A Time for Everything, Part 4

By Kim Greene

Season of Gratitude

I am blessed with so much.  Educationally, I loved school, except those areas already mentioned. I participated in many volunteer groups and activities.  I recently retired from teaching Kindergarten/First Grade after 39 years. I was able to obtain my teaching credential, special education credential, and a Masters degree in social work. I continue to volunteer in my church and community. I discovered that what mattered most to me when I was teaching is that every student knows and hears that they are loved and that they matter. 

When asked, “what do you hope to achieve in the next few years?,” my response is that I hope to continue being present with people, listening to them and helping them truly believe and know that they are seen, known, and loved for who they are in relationship to God. We all matter. 

Season of Reaching Out

Perhaps my story can and will be an encouragement to someone else.  We each have a unique story…perfectly timed.

When asked, “What advice would you give your younger self?,” I hope I would tell myself that labels are not helpful. That I need to trust myself and be an advocate for what I know is true about myself. Don’t let others criticize, dismiss, or put you down…and if they do, speak up.

As far as advice for others with cerebral palsy, my thought is that each of us experience cerebral palsy uniquely.  It is helpful to either talk with someone else with this diagnosis or join a Facebook community, MyCP or check out Cerebral Palsy Alliance Research Foundation. 

 Additionally, I have found that some days are easier than others as my body responds differently depending on what I am doing and how well I have slept.

I do have a list of a few things I wish that others knew about being an adult with cerebral palsy. The most important thing I continue to experience is that many in the medical profession will openly share that they have no idea how to treat CP or how it may or may not be a factor in a current health issue. I have other significant health issues, especially dealing with sleep and breathing issues that no one seems to be able to correlate directly with cerebral palsy.  

As a patient, it is frustrating to have an issue, and have no one know what to do or how it is related to CP. Doing your own research can be helpful. My experience as an adult with a delayed diagnosis is that, unfortunately, some of the medical professionals I saw were dismissive and even unethical in their responses. However, there are also many who are trained, caring, and responsive. 

I wish I could help others know how incredibly tight my muscles are daily. I live with pain every day, which is invisible to others. A medical massage or physical therapy with stretching feels like a necessity not a luxury. I wish both these services were offered on a bimonthly basis all year long without a new referral.  A physical therapist who is skilled, listens, and believes in you is so helpful. 

Even with a diagnosis of mild cerebral palsy and appearing to be “normal,” I still struggle with motor planning, coordination, balance, and fatigue, and I want those close to me to recognize that I do get fatigued due to how hard I work to do routine tasks.  

If you, too, are among those receiving a delayed diagnosis of cerebral palsy, please lean into my experience and find people and organizations that can support you. My heart desires for you to know your past without the diagnosis has not been wasted. That each season of our life has a purpose. May you join me in living the next season of your life with cerebral palsy with the expectation that you matter.

This blog is part a multi-part series. Read Part 1, Part 2, and Part 3.

*Kim’s story is part of KEEPING IT REAL — a series of personal stories that will take you deeper into the lives of people with CP. Each person makes different choices based on what works for them, and we’ll showcase that — highlighting what life is like for them on a daily basis, what they care about, and the ways CP impacts them. 

The KEEPING IT REAL blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn’t be read or construed to contain any medical advice, medical endorsement, or other endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what’s best for you. Please consult your doctor for medical advice.