Every 6 weeks I'm reminded of the reason I dread these appointments...Read More
I never thought this day would come...to 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.
I just had to start our blog with a humorous story. In the midst of everything going on we all need a little laugh now and then…
Most of our friends had young children before us. So we were well equipped with countless stories from getting peed on to diaper explosions. So when it was our turn to have Jacob, everyone warned us that our adult conversations will change to baby jargon. And sure enough it did.Read More
The long awaited day. The day I prayed and hoped for is finally here. The day I get to bring my newborn baby home. For all you parents who have spent time in the NICU, I applaud you. It is not an easy experience, and not one I wish on any new parent.Read More
I never thought I would look back and tell God “thank you” for Jacob’s jaundice. At the time I was resentful that I could not hold my newborn baby in my arms as other moms do. I had to feed him under the multitude of lights and watch him cry from laying on the stiff hard bed, and all I could do was lay a hand on his belly and say, “It’s going to be ok, mommy is right here”.
People always say God works everything out for good, but I never truly believed it…until now.Read More