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#ClickforHope | Barbara

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Please share a bit of your story:
My son was John was born with Congenital Diaphragmatic Hernia, sever pulmonary hypertension , a hole in his heart and one foot in the doorway to heaven. He’s been on a vent for 7 years,  and a trach for 8 years. He has spent over 400 days in the hospital. I am just his mom.:)
What/who is your inspiration?
Johnny of course, he reminds me not to give up and to work harder for a better future for all of us. He reminded me when he was born about the gift of life and how precious it is.
How has your story defined who you are today?
All I have done the last 9 years is be John’s mom. The last year I have finally been able to get out and be Barbara. He is medically fragile but better now after having the ventilator and trach removed. Its all I knew for 8 years, how to care for Johnny…
Why should your story be selected to be featured on our blog?
I don’t know why it should be selected. A friend told me I should send it on because I deserve to be pampered.:)I really feel like I am just doing what any other parent would do if they had a child with special needs. It has its ups and downs.
What encouraging words would you give to someone who shares a similar story?
We can not do this alone! Reach out and network. Get to know other parents dealing with the same problems. Its a crazy roller coaster so you can not get off  with being alone in the process so you might as well make some new friends. Oh and also read, “Welcome to Holland.”
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