Wednesday, January 28, 2009

Pay it Forward

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!

18 comments:

Star said...

Like you, I met a wonderful group of women on the knot. Not in a million years did I think I would gain friends through wedding planning. They have been amazing. Starting with the wedding, we bartered with each other to help with set up. Then when my husband and I were in an accident over five months ago, one knottie was the first person I called. She slept in my bed, helped me shower, and just took care of me. She is my best friend now. Then when my husband passed away, there was a core group there. They have helped me over the last few months with every breath I take and every moment that I need a little help.

Heather Wyman said...

Happy to help... my heart goes out to them. Also, do they have a webaite or linkback to help spread the word?

Emily said...

Oh megan! How heartbreaking! I am bawling! Thank you so much for posting this - you are one of the kindest most caring people I have ever known.

Thoughts and prayers for the family!

BreezieGirl said...

More thoughts and prayers for this family...

Mandy said...

This is just horrible. I can't even begin to imagine what she is going through. I'm in Indiana too...such a small world. I donated...thanks for posting the link. They will be in my prayers.

Wendy said...

<3 like your new look. Hope the girls are feeling better.

Kelly said...

This is the sadest story I think I have ever heard..It breaks my heart to think that these parents have to watch their little girls pass..I will definately be donating..wish there was more I could do!

Anonymous said...

How sad for this family - hope they just love on these girls morning, noon and night. I SOOOO love your new look - the girls are getting so big and cuter and cuter each time there are new pictures. Hope they are both feeling better.
An admirer from the East side of New Jersey

A Mom in Jacksonville, FL said...

LOVE your new layout.

Feel SO badly for the family. Thank you for sharing their story, I'll keep them in my prayers.

Does the mother also need "web support?" If so is there a blog or link where we can send well wishes to the family directly?

tbonegrl said...

I love the knot. I have met so many wonderful people there.

Thanks for reminding me to post about this too!

Anonymous said...

There is a couple whose 1-year-old daughter also has Werdnig-Hoffman, or SMA Type I. Their website is gwendolynstrong.com. They are so knowledgable and could prove to be an invaluable source of information and support for your friend. I have learned so much about this horrible disease from following Gwendolyn's story. I will keep your friend's family in my prayers.

Anonymous said...

I have never heard of this disease before......I can't imagine the pain and anguish this family is going through....They will be in my prayers .....We all need to "pay it forward"...Thanks for sharing their story ....I'm truley touched....

Parcells Custom Painting said...

Megan, thank you for posting this... I'm going to make a small donation right now. My prayers are with the whole family.

nestie melissaandeddie said...

I too was amazed at the resources the Knot and then the Nest provided, but most of all by the WONDEFUL women I met on those boards and like you, some have become my dearest friends. One is a co-worker now, as I got her a job. It is quite the supportive family that is born on these boards and I am so glad I have found them. It is through those boards I heard of you and your triplets, and began to follow your blog. For that I am eternally grateful bc my life is better for knowing baby Jacks story. So I thank the knot and the nest, and you for sharing.

Anonymous said...

Megan
I am a CT nestie who got so much out of the board when I was newly married...I read you blog all the time and love hearing about the girls and Jack...I am happy to have the chance to donate to this wonderful family-thanks !

Cristy
CT Nestie

Kristi Palmer said...

I would love to be able to talk to this family concerning the twins. My family went through the exact same thing with our son...I am one of those people that have been there done that and would be more than willing to talk to them. If there is anyway that you could give me your e-mail address so I can give you mine to give to them.

Sandra said...

Megan thanks for posting this. I've been meaning to donate to them. And you my friend, i am so happy that i met you IRL and care so very much for you and the girls.

Sandy

Patyrish said...

I too have a group of ladies from a mommy site that have been SO amazingly supportive of me since Makily was born. I know how incredibly touching it is to have women you have never met lift you up in this way. I am so glad you have this support.

Does Brooke have a blog for her girls? If so I would love to follow along as I understand some of what she may been going through.

I will keep them in my prayers.