February has been a month
of perseverance, challenge and hard work, both for Donna and myself.
Donna's progress continues slow and steady. Donna's challenges this month have
involved a progressively more rigorous therapy program, the loss of one of her
brothers, and an improvement pace that doesn't meet her desired pace. My
challenges involved a sore back, stomach flu and an ever more complex support
plan. The month started tough but the good news is that it has improved
steadily and we find ourselves in pretty good shape now. Let me fill you
in on Donna's progress in her key areas.
Speech
Donna's speech gets better steadily. Her therapy has been a bit spotty this month with therapists not really knowing how best to help. We should have this better sorted in the coming month but Donna deserves all the credit for improvements she has seen as a result of practice and healing. As you may know, getting this right for Donna is important and we will persevere.
Use of Donna's Right Arm
Both of Donna's sides are
getting much stronger. The exercises do a great job and her occupational
therapist, Stacey, is just awesome. Donna would walk on water for her and
she is so full of helpful information and activity. The right side effort this month has progressed from a focus on gross motor movements to now fine motor skills. Donna can't do all she desires but her right side keeps improving. This month she has started eating certain foods with her right hand and more is to come. She is close to working her way back from temporarily left handed to neutral. I suspect it may then be back to right handed. This is all exercise and informed therapy. All is moving forward great here.
Walking
This is our major focus and Donna's greatest residual challenge. Despite great strides she remains unsatisfied and there is much more yet to come. Balance.... Its a lot to do with Balance. So much therapy has gone into balance improvements and it has improved but essentially Donna needs to learn it all over again, imagine the frustration. Donna started Aquatic physical therapy 2 weeks ago to complement her existing physical therapy. It is great. Her therapist is excellent and facility is super. After a lot of preparation, this past month has been about much more standing and walking. Several weeks back, Donna announced on our way into church that she wanted to sit in the pew (as opposed to her chair) and that she wanted to stand. Little did I know that she planned to stand throughout the entire mass at the appropriate times. There were many wide eyed people around us. She has sustained this practice since then which now includes Stations of the Cross on Friday nights. This past week, after weeks of mental and physical preparation, we finally agreed to put the wheelchair away during the day while we were home. The last 4 days Donna has walked with the help of a walker only from breakfast to bedtime. We use the chair when we are out of the house but this is a great achievement for her. Her endurance is growing, her walking form gets better and her balance improves too. She has transformed from losing balance 2-3 times in a short walk to losing balance once every 3-4 walks. I take my hands off regularly now and she keeps on going. A ways to go here as the progression will be from walker independently, to cane, to nothing (God willing) and the timing is undefined. Donna works hard though, each day it is hard to see a change but over time it happens. The fatigue she fights is big, but her fight is bigger.
A lot of Donna's improvements have to do with improvements in her core strength. It has transformed from very weak to pretty solid and the difference is so clear in all the movements she makes. There is farther to go but a solid foundation exists now as a result of the all the exercise she has endured in the last several months.
Our lives have been very full. Add to my list of responsibilities, Social Coordinator. I relish the job as Donna so needs and benefits from the breaks and company. We stay busy. This month we celebrated our 29th anniversary and it was very simple, dinner at our favorite restaurant. We went very early and had the entire restaurant to ourselves, priceless. It is all a tricky thing because we want everything on our plate but occasionally the limitations we have to accommodate remind Donna that this journey is not nearly complete. Her mind is amazingly active and her participation in our discussions and decision making is full. Often she'll be sitting quietly and come up with the most amazing questions that leave no doubt how active that brain is, No surprise there. As would be the case with anyone who has faced her challenges, the most difficult questions always include the word, Why? It is especially difficult since answers to Why? are so hard to come by.
We have received the most amazing notes from so many different sources, close and distant friends, as well as, complete strangers who have been pointed to our story with great hardship in their lives and our story gives them a possible window into the future. These notes are all touching and inspiring. They remind us of the distance we have traveled and at times remind me of the great fear that once dominated our lives, a feeling I would be happy to forget.
Our search for the right Caregiver appears to be complete and as soon as Donna reaches a few key milestones that I want to ensure occur, I will probably get back to work. I am expecting that to potentially happen at the end of March. Donna likes having me here but even with that desire, too much togetherness can be too much. Adding the wrinkle of me working will make things harder again over the short term but ultimately drive much more normalcy into our lives.
We had a feeling that by March a rest would be in order and we have plans to relax with trips to both Lafayette and Florida this month. Grand plans also for late this summer when we will take a cruise. After all these months of grind, it provides us a great relaxation to look forward to.
I'll leave you with a final thought. Donna and I for many years have loved Stations of the Cross and especially the version that several of our parishes, including our current church, use. All these years some of the words spoke powerfully to us but in the last 3 weeks as we have heard those familiar words, it in someways feels like we have been preparing for our current journey all our lives. There are several I could point to but I'll leave you with just one.
Accept each moment as it comes to you,
with faith and trust
that all that happens has my mark on it.
A simple fiat, this is all it takes;
a breathing in your heart,
"I will it, Lord."
Thanks to all of you for your great support, we love you. Call or come by, or we can come out as we try to do it all.
Bob
