I remember the first time I connected with another special needs mom to speak specifically about our parenting experience. Although it was a relative that I’ve known forever, I was too afraid to reach out. I’m so glad she contacted me to offer support. It was such a relief to feel like someone else could really understand. I still rely on this person on a regular basis for advice on everything from wheelchairs to seizure meds and value and trust her opinion so much. I also love to hear updates about her sweet little girl who’s just a few months older than Gage.
I can also distinctly recall the first time another CMV mom reached out to me. Through this fateful connection, I was hooked up with an entire online community. I’ve watched other kiddos grow up on Facebook, savoring their sweet pictures and videos, celebrating successes, and agonizing over challenges right along with them. It’s such a hard thing to explain, but there’s a strange connection with children who share the same diagnosis. I think we look to each other for the things we recognize in our own kids and to learn from experience of those walking right along with us. There’s a bond with the kids who remind me of my own, and a respect for the moms I relate to on a unique level. From the screen of my smart phone, I watch people in completely different scenarios – single moms, college professors, and those who started families much younger than me, and feel a odd familiarity with the life they’re living.
And then there’s another category that’s one of my favorite type of connections. Local moms I’ve been introduced to via our kids. What a treasure!!! Back in the days when all of Gage’s therapy took place in our home, I vividly recall the desperation for connection I felt and expressed to our therapists. The early intervention model was a huge help to us in those days, but didn’t lend itself to meeting other parents. It wasn’t until Gage was 3 and receiving services in the community that I started meeting other local special needs parents. It was such an answered prayer.
At one point, another mom invited me to lunch with her and some friends. I felt like I was intruding since they’d known each other for years, but she assured me it would be fine. Man, am I glad I went.
The children of these moms are all in their early teenage years, so their experience and insights were so valuable! We talked about the nitty gritty and ins and outs of things like CP treatment, special needs life jackets and even wheelchair accessible vehicles. But my biggest take away from that encounter was watching a group of vibrant, fun, funny women just being friends. They joked, caught up, laughed and didn’t hesitate to tell the restaurant manager that he needed better accommodations for wheelchair users when he came to check on our table. Not in an angry, confrontational way, but in a constructive and lighthearted way in response to the question asked.
I remember I sat back and watched them in amazement and had a moment of clarity that everything was going to be alright. Seeing them and their interactions gave me a sense of hope. These awesome moms didn’t seem sad or bitter about their lives. They seemed joyful, excited about new things going on, and perfectly willing to share a smile and helpful advice with a stranger.
I won’t forget the wisdom one of the moms, who I now consider a friend, shared at that first meeting. She told me that looking back, she wouldn’t change anything about all the different things they’d done for her son over the years, which included a variety of therapies and treatments. But she would change how much she beat herself up over all of it. That will always stick with me.
No matter what situation our kids are in, I think it’s easy to fall into the trap of feeling like we’re not doing enough or not doing good enough. I’m grateful for another mom’s perspective about extending ourselves a little grace. Even if we drop the ball in parenting from time to time, we’re not in it alone. If we’re really lucky, we’ll have others to watch and learn from along the way.