Tuesday, December 27, 2011

Lessons Learned

I'm thankful for 2011. This year has been particularly difficult and freeing. It  was perhaps more challenging to me than the time of Cody's birth trauma and official diagnosis. It brought the celebration of Cody's tenth year of life. In both the months leading to his birthday and in the subsequent months, it was  bittersweet. The bitter in that as his tenth birthday approached, the realization how quickly time had flown and in many aspects that Cody's life in the present/future and as a caregiver/parent becomes more arduous. The sweet is in the deep gratitude for EVERY day of Cody's life. He possesses  the greatest attitude of everyone I know (happy 99% of the time), his perseverance, and appreciating each day as it comes.....

Here are some of my most valuable lessons......

1. I'm learning to be less offendable. If you know me at all, you know that I am not a fan of the word "retard" and also "jokes" pertaining to those with disabilities such as the common "short bus" anecdotes. I do feel a sense of responsibility in communicating to others not only about the words themselves but the attitudes behind them. I also realize that most people do not intend to be hurtful. The  time that a tween boy at the mall used the word "retard" when he spotted Cody hurt terribly but has also taught me a valuable lesson. I need to let some things go....I will never be able to change and/or control the entire world in how my boy is perceived. I just need to concentrate on the day to day as Cody  (and Hannah's) mom. That perspective is liberating!

2. The internet is a blessing and a curse. I have a friend that jokes that regardless what simple ailment she or a family member possesses that after a considerable amount of  time spent on medical sites, she believes that it is likely fatal. I am a proponent for gathering as much information in regards to treatments, therapy, surgeries, and so on..... but there are times that too much information can be overwhelming! I'm learning to do the research,  take a break to digest the information, and then consult with Cody's entourage (doctors, teachers, therapists, etc), repeat... :)

3. A parent with a special needs (or typical) child is their child's greatest "expert." The doctors, specialists, therapists, and other professionals in your child's life aren't always "experts" on everything that is your child. I've learned over the years that CP (like every other disability or condition) presents itself differently in each unique individual.  There have been times that these great folks working with and for your child will differ in opinion. Ultimately you are the "coach" of the team and you need to make the call. Perhaps your call wasn't the best play so you go to plan b, c, d, and so on.... (My sad analogy comes from years of marriage to an avid sports enthusiast).

4. I'm not a  naturally confrontational person but had to develop that  to better advocate for my son. I took a personality test in my early twenties; the D - dominant personality trait hardly registered. Life experiences/changes will typically alter the personality test results for everyone but this definitely occurred after Cody's birth for me. A prime example of developing that confrontational edge is with the insurance companies. Insurance companies routinely deny coverage for services, equipment, and treatments with the phrase "not a medical necessity" attached. The key is to appeal that via letters from doctors, teachers, therapists and making a case personally to an individual of position from the insurance company. I like to think of myself first as "the polite squeaky wheel" and if the polite doesn't work....just squeaky!

5. I'm inspired by others. When you have a child with disabilities you become a member of a club that no one would ever sign up for but after you're in it for a while, you greatly appreciate the extra-ordinary individuals that you may have never met otherwise. I've met children and adults with disabilities and their families that inspire me greatly. We're all on our own unique journey; we can learn from others in their challenges and triumphs. Communication with other parents of children with disabilities/chronic conditions is invaluable. Often I'm reminded that at any given time that someone else always has it more difficult.

6. I've had to allow myself to grieve not only for Cody but for me as his mom. It's OK to be somewhat sad as others share their child's athletic prowess. It's understandable to  rejoice with them while at the same time feeling a sense of unfairness for your child. It's rather amusing that I can be slightly envious as a mom complains how "Johnny" has made a huge mess, climbing the bookshelf, or won't stop talking. It can be heartbreaking observing  Cody when he's frustrated with his own body. I've had to make a decision to allow myself to feel that way for a minute and then just do the next thing.

7. Faith, Trust, and Planning  My greatest apprehension  is Cody's future when I unable to care for him. I think that this vulnerability is felt by every parent no matter the capabilities of the child. I know that as much as I love and care for Cody that God's love for him is even greater. I also know that as Cody has already exceeded so many expectations since his birth he will continue. I'd rather have high expectations for Cody so he may aspire to meet them than to have little or no hope.  My motto is to hope and pray for the best but plan based on the realities of today. Planning for your child that most likely will have to live dependently on others is a daunting and necessary task.

8. Be good to yourself   Often I feel like I can never do enough to be of help to Cody but I'm learning that there are times that extending grace to myself is very important. This can take different forms for everyone depending on your interests. I enjoy reading, photography, (ATTEMPTING at) being crafty, etc.....

9. Sense of humor is key! I come from a long line of goofy. :) The ability to see the humor in life truly helps in surviving the most difficult aspects.

The close of 2011....
Christmas Eve