"To You, My Sisters" by Maureen K. Higgins

I have become a member of 2 clubs or sororities recently. When I miscarried, I felt instantly like I was a part of a club no one ever wants to join. Complete strangers would email me or send me Bible verses or books as I went through the grief process. We were instantly connected by our shared experience.
I joined the second club at Will's birth.
Just recently, Will & I were invited to a play group of children with Down Syndrome. I couldn't get there fast enough - just the opportunity to meet other women with kids with special needs made me so excited. As we compared our grocery store experiences & I held beautiful new babies, I realized how they instantly "got it."

One of Will's doctors at Scottish Rite gave me a copy of this letter recently. I've added it to my collection of Emily Kingsley's & Erma Bombeck's essay about mothers. To those of you who are my sisters, you are precious to me. I am so grateful to be on this journey with you as we raise kids with differences.

One of the biggest blessings in having a child with differences is the people I've been able to meet. They "get it." It doesn't take but a single email or phone call or brief meeting & we are instant friends. They know and understand my deepest frustrations and fears without me ever saying a word. They can encourage me like no one else because they know. I don't have to put on a happy face when I'm sad about something or explain anything to them or even defend myself or my parenting to them... they "get it" & they don't judge me. I love this letter because I think the author does a surperb job of describing the friendships developed out of a shared experience in raising a child with a difference. My apologies to the author but in some places I've modified it to reflect more of my personal story. For those of you who don't have children with differences, I hope you can read this letter and gain some empathy & insight into the lives of women you know or see, women who are doing their grocery shopping, women at your church, etc who have special needs kids.


Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds, in doctor's offices, and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my 'sisters.'


Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.


We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRIs, and surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine (June 19th.) Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with differences.


We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need surgery. Some need respirators, ventilators, or breathing monitors. Some are unable to talk, some are unable to walk. Some eat through feeding tubes or nurse with the aid of contraptions. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as 'special' as our child's. We have mutual respect and empathy for all the women who walk in our shoes.


We are knowledgeable. We have educated ourselves with whatever materials we could find. We know 'the' specialists in the field. We know 'the' neurologits, 'the' hospitals, 'the' wonder drugs, 'the' treatments. We know 'the' tests that need to be done, 'the' therapists and types of therapy, we know 'the' degenerative and progressive diseases and hold our breath while our children are tested for them. We know the scary possibilites associated with their syndrome and we hold our breath as we approach each time frame for the next possibility and we wonder if our child will have to endure even more. We spend hours researching about miracle treatments online after we put our children to bed, wondering if these miracles are even possibilites for our children, and if so, how we will cope with the ethical challenges and decisions they present. Without formal education, we could become board certified in neurology, endocrinology, physicatry, and orthopedics.


We have taken on insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children. We have huge medical files for our children and we have spent hours fighting with insurance companies and hospitals. We learn to not bat an eye at another medical bill in the mailbox as we would pay anything to make our child's life easier. Before our child's first birthday, we were researching and meeting with other moms to learn the best methods for educating other children and adults about our child.


We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in grocery stores and gritted our teeth during comments from the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated other mothers complaining about mundane problems. We have even learned to join in with them in the hopes of feeling more normal. We have learned that many of our friends can't understand what it's like to be in our sorority, and don't even want to try. We have cried tears of gratefulness when one of our friends has made an effort to come alongside us and attempts to understand our world.


We have our own personal copies of Emily Perl Kingsley's 'A Trip To Holland,' and Erma Bombeck's, "The Special Mother.' We keep them by our bedside or in my case, on the fridge, and read and reread them during our toughest hours.



We have coped with holidays. We have found ways to get our physically handicapped children to the neighbor's front doors on Halloween, and we have found ways to help our deaf children form the words, 'trick or treat.' We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive, normal atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We can't tell you how many tears we've cried.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

We've redefined what 'normal' means and we've struggled daily to come to terms with our newdefinition. We've redefined what faith and trust mean & we've often struggled to understand God's purpose. We are awestruck as we realize that we wouldn't change our children, that we can't imagine them any other way. We are overwhelmed at the depths of our love and at the grace of God for giving them to us. Our hearts are full and overflowing and we find ourselves so grateful for even the smallest of moments- their smile, their laughter, the way their eyes light up. We are overcome with pride as we realize how hard they work to accomplish what seems to be the simplest of tasks. We admire our children. We are honored to be their mothers.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We imagine them on their wedding day and their first day of work. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all that will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.