A MOMENT OF inspiration - BY A SPECIAL NEEDS Mom

By: Maureen Marsh

Wife, Special Needs Mother, Pharmacist, Unapologetically Ginger

I recently read a parenting article titled “The six types of Mom friends you need”. I skimmed through the six categories, nodding and vaguely recognizing the different stereotypical maternal archetypes, and although I could logically see the advantage to having many Mom perspectives, my Mom perspective is anything but typical. Consequently, my experience with motherhood and other Moms is also atypical. You see, I’m the mother to a very unique 5-year-old boy with a rare congenital brain malformation called Dandy-Walker syndrome. My pregnancy and birth experience was fairly average, but when my son began having trouble staying on the growth curve and meeting milestones, we were sent for a consult with a neurosurgeon. A head CT and a very traumatic consultation later, we were sucker-punched with a rare diagnosis. Diagnosis day was awful, but what followed was nearly unbearable.

I was 38 when I had my son, so I had amassed a decades-long arsenal of many different types of friends: childhood friends, high school friends, college friends, work friends, and neighbor friends. Some are parents, and many of those parents had children much older than my son. I also happen to have a fairly decent number of middle-aged friends who never had kids, both by chance and by choice. During the early days after my baby’s diagnosis, I was very fragile and fearful and very, very vulnerable. I began to isolate myself and found it very difficult to be around other small children. I avoided my neighbor whose son was around my son’s age, and I hid or deleted many people from social media that had recently had babies. It was self-preservation – I simply could not look at what “typical’ kids were doing. My son had balance and coordination difficulties and low muscle tone. At 9 months, he wasn’t even sitting independently, let alone holding a bottle, crawling, or pulling to stand. I was very selective about whom I chose to tell our news in the beginning, but I knew it was just a matter of time before people would begin to suspect a problem.

The months passed and my son’s development felt like it was in slow motion. Because of his delays we sought the help of all of the therapies and specialists available to us. My days were filled with appointments to doctors and home visits from First Steps of Indiana. My nights were filled with hot tears and worry. I stopped calling people. I stopped going out. And slowly, people started to notice. One particularly rough day, my phone rang and the caller ID showed the name of a friend that lived out of state. As much as I wanted to talk to her, I still didn’t have the words to explain what was happening. She left a message that said “Hi Mo, it’s me. I just wanted you to know that I’m thinking of you and I’m here for you if you want to talk. And if you don’t want to talk, that’s ok too. You don’t have to do anything. I love you.” She is childless by choice, and she said the exact right thing to a Mom in crisis.

My Mom friends had a mixed bag of reactions. I told some of my college “friends” at an awkward dinner one night and didn’t hear from them for a year. A few Mom friends were very positive and well-meaning, but would push for playdates or activities that they clearly did not realize were challenging for me and my son. We drifted apart. A few tried the misery Olympics talk- “oh ALL kids have challenges”. So the invites and the phone calls dwindled.

Then a curious thing began to happen. In spite of my best efforts to push everyone away, I still got invitations, but only from cerI got a Christmas White Elephant party Evite, a New Year’s party invitation, followed by texts asking about dinner, drinks, girls night, art gallery shows, brunch, film festivals, and silent auction charity events. My childless friends are smart, interesting, politically active, and involved in every way in the community. And best of all they still include me, even though they know I can’t attend the majority of these events. Even though they know I don’t have the time, money or energy to be as involved, they don’t leave me behind. They’re inclusive, and to this Momma who spends a lot of her precious time and energy pushing for inclusivity for her child, it’s so refreshing to know they do the same for me. It makes me feel energized and uplifted.

Fast forward several years and my little monkey is thriving. He is walking, talking, and going to kindergarten. He still has many challenges, but is a total joy. He will likely always need help with certain things but he’s so charming and lovable, people are just naturally drawn to him and want to help. I like to talk about him and his progress, but I also need to resist the temptation of losing myself in this journey as a Special Needs Mother. My childless friends are key in helping me live this balanced life. They ask about him, they are genuinely concerned for him, but they also have a lot of other things to talk about. They don’t give me pitiful stares, and they don’t give me unsolicited parenting advice. I’m not their project or their charity case. There’s no Mompetition or Mom shaming tactics. They don’t judge me or my parenting choices, and they also don’t avoid the tough questions when the topic of his prognosis arises. With them, I am not a social pariah. They accept us for who we are and where we are at on this journey.

I am still buddies with a select few Mom friends, and thanks to the internet I also have a lot of virtual Mom friends of kids with special needs. I am grateful to talk about parenting with them at times. However, if I’m 100% honest with myself, I feel most at ease with the women who are also in their own way on a less-traveled path in life. I’ve been fortunate enough to have many types of friends through many seasons of life, and I’m open to the idea that this may continue to change and evolve over time. But for now here we stand, in the middle of life, and our biology will soon remind us that we are rendered incapable of conceiving, no matter our previous fate. As we link arms and stare down menopause together, I wonder if these childless women realize that they have Mothered me in the highest, most sacred sense- by showing me unconditional acceptance and love.

Calling all individuals with special needs, parents, grandparents - If you would like to share some inspiration with the community or nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com