Thursday, September 29, 2011

Lovely day for a blog post

I really love the volunteer work that I do at Children's. It has nothing to do with Cystic Fibrosis, so its a welcome break from something that's a part of our lives day in and day out. I love meeting other families and letting them know that I care about them, that I've sat in the chair they're in and paced the hallways they're walking up and down. I've worried and wondered and cried and prayed just like they are for their sick little babies. I've been in their shoes. And when they smile at me and thank me for stopping by to talk to them even just for a few minutes it makes it all worth my while.

I met a family last night who recently received a CF diagnosis. Its not very common, as CF isn't very common, but I was able to say to them, "I've been there" and mean it in the truest sense. They asked a couple of questions, but, like us, you're kind of at a loss at the beginning, not knowing what to ask or expect or tell people or anything. You really just don't know what you don't know. I shared my email address and this blog and I hope that the family will feel comfortable reaching out to me if they need support.

Last night I watched School House Rocks - I'm Just A Bill so that I could understand a little better how Congress works. I really am not very government literate. I feel like the things I know, I know very well, but outside of that I must turn to my trusty husband who can always break it down for me. It was an intimidating part of taking on the role of State Advocacy Chair. I knew that there would be communications with political figures, and I didn't want to seem like an idiot when I was talking to them. I like to think of myself as reasonably well educated and fairly well spoken, but government and politics aren't my specialty. As long as someone can help to explain it to me and I can take the time to learn and understand myself, I'm comfortable presenting it, and I feel like that has taken me pretty far in the Make Every Breath Count Campaign.

In March, there is an event called March on The Hill where the CF Community joins together in DC to tell our story (at least that's my understanding). Unfortunately this year we won't be able to go with Quatro due to make his/her appearance around March 21, but I'll jump on any other opportunity that I have to go and speak my piece to the people making the decisions that will influence Drew's life.

Speaking of Drew, we are about a week in on our Tobi and Cipro antibiotics and all is going well. As has been the case in the past, the inhaled Tobi seems to irritate his airways a little bit more than they're already irritated which means more coughing and more Atrovent treatments to keep him open. On top of all of that, I think the girls finally passed along their colds to him so we've got a noisy breathing, coughing, snotty little machine on our hands. I've braced myself for another long winter but I'm hoping this year isn't as bad as last year was!


  1. Send Flowers to India, Flowers to India, Send Flowers in India, Flower delivery India, Send Online flowers to India, Same day flowers to India, sending flowers to India, send flowers to India, Flower delivery India, Online Flower delivery in India, flowers online in India Send Gifts to India, Send gift to India, online gifts to India, Mother’s Day flowers to India, Rakhi to India, online gifts India, sending gifts to India, order flowers to India, online flower delivery India Flowers N Wishes is an online Florist. We deliver Flowers, Chocolates, Cakes, Dry Fruits to all the major cities like Delhi, Mumbai, Chennai, Kolkata, Bangalore, Chandigarh, Pune Etc. We deliver Fresh Flowers like Roses, Zebras, Lilies, and Carnations etc. on different occasions like Valentine’s Day, Weddings, Anniversaries, Birthdays and all the occasions which one can think.
    You can book your order online at and we will deliver your emotions and feelings in the form of flowers to your loved ones. We also take midnight orders which is available in the major cities.
    Book your orders online at Flowers N Wishes

  2. Flowers N Wishes is an online Florist in India. We deliver Flowers, Cakes, Chocolates, Fruits, Dry Fruits and Teddies in Indian Cities like Delhi, Mumbai, Pune, Bangalore, Chennai, Jaipur , Chandigarh, Amritsar, Jalandhar, Patiala, Jammu ETC. We take online orders for all the major cities in India on Valentine, Birthdays anniversary and other occasions
    Red roses proclaim "I love you." They are the ultimate symbol of romantic love and enduring passion. On this Valentine Day send beautiful Red Roses to your loved ones and show your feelings and emotions with flowersnwishes. Send Roses, Teddies, Chocolates, and Cakes to your loved ones in Mumbai. We take online orders for all the major cities in India on Valentine, Birthdays anniversary and other occasions

    Book your order online for Mumbai at Send Valentine Flowers, Chocolates, Cakes to Mumbai India