I expected joy. I expected so much happiness. I didn’t expect the tears. On the way home from the airport after my weekend in San Diego I started to tear up. I was telling my husband all about the medical conference I was at that was focused on congenital disorders of glycosylation, the genetic condition our middle son has. I told him there was so much buzz and excitement regarding research. The medical community and parents are determined to find a treatment and cure. There’s hope. But when I talked about the kids I started to cry. It was hard. It was hard for me to see the children walking…

I vividly remember diagnosis day. I recall scouring social media and connecting with families from across the globe. I watched videos of other children affected by congenital disorder of glycosylation. I soaked up words of advice and encouragement. I thought I knew what our future would bring. The one thing I wasn’t ready for was the spectrum of severity. I wasn’t prepared to be severe. I’m going to be honest and tell you that there are so many days I feel inadequate. I feel like I’m not doing enough for our son. I question that we should be doing more, I wonder what else there is out there. I search…

I recently read an article where the writer was a mom of young kids and her life revolved around them. She was trying to explain and apologize to her friends because she was “in the weeds.” She was too busy caring for her little ones who required so much of her to be a good friend. She felt bad for not responding to emails or phone calls. And she reminded her friends that it won’t last forever. My immediate thought was it will for me. The season of our son requiring everything of me isn’t going to end anytime soon. He will need me to tie his shoes year after…

I met a friend for coffee recently. Or maybe I should say I briefly saw a friend at a coffee shop. I tried. I tried to get out of the house and have an adult conversation, with a friend. Christopher had a different idea. Last weekend I made plans to have coffee and enjoy a fall walk with a friend. I was looking forward to getting out and grabbing a pumpkin spice latte for a treat. I walked into the coffee shop full of smiles pushing him and strolled over to the table they were sitting at. Everything seemed to be going well…until it wasn’t. He started screaming. He started banging his…

As parents we all have dreams for our children. Dreams for a productive, joyful, and meaningful future. The older Christopher gets I start silently tucking things away into a “never” category. And before you think that I’m being negative, it’s not. It’s realistic. Just as I’m realistic that our college son will never become a belly dancer and our six year old will likely never be a chef. There is not even a part of me that believes they will achieve those things in their lives. But for Christopher it’s different. I feel like if I accept the “nevers” now maybe they won’t affect me in the future. It’s my…