• 2012

    Doctors, Therapists, & Nurses – Oh my!

    We had made it. It was a month of the saddest, most confusing, exhausting, love filled days I could ever had imagined and it was over and we were heading home, just in time for Mothers’ Day. But I wouldn’t have made it through without the support of friends, family, nurses, and doctors. The outside support was outstanding and what got me through day to day, especially those days where I was away from J & E and all I had were the nurses, our amazing Ped. at Children’s, and Skype. Just recently I’ve been hearing a lot of complaints and regrets about Doctors and nurses in the early days…

  • 2012,  BabyA2012

    Did you know I have a sighted child?!?

    Because I did. I do. But hearing those words come out of the opthamologists mouth last Thursday was enough to make J and I well up. Numerous times. We knew Noah could see and his vision has really developed in the past month! He is a rockstar afterall! But just hearing it from his specialist validated what we have been seeing at home. But she kept saying, he’s definitely sighted and everything he’s doing is typical for a 6 month old. I should have recorded it so I could listen to it at anytime. Typical.  Sighted. Music to my ears. (Sure he’ll have some deficits & will eventually need glasses…

  • 2012,  BabyA2012

    Repeat after me

    Delay doesn’t mean can’t or won’t. It just means delay. Delay doesn’t mean can’t or won’t. It just means delay. Delay doesn’t mean can’t or won’t. It just means delay. *deep breaths* Just keep working and loving. Whatever will be will be. 🙂

  • 2012,  reflection

    What’s in a name?

    Everything. Absolutely everything. A diagnosis. A label. Finality. Funding. Acceptance. A common bond. We officially got the 100% diagnosis of Noah yesterday. No more clinical diagnosis. There is no refuting it by anyone. I knew it was going to be an almost bittersweet phone call and I expected to have mixed emotions. But I had very intense emotions that I wasn’t counting on. It was like the rug was pulled out from under me once again. I was hysterical for a brief moment. But, I knew this was what he had before even leaving the hospital. I was prepared to fight for the same diagnosis if the genetic testing came…

  • 2012,  BabyA2012,  reflection

    What Should Have Been

    April 1st. The day I had been eagerly anticipating for what felt like eternity. The day was quickly filled with nervous anticipation and a flurry of phone calls being made trying to make arrangements. This was happening. It was the day I was going to become a mother of two. I was ecstatic. J was over the moon. Eli knew something was about to change and was so cute and excited and he didn’t even really understand the reason. But he knew something special was going to happen! One hour I was home with my oldest son and 1.5 hours later I was holding my newest son in my arms.…

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