Around the time I got engaged, I was watching The Apprentice and there was an episode that involved a website called The Knot. I decided to check it out, see if it could help me with my obsessive wedding planning.
I had no idea that it would literally change my life in almost every way. I guess I owe Donald Trump, of all people, a big fat thank you.
Through the message boards on the Knot I not only found the obvious things like a wedding photographer and cake ideas but I found a wonderful group of women who would go on to become some of my best friends.
After you're married, you move from The Knot to The Nest, and the Nesties as they're called have done more for my family than I could ever explain. When I told them i was pregnant with triplets they were overwhelmingly supportive. They raised a huge amount of money to buy us an incredible triplet stroller and threw me a truly kick @ss baby shower.
And then, when Jack was sick... words cannot explain the support and help they gave to us. Again they raised an incredible sum of money to help us during the time Jack was in Philadelphia. They cooked us dinners, sent gifts, cards, even diapers. They prayed, and prayed, and prayed for my tiny boy. They came to Jack's funeral. They have held me up and kept me going in this long year since he died.
I owe them more than I can ever explain and will never truly be able to repay all their kindness.
Now, another Nestie, a mom on the Multiples Board, is in the midst of something truly heartbreaking. Her beautiful five month old twin daughters have been diagnosed with a genetic disease called Werdnig-Hoffman Disease. Children rarely survive to age two with this form of the disease. Imagine having to watch your children suffer with this cruel cruel disease.
Here is an excerpt of a post Brook made about her girls' diagnosis:
"Both girls have been diagnosed with Werdnig-Hoffman disease. It is a rare genetic disease that is untreatable. We are going in Monday to test our blood as well to see if it is something we passed down to them or if it was a mutation they experienced.
They have the most severe form. Their lungs are going to slowly give out b/c the muscles will not be able to help them breath anymore. They are both on feeding tubes, oxygen at night and monitors. They will never be able to sit up or hold their heads up b/c their muscles just can't take it. They might never talk b/c they have to choose between using their energy to breath or to do other things and they instinctively know to breath. Their brains are fine and they do so well interacting with us and each other. They love to be read to and have toys in front of them, they just can't reach them and hold on to them to play with them on their own.
J and I are going to have to decide how far we want to take this...some babies can make it longer if they're given a trach tube and have a machine breathing for them. At this point we're not sure that we want that kind of life for our sweet babies. We have a lawyer friend who is going to help us draw up living wills so we don't need to make those decisions under emotional distress. I am going to look into taking a leave of absence from work to be with them, but we're not sure if we can do that financially at this point."
Please, if you can, help this family. Even just a small donation, help them to afford to stay home with their beautiful girls and spend every moment with them. If I could go back I would never have left CHoP, if I knew what was to come, that those few months were all I would have with Jack I would have spent every second with him. Unfortunately, there's not much medically that can be done to help these babies but we can all help give them that..... time together.
Thank you so much. I know, I ask and ask and ask on here, and I am consistently amazed by the generosity of the people reading this blog. I am asking again.... please, please, even a small amount will help this family.
Click on the button below to donate through paypal. Thank you, thank you, thank you!