One Year with Beckwith Wiedemann Syndrome

I never thought this day would be able to look back on all the heartache, the unknown, the scariest moments of my life only to view it as a distant memory. Now that Jake is one, I can reflect on everything we've been through this year, and what I have to say is this: IT WAS ALL WORTH IT, every tear, every smile, every milestone. I still remember the first day Jacob was born and the doctor uttered the one earth shattering word "syndrome". I wanted to hide him from the world and pretend that nothing was wrong.  I didn't even post pictures of him with his tongue out because I feared the judgement and ridicule he would receive from others. And yet here we are today, with a website dedicated to Beckwith-Wiedemann Syndrome and raising awareness for others. I have learned to embrace all that he is, and I couldn't be any prouder of him already. Jacob's strength and bravery amazes me every day and he continues to teach me that it is okay to smile through the storms and dance in the rain! 

This video is for all the new families on here. The beginning months are emotional and really do test your strength, and some of you have gone through situations way worse than ours, but all I can tell you is how amazed I am at the difference a year makes. Although it may never get easier, it does become more routine. I remember desperately searching for stories of BWS babies during the first year, so I hope this video gives you some hope and encouragement that things will get better, even if it doesn’t seem like it right now.

Love and blessings to you all and thank you for letting us share our journey with you.