It has officially been a year since my world was turned upside down – my daughter turned one this week! (AND we have survived the first year…a feat that hardly seemed possible as we viewed our new life from inside the walls of the NICU only 12 short months ago.)
In my very first blog post, I spoke about “embracing the unexpected” in regards to raising my special needs daughter. Admittedly, this is still a work in progress!
The range of emotions that consume me regularly continues to take me by surprise. The most unexpected is the loneliness – this one seems to be lurking around every corner and is the one I have the most difficulty overcoming.
I have been so fortunate to connect with families all over the world who are on the same journey with us. I am a member of several private Facebook groups for parents of children with the same syndromes as my daughter. The support provided by these groups amazes me on a daily basis! We are able to share our joys, concerns, frustrations, questions, and accomplishments with a family that we know has experienced the same feelings at one point or another and without judgment. These groups are my lifeline in so many ways!
Yet, as wonderful as my Facebook family is, “talking” with my tribe of special needs moms remotely across the United States, Turkey, or Spain, just doesn’t quite have the same impact as meeting a friend in flesh for lunch or coffee.
Several months ago, a fellow Facebook mom shared a story about a “first” for her as a special needs parent. She had a lunch/play date with a couple friends she had not seen since prior to having her child. Throughout the lunch, she came to the realization that living the life of a special needs parent had left her with very little in common with her former friends. She found herself frustrated more often than not and unable to relate to the daily challenges faced by these friends. Numerous other parents replied with messages of support, while sharing their own experiences of frustration and feelings of isolation.
At the time, I thought, “YES! I can totally relate!” Don’t get me wrong…I have wonderful and extremely supportive friends. On the rare occasion that I am able to connect with these friends, I truly enjoy their company and the opportunity to catch up on our lives. I need these connections to maintain a sense of normalcy and because they are just great people!
Yet, SOMETHING is still missing and I can’t even put into words what that SOMETHING is….all I know is that I have such a strong need for a tribe of special needs moms.
I NEED to be in the presence of people who are experiencing similar struggles and understand what it is like to walk in my shoes on a daily basis. I NEED to be able to sit across the table from someone and take a deep breath, while thinking to myself, “I am not alone.” I NEED to be able to be with another parent who knows what it’s like to feel like you are drowning among all the doctor appointments, therapy appointments, maintaining medical supplies, managing daily medical needs, the financial stressors of raising a special needs child, and the stress it puts on your relationships. I NEED to commiserate sometimes about how difficult it is to observe other typically developing children, while never knowing if your own child will master the same skills and the ensuing pressure to pack every waking moment of your child’s day with therapies to accomplish the milestones that are so difficult for him/her to achieve.
I’m still looking for my special needs mom tribe and hope that as time goes on and my daughter gets more involved, I will find new ways to connect with other families.
Any other local special needs parents out there who have struggled with this? How have you found ways to connect with other special needs moms?