Monday, December 17, 2007

Friends

Two of my Nest friends came over on Saturday and brought us the most amazing, amazing gift. I am still in a bit of a daze about it all, and wish I could better express my gratitude then just saying 'thank you', but I don't know what else to do. The amount of people who contributed to help us is overwhelming, the amount of money they raised is overwhelming. I know it took a lot of time and effort on many people's part also, and I can't say thank you to them enough (especially Jess and Melissa, I think helping our family has become their part time job).

My favorite favorite movie in the world is "It's A Wonderful Life" - I keep telling people I feel a little like George Bailey. We watched the movie the other night and while I always cry at the end, no matter how many times I've seen it, I cried even harder this year. We have so many friends who have done so much to help and I know would do anything, give anything if it would mean Jack got even a little bit better. Friends we've never met, friends we'll never meet in real life, but who cared enough to give something to a virtual stranger.

All I can really do is say thank you - thank you for the financial help, thank you for the dinners and homemade desserts (all so appreciated more than you can ever imagine), for the diapers, the detergent, the prayers, the prayer cards, the thoughts, the kind words, for everything. If nothing else good ever comes out of this, the good in literally hundreds of people has come pouring out all thanks to our little Jack. He is a special baby.

I wish I had better news to share about him though. We did get what we thought was good news last week, that his muscle ultrasound was totally normal and the metabolic specialists thought he didn't have any kind of metabolic problem. But I realized today talking to the doctor, it's not really a cause for huge celebration. Jack is still sick. He still has all these things wrong, and he still cannot breathe without the vent. The fact that many bad things have been ruled out, doesn't mean there aren't thousands of bad things still left.

They're now focusing on two neuromuscular diseases they think might be Jack's problem, one of which is so rare there is only one doctor specializing in it out of Seattle. They've sent him all Jack's records and we're waiting to hear back. While neither of these diseases are good, neither are necessarily fatal either, nor or they progressive, meaning he wouldn't get any worse than he is now.

Except for the whole lung/breathing thing. Nothing else matters if they can't get him to breathe on his own, and he is not moving any closer to doing that. They're going to have a big family meeting with us on Thursday or Friday to discuss the results of all the specialists who've seen Jack and decide where to go from there. I didn't get a real good feeling about it from the doctor today. At all.

But like I said before, I am trying to focus on today, because there's not much else I can do. Today, my mom and aunt and I went and visited Jack, drove through snow and ice to see him and agreed there is no one else in the world we would have done that for (I said maybe George Clooney but no one else agreed.... ) We all got to hold him, and love him, talk to him, kiss him. My aunt sang Christmas carols to him, my mom cried because she had never held him before. I told him if kisses were cures he'd be the healthiest boy in the world. Today, again, he was here, and loved and there's nothing else I can really do.

I am going to buy him this tomorrow as his Christmas present, and put it in his crib at the hospital, the nurses said he can listen to the music, and we can even record our own voices on it. I'm going to use some of the money that everyone gave to us to buy it. I'm going to tell him it is a gift from so many people who love him and want him to get better.

I always thought Jack looked like my grandfather, who I loved very much and died about 10 years ago. Tonight we were watching the Giants game, and they showed a restaurant in Manhattan - my grandfather's favorite restaurant, one he and his wife ate dinner at almost every single night. What are the odds, of all the restaurants in NYC, this little German restaurant would be the one they showed? I felt like it was a sign, that he's watching over Jack, and he's taking care of him too, and no matter where Jack is, he'll be with him. It made me feel a little better.

Now I need to go to sleep before my little angels wake up (who lately have not been too angelic at 3 am when they're screaming). Thank you again, I can't say thank you enough. PJ was completely blown away, my mom cried. We are all so grateful.

26 comments:

Anonymous said...

Reading your blog brought tears to my eyes...well it does a lot and I thank you for that. I don't post comments a lot but I check your blog daily for updates. You and your family are in my constant thoughts and prayers. I just know that Jack will get better and that Katie will be as perfect on the inside as she is on the outside.

I live in Seattle and trust me, we have some of the best pediatric doctors in the nation at Childrens Hospital. So whomever has Jack's chart will take great care of him and if he can't find the problem someone will that he knows.

Its amazing how a chat board can form a family. But believe it and feel it, we are all here supporting you and lifting you in times of need.
Liz (mrskiltlifter)

Anonymous said...

It's the least we could do Megan.

Your family continues to be in my thoughts and prayers, each and every member. All this love and support you have surrounding you and your family has to pull everyone through. Everything will be alright somehow. And I hope with all my might and being that it is much much better than that. You and your little ones deserve as wonderful life as one can get.

Thinking and praying for you all.

Anonymous said...

Yourwelcome....that's only a little bit of the behind the scenes work people are doing with prayers and such. There are hundreds of people pulling for Jack. I hope the best for Jack and your family.

dinkey said...

We are all praying for you and your family. You are in my thoughts and so are your beautiful children.

Anonymous said...

Megan- Hope the food/money help some. You're so strong. I don't know what else to say- everything I can think of sounds so silly, like not enough...and usually I'm so good with words. ;-) We're all pulling for Jack and the girls, you & PJ.

-Tara (TSD)

Melissa said...

Are you talking about Rolf's? That place is GREAT! I have no doubt that your grandfather is keeping very close watch over Jack...that's what angels do for us.

Call me if you need anything. We're thinking of you all...

Anonymous said...

Many children can live on having hooked to a trach and having help to breathe. I am so sorry you are faced with such decisions...it isn't easy being the parent of a special needs child......
www.caringbridge.org/visit/rawlinsboys

Chelsm said...

Megan-Ive never posted here but I check your blog everyday for updates. You and your family are in my thoughts every single day and I pray for you all. Its to the point where my husband and coworkers ask me for updates too. I just wanted to reach out to you and let you know how many lives you've touched. The first baptist church in Caldwell will be praying for you.

Sommer said...

Megan, youre so strong. You blow me away!

Still praying for you and your precious family!
I love how you saw signs from you grandfather, i really like to believe that there are angels watching over us, and maybe your grandfather is watching over all of you!

If you liked the gift, then I bet you can only imagine the prayers that are being said as well!

Youre doing a great job!

Anonymous said...

Megan,
Words can not say what we all feel for you guys. Jack is always in our prayers and thoughts. Your girls are so precious. You are one of the strongest people I know. I am glad that your mother got to hold him. Your grandfather is watching over him also. Big vibes to all of you.
nicole(mikeandnicole05)

Stacey/Mazzy said...

WOW! Thank you for updating. I am at a loss for words. I wanted to tell you that you are all in my thoughts and prayers. It's nice to hear that your grandpa is watching over you. God Bless.

Heather said...

You always seem to make me laugh or cry - today was a tearful visit. I hope Jack loves his new gift, I think it is a great idea. Many vibes and prayers for your visit later in the week -- I hope it brings some good news! In the meantime ((HUGS)) for the girls!!!
Heather
friend-sister-wife-mother

Gillian said...

All of our continued thoughts, prayers and vibes to you guys.. thank you for the update on Jack; I know your Grandfather is keeping a close watch..

If there is ever anything you need..

Anonymous said...

Continued thoughts and prayers Megan. I hope our nest gift helps but you are stronger than words even though I am sure at times you feel you are not.
Hang in there.
Lisa
(knittygrl)

Ali & Dave said...

Megan,
Praying for your family every day. I pray for Jack's health, Katie's health, Charlotte's health, your strength and the strength of your family.

God Bless,
Ali
Dec2005bride

Anonymous said...

Megan as always our thoughts and prayers are with you, Jack, PJ and the girls. I'm glad you saw a sign from your grandfather to know that Jack has a wonderful Guardian Angel watching over him.
Natalie042205

Alicia said...

megan - i hope you know that i wish i could more. Jack is one very special boy. Good luck this week and know that we are all thinking of you.

Marie said...

Megan-

As always you guys are in my thoughts. I've become addicted to your blog. I will continue to think very healthy thoughts for little Jack and the rest of your family. I have faith (and I don't have a lot of that these days) that Jack will pull through this...

I wish you a christmas miracle!

Love
Marie

Sarah said...

I constantly check your blog waiting to hear updates on you and your family. You are constantly in my thoughts and prayers. Keep strong and positive, it will all pay off. Little Jack sounds like quite a fighter and I'm sure he'll make it thru.

Notwifezilla said...

Megan,
My thoughts continue to go out to Jack and your entire family. I am constantly impressed with the level of faith you continue to show even after all these obstacles. Jack, Katie, and Charlotte are so lucky to have you as their mom.
All the best,
Jackie

Catherine said...

Your entire family are in my thoughts and prayers daily. Reading your blog entries always brings a tear to my eye.....the love and strength that you all have is amazing.

We all wish that we could do "more" for you, but we know that the prayers are what you need most, and you've got those in abundance!!!

Catherine (cat429)

Anonymous said...

Megan,

I found your blog from a link on one of the Nest boards. I check daily, sometimes twice a day, to see what news you have for your little ones. I love the pictures, all three are so beautiful! Your stories either bring a tear or a smile to my face, and I admire your strength.

I also live in Seattle, and was once a patient of Seattle Children's Hospital myself. I truly cannot say enough about their doctors, nurses and even the volunteer staff. Every single person I came into contact with from the hospital went above and beyond with their kindness. And they really know their stuff!

I have you and your husband, Jack, Katie and Charlotte in my prayers. We all do. May God bless your sweet family.

My name is Tammie said...

Positive prayers and thoughts your way. Both you and Jack have been in my thoughts daily.

Anonymous said...

We're here for you because we want to be! Continued thoughts and prayers!

Sandy said...

We're praying for jack Megan. We won't stop until he's safe and all better. i wish him tons of peace too and not too much pain while going through all this. Lots of hugs to you and your family.

Anonymous said...

Megan - your strength continues to amaze me. I was happy to be able to contribute in any way I could. You are all in prayers everyday. Hang in there.

Kathy