BY NAOMI WILLIAMS

There have been plenty of days where I don’t want to do this anymore. I don’t want to be a caregiver.  I secretly crave a typical life. I want the “normal.” 

I’m tired of changing diapers. I’m tired of dealing with poop, mucus, and vomit. I’m tired of being held to a 3-4 hour schedule. I’m tired of doing this alone. I’m tired of being the one responsible for everything. I want the ability to run to a store solo or even with my child in tow, but without the confines of a wheelchair and all that it entails. I want to go away alone for a weekend, spontaneously. I want to visit friends and my son to be able to hangout with their kids instead of having to be next to me. I want to say yes when a friend calls last minute to invite me to a concert or for a massage. I want to hop in someone else’s car without hesitation. I want to get on a plane for a family vacation and easily rent a car. I want to send my kid to spend the summer with his grandparents.  I want to hug my child with no barriers or concern for the wheelchair. I want to call the neighbor down the street and ask them to send my child home or ask if we can take turns watching the kids for parents night out. I want to dream about and plan to be an empty nester.

I want to plan and celebrate a college graduation, or watch my child fall in love, get married and begin his own parenting journey. I want to play with my grandchildren. But these are all dreams, desires, and wishes that will not come to fruition. I spent many days, nights, months and even years brooding over all of the losses carrying anger and bitterness for much longer than I should have. Refusing to let go, forgive, and live my best life now, I became physically sick and emotionally and mentally unwell. I didn’t and don’t want my child to get hurt or bear the brunt of my frustrations, especially over things that neither of us can control. 

It is and has been an intentional decision to change how I view my situation, how I interact with and love my child, and how I create the best life for both of us. I’ve learned just how precious time is and to know our next breath isn’t guaranteed. Seeing tomorrow isn’t promised to us. I see and feel his health declining. In choosing to not resent my life I’ve had to find ways to make it meaningful, not just for him but for me as well. Knowing that our normal wasn’t typical, I’ve been determined to bring some typical things into our world of normal.

Identifying the things that bring me joy and mixing that with opportunities that I want for Noah is what has helped us go beyond surviving and into the land of thriving. Most recently, we’ve discovered and entered the world of Special Olympics. To me, the Special Olympics has always been a one day, school field day with various athletic stations for the kids in the special education classes. 

What I discovered is that the Special Olympics is filled with meaningful events, and opportunities to meet new people, explore new sports, and have purposeful engagements with self and others – for the most dependent of people. Participating with one of our local Special Olympics chapters, Noah and I both have found a local, in-person community that we both desperately needed. With the support of the community, particularly involvement in our multi-endurance sports group, The Kyle Pease Foundation, we continue to have new experiences and phenomenal places to win emerge. 

Alongside the Special Olympics, being active in the National Park Service’s Junior Ranger program has helped me quell any thoughts of resentment. Noah is a multi-endurance athlete  completing numerous races including seven Marine Corps Marathons, four triathlons, and countless 5ks, 10ks, and half marathons. Noah has also earned over 45 Junior Ranger badges by visiting and completing activity books specific to national parks, monuments, battlefields, and historical sites.. 

I’ve learned to cherish the months, weeks, days, minutes, and even seconds. I’ve learned to state and delve into my fears and acknowledge all of my feelings. I’m learning to lean into this awkward place of “in between.”  I’m living the life that I wanted (for the most part) it just didn’t develop or look how I expected. We have a life full of love and adventure.

Life is too short to live consumed with contempt, resentment, unforgiveness, fear or hopelessness. 

Find or create, if you must, ways to feed your soul and nourish your familial desires.

Naomi D. Williams is a perfectly imperfect person on a mission to empower individuals and families to live their best life, now. As a Life Doula, she helps people navigate and process major life altering events. Naomi believes anyone and everyone can and should lead an exceptional life. She is the proud mother of a former 26-week preemie who lives with a host of diagnoses that fall under the primary umbrella of spastic quadriplegia cerebral palsy. She uses her and her son’s past and present experiences to inform and partner with healthcare systems as they live out the consequences of not being considered a valuable member of their care team. Naomi is the author of And God Remembered Noah: A mother’s heart-opening journey through 22 weeks in the NICU. When not advocating for her family or others, you can find Naomi getting lost exploring nature or taking a deep breath on her yoga mat. Find her at exceptionalliving101.org , Noahland.Art  and on LINC-d. com or Linked In