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Today my heart is heavy.
Today my heart is heavy. I miss you. I miss you so bad. Today my heartbreaks just a little bit more than it normally does. I should be skyping with you while you finish lobster and chat with your “Granny’s boys”. I still find it hard to believe this is my life now. That I’m going to be alive so long with you. Today I finally and fully understand the mixed emotions you felt on Mothers’ Day. You lost Reta (your Mom#1 as you called her) after only 8 short years the day after Mothers’ Day and then once you were a Mother you had us rapscallions eagerly awaiting to give you cards,…
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Mothers’ Day 2015
I’m hurting. It’s the first year I won’t be able to Skype you for Mothers’ Day while you anxiously await eating the lobster you got every year. You loved the cards more than anything. I’ll always remember how much you loved cards. You never threw one out. But I’m lost. Tomorrow the internet is going to be flooded of photos of my friends with their Moms, statuses about their Moms, photos of brunches & dinners & smiles with their Moms. It just reminds me I’m motherless in this big ol’world. I certainly don’t need a day to remind me but I have never had a day pass where I’ve forgotten that fact. I…
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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.…
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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…
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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…