Joy has been a long time coming to our family but it finally showed up in May. Two big events made it joyous. First the entire family gathered over Mother's Day weekend in Houston, we had so much to celebrate. It was all so awesome because it had become a very rare day when we could all come together and it afforded Donna lots of excited anticipation and great fun. The second big joy was the announcement of Sarah and Nate's wedding engagement. For a family starved for good news, this was like a parched man finding a lush oasis in the desert. It is also a joy that goes on and on which is so sweet. All the talk and planning give us great excitement and remind us how life is so awesome to live.
Outside these joys, the mechanics of our life at this point are an unsustainable grind. Donna goes to therapy of some kind every day and finishes every day tired and desiring more accomplishment. Me working every day compounds the complexity of it all. Donna's attitude has been unimaginable. Steady and positive most of the time in the face of what would have most of us frustrated on almost a daily basis. Focus, discipline and strength have always been abilities of hers. I tell her that this is part of the answer to "why me?". It doesn't quite cut it as an answer but I know she can do what other people (like me) can't. An amazing lady!
A general update on Donna's condition:
Eyesight
We go back to the doctor in a week and this is the long awaiting decision appointment of surgery or not. Donna and I are sure the answer will be surgery as we know material improvement has not happened. There is real relief in this answer as we know we will get on with it and god-willing her eyesight problems will end soon.
Right arm
With occupational therapy over, Donna's exercise in this area is around activities of daily living at home. We have pursued a wide range of efforts to further expand her range of arm motion, extension has improved, flexion has not. Her orthopedic surgeon believes that there may be original accident injury damage in her elbow. There are rules of thumb for acceptable range, when you come up short of those limits, bolder actions like surgery may be viable. Donna's range is on the borderline. We'll pursue more opinions but our non-surgical options are nearing a conclusion. Either it will be good enough or we will go for more. No urgency here so we will ask for a multitude of opinions and exhaust every non-surgical option. This is not a pressing problem.
Ataxic tremors
These tremors of her arms and legs are one of our biggest obstacles to step change improvement. More consultation will happen but options are small here. This a brain healing solvable situation only. We'll wait and see what God has in store.
Speech
A real success story. Great therapy and a diligent Donna makes for steady improvement. Another month or two of therapy will happen but Donna has already passed the test of acceptable clearness with a few key people who struggled to understand her before. We were not to be denied in this area and it appears to be working out slowly.
Walking and balance
This is the area of improvement most desired and the place with only a slow steady improvement realized, a real patience tester. Donna's balance clearly gets better although the journey to independent walking is long. Strength is much improved (many thanks to Susan) but Donna is not yet close to independent walking. Donna's assisted walking has better technique and endurance so we remain optimistic but brace for a long journey still. If the ultimate outcome will be defined by effort and commitment, Donna will be a winner. Unfortunately we suspect the outcome we desire needs a divine contribution also. Pray for her here. We prepare for an amazing life in a situation where it doesn't improve but Donna busts her butt for more. If the saying "God helps those who help themselves" is true, Donna will be a winner. I have to say that everyday I now watch people walk and run around and I constantly think how we all take that for granted. Donna would take just a small piece of that and be so grateful.
So what's really new? Donna shows collateral indications of improvements in many other ways. She has started to require less sleep (for 10 months she has needed 10-12 hours per night). Now she averages 9 or less, a sign that her body is giving her back her brain and not demanding as much fatigue healing time. She has also reestablished her assault on sudoku. With a great iPad app (she has become an iPad fiend) she has moved from "easy", through "medium"," hard", "difficult" to "evil". "Evil" was summited today so only "diabolical" level remains. And to think that I feel like a champ if I can do a "medium". We go into the yard to enjoy the flowers often and Donna gets better at getting around and soon to take on more of an active role in the gardening activities she loves. Her mind is so good, the other day, as I was about make a dish, she told me to reference the recipe and then proceeded to tell me it was on page 18 of the red cookbook (which it was). Then before I could read it, she recited it to me from memory. Amazing, better than me on my best day but then thats how it has always been.
In the midst of all that we still grind through, we talk about the joy of being a team. We have decided we have two favorite moments of every day, the moment I walk through the door in the late afternoon and we see each other and smile, and the other is just as Donna is about to collapse into bed and we give each other one huge extended hug. No matter the intensity of the day, these two moments get us to tomorrow with a smile and remind us that the joy of life isn't the destination, it's the journey together.
The coming months will be supplemented with the happiness of wedding planning, our much anticipated cruise with the whole family and ultimately a life without therapy and no cares in the world because one way or another, life will be what it will be and we will stop worrying about it. We hope to see you soon. As we conclude this long journey of communication, (its been almost a year) you have heard far too many words from Bob, it seems appropriate that the last words would belong to Donna.
From Donna:
Thanks for all of your support including prayers, words of encouragement, phone calls etc.. I appreciate you following my story and especially all of the support. I have read all of the cards and I'm sorry I have not written back. Both my handwriting and typwriting lack a bit still but I love hearing from you so thank you very much. It has been great to see some of you and I hope to see you all. I love being home, it is awesome and I really enjoy the time with Bob and my kids. I know I used to take some things for granted but we always tried to appreciate the good things in our lives. I really treasure them all now. It does get very hard sometimes but I appreciate more than ever all of the blessings and people in my life. Again thanks for all of your support and I hope to see you soon.
Love,
Donna
Love,
Donna
PS if you are looking for us and can't find us try us at Colosimeaux@gmail.com
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| Our Mothers Day Together |





