EDS Mamas are hurting creatures. We may feel alone, misunderstood, sad, and disconnected. Nobody gets us! Our current friends simply cannot understand us, our husbands wonder who we have become, and some days we don’t even get ourselves! It is human nature to want to be understood. It will not change our circumstances, but in some way, it makes our load lighter, if only for a moment. Something about being understood feels like a breath of fresh air. We want it so badly, but we just cannot find it.
You might try searching for an understanding ear by joining some chronic illness groups on social media. I thought surely those who had walked a similar road would be able to relate to me. Well, I did find other EDS Mamas through these groups who were just like me and we were instantly connected because of a mother’s love for her sick child. But darkening the joy of connecting with these mothers was the storm cloud of running across a lot of seriously hurting individuals who were angry and somewhat belligerent, perhaps rightly so. They had been deeply hurt in their lives and it was evident. Some just could not open their hearts to another hurting person who had a different viewpoint on subjects that should have connected us through our common journey. I was a bit surprised by this because EDS has caused me to respect others’ medical choices, a lesson I thought most in these groups would have learned. I was spending way too much time trying to find just the right words to explain my viewpoint and diffuse the situation. I found myself feeling anxious and questioning what I was doing, wondering if my mission was worth the heartache it was bringing into my life.
Eventually, after much prayer, I decided it was not worth the toll it was taking on me. I pulled myself out of these groups with a determination to focus on my blog, hoping that God would orchestrate His deliberate connections. After all, I did not have to help God out! Those who wanted to read my blog, who felt it was encouraging, would continue to read it. This lifted a big weight off. This time around, I used my personal social media page to connect with friends and family and it became enjoyable again even though its shortcomings remain in the “friend world.” It can still leave one feeling lonely, not quite fulfilling those deep needs to be completely understood. I am grieved somewhat for those who are housebound due to disability as many of them use social media as their sole source of friendships. It cannot possibly take the place of real life relationships.
You might also try to find connections with others who can relate to you through attending support groups. While these places gave me a sense of feeling understood in some regards, it became difficult to hear so many experiences that were even more devastating than my own. I tend to take on the hurt of others and sometimes these meetings weighed heavily on me. On the other hand, I miss these folks when I don’t attend regularly and I do need to visit some of these again to catch up. Also, those who oversee these groups not only aim to raise awareness in the community, but also work hard to provide valuable information to those who attend the support groups.
You could also try to seek out other mothers who have chronically ill children, however, those friendships I have gained are ones God brought to ME and so I continue to pray for Him to send me more! Still, these relationships (even though they may be ordained by God Himself) present some challenges or should I say, present some opportunities for us to learn lessons that God has for us! One must ask God what it is He wants us to do with these connections He has placed in front of us. We should desire that all mamas move forward in their lives. Sometimes another mom will choose a different approach with their child than we are choosing. Do not be disappointed, sweet mama, if you find this relationship that you thought God sent your way is changing direction at some point. God is refining you through what feels like an impending loss! It might not be healthy for this friend to continue to spend so much time with you because they need to focus very differently than you do. We may hold them back in their progress just because of our medical choices. It does not mean we no longer care about one another. On the contrary! We have to allow others to do what is best for their child and their families. This can be a painful process because you may have become attached to this mother. But when we release them into God’s hands, we can be ready for the next one that will come across our path who we are meant to encourage. AND you can always be connected through praying for them!
Social media, chronic illness groups, support groups, human friendships…they can all leave us feeling unfulfilled and lonely still. I am NOT saying these avenues are bad! They just simply cannot ever fully meet all of our needs. There is one friend who sticks closer than a brother, one who will pursue us and want to spend time with us. “No longer do I call you servants, for the servant does not know what his master is doing; but I have called you friends, for all that I have heard from my Father I have made known to you.” John 15:15 ESV. He won’t EVER turn away from you and it will only feel refreshing to be with Him! Once you find this friend, you won’t need to search for understanding in all of these others replacements that never fully satisfy. Are you ready to accept His friendship? He is waiting for YOU! Psalm 139:2 MSG says, “I'm an open book to you; even from a distance, you know what I'm thinking.” He knows you and He will support you perfectly.
I was exhausted beyond exhausted. The last several days had been very full. I reclined on my daughter’s bed to talk with her and as I conversed with her there, I began to consider shutting my eyes for a bit and snoozing a while in hopes of gaining a second wind to carry me through the last few hours of my evening. I might even be tempted to sleep right through until morning. Just as the sweet allure of this temptation began to set in, my phone rang. Oh no. It was a friend from church. I knew her as an assistant in the children’s program. Of all days, she probably wanted me to substitute for her tomorrow morning. Here it was, Saturday night and I do not like last minute plans. I have to admit that I let the call go to voice mail because I did not even have the energy to speak with her. My mind went back to the last time she called me looking for a substitute. That time, I was unable to help her because I was going to be out of town. As I laid there with my eyes closed, a little voice started to tell me I could go to bed early and that I would have more energy in the morning. I clicked a few buttons to listen to her message. Sure enough, she was looking for help the next morning. When I called her back, I learned I would not have to prepare anything to teach the kindergartners through second graders. I was only filling in as a helper. I simply had to show up and be present. That I could do. I agreed to help her out and she thanked me over and over.
The next morning with tears in my eyes as I listened to the teacher speak about the video the children had just watched, I realized that God had determined for me to be there. The “bottom line” of the message was that “Knowing Jesus Changes Everything.” I became emotional as I realized these children did not yet know the full life impact of this phrase. I felt humbled to be in this moment where this amazing truth was hopefully entering little hearts where it might grow to the point that it could be pulled out during a tough trial as an adult. See, my friend, knowing Jesus changed everything for me. It changes our whole perspective during the storm. It allows us to cope and persevere. It means we can see beyond our circumstances to minister to others in the moment and see a future for ourselves that has no burdens and is only full of goodness. And it changes us forever. Knowing Jesus really does change everything.
The verse we focused on this day said, “Now faith is confidence in what we hope for and assurance about what we do not see,” Hebrews 11:1 NIV. My mind flashed back to many dark days as an EDS Mama where I could not see Jesus even when I was looking for Him. I had to come to the place where I had confidence He was there even when it did not feel like it. I thought I had faith when I was a child, but I realize now that it was in this long, difficult journey as an adult that He was burning faith into my heart. Do you still have hope, Mama? Do you know there is so much we cannot see? “And He said: ‘Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven.’” Matthew 18:3 NIV. Go to your Father in Heaven as a little child and He will build your faith.