One of your biggest challenges, EDS Mama, is finding doctors that feel like part of a team to help your child. With so many body systems involved in EDS, we go from doctor to doctor trying to address all the problems our child is facing. We schedule appointments with a variety of doctors at multiple facilities (possibly even outside of our state) who are usually specialized only in their area of expertise. We have no idea if they are familiar with EDS or what their attitude toward us will be. You likely have notebooks filled with medical history at your house and have to decide what is pertinent to take to a first appointment. When you finally sit face to face with this doctor, he or she may not even care to look at any of it and may not be interested in really listening to you. Before even entering your room, he may already have made up his mind that you are overreacting to your child’s symptoms and are making things worse by dwelling on them. You will meet doctors who think that because they work at a specific establishment, they already know everything, and yet by their attitude and words, they show that they do not know the first thing about EDS or dysautonomia. They are ignorant bigots. Sometimes the best thing you can do in these situations is to say thank you and move onto the next doctor.
This process gets discouraging to put it mildly. Unfortunately for so many, it may take years to find compassionate doctors who understand EDS, and as a result, you will be forced to be under the care of one or more of these abrasive types for a long time just so your child can receive some kind of care, even if it is not the optimum. It will be hard, but you will learn some important lessons. First you learn humility because they right away make you feel very small, like you do not know anything. But humility teaches you that this journey is not about us, but about God. You learn that doctors are only doctors, not God. They do not have all the answers. You learn that God may have placed you in this doctor’s presence more for him than for you. We have no idea what this person even thinks about God. I pray for boldness for you, dear one, that you will never lose an opportunity to humbly point that doctor back to his Creator. You also learn to search for the kind of peace that only comes from God. The days leading up to an appointment with one of these types would create tremendous anxiety for me. All I could do was pray constantly, especially in the waiting room and throughout the appointment. You learn that GOD may provide some help through this individual but it might be contrary to your thinking. I have seen that sometimes what God provided through this doctor turned out to be the best thing for my child in the long run. It reminds me that my plans are not always what is best for my child, but God’s plans are always perfect. If your child happens to improve while under the care of this prideful, abrasive doctor, he will likely think it is due to him and he will puff up even more! This has a way of humbling me further. In these cases, I try to control my tongue, smile, and in my heart thank my Father who is working all things out for our good.
But do not lose heart, my friend! You never know when God is going to change your direction and send you a wonderful doctor! It happened again for us just recently after carrying a heavy burden for several years trying to work with a particular doctor. When God finally sends you these gems, it feels like the heavens have opened up and choirs of angels are rejoicing! My heart still feels giddy at this recent change; such a huge weight has been lifted. I will not fully understand the work of God and why He allows the things He does, but I fall to His feet and praise Him when I see Him answer me, sometimes after many years of praying. You know right away when you have found one of these doctors. They are good listeners, are familiar with EDS and dysautonomia, are quick to admit they may not have all the answers, and are genuinely concerned with helping you. As a result of my experiences with doctors, God has shown me not to put all my trust in these good doctors either. They may be wonderful doctors, but I have to keep God first as my Great Physician.
You are not alone on this difficult journey, EDS Mama. We may not have met, but I am praying for you still. Jeremiah 33:3 tells us, “Call unto me and I will answer thee, and show thee great and mighty things which thou knowest not.” It may take time, but He WILL do it in HIS time.
I know, EDS Mama, how gut wrenching it is to watch the child who once loved food, things like steak and potatoes, now struggle to get in enough calories, exerting tremendous amounts of time trying to figure out what might be consumed without pain today. Perhaps you are in the middle of learning how to administer TPN or a liquid feed for an NJ or GJ tube. You have no nursing background and yet you are expected to quickly learn how to safely feed your child knowing that a small mistake could result in a deadly infection. It feels like an overbearing weight. Somehow God enabled me to be able to do everything I had to do in spite of the enormous fear I felt at the time and He will do the same for you.
Even when I felt inadequate, God showed me that He would protect my daughter. TPN or Total Parenteral Nutrition carries with it severe risks. It can literally destroy one’s liver quite quickly since our bodies are not made to be fed a sugary liquid through our veins. Unfortunately, sometimes an EDS Mama is left with no other choice for her child. Facing this, Matthew 6:25 takes on new meaning when one reads, “Therefore I tell you, do not worry about your life, what you will eat or drink…” In spite of all the risk, we watched how TPN actually strengthened our daughter as the body began to receive nutrition that it needed.
We have also witnessed the long term effects of poor nutrition. Fatigue begins to set in without an adequate energy source, muscles begin to waste without protein, an EDS patient may become wheelchair bound, POTS or dysautonomia symptoms become heightened as the body becomes deconditioned, and even teeth, hair, and nails exhibit signs of malnutrition. Everything just goes downhill without proper nutrition. With EDS and dysautonomia, there are many factors which play into these challenges including delicate tissues and lax blood vessels, visceral hypersensitivity, vagus nerve involvement, GERD, gastroparesis, nausea, vomiting, and ulcers caused by pain medication. It takes a multi-faceted approach to keep everything in balance and only other EDS Mamas will truly understand what it feels like to be in the middle of this web that seems to ensnare our child. It is difficult to maintain the joy of preparing meals for the rest of the family when even the smell of food nauseates your loved one and drives her to her room.
I would encourage you Mamas if your child is still eating orally to not give up trying to find foods that are tolerated. There are many types of protein supplements on the market from whey to rice to pea to egg protein which can be mixed with almond or rice milk or even water. One protein drink sipped slowly throughout the day is better than nothing. Protein helps to maintain muscle mass and remember that even the heart and brain are muscles. Perhaps a small amount of brown rice and well cooked vegetables might be tolerated. Homemade gelatin made with kosher gelatin and real fruit juice is fairly digestible. Greek dairy, soy, or frozen yogurt are soft consistency foods. A spoonful of peanut butter adds protein and calories. Organic, cooked oatmeal gains more calories with a bit of brown sugar on it. We found that more natural foods were better tolerated than those filled with artificial ingredients. What works on one day may not work on the next. And on really bad days, clear liquids will at least keep your child hydrated. Homemade broths can provide hydration along with calcium and minerals.
Try not to be discouraged if food by mouth fails. God will intervene and make a way for your child. You may be in a bad place right now with eating and drinking, but do not give up hope for better days to come. Even children with tubes and TPN can recover to the point of not needing these interventions. I know you get tired of having to deal with things that most people never think twice about, but God sees everything you are going through. If you are watching your child deteriorate physically due to eating challenges, remember that the physical body is only a shell for the spiritual body living inside. It comforted me to know that when I saw the physical body very tired and wasting away, that the Holy Spirit was very much alive inside. That is the neat thing about our faith. Our hearts can be on fire for God no matter what happens to our physical bodies. As a Mama, this spurred me on to continue to feed into the spiritual by talking to my daughter about God, eternity, and His promises to us in His Word. 2 Corinthians 4:16-18 NIV says, “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” This passage makes me feel like God wrote it just for me. But it is for you also, EDS Mama.
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.