Category - disability

1
Sometimes
2
The Beginning—This Is Not The Life We Ordered

Sometimes

Sometimes when you have too much to say, you end up saying nothing at all. I’ve tried to write many times this week. But instead of writing a word, I clicked “close” every time.   Sometimes when life is too hard, you shut yourself off. You assure everyone around you that everything is fine and you try to believe it.    I feel guilty because others have struggles much harder than my own. I have a child with special needs. So what? So do many, many other parents. Our story is not unique. Avery is healthy and happy and beautiful and I should feel lucky. Or so I have been told. But some days, instead of lucky, I feel frightened, frustrated, angry or sad.   I’ve always had the attitude that everything will be okay. This is our normal and life is good. It’s not perfect, but it’s good. It seems you can only go on for so long fooling yourself into thinking your life isn’t hard.  My life is hard. Avery is funny and loving, but she’s difficult. She doesn’t understand “danger.” She is always at risk and it’s taxing living in a constant state of fight or flight.[…]

Read More

The Beginning—This Is Not The Life We Ordered

My husband gave me a tacky beer cozy—you know those foamy cups that insulate your bottle? “This is not the life I ordered!” was written across it in neon letters. It was a silly gag gift for an occasion I can no longer recall. When our daughter was diagnosed with the genetic disorder that would change all of our lives, I dragged out the beer cozy from a box in the basement and announced that I would be using it to hold all future beverages.  The Beginning: When our daughter was four months old we had concerns. This baby, our second child, wasn’t gaining weight, she refused to nurse or drink from a bottle, and she wasn’t achieving the milestones associated with her age. By six months we were worried. By seven months we were frantic. Our family doctor (the only medical professional who actually listened to us), was at a loss. She ordered the necessary genetic testing, and in the meantime referred us to a pediatrician who I took Avery to see several times. On the last visit, near tears, I begged him to take our concerns seriously. My husband and I knew something wasn’t right. His response to my plea for[…]

Read More

All images and text are copyright © 2019 Forever In Mom Genes