4 or 5 AM and sleep the last few hours with us. Soon after Julia was born Isaac caught a cold. We had a talk with him about germs and washing hands and not coming into our room at night with Julia in there. He took this to heart and stopped coming into our room at night. Then we bought a bassinet for Julia to keep in our room, which she probably slept in for a portion of only about 7 nights. I remember Isaac asked if we bought that bassinet so he could start coming into our room at night again. :) He actually has been sleeping very well in his bed for the last year. After we lost Julia, Isaac started wanting to be near me and sit in my lap again. Part of it is probably him sensing my sadness and part his own sadness. Either way, it is very sweet. It is as if he gave that spot to Julia while she was with us and then decided to claim it again. He made room. So did Sydney. She was used to having a lot of my attention. I would often volunteer in her class, I would walk her to the bus stop every morning, I would do her homework with her, and take her to and from her activities. When Julia was born she had to become a lot more independent. I couldn't volunteer in her class much or walk her to the bus (she would walk with our neighbor to the bus stop which was only 2 houses away). We had to carpool more for activities, and she had to do more homework on her own. She did not complain, and she has excelled at school. Sydney loved to talk about Julia to her friends and to show her off. She was and is such a proud big sister. Every little thing Julia did was cause for celebration to Sydney, just like it was for me. Now I am able to do more with her again and be there for all of the little things like bus stops and homework. Since we lost Julia, Sydney has been so attentive to me, especially when I am sad. They made room, and now they are trying their best to help fill the hole. They are the best kids ever.


Anonymous said...

Your words are so beautiful! All of your kids have such a special place in my heart.


Anonymous said...


What a thoughtful reflection. Little is known about the siblings on the trisomy journey. I think that the experience can be very positive and enriching, despite the sacrifices and eventual sadness. I love to see how grown up siblings who went to the SOFT conference every year as kids often keep in touch with one another. There is a special bond among them.
Filling the hole is tough but you sure are lucky to have such great kids.


Lindsay Nicholls said...

Jenny, we have not meet but i am friends with your sweet sister Jody. She was gracious to allow me to know of your story from the very beginning. I would ask about you all often. Thank you for sharing your amazing/humbling/heartbreaking story with us. I CAN NOT imagine what you all are feeling/ facing! PLEASE know we have prayed for you all over the past year and half and will continue to do so as you grieve your precious child.
With Love,
Lindsay Nicholls

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