Thursday, April 14, 2011

Progress with canes

A few weeks back I finally got around to buying Ben some canes of his own...of course, he wanted red ones, just like "Sarah", his CE classmate.

Up til now, he used canes just at CE and they were tripod canes...not near as steady as Sarah's quad canes. It has taken a few weeks, but Ben is finally convinced that he CAN walk on his own with the canes. I knew he could, I just had to convince him.

So...without further ado...check out this video of Ben walking with his canes ALL BY HIMSELF!

Monday, April 11, 2011

Guest Post - Some advice

I introduced you all to Tracey at The Trousdell Five a few weeks back, just after her son, Asher was diagnosed with CP. Tracey asked me to do a guest post for her and after many stop and starts, I finally managed to write something that I HOPE is helpful. Go check it out when you get a chance, and stop by here and let me know what I may have missed!

Friday, April 8, 2011


(Warning: Lately, most of my blog posts have been very happy and positive because let's face it, life is good. Very good. But something happened this week that caused some tears and some reflection and I started feeling pretty sorry for myself. So in an effort to be honest and share the highs AND lows of my life, I decided to share it with you.) I follow A LOT of blogs. Mostly blogs by moms of kids with CP...but I also follow a lot of blogs by moms of kids with other types of special needs. Even though the medical jargon may be different, the roller coaster of emotions that we're on is the same. I enjoy reading about Maya at Uncommon Sense. I started following this blog when I came across her very popular post called "Amsterdam International". If you haven't read this post, then you MUST DO IT RIGHT NOW. Anyways...this week Maya's mom posted some old videos of Maya as a baby. Video #2 is precious...featuring Maya's first laugh. Instead of laughing and smiling along with Maya and her parents, the tears started to flow. I don't remember the boys at that age. At all. I do have a few photos. But no videos. And I certainly don't remember at any point enjoying Ben and Daniel in that way. Doesn't that sound horrible? But it's true. I routinely describe the first year of their life as the worst year of my life. Dealing with Ben's CP diagnosis has been a walk in the park in comparison to that first year. So...I feel gypped. Totally gypped. I didn't get to give birth to ONE full-term baby. Instead, I had two babies that were born 10 weeks too early. I didn't get to take that one baby (or even two babies) home from the hospital with me. I had to leave them behind. I had to wait 57 days and nights before I got to bring them home. And when they came home, they were still on wires. I had to cut holes in any sleepers that had zippers instead of snaps for their wires to come through. I remember the first time that I successfully breastfed Daniel. Instead of feeling happy about it, I had tears streaming down my face as all I could hear was Ben screaming as they put an IV into his head. But most of all, I didn't get to enjoy my babies. Ben had colic. Daniel had SEVERE reflux. We were alone with no friends or family nearby. They came home in November with the warning to keep them at home and only take them out for doctors appointments. So we stayed home for 6 months. I didn't even dress them up in cute outfits. I was too tired. It was too much work. I just left them in whatever they were wearing (a sleeper) until it got dirty and then they got changed. I remember saying thank you to my husband for coming home from work every night. Home to an exhausted (and likely depressed) wife and at least one (Ben), if not two, screaming children. If someone had let me out to go to work, I'm not sure I would have come back. So yeah. That first year sucked. And I didn't even realize how much until I saw that video of Maya. Of her laughter. And of her parents truly enjoying her. And I wished that I'd had that.

Monday, April 4, 2011

The Road to Acceptance

Ellen from Stumbo Family Story asked me to do a guest post for her. Something about how I came to terms with Ben's CP diagnosis and acceptance. Ellen and her husband adopted Nina last year from the Ukraine and Nina has CP. So after a few days of thinking and writing, I finally came up with a post called The Road to Acceptance. Go check it out when you get a chance and come back and let me know what you think.