Well, Mary Elizabeth finally had her surgery this afternoon. After all that delaying, it was pretty anticlimactic – just a relocation of the EVD, and an all-new haircut.
After a lovely dinner last night with Peter, an old friend from high school who’s visiting London from Barcelona, I had a long, difficult day today. Getting back to New York is proving more complex and farther away than ever. I continue to work at it, but I feel ever more like a salmon swimming upstream. I’ll never give up, but it would be nice if just one thing were easy and fell into place. But I’m learning patience and intestinal fortitude in equal measures these days, and am trying to benefit from the experience.
Tonight Mary Elizabeth was subdued after her surgery and unresponsive as ever. I think the problem I’m having is that I am – against the doctor’s advice – comparing one day to the next. I’m thinking back to how she was before these infections invaded her body – responsive, expressive and almost lively.
I have to learn to intereact with Mary Elizabeth using a different scale than before. The very act of opening her eye and looking at me, without any other expression or movement has to become the new benchmark of awareness. For the time being, that is what I will be looking for, and what I will celebrate. So I continue to prattle on, talking about the weather, work and stories from home while she looks at me with her right eye, sometimes reaching up and grabbing a hold of the plastic apron, or holding my hand.
Her hand is the most expressive part of her body now. Rarely idle when she’s awake, it’s either running fingers through her hair (what’s left of it), scratching her nose, or holding my hand. I’ve found something which gives me great satisfaction and that is to lean my head towards her, hold her hand against my face, and to feel it there – sometimes exploring my ear, or even running fingers through my hair (what’s left of it). It’s a gesture from before – a loving gesture, staged now with some artifice, but whose effect is still comforting and somehow reassuring to me.
So now I feel like perhaps I am the one who has turned a corner – learning to look for a new, more subtle level of interaction from Mary Elizabeth. Deep down, I know that she’s aware of my being there, and even if that awareness isn’t manifest in any outward gestures, I am confident that it’s there.
Thanks for your positive, patient and reassuring comments after my negative post yesterday. I will never lose hope or faith, but sometimes find it necessary to express doubt, anguish or fear. It’s an important part of the equation and without it, the joys and elations of her recovery wouldn’t seem as sweet.
I finally got to ring at St. Alfege in Greenwich this evening after visiting hours were over, and met a new group of ringers which was wonderful.
Thanks again for your kindness, support and prayers.
Moved in Sundry Places 
Dear Scott,
I so hope the surgery proves to be helpful in getting rid of this infection once and for all. I’m so sorry you are isolated and alone in London. I’m sure all of your friends wish they could be there by your side to help you shoulder some of the responsibilities of Mary Elizabeth’s recovery process. We are all there in spirit and all moved by your loyalty, tenacity and loving gestures for Mary Elizabeth and all of us your digital supporters. Since I am not in the UK the boys and I pray for Mary Elizabeth and your family daily and we will continue in this vigil until she makes a full recovery. Let me know if there is anything else we could do.
Emma
Dear Scott,
You are sounding a little better this evening. I am glad to see and read about MaryElizabeth using her hands to communicate with you again. I can’t imagine being in your shoes. You are brave. Mrs. Casillo has a great suggestion, but I would have that you have already set up skype in your house. You are extremely smart with the computer!
We will be praying tonight.
Sincerely,
Patty Pugliese Guma
I kept checking the site to see if you had added anything new and now you have. I’m sorry that you were feeling down and a little discouraged. But, that’s natural. I too, would have to try to go back to zero and limit my expectations too or set a new level of expectations but you are asking a lot of yourself. You have valiantly stood by your wife’s side practically every minute. So, feel what you want to feel. Your Doctor may be right in the realistic world but there’s another world at play here, called emotions.
My prayers are with you and your family. Laurie
Thinking of you both with love, and with the thought of a bell choir…which I’m sure she’s thinking about too.
Everyone one of us is here with you each day reading your blog and trying to give you words of encouragement and wisdom. You are doing such an amazing job taking care of her. So incredibly proud of you to be so strong and patience with Mary Elizabeth day in and day out. Keep on talking to her, and being there for her and she’ll come home soon.
Dear Scott,
Anticlimactic! Has a nice ring to it. So glad to hear that it went smoothly. Hopefully the new EVD will help clear up the infections, which have to be so wearing on ME and slowing her recovery.
Thanks again for sharing this journey with us, especially expressing all your feelings. It is important to find an outlet for them; they’re inside of you and it’s how you’re feeling. They’re not right or wrong. We feel privileged that you share those emotions with all of us (and so eloquently). Please don’t stop.
We continue to lift ME, you and the family up in prayer so many times during the day. Again know we are with you in spirit.
Love, the Fixes
Your entry yesterday about “Looking at pictures of my kids,” got me to thinking.
How would you feel about setting up a SKYPE account so you could not only speak with your children, but also see them?
We’ll set up everything at this end (at your house)if you approve of the idea. Please let me know your thoughts.
Fondly,
Judithann Casillo
Dear Scott,
Our prayers are with Mary Elizabeth, you, and your family each and everyday, to give everyone encouragement and hope through this difficult time. When my mother was going through her surgery for her cancer, several years ago, the one thing that kept me strong was my confirmation verse, Isaiah 41:10, “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with My righteous right hand.”
Ironically, the day my mother went in for surgery, the devotion in the Portals of Prayer was based on that Bible verse. I will not write the whole thing, but I will write the last paragraph and the prayer:
“So when diseases rage, when relationships strain, when finances are difficult, when the news is devastating, we know Christ is still with us to strengthen, help, and uphold us. He has promised it.
“Thank you, Father, for Your great love, Your mercy, and Your constant presence, upholding us through fearful times, by Your right hand, Jesus Christ, our Lord. Amen.”
Nancy, Mike, Scott and Carolyn Galdo
Dearest Scott and Mary Elizabeth, Your candor and courage are astounding to us all. We send as ever our fondest love and wish you to know that we support you completely and love you both very much. The sense of touch is one of the most delicate, and your holding Mary Elizabeth’s hand to your face is such a gentle and beautiful gesture. May all be well with you both, love and hugs, Noelle
Hello my friend,
You’ve all been in my wife’s and my heart since day one. Your courage is inspiring! Love trancends everything, don’t give up because your connection is still there even though it appears diminished because of the lost physical contact. But it is still there… Behold your beloved!
Blessings my friend
Frenchy
Hi Scott-Once again, surgery is behind you, and let’s hope this will help alleviate the infections that seemed to have put a halt to Mel’s promising progression. That you have been able to express doubt, anguish and fear is important, I think, as it is a form of emotional release that is needed. Just as mary lizabeth now needs physical support -you need emotional support along the way. You surely have it back here and it sounds as though you have managed to make new friends in London. I saw a friend mention SKYPE in the blog as a way to connect with the kids -perhaps this would be a good interim alternative until you are able to work through the return logistics. Elise relayed too that the return plan has been an added difficulty but the analogy you use about the equation is good. Try to keep each day in balance. xxoob
Dear Scott,
I am glad the surgery went well and that you sound a bit better with this current blog. Patience is sometimes hard to wrap our arms around when it comes to having someone we love return back to us. I think that everyone that reads the blog feels your pain and sadness and wishes we could all do more. I know you will never give up but I also know that it has been a long hard road so far and the road ahead will be challenging as well, you are not alone in many ways, God, your family, your friends and all the people that read this blog are praying for you and Mary Elizabeth.
If there is anything we can do to help get Mary Elizabeth home sooner please let us know.
All our love and as always our prayers for a full recovery.
Suzy & Bob
Hi Scott,
I may be able to put you in touch with some resources that could help you to navigate your return to New York. When you can, email me and we can discuss offline.
Your last update was most poignant and I look forward to catching up.
Love, Abbey
Dear Scott & ME,
Thank you, again, for all of the updates. I read them religiously, rising high along with you with each positive sign and reminding myself that the less responsive days are simply part of the process. I am thankful for the great medical care that is there for ME, and especially for the support of the medical staff for you Scott.
Love, Jen
Dear Scott,
I’m not sure that you all remember us, but we were long time members at Trinity and went to Lu-hi and Steve works at TIAA-CREF, down here now in North Carolina. We knew you when your children were little and were present at the twins baptism. Anyways, I have been reading your daily updates on Mary Elizabeth and I just want you to know that we are praying for her, you and your family. I know that it has been quite a rollercoaster. Just hang in there because things will get better. Remember Psalm 46:1 God is our refuge and STRENGTH, a tested help in times of trouble.
God is always with us no matter what!
Love,
Dorothy & Steve Viole
Dear Scott:
I just recently found out about your blog and have been following it daily. You seem to have a great support system back home because I see your kids at all their usual activities like basketball, Cub scouts, etc. We are all thinking about your family and hoping each day to read good news. I would probably be doing the same thing as you and comparing one day to the next and it is tough not to.
I am touched by your words every day and we all pray for ME’s recovery.
– Susan Vaughan & family
Father, You bless those who revere Your name and delight in Your commands. In the midst of inner turmoil or outer conflict, I will not be shaken for my heart remains steadfast trusting in You and Your overall plan for my life. I want to remain firmly grounded as I overcome the daily obstacles common to those who live on earth. Help me to learn the valuable lessons along the way as I press on toward the goal for which You have called me heavenward in Christ Jesus. Amen.
Dear Scott,
You cease to amaze. Through all these ups and downs, you somehow manage to keep your chin up with grace and humor. I read a comment that suggested skypeing with home. We skpye my family in California and it’s an amazing technology. You really feel you’re there! Hopefully that works out as a temporary way for you to see the kids. Sending good thoughts and love, Jen and Steve
Dear Scott and Mary Elizabeth,
One day at a time. Thinking of you always and praying everyday for signs of improvement…no matter how small….they are huge leaps.
Thinking of you,
Adrienne Jones
Oh Scott,
You are only human and in love with the beautiful Mary Elizabeth, so it is only natural that you want your talkative, engaging, glowing wife back. And it is only human that you’ll have some days that are better than others. You just keep hanging in there and keep babbling away to her – I really have faith that one of these days she will open both of those eyes, grab your hands, share all sorts of insights and stories with you and escort you to the dance floor.
Sending hugs and hope,
Leslie
Scott,
We are with you and M.E. You are all in everyones’ thoughts, esp. at St J’s C.S.H.
You are probably “up to here” with prayers, but here is one of my favorites:
Oh Lord, support us all the day long of this troublous life, until the shadows lengthen, and the evening comes; the busy world is hushed, the fever of life is over, and our work is done.
Then, of thy great mercy, grant us a safe lodging and a holy rest and peace at the last.
Dear Scott,
I just wanted to let you know that my family & I are still praying for Mary Elizabeth.
Lynn Graf
Hello again Scott,
About the Skype connection? You can now do the same thing with GoogleMail undet video chat. Just set up 2 seperate gmail accounts. You open both of them at the same time and video chat between the 2 accounts for free and the audio/video quality is better than Skype.
Blessings my friend