I sat down last night to talk to my 10 year-old daughter, Shea, about her perspective on our journey with Rosemary. There have been so many times when emergencies have come up and we’ve had to leave either in an ambulance or in the van to get Rosemary to the ER. And Shea was left with one of our God sent neighbor’s, who would then wait with her for our family to arrive to take over the care for her and Lee until Drew could get home from the hospital.
So here are some of the things she had to say about Rosemary…
Shea regarding the first 911 incident:
“For a second, I felt like I didn’t know what was going on. All of the sudden, I see my neighbors and police in my house, and they were checking to see if my sister was all right. Is she okay, am I going to be okay, and where is she going to go? Then I saw my Mom crying, and I cried. I knew something ‘not so great’ was happening. I didn’t see my Mom for a week at a time, and that’s how it was for a while.”
Shea’s response to how it is now:
“I’m excited that I still have a baby sister looking at me, smiling, and shaking the baby gate when I get home from school. I also want to say that it’s my pleasure to watch her everyday when Mom needs to cook or go on her website or clean. Rosemary is finally playing and talking and able to run around with us. It’s so much more fun now!”
Having a sick baby means adjustment for everyone. Each member of our family has had to rearrange their building blocks. Staying in touch with every family member's feelings and needs is vital to surviving these times. We have a sturdy foundation so rebuilding has had less of a traumatic impact on us. We’ve really dealt with the last year and a half one day at a time and in real time. I still think to myself, “When did I have Rosemary?” I feel like I blinked, and here we are. Nevertheless, change is constant and being flexible and having the ability to flow with the times has made all the difference in keeping our heads above water, and love has been the constant life saver.
Raising a child with HLHS can be one of the most frightening challenges for parents and families. My hope is to share some of my personal experiences living with and loving the life of my 7 year old daughter Rosemary. This blog will provide some insight into what it has been like for me and our family to live through 4 open heart surgeries, lengthy hospital stays and life outside of the hospital. For more information about HLHS, helpful resources and our story, CLICK below...
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