I am a very lucky woman. I have a great group of friends and family who are incredibly supportive. Partly, I am lucky because I live in a time when there is less shame, fewer secrets, and more acceptance. For this I am so thankful. At the same time, I have worked to cultivate this support because I knew we would need lots of it on this journey.
I joined PEPS (Program for Early Parent Support), although I almost quit when ‘Buddys’ health hit the fan. Luckily they did not let me. They reached out, sent meals, and took turns by ‘Buddy’s’ hospital bed to we could take walks. And three years later we still get together for play dates and mommy time.
I joined Moms to Moms, or as I call it, Special Moms. It is a wonderful group of women who all have special needs children. They helped me transition from shock to functioning in the beginning. I have laughed cried and railed at fate with these women. I have shared therapy leads, tax tips, insurance information, doctors, diagnosis, medicines, best and worst schools. You name it. We are finding our way down this path together.
I have a neighbor down the street with an adult daughter with Cerebral Palsy. I consider her my special Mom Mentor. She has been down this path, and knows the ins and outs of the system. She is my go to person when I am stuck.
I have my Moms play date. This consists of wives of my husband’s college friends who have been meeting with their kids for 15 years of play dates. This group is primarily typical, though they have been touched by trauma and loss too. This group is home. They were present for the first seizure and they never left our side. I love these women like family and am deeply appreciative of the support they give me, and the love they give ‘Buddy’.
All this comes to mind because of a BBQ I went to this weekend. A friend was having a mostly family birthday party for her children. We have met a few of them on occasion, but did not know the family well. This could have been a very awkward day, but it wasn’t. We had a lovely day, in part because my friend had a sister with Cerebral Palsy. Unfortunately, her sister has passed, but the love she brought into the world lingers in the generosity of her family. We had very open, frank, and supportive conversations. The love and support was so appreciated. But it was appreciated even more so after talking with my friend’s mother.
This wonderful woman with a big heart and a soft voice, raised a special needs child alone in a small town, in a time where such things were hidden. I hate to think of the struggles and isolation that caused her. She told me about a luncheon for special needs mom’s. I could hear her heart fill as she told me it was the first time she went somewhere where a drooling child was the norm, where she fit in. My heart hurts for all she must have gone through. And I am so glad she had the strength for it, because the ripple effect of her efforts have changed the world, because of her generation, our generation has it easier. More specifically, there is a whole family out there with a heart for people who struggle, who are helping them find their path. She told me I was her hero, for choosing this path. Well she is my hero, for walking the path with grace and helping pave the way for me, by filling the world with a little more love and acceptance.