• 2018,  BabyA2012,  family

    Noah đź’•

    It’s with the heaviest hearts we must say that our beautiful Noah has passed away unexpectedly in his sleep this morning. John and the EMT tried everything but were unable to save him. We are shattered. The last 6 years and 2 months was not long enough. We wanted more. We needed more. We thought we had more but that wasn’t the plan and our lives will forever be missing the years we didn’t get. But the years we did get were amazing. Sure it seemed daunting and some times was really hard but it was worth it. It was worth every.single.second. He had the best life and felt love…

  • 2015,  BabyA2012,  Pics,  reflection

    Motherhood

    3 years ago I took this photo. It turned out to be my most favourite photo I’ve ever taken. It’s a day I’ll never forget. I was past my original due date and I was still in the hospital hoping and praying I’d be home sooner than later. I was done with this surprise. I was done being separated from my family. I was done pumping behind a curtain. I was done having nurses, Doctors, residents, therapists, social workers coming through the door interrupting a nap/a phone call/lunch/cuddle time/a rare quiet “me” moment. I was done. All I wanted was to cuddle my newest son and be left the frick alone.…

  • 2015,  BabyA2012,  reflection

    Forever Changed

    Today used to be a day of anticipation because I love birthday cake and well, tomorrow is my birthday. But 3 years ago these days changed forever for me and I’ll never forget. It was beautiful and sunny and warm, much like it is today. We opted to have a family dinner with Elijah and afterwards John would change the tires on the car. We never missed a feed for Noah during the day. NEVER. One of us was always there, except for the 3am feed. We took that one off in hopes of getting some rest. Well wouldn’t you know, just as John has the tires half way changed…

  • 2015,  BabyA2012

    World Rare Disease Day 2015

    Today is World Rare Disease Day. CHARGE syndrome is on that list. I hadn’t heard of it before our diagnosis, like almost every one else. It’s scary to be told your child has something no one even knows the name of. It gives you a feeling of being alone that I can’t explain. That is until you find your people. The other people in world who “get it”. And there are a lot of “us”. CHARGE syndrome affects 1 in 10,000 births worldwide. Visit Noah’s News and the CHARGE syndrome foundation for more information. There are over 7000 distinct types of rare diseases and syndromes, and more are constantly being discovered. There…

  • 2014,  BabyA2012,  BabyA2014

    So why did I go on Hiatus from the blog…again?

    I was back on track and doing pretty well keeping people up to date with life and pregnancy and all things us. Then once tests came back and gender was revealed I felt weird talking about and celebrating “normal”. It was like I was taking away from our Noah journey and it felt weird to me to make any sort of deal over the health of O. As if any celebration was a kick in the pants to Noah. I know, couldn’t be further from the truth but it was a strange place to be in. I love Noah and every thing about him and the memories I have of his…

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