We have had such a huge outpouring of love and support since Benny was born, it's been amazing. People often say "Tell me what I can do to help." It is not easy to accept help and I often draw a blank. But if there is one lesson that I've gotten from the experience of having a baby with special needs, it is this: Take the help.
We are one day away from Operation Day, and I know that once I get into the hospital all of my energy will be focused completely in the present moment of getting through this difficult situation. And I must remind myself that it isn't just a single day of surgery, but long days in the hospital after and weeks and weeks of recovery at home.
We do need your help, and we're going to need it for awhile. So here are the best ways to provide support for us during this time, and thank you in advance for whatever you are able to do.
1. Pray, visualize or think positive thoughts.
It doesn't matter to us how you pray or what you call it, we appreciate your thoughts and prayers for Benny. There is scientific evidence that praying for someone who is in the hospital can help them recover more quickly and with better outcomes. Your prayers for Benny truly matter.
2. Wear a Team Benny or green shirt on Tuesday, December 9th.
We have already been getting pictures of people rocking their Team Benny t-shirts posted on the Team Benny FaceBook page, and it is awesome! It really lifts our spirit to see that people are sending their love and support in this way. Wear your shirt (Team Benny if you have it, any green shirt if you don't) like it's Saint Patrick's Day on Tuesday, and send us your pictures via FaceBook, Email, Text or any way you please.
3. Bring us food and hugs
During the many stays that we've already had at the Rocky Mountain Hospital for Children, we've come to realize an important fact. Hospital cafeteria food sucks. When Benny was first born our good friend Todd set up a little food train for us, and it was *so* nice to get those deliveries. Our out of town friends sent food via restaurants, and while we missed their company, it was still so helpful and appreciated. For this next long haul, the lovely Kim Huss set up a meal train you can sign up for here. If you need to send food from afar, you can order gift cards for us from Morning Glory Cafe, Thai Monkey Club or the Pho Cafe.
4. Give Caspian extra love
This poor kid became a big brother just weeks before starting middle school. It's the worst! He absolutely adores Benny. This surgery (and the possibility that he could lose his brother) terrifies him. He is in great need of emotional support from friends and family. He will be in Santa Barbara with my sister Leise the week of the surgery. If you're in the area, give him love in person. If not, leave messages of support for him in the comments section of his site, babybenjamin.weebly.com.
5. Buy a shirt or just chip in a few bucks
We are already struggling to keep up with the medical bills that have been coming in from the delivery, NICU and two hospital stays we've had so far. We have good insurance, but those co-pays and deductibles add up fast! So many of our loved ones have been asking for shirts but weren't able to buy them from Pork Chop Press in time, or are asking if they can just donate, so we've decided to set up a campaign on booster.com. You can buy a shirt here anytime in the next two weeks, we really appreciate it.
We have already received so much support and we are so grateful. This is an incredibly stressful time and I don't know how we would have made it through without the wonderful people who have stepped in to give us a helping hand.
Thank you all so much!
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!