I feel at a bit of a loss for words to describe what I was feeling after seeing them and Cordelia (I know, those of you who know me are saying...You? No words?!), but I did take a number of pictures with my I-phone so I'll share those with you and hopefully that will accurately relay some of their experience.
This is a box that a family from Cliff and Dani's church (Faith Fellowship on Main Street in Clarence) sent to them...I just LOVED that they went out of their way to decorate it with scripture and pictures drawn in marker. Their church family has been so incredibly encouraging and supportive, a true testament to the the idea of what fellowship and community can be in a church body. This box is one of MANY boxes, cards, letters, and gifts they have received from church friends. THANK YOU to everyone who has been encouraging them with letters and gifts...those are the things that are truly sustaining them right now.
Here is Dani on their "bed" (yes they are BOTH "sleeping" there at night) writing her thank you notes. Katie and I told her she DID NOT have to send anyone thank you notes, but she insists with a smile and so she has a little stash in their room and when she has time she sits down to write them out.
Me with the baby...it was great to be able to hold her and snuggle as best we could with all that paraphernalia hooked up...
A shot of Cliff and Dani's bed...which is really a pull out chair. The nurses were sympathetic enough to track down one of those foam egg carton things to put on top of the pull out for some extra cushion. Many of you have asked me about their room at the Ronald McDonald House. Yes, they do have a room, but they really need to be with the baby at night so neither of them is sleeping there at the moment...They take turns during the day going over to take naps, showers, do some laundry, grab a bite to eat and Cliff likes to lift weights in the small weight room...though Dani tries to prod him that sleep will make him stronger (:
And Cordelia's crib...
The door to the Ronald McDonald House. I can't say enough about this place...it is INCREDIBLE. The facilities, the employees, the VOLUNTEERS! People cooking and cleaning and washing dishes...We saw a 7 year old boy with cleaning gloves on and a broom in his hand. When we first walked through I was close to tears as I considered that all of the 80+ families who are currently staying here have a child with a significant illness of some sort...they ALL have stories to tell, and hardships to face, but the beauty is that in the process all of these volunteers and employees are dedicating their time and money to try to make their journey just a little bit easier in any way they can...Katie and I have promised that in the future we WILL donate time and money to this organization. You can check them out here to learn more. To see more pictures of the Cincinnati Ronald McDonald House click here.
Another picture of the Ronald McDonald House...
A very cool sculpture near the sitting area outside...the hearts are part of their logo and can be seen in a lot of the artwork and decorating around the facility.
Cliff and Katie with the statue that sits out front...
Dani, in the hospital, pushing (breast) milk through Cordelia's feeding tube with a syringe...Not the typical way for a momma to be feeding her baby, but Dani does it confidently and with a smile as if it were the most natural thing in the world (that's why we love her so much!!).
What is not portrayed in these pictures is the steady flow of nurses, doctors and miscellaneous hospital staff who are in and out of the room 24/7. Cordelia's situation is incredibly high maintenance and so someone is constantly checking her monitors, or taking a blood draw or implementing medication. Cliff and Dani have both been incredibly vigilant at watching what they are doing, participating where they can, and making sure that all the medical teams are communicating with one another about things like taking blood (which, if not kept in check, could lead to a blood transfusion).
What is also not portrayed, despite all of the smiles, is how little sleep they are all getting...A few broken hours here and there each night and short naps in shifts when they can get them in.
On a note of "good" news, the Doctor's are petitioning to have Cordelia's score moved from a 29 to a 40, which will hopefully expedite her ability to get a liver. There was some talk of them also giving this an August 30th deadline, at which point they will seriously consider doing the living donor surgery...with whom is a question that is still up in the air.
If you have a moment this week, drop them a note in the mail...and if you really want to find the way to Dani's heart mail her some Pringles or Reese Peanut Butter cups...she's a shoo in for both!
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