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

Monday, September 12, 2011

Fearful

Life with our sweet Julia has definitely been a roller coaster. There are so many questions and so few answers. During the first 3-4 months after Julia was born, every week brought episodes that would cause me to think that this was it. That she wouldn't make it. Living like that was exhausting, both emotionally and physically. Worrying constantly about Julia while still trying to provide a secure and loving environment for Sydney and Isaac was and is beyond hard. My children have seen me cry more times in a year than I hoped they would see in a lifetime. They are so very sweet, though, and are always trying to comfort me. Sydney and Isaac have always been aware that Julia is fragile and would not live as long as us. They do not miss a chance to love on her and to try and make her smile. They are sad at times, too, but they do a great job of loving and enjoying her as much as possible.
Beginning in late spring, Julia was much more stable than in the previous months. I was not fearful of everyday and could enjoy her and life more. She was smiling and interacting more. I even went away for 2 days to attend the wedding of a dear friend and left Julia home with my husband and in-laws. That felt brave, but she was doing well. We were then able to travel in July, and Julia did great. In the last few weeks, though, she has had a couple of episodes that have caused the fear to seep back into every day life. The first, you can read about here. The second happened a few days ago. Julia struggled to breathe for several hours. She was having short 3-4 second episodes of apnea and then she would fight to breathe again. This had happened before, but not for more than a minute or two. This time it was getting progressively worse and she was exhausted . We were on the verge of going to th ER. Then I remembered that we had some small oxygen tanks left over from hospice. We had never used it, and it had not crossed my mind until right then. (The cardiologist had told us that oxygen would not help her much, so I put it out of my mind.) We grabbed the oxygen and turned it on. She soon started looking much better and calmed down enough to wake up and see what we were doing. Between her waking up fully and calming down and the oxygen, her breathing returned slowly to normal. She has been breathing well since then without oxygen. We did, however, have a much larger oxygen tank plus a concentrator delivered the next day (yay for our very helpful pediatrician and nurse!).
Recent losses in the trisomy 18 community are also adding to my fear level. Six sweet little ones, ranging in ages from 6 weeks to 6 years, have passed away over the last three weeks. Each loss is tragic, and to have so many in small community in a short period of time is devastating. As parents of t18 kids we all know that every day is a miracle. Every day is more than we were told to expect. Because of that, everyday we try hard to keep them happy and well, and we celebrate every "little" milestone and month birthday. I know how many days old Julia is (287). I have kept a record/journal of every day of her life. Il just love her so much. We all do. I don't want to live in fear of the future. I want to enjoy Julia's life and my life with her to the full.

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