Mary Elizabeth has hit her stride again after a few days in the hospital. She’s back to her routine of physical, occupational and speech therapy.
It’s been a beautiful weekend so far on Long Island, and we took advantage of the lovely weather yesterday by spending as much time as we could being out and about. We dropped off and picked up the girls from dance class, paid a brief visit to the salon and spent a few hours sitting by the water at Teddy Roosevelt Park in Oyster Bay while the kids spent their time beach combing. Then we swung by a local nursery to pick up some bee balm to plant in the back yard to attract hummingbirds. The day was capped off by dinner out at Friendly’s. Not exactly le cordon bleu, but we had a good time nonetheless.
It was a pretty conventional suburban day, but was a banner day for Mary Elizabeth. For her it represents an approach to normal, coming at the end of almost 6 months of distinctly not normal. Ironically though, engaging in all these activities underscores in many ways how different life is for Mary Elizabeth.
First off, these prosaic activities bring with them some pretty stiff physical and communication challenges. Being in a wheelchair has opened all our eyes to how different it is to get around, and is hopefully teaching our kids a valuable lesson in appreciating what they have and helping them empathize with what others are going through. It’s also been a great opportunity for them to step up and pitch in.
Each of them has found their niche in our new routine, with Clark providing very valuable logistical support with wheelchair parts, doors, ramps and other challenges. Louisa provides her own unique type of hug support, offering spontaneous (and strategic) hugs to Mary Elizabeth to keep her mood up – and Charlotte helps with communication and conversation.
Ironically, as Mary Elizabeth’s speech improves and she is able to initiate conversations and topics, it has become increasingly difficult to understand what she says. In the past, she has been mainly responsive – answering questions or providing feedback. The expressive aphasia she has as a result of the stroke makes it hard for her to find the right words. Her thoughts are cogent, but the words are often not. It’s incredibly frustrating for somebody as articulate as she to struggle to make herself understood. And it’s hard for the rest of us to face such challenges in getting what she’s saying.
It’s especially poignant for me since we’ve always had such a strong communication bond between us, and that’s now greatly challenged. This is where Charlotte’s particular skill comes in. When I can’t get what Mary Elizabeth is trying to say, and I’m out of guesses, Charlotte will step in and pick up the thread, offering insightful and intelligent guesses as to what she’s reaching for. More often than not, she’s correct. She’s also picked up on one of my strategies, which is to gracefully change to another subject if we’re not making any progress.
So it’s really a team effort at our house – with the requisite highs and lows – but we carry on with a lot of laughter, a few tears, and much hope for the future.
Moved in Sundry Places 
Hi Scott and MaryElizabeth,
I read and follow your progress everyday. I pray for you everyday and I hope for the best in your recovery. I was just googling expressive aphasia and was not surprised to read that Music Therapy (although it does not state that exact therapy) is a good source to help communication. It is well known that singing and rhythmic use of words helps people with speech problems. So here is the wikobedia website if you are interested. Maybe it would help. There are Music Therapists available on Long Island.
http://en.wikipedia.org/wiki/Expressive_aphasia
I have a friend who experienced a brain bleed a few years ago requiring a series of surgeries. One of the best things suggested to her was to keep a journal. Which at first she did not believe she could do.
It allowed her to track her progress – – which seemed very minimal at first. However, reading over the journal week to week allowed her to see steady albeit slow progress. Progress is the key slow or not. She is in an amazing place now. Mary Elizabeth will be too.
See you soon,
Lauren Straub
Hi Mel and Scott-I particularly enjoyed this entry and am glad knowing you were able to be out and about enjoying this weekend’s glorious weather. Charlotte’s role is an amazing one, and knowing her, I am not surprised -she is an amazing and perceptive young woman!! Not to mention Clark and Louisa’s roles -each has found a way to participate in a positive and creative way!! You all continue to stress the positive although the challenges remain -and hopefully will lessen with time. Last year I had a small bright red hummingbird feeder and it worked. They began to have a pattern and I would watch form them at the saame time each day!! Keep up the good work! love, bambi
Glad things are getting back to “normal”. I can imagine how challenging it must be for her (and you guys) to go about your daily routine with such a major difference in your lives. But cheers to you for doing it! You guys never back down, you are a really outstanding family.
I can almost understand what you are going through with ME’s speech, my son has a speech and language disorder (has since birth and is now 5) and it’s been a challenge to understand most of what he says. The thoughts are all there but it just comes out all wrong and pretty jumbled. He gets a ton of therapy to fix this, and we aren’t’ really even sure if it will get fixed BUT the plus side is we now fluently speak “Johnny”. Just like Charlotte is learning to speak Mary Elizabeth. I feel bad when we are in public because I see how everyone struggles to understand my son, and whatever he is saying at the time has so much life and excitement to it, but to the untrained ear it’s just gibberish. To me (and his twin sister) he is talking about the subway or dolphins or transformers, but to the outside world its nothing special and they just get nervous because they never know how to respond.
The outsiders who don’t speak our languages are all missing out, but we aren’t.
Keep the Faith guys, I still am in continuous awe of your family. Don’t let anything get you down, you are the epitome of what every family should be and you guys still continue to be an inspiration to me (and the others reading your blog).
Sending good vibes from Mulberry Street!!!!!
Nat
Oh Natalie – I loved your entry! Anyway – Scott — when can a few of the Nassau County Mothers of Twins Club members visit? Would three or four be too overwhelming? Let us know what we can do, what we can bring. In the meantime we all pray daily for Mary and her progress, and of course, for all of you. You are such a blessed family in so many ways, daily inspiring others with your grace, strength and wisdom.
Glad to hear that Mary Elizabeth is bouncing back so strongly. It must be so frustrating to know what you want to say and hear it come out the wrong way. That’s going to be tough but I believe she can conquer it.
BTW, today is Norwegian Independence Day — be sure to celebrate!
love,
K
M.E. – I see Carol Goglia beat me to the punch on the idea of singing to communicate. Sounds goofy but you may be surprised how well it works. Pick a simple tune and just put the words you want to say to it. Many people who have brain damage find they can sing far better than they speak. And wouldn’t it be lovely for you to sing everything, like a fairytale. (lol)
Dearest Scott and Mary Elizabeth, I am sorry to hear about the return visit to the hospital but glad that it was not another stroke. Your continuing strength is amazing! I love the thought of you all down at Teddy R park where the boys and I used to go all the time to search for treasures. My treasures are my sons and friends like the two of you, who do so much just be being in this world. Love you all! hugs, Noelle
I am full of admiration for you all!
Hi Scott & Mary Elizabeth,
Simple pleasures…that’s what life is about! You have showed so many of us what is really important in life. You have your family, faith, courage and patience to continue on this journey. I know that God will see you through it. He will continue to guide you and rest his healing hand on you. Our prayers are with you each day.
God Bless,
Bob & Carol
I can’t get over your diligence and perseverance. There are lessons galore here and a book and a half. People talk about spirituality and love, but talk is cheap. Your entire family is living it. Sacrifice. Empathy. Some people just aren’t cut out for it. It is an amazing slice of grace to see the entire family rising to this moment. My father in law is visiting from Brazil. He is in his eighties and suffered a “mild” stroke a couple of years ago. He is unsteady most of the time and his speech is still a little slurred. My mother in law is hard of hearing – very. These are trials, but they pale. The perspective is priceless. — keep the faith, courage and hope!
Simple pleasures indeed. Many thanks – once again – for sharing your family and experiences with friends. I refer to the blog daily for information and inspiration.
Prayers for all and hellos to Mary Elizabeth.