What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Suzanne Perryman.
Special Needs Moms are not easily offended. Despite what our social media status updates say, we are vulnerable and life messes with us daily. So really, ask what you want to ask and it’s okay to start with “I don’t really know how to say this, how to ask you..” I am especially touched when someone cares enough to ask me how my child is feeling, or how to include my child in a social gathering, meal or other event and am happy to collaborate on what will work for us.
Special Needs Moms worry about dying. We worry about our kids getting sick and dying, we worry about our husbands dying and leaving us alone, but most of all we worry a lot under the surface, and especially about being around to care for our child.We watch people we know grieve the loss of their children and try not to think about it. On the up side-we live life fully and don’t take it for granted.
Special Needs Moms are fluent in the transforming body language of touch. This is the first language we learn, and sometimes the language our kids know best. This therapeutic natural language can relax, redirect and heal. This should be the first language “spoken” in every home.
Special Needs Moms know to savor the gift of a child saying “I Love You.” For the longest time I wasn’t sure if my daughter, Zoe, would ever speak the words. As a newborn, it was her sighs of contentment, as I held her against my breast, that told me how much she loved me. When she was a baby, it was that peaceful calm that came over her, when I carried her in my arms. The first time she found her words, she was already a little girl, and every time she spoke them I cried. She is ten now, and her words, even more tender and wise. I leaned into her at bedtime the other night, as her hand reached up, caressing my cheek, she whispered…“ I love you Mom, for taking such good care of me.”
I am a special needs mom. And I have secrets. Things I don’t talk about and stuff that other mom’s don’t know or may have forgotten along the way…
Special Needs Moms are lonely. I yearn for more time with friends and family. Authentically, I have a positive attitude and most often you see me smiling. I may even look like I have this SuperMom thing down, am super busy, and have enough help, but I am lonely. Being a Special Needs Mom doesn’t leave me the time to nurture and maintain the relationships I really need. I could get super detailed here about the hands-on caring for my child (Do you remember when your kids were toddlers? That hovering thing you had to do? It’s that plus some.) The plus-some includes spreading my Mom love around to my other child and my husband, who on a daily basis are put on hold, waiting for my attention. I don’t have much time to call or email my friends and even family…and if they don’t call or email me, well then I feel massive guilt about the time that has passed. More negative stuff that I pile on my shoulders. Getting out is tough. I really miss the day’s when I had playgroups with other Mom’s, open-house style, dropping in and drinking coffee at a friends’ kitchen table with my child playing nearby.
Special Needs Moms have to work extra hard to preserve their marriage. This goes with counter-balancing the high stress of special needs parenting and directly combats the sky-high divorce rates for special needs families. I put extra pressure on my husband, he is my best friend and sometimes I expect unrealistic BFF behavior from him at the end of the day( see #1). He is my hero, supportive, patient and loving- and my kids would be totally lost without him. The success of our marriage, will affect the health of our children. My husband and I haven’t spent a night away from our kids for six years, we do “date night” out of the house every few months, for a two-hour sushi date. Our marriage is a priority so we “steal” our moments when we can.
Special Needs Moms are not easily offended. Despite what our social media status updates say, we are vulnerable and life messes with us daily. So really, ask what you want to ask and it’s okay to start with “I don’t really know how to say this, how to ask you..” I am especially touched when someone cares enough to ask me how my child is feeling, or how to include my child in a social gathering, meal or other event and am happy to collaborate on what will work for us.
Special Needs Moms worry about dying. We worry about our kids getting sick and dying, we worry about our husbands dying and leaving us alone, but most of all we worry a lot under the surface, and especially about being around to care for our child.We watch people we know grieve the loss of their children and try not to think about it. On the up side-we live life fully and don’t take it for granted.
Special Needs Moms are fluent in the transforming body language of touch. This is the first language we learn, and sometimes the language our kids know best. This therapeutic natural language can relax, redirect and heal. This should be the first language “spoken” in every home.
Special Needs Moms know to savor the gift of a child saying “I Love You.” For the longest time I wasn’t sure if my daughter, Zoe, would ever speak the words. As a newborn, it was her sighs of contentment, as I held her against my breast, that told me how much she loved me. When she was a baby, it was that peaceful calm that came over her, when I carried her in my arms. The first time she found her words, she was already a little girl, and every time she spoke them I cried. She is ten now, and her words, even more tender and wise. I leaned into her at bedtime the other night, as her hand reached up, caressing my cheek, she whispered…“ I love you Mom, for taking such good care of me.”
