Grief, Mom, Parenting, Special needs parenting

The Heartbreak and Loneliness When You are a Special Needs Mom

Earlier this month I wrote about the difficulty that special needs moms have with fitting into the Mom world. I have also shared with you some of the difficult truths about raising a child with special needs that we don’t always share with friends. What I have noticed in the responses, feedback, and comments shared by so many is there is one theme that is consistent with most parents in this community. The theme we are talking about is loneliness.

When I became a mom, I imagined a life filled with playdates with other children. My mornings were going to be blissful as my child played with others and I chatted with my friends while sipping coffee. My childhood was filled with these memories of playing while my mom interacted with friends. There was happiness all around as everyone was able to interact. I had no reason to expect that life would be any different for my child. Then I gave birth to a child that was medically complex, medically fragile, and developmentally delayed. Playdates weren’t something we could go to because we had to be careful about germ exposure. As he grew older, his delays made it harder and more challenging for him to interact with other children. Children around him showed very little interest in including him in their play, and I was spending playdate time monitoring his health and helping him play.

Early on it was challenging for me to connect with moms that had neuro-typical and healthy children. I didn’t speak the same language. While they were rattling off about the milestones their children were hitting, I was thinking about how far behind my child had become. My son walked late, talked late, and has had severe to moderate delays in every area of development. When they were talking about all the cool new toys to keep their kid learning and counting, I was falling further and further inside myself feeling desperately alone. On the playdates, I would see kids my son’s age counting, jumping, climbing, speaking, singing, and doing everything a child their age should be doing. Watching all of it only reminded me how different our lives were, how much we had to fight for every single milestone, and how much I didn’t belong.

Over time I found myself pushing more and more people away from me. It was hard to be around other families that had typical children. All I could think about talking about was our therapy, the number of appointments we had, or the medications that needed to be refilled. My life wasn’t filled with ECFE classes, sing along with me playdates, or mommy and me music groups. Our life was filled with a packed therapy schedule, multiple doctors, homecare nurses, PCA’s, social workers, medical supply companies, insurance preauthorizations, and paperwork for every professional involved. When I tried to separate myself from all of it as a mom, it felt impossible to find any sort of connection. Instead of trying to keep up with all of it, I just walked away.

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I suppose I could have stuck it out and made more of an effort to make those friendships work, but if I’m honest, the truth was it was all too much for me to take. I felt heartbroken leaving those playdates, I felt isolated, and I felt complete and utter sadness. Accepting my child’s differences was a very hard pill to swallow, and I fought the urge to swallow it for years. I didn’t want to think about how far behind he was, what he couldn’t do, or how much work we had left to help him. All of that felt far too overwhelming, and instead of continuing in those friendships it was easier for me to walk away. I already felt alone in all of the groups and being alone with my son meant less heartache for me.

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Our entire situation was so overwhelming for me as a new mother. Not only did I have to manage his serious health conditions, but he was also autistic and needed a lot of developmental support. There was little time in my day to think about being a normal mom or even figuring out how to relate to anyone else. When I would try to share my story with others, I often felt like I was on the spot. I didn’t want our life to be the focus of gatherings, outings or playdates. All I wanted was some time for my son and me to socialize, and it never seemed to happen that way. Many days and nights I would return home in tears and scream to my husband about how alone I felt. He was the only person that understood our life, and because he was our financial provider he was away from home most days. I even crumpled into a ball in my closet more than a few times trying to manage the isolation and loneliness I felt daily.

The only time I ever felt slightly normal was when I would log into Facebook and check on support groups I was in. My life outside of my son became solely about Facebook groups because it was the only time I ever felt normal. I could easily find other mothers walking this same journey, dump my feelings, listen to their stories, and connect with our daily struggles. I found myself with my nose in my phone at all hours of the day. I needed a fix of friendship and connection constantly, and the only way I knew how was to be in these groups. Even going to support groups in the real world was too daunting for me. My son’s health left us at home much of the time, and some weeks my only interaction with other moms was online.

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I wish I could say the sadness and loneliness have improved, in some ways it has improved, but overall on most days I still feel very alone. I have created more friendships outside of motherhood that has helped me tremendously, but I still can only count on a few people to really be there for me.

My hope and prayer for all mothers in this community are to find a tribe of mothers. It might not look the same, and it may have to be online for this season of life. Our tribes can exist in many places, and I’m hopeful with openness in our hearts and truth in our words we can find people that will walk this journey of parenting along the side of us. ¬†We have so much to offer everyone, and we have so much to give to friends and family. We just need others to be willing to accept our fears, limitations, and insecurities. Most importantly, we need others to recognize the isolation we live in and help us find a way out of that darkness. Motherhood is supposed to be lived in a community, and I won’t stop trying until I find mine. I hope all of you keep on fighting to find your tribe.





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