With EDS comes pain in a lot of different forms. Even Dysautonomia can be part of the culprit as nerves are involved. There is pain for the patient which may be physical in nature, emotional as one deals with limitations, or even spiritual as he or she may question the mercy and plans of God. Then there is pain that siblings encounter, that friends and family encounter, and pain that parents endure as they watch their family being tormented with what seems like an unfair providential plan.
What I’d like to focus on here is the pain that a Mama feels watching her child in severe pain. This subject is very difficult to re-visit, but by God’s grace, I do in hopes of spurring you on, dear one, to endure and believe in God’s love still. This was THE most difficult challenge for me over the years. As a mother, it is our privilege and joy to protect our babies and children. God made us that way. Our daughter first started to encounter severe pain in 6th grade. At that age, she was still a little child. At that time, we had no diagnosis. This meant that in addition to watching our child in severe pain, we had to endure interaction with doctors who did not believe her simply because they could not explain it. (Don’t you hate that “if you can’t figure it out, blame the patient” mentality?!) Not only were we afraid of how we were going to control this pain at home, but without doctors believing her, we knew it was a possibility that they might leave her in that state only to refer her to a psychiatrist. (Funny thing when we finally got a diagnosis, we discovered that the number one presenting symptom of EDS is severe pain. What a shame it took so many years to diagnose.) Finding doctors who will treat pain in children is very, very challenging and even into the early twenties it is just as challenging.
If you end up in hospitals as we did, you will see signs all over that tell you that as a patient, you have the right to have your pain controlled. I get angry when I see these. They are not true at least with EDS. The best advice I can give any Mama is that as much as it hurts to watch your child suffer, you must accept the pain to a large extent. Even today at age 21 our daughter functions at about a daily 7 or 8 on a pain scale of 1-10. If I did not accept that she would have to live in daily pain, it would have destroyed my heart. I simply could not endure it. Your child also must accept the pain. There is no magic pill that will just take it all away and accepting that will help everyone to be able to cope. That does not mean we don’t still have hope that her pain might be reduced further down the pain scale.
I questioned God as to why He would allow such suffering for no apparent reason. He showed me that only He could understand my pain as I watched her. See, He watched his own Son die on a cross for people like you and I who do not deserve this kind of love. The pain that Christ suffered through that sacrifice cannot compare to my daughter’s pain. Still, I argued with God that His Son’s pain served a purpose where my daughter’s pain had no purpose. He reminded me that I could not see all the ways He could use my daughter’s pain for His purposes. I also could not discount the work that He was doing in our daughter’s heart. What child suffers such severe pain and does not come out changed as a result?
Coping with severe pain hurts a Mama’s heart. He may have entrusted this child in your hands, but he or she BELONGS to God alone. Accept the pain but be assured God is there in the midst of it all. He will strengthen you to endure if you lean on Him. You cannot handle it on your own. “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9 NIV
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.