If you have a child with EDS, dysautonomia, or some other chronic illness, you likely have felt overwhelmed at times when it comes to making decisions for that child. When our daughter was a child, it was our responsibility as her parents to make medical decisions for her. Since my husband was continuing to provide for the family by working, many of those daily decisions fell on my shoulders. Thankfully God gave me a mind which could understand the medical jargon and this allowed me to navigate fairly well. When it came to really major decisions, my husband’s input was only a conversation away, however as her daily caregiver, I FELT like all the decisions were on my shoulders. You likely also will find people all around you who also love your child and offer advice. A lot of people wanted to see our daughter get better just as much as we did. However, as the caregiver, this FEELS like added pressure. You feel guilty already that you did not do enough to keep your child healthy, that the decisions you are making for his or her care are not good enough or they are the wrong decisions because your child is not getting any better. You have the insight to know that many interventions, even so called safe, alternative, or natural approaches are not possible because you know how complicated EDS and dysautonomia can be. With EDS and dysautonomia, there are decisions on medications, physical therapy, natural approaches, surgeries, and medical facilities all over the country. When I think of all this now, I just see dollar signs and my heart feels sick.
The blessing for me of this journey is that God taught me to no longer be concerned with what others thought of me and my decisions. I moved from being a people pleaser to being a God pleaser. Who would have thought that God could use chronic illness to heal this Mama? I had to block out all the opinions around me, remove my own emotion, evaluate all the possible outcomes, pray to God for direction, and move forward based on how I saw Him opening and closing doors. Over and over I saw God move me in directions that were in direct opposition to what made sense to my human brain. I had to trust Him that He loved my daughter more than her dad and I did and that even if I made a mistake, He would take care of her and me. One of my favorite verses is Psalm 139:5, “You hem me in behind and before, and you lay your hand upon me.” I pictured God’s hands just cupped completely around my daughter and that comforted me.
As your child gets older and has opinions on her own medical decisions, your load will seem lighter. Sometimes I disagree with my daughter but I have to respect that she lives in her own body and knows it better than I do! If you are an EDS Mama who is feeling overwhelmed with decision making, stop trying to carry the burden all on your own shoulders. Learn to smile and say thank you when people offer advice and don’t feel you have to give explanations for the choices you make. Ask people to pray above all else which will guide you. Remember you and your husband are a team and stay close to God so you can hear His voice in the storm.