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You Are Not Alone

Joseph, Kathy, BS, PT

doi: 10.1097/RNJ.0000000000000203
EDITORIAL

To the young mom I saw rushing out of church last week…I saw you, even though you were trying your best to be invisible. I saw you holding your sweet baby with special needs, saw your other two young children clinging to your skirt. But I only saw you briefly because you ran for the door as quickly as you could. I wish I could have gotten through the crowd to say something to you, but I couldn’t. So instead I prayed for you. Because my heart goes out to you and I understand. Because I was you. I am you.

My initiation into this group I never asked to join—my beginning as a mom of a child born with special needs—was 25 years ago when my third daughter came into the world with congenital glaucoma and cerebral palsy. She was beautiful. She was challenging. She was not what I expected.

Somebody once wrote a poem comparing it to planning for a trip and then being rerouted. For 9 months, I had planned to go to Italy, I had packed for Italy, I was dreaming of Italy. And in the span of a few moments, I felt as if my plane had been rerouted and had landed in Holland. Holland is its own kind of beautiful—it’s not any less. It’s just not what I had planned or prepared for. And sometimes it gets lonely in Holland when everyone else seems to have landed in Italy and is showing off their photographs.

I know what it’s like to mourn the “what if’s.” To have grief pop up at random times when you least expect it. To feel guilt that your other children are getting less of your time. I know what it’s like to adapt your dreams based on what your child may or may not be able to do. I know what it is to find a new normal and to have even that normalcy continually evolve. I know what it’s like to feel judged by those who don’t understand, who have never walked in these shoes. I have been the recipient of dirty looks when my child acts differently in public, and I have let anxiety keep me from taking my child places just to avoid all of it. I have had my heart wounded time and again by thoughtless exclusion, ignorant comments, or cruel words toward my child. And I have learned to pray more—for patience for myself and for compassion and understanding for those that wound us.

All this to say…

You are not alone. This is a hard road, and I don’t want to overspiritualize it, but God is close here, and He will never leave you.

And as for you other moms, moms who don’t have a child with special needs, here’s what I want you to understand, what that young mom rushing out of church may not be able to articulate yet but still needs:

We need you to be intentional safe places for us. Be the includer. Invite our children to your children’s birthday parties. Ask us what, if any, adaptations would make it possible for our children to be included. Say hello and don’t avoid us at church. Hold our babies and coo over them the same you would anyone else’s. Quiet our anxiety by being a consistent positive presence. Be quick to see the good in our children when everyone else sees the bad. Be patient when we cancel on you, or when we are extremely late, or when our child acts inappropriately. We need you. And…you need us. This is a perfect opportunity to teach your child kindness, acceptance, and that we are all important.

Be sensitive and aware that it may be hard for us to relate to things you are going through or how to best express it. When you tell me how tired you are, how do I tell you that I’ve been exhausted for years and will be for many more? When you stress out about your child’s troubles at school, how do I chime in to the conversation when my child may never learn to read, may never even walk or talk or say “I love you”? I want to be a good friend, but I have to fight feelings of jealousy and self-consciousness in relationships all the time: How much can I share without seeming like I am complaining? How can I strive to rejoice with and for others who move on and pass milestones when I so deeply wish the same for my own little girl?

Encourage us. For most of you, caregiving is a season; for us, it can be a lifetime. My child may always need help. I may never have an empty nest. The worry of who will care for my child if she outlives me is a very real presence in the background of every day. My marriage may be under extra stress, and my life is full of extra details like IEP meetings, medical bills, and therapy appointments. When I look at the long haul of this kind of marathon caregiving, it can seem like too much. Be encouraging. Call me on even if our paths are different. Pray with me. Offer to have devotions with me at my house. Ask how you can pray for my child. Help spiritually carry my burdens when I can’t do it myself. And if this road has taught me anything, it’s that I can’t do this by myself.

So I guess, in a way, this is a postcard from Holland—to any other moms who have been rerouted and feel alone: You are anything but. And to those reading this from Italy: You can make all the difference when you fight to see the beauty in a place you haven’t been to, on a path you haven’t walked. You will discover a richness there you will never regret. Your love is needed. It is so needed.

Kathy Joseph, BS, PT

Kathy is the sister of RNJ’s Editor-in-Chief, Kris Mauk, mother of four grown daughters, and grandmother to three toddlers. Kathy has a heart for the special needs community and those she and her daughter Rebecca have met through various programs. Rebecca works at Ability Weavers—a purposeful work environment for adults with and without disabilities. Please visit the RNJ website this month, which features Kathy’s daughter Rebecca, now age 25, discussing her work at Ability Weavers.

This editorial, which first appeared online in the Lois Project (https://www.loisproject.com/about-us/), was edited and used with permission of Amy Hughes (founder of the Lois Team) and author Kathy Joseph.

Editor’s note: This issue features special content on pediatric rehabilitation. There are additional articles online only that are based on other topics.

© 2018 Association of Rehabilitation Nurses.