A Good Cry!

I haven't written on this blog in months for so many reasons, none of which are being lazy! I sat here and re-read all my postings of Caitlin's journey through her stroke recovery. I have cried and laughed trying to feel inspired from our courageous journey up to this point. Some things have changed but the most significant constant is the necessity for me to fight for Caitlin's therapies. I am not sure the word fight is even appropriate. It is more like finding a way to justify to doctors in Virginia, who are only reading reports, that this is not an "old" stroke as they identify it. Still the same stroke, still making progress, still going at a slow pace, still continuing to recover. When people ask me about the new health reform I really don't know what to say. I am just angry, tired, overwhelmed, and wish I didn't need help from the government to do what is right for Caitlin. We can't buy insurance with a pre-existing condition, insurance grants as many therapies for a stroke as they do for a sprained ankle, cobra has run out, and there is no alternative. Wishing I was wealthy so I could afford all the therapies Caitlin could benefit from is wasted energy as I can't make that happen either!
I struggle with finding the positives more days than not and that is probably why I haven't written. I tend to keep frustrations bottled up inside of me rather than sharing. Being stoic has been a life long coping skill of mine and letting that wall down is not always easy for me. I have found myself tearful and emotionally drained now more than ever. Caitlin is more frustrated as each day goes on. She has every right to be angry, frustrated, disappointed, scared, and whatever else you can think of that is summed up by the thought that this life sucks! When both of us are hit with those negative feelings on the same day it is definitely not a good day.
Despite our negative emotional state and circumstances that we deal with, we keep on trying to find some sense of peace and happiness each day. The winter months are hard because the cold weather gets Caitlin's tone going and movement becomes more difficult. We did get out to the UNR basketball games which was courtesy of cousin Keith, a freshman on the team. We were loyal fans to UNR but mostly we went with high hopes that Keith would play so we could cheer for him! It was a great reason to get out of the house on a cold winter night and do a bit of socializing too! We learned that the seats in the handicapped area were a great view of the basketball court below!
Caitlin and I joke that we feel like an old married couple because we seem to go everywhere together. Often times we are bored with each other's company but if it weren't for this Caitlin would be stuck in the house most of the time. Over time this "new normal" has grown to be quite isolating and often times very lonely for the both of us. Caitlin has done many 1,000 piece puzzles in just a few days trying to keep busy. The TV watching drives me crazy but mostly it is on for noise and to take away the emptiness that we feel in our own home. We so long for warmer weather to stay so we can get out of the house and feel the warmth and nurturing of the sun.
So it is now one month of no therapies but as always there is a silver lining in a dark cloud. Caitlin has started going to an athletic trainer to replace physical therapy. This has turned out to be just an amazing enhancement to everything Caitlin has previously learned in therapy. The girl is now sitting in restaurant booths, baseball stadium seats, and attended a Catholic wedding while sitting in the church pew. A new reason for a Catholic Mass...the up and down during mass makes for a GREAT test of physical strength. Caitlin did it! At Sierra Speed and Strength Caitlin's trainer is named Rob. He is up on a pedestal in my eyes as he has five children. Their ages are 12, 10 year old triplets, (4 boys) and and 8 year old daughter! Imagine surviving that! While at Sierra Strength and Speed we have met some very loving and concerned individuals who has been touched by Caitlin's unending smile, laughter, and determination. The latest conversation with Rob was that perhaps Caitlin could do a little organizing of Rob's office and computer work to earn some workout time. It would be a good match because we all know Caitlin is quite capable of organizing!
I am still working at finding other ways for the OT and CT to occur at an affordable cost. Not there yet, but it will happen. Next week I have another telephone conference with Medicaid which will hopefully get us somewhere else rather than a fair hearing. Of course we went this route before and had positive results. I can only hope and pray that we will have positive results again but unfortunately I am not very optimistic about this. Every agency I speak with claims that Medicaid benefits are being pulled from many, even children, which has not typically happened in the past. New eyes in therapy are also what I am seeking...perhaps that is the good to come out of all of this. Caitlin's therapists at St. Mary's have done many good things but when I see the new burst of strength and confidence Caitlin has gained from working with Rob I have to believe change is good.
Caitlin has been to Voc Rehab and had cognitive, skill, and career testing. The results indicate she is still the science and math whiz! All the results were incredibly positive yet finding a new direction for career options has not gotten us too far. The list of possible occupations that were given to Caitlin included various doctors of medical specialties! She was told to investigate three careers, their schooling, and the need for them in the Reno area and get back to the counselor at Voc Rehab. It is infuriating to think that this is the amount of help they give to someone in Caitlin's situation. She spent a few days on their website searching for a direction and then gave up. There are many days when I get in my car, drive to school for the day, and just scream and shout about the life Caitlin has to live right now.
I have had the last month off from school and have spent so many hours trying to regroup and restructure what I can of our life. If you looked at my house and yard you would immediately know I am overwhelmed with just getting through each day. Many days I don't feel as if I know myself anymore. The me I used to be and the me I am right now are often times at opposite ends of the pendulum that makes big swings each day. I keep telling myself that good things will shine forth but I just really want them to smack me upside my head instead of having to look for them!!!
The school district is offering a buyout as an incentive for seasoned teachers close to retirement. I got excited about this as I have seven months of teaching left after this year to qualify for retirement. First round of calculations I could retire and simplify my life. After doing all the calculations the second time I figured out that this would not be possible. I really need to find a way to get off the merry-go-round that I am currently riding. Unfortunately as much as I thought this was the solution, it now isn't!
Michael is resigning from his karate studio and seeking a new path for himself. This has been a decision that needed to be made after various occurrences over the past year...change in management being the most crucial in my opinion. I think the last four years have helped Michael to mature into a responsible and delightful man. His work ethic is remarkable as is his smile and personality. Searching for a new direction is not great in these economic times but perhaps it can only be looked at as a time to grow! Stephanie is out in the desert by Laughlin, Nevada doing research until June. It is great to see Michael a bit more as he is flying solo for these two months but we do miss Steph. The laughter, antics, dirty laundry, dog, and appetite that he brings with him on any given visit are all welcome! Hugging that son of mine will always bring joy to my heart!
We will be busy celebrating many weddings, baby births, and graduations in the next few months. Life marches on and we are trying our best to participate in others' life events as joyfully as we can. We appreciate those who reach out and walk beside us on our journey too!