Not Quite Dancing on Tables
It has become one of those family stories that will never die. Ten years ago -- just before Mike and Megan's wedding -- when Madeline’s scleroderma started to impact her life, her rheumatologist asked her what she wanted to be able to do. Madeline’s response? “I want to dance on tables.” While (as far as we know), dancing on tables was not part of her regular repertoire, it was an answer that gave a glimpse at her personality. She doesn’t take herself too seriously and wants to enjoy life to it’s fullest. Over Thanksgiving weekend, Madeline, Jim and Colleen saw this sign and knew they couldn’t leave it in the shop. While more of a Chardonnay girl than a Champagne girl, this fit Madeline to a T. It’s been sitting in her closet until yesterday when Jim brought it to decorate her hospital room. The sign has proven to be a fun-loving way to show Madeline’s caregivers her personality, even if she can’t technically speak for herself.
This morning was fairly quiet. Madeline had been in bed since about 5:00 or so yesterday afternoon. She was uncomfortable and eager to switch positions and was finally moved her out of bed and into a chair at about 1:00 this afternoon. It didn’t take long for Madeline to spring to life. Jim and Colleen started to show her webcams of Aruba -- one of the things that she has enjoyed while tied to a chair over the last couple of years. Next they knew, she was asking for her cell phone and calling her “Brother Like No Other” in Aruba. While Walter and Janet were on the phone, with Colleen lip reading Madeline’s side of the conversation, Jim’s cell phone rang. It was his brother Tom checking in from Florida. In a moment that would have made Madeline’s father’s head spin, Walter, Janet, Tom, Jim, Mad and Colleen were all on speakerphone talking to each other from Aruba, Florida and Pittsburgh!
Since it was the weekend, the hospital was fairly quiet and there weren’t as many teams coming in and out of Madeline’s room, she created her own therapies. She used a Magna Doodle a few times (Thank you, Barb!) to communicate. Since her motor skills aren’t quite what they were a week ago, it is still hard to read her writing, but by watching her form the letters, it was easy to understand her message.
Madeline continued to experience a dry mouth, but her nurse was more liberal today with allowing her to use swabs to wet her mouth. They are very adamant that she not swallow yet, as they do not want her to aspirate into her new lungs. A highpoint of Madeline's day came when the nurse brought her a mixture of ginger ale and cranberry juice into which she could dip her swab rather than just ice water. To look at Madeline, you would have thought she was enjoying one of her much-loved Cosmos!
When her nurse mentioned the prospect of starting to walk, Madeline nearly jumped at the idea. Because the proper teams to support this new endeavour were not in place over the weekend, instead Madeline marched in place for a short time while moving from her bed to chair and chair to bed. So, while she’s not quite ready to dance on tables, she’s almost ready to march on them!
1/29/2017 10:18:38 pm
Can't wait to see Madeline dancing on the table!!! Will it be at the Willws or Bonnet......maybe both!!!!!!
1/30/2017 09:41:11 am
Mad: when you're ready to dance on that table I'll be with you. Just be aware, the last time " I remember" dancing on a table was opening night at The Dubliner in DC, March 16, 1975. I fell and went to Prince George's Hospital for X-Rays. Lynchy will verify this.
1/29/2017 10:48:43 pm
Madeline, Mark has finally forgiven me for not kissing him good bye. What a fortunate Nana I am to have my grandchildrens first schooling experience be with you. Love and prayers💕
Pat and Joan
1/30/2017 09:31:31 am
We LOVE the sign! It speaks volumes about your personality, Madeline!🥂🍾🍸🍷You bring the dancing shoes and we'll provide the cocktails!
Cumberland (Narragansett) Reillys
1/30/2017 12:39:06 pm
June 17 ... there will be PLENTY of tables !!!
Denny and Jane
1/30/2017 03:02:15 pm
Love the sign😀 Every day one dance step closer to home!
1/30/2017 03:40:27 pm
Thank you for the update. You all are in are daily thoughts and prayers....tell Madeline Mark and I look forward to seeing her dancing on tables at Twin Willows!! xoxo
Candy and Bill
1/30/2017 05:34:28 pm
1/30/2017 07:51:51 pm
Love, love the sign!! We'll all be dancing on the tables with you wearing our flip flops ! You are doing GREAT!! You are such an inspiration to all of us! Sending prayers and love to all of you!!
1/31/2017 06:35:13 pm
Wonderful Update Madeline! Keep your eye on the table and before you know it you WILL be dancing in a table after you march to it!
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As often as possible, we'll try to update this page to let you know how Madeline is doing and where she is in her fight for new lungs. Visit often!