Soon after I brought my daughter, Bethany Grace, home from the NICU, I began to feel like my relationships with my friends were changing. One friend often called to ask how Bethany Grace and I were doing and to see if we could come over for a playdate.
Come over for a playdate?
I felt like I was living in a different world from everyone else. Bethany Grace lay hooked up to four machines around-the-clock. Her immune system was so fragile she couldn’t leave the house, and no one could come in.
“What Are You Doing All Day?”
This is the question that I began to hear on the phone. I tried to explain that after only a couple of broken hours of sleep, I was pumping breast milk all day to keep Bethany Grace’s feeding pump going. I was making sure her oxygen was on the right level, suctioning her, and constantly monitoring her heart rate. When I wasn’t doing all that, I was drawing up medicines, talking to doctors and therapists, and washing medical supplies. Oh, and I was caring for my three-year-old son who also had complex needs at the time. A lot of the time, we weren’t even at home. Bethany Grace went in and out of the hospital. My friends simply could not understand what I was doing all day or going through.
The Beginning of My Feelings of Isolation
I had dropped off social media. It was just too painful to keep seeing pictures of everyone else’s healthy babies beginning to meet milestones, drink bottles, look healthy, and go out places as a family. I felt so alone. Misunderstood. Abandoned. Bitter. As you can imagine, my story takes a dark spin.
No one can do it alone. No one. And be healthy
I had crawled into a corner in my mind trying to cope with all of the trauma from my nightmare pregnancy, the emergency delivery, and the roller coaster in the NICU. At the time, I really believed that no one else could understand what my life was like. I thought no one could empathize or tell me that I was doing a good job. I believed that I would never have friends again who got it.
Well, I was wrong. That simply wasn’t true. I can see that now. But I went through several miserable years before I learned that true connection is possible. You may have been fortunate to have stayed connected to friends, family, and your spouse. But many special needs moms aren’t able to do that. They’re lonely and desperate for connection. That’s why I want to share with you how I did it and how you can too.
Reaching Out
The last thing I had energy for was to reach out to other moms or return their attempts to reach out to me. BUT THIS IS CRITICAL. It often takes a special effort to connect with other parents. It takes being willing to be vulnerable.
Finding the courage to look for a support group and interact with others will be very important for your health.
Support Groups
Finding respite care can make attending a support group challenging, but many support groups offer this care if your child is able to go in person. If your child is homebound, then finding in-home respite care needs to become a priority. It has to.
Many churches offer special needs programs and support groups. Typically, these are large churches. Now, you may not be a Christian. Or the support group may not be at a church or denomination that you would typically go to. I still encourage you to go and connect with other parents—to receive mutual support and understanding.
In a support group you can begin to feel supported, understood, and accepted.
You can form new friendships and begin to learn that your thoughts and emotions are normal. This can help you feel validated and lower your stress level. You can even begin to find meaning and joy in your life again. Others in the group will pray for you. And they know how to pray, because they know how it feels to go through similar events with their children.
Online Groups
I wish that instead of dropping off social media, I had joined special needs and medical momma support groups. If only I had joined the Facebook group for my daughter’s syndrome or the wonderful groups for feeding tube life, I would have begun to see that there were other moms experiencing the same problems.
When I began to join these groups, just this validation alone, began to help me realize that I wasn’t alone
And, I’ve learned feeding tube and other medical tips that I wish I had known when Bethany Grace first came home from the NICU!
Join our Facebook support group Disability Moms Living Strong
Read more about the benefits of support groups.
My Challenge to You
So here’s my challenge to you–even if you don’t feel like you have the physical or emotional energy, take one step within the next seven days to begin to connect with others.
What advice do you have for other moms?
Share your ideas in the comments below.
I pray that you begin to connect in a deeper way with others.
Blessings,
Kristin
Kristin Faith Evans, MA, MS, LMSW
Kristin is an author, a speaker, a mental health therapist, and a special needs mom. Her greatest passion is walking with others on their journey to deeper faith and emotional healing. As a Licensed Masters Social Worker and with her Masters in Christian Education, she has served in youth, camping, and retreat ministries and is experienced in Christian counseling, couples and family therapy, substance abuse treatment, and crisis counseling. Kristin lives with her husband, Todd, and their two children in the Nashville, TN area. When she is not enjoying life with her family, writing or working with clients, you can find Kristin training for triathlons, reading, or simply being out in nature. Visit her author website at www.KristinFaithEvans.com.
Disability Parenting
True, from-the-heart, helpful advice, as always!