About

Welcome!  I’m so glad you stopped by.  My name is Dawn, married to my handsome guy for 23 years.  Together we have 3 energetic boys.  We are a recently “retired” Air Force family just getting used to the idea of settling down in one place!

My blog chronicles our adventures raising a child with special needs and what that looks like for our family.  Our youngest son has a balanced inversion of chromosome 12, learning disabilities with scattered skills, fine motor and gross motor delays, speech delay and unmatched cuteness.

In addition, Zack has suffered from severe chronic constipation for years causing an enlarged sigmoid colon.  This past summer he underwent an ileostomy to divert his stool away from his large intestine and out through his abdomen through a stoma.  This allows his large intestine to heal and shrink back to normal size.  Unfortunately, he has had many complications and is currently living with a prolapsed stoma.  That means that by the end of each day at least 6+ inches of his intestines are outside of his body.  Most days recently, it has been more like 9+ inches.

We are currently in the process of being referred to Cincinnati Children’s Hospital with the hopes of finding a surgeon who can help Zack.  We hope you are encouraged by our story and maybe even learn a thing or two along the way!

3 thoughts on “About

  1. Hi Dawn, I saw your latest blog entry that was posted from an Air Force family friend of ours and I couldn’t help but think I recognized your last name. My name is Kathy Gentil, and my husband Matt Gentil was also in the Air Force. We were both missile launch officers at the beginning of our careers at Ellsworth AFB. I retired from the Air Force in 2011 after exactly 20 years and 9 days so I could be a stay-at-home mom to my 2 children, one of which is a special needs child and very rare in the combination of things he has. My son Grant has Down syndrome as well as autism. And then to make things interesting, he has the rare medical condition of pulmonary hypertension which is an issue within the lungs that creates extreme pressure within the heart in trying to oxygenate the body. Until I read your blog, I never even knew there was a “rare disease day.” Pulmonary hypertension is not as rare as the condition your son has, but more rare for children to be diagnosed vs adults. There is no cure and life expectancy after diagnosis is 5 years. We are blessed as Grant appears to be one of the few that responds to the trial meds and he has become more stable as he has gotten older. His early years were a mess. We live in northern VA and I noticed that you mentioned you all live in MD. We lived in Crofton at one point over the years during my first Pentagon tour. Anyway, I just wanted to say you are not alone but I know what you mean when you feel like you are. Prayers for your son and your family.

    • Kathy,
      Thanks for writing. Our missile tours were Malmstrom and Minot. I’m sure we know lots of the same people. I am sorry to hear about Grant, but am glad that he seems to be responding well to the trial meds at the moment. Do you receive your care at Walter Reed or a civilian hospital? I’ll be praying for your little guy and you, too!
      Dawn

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