Have you ever observed your chronically ill child during a conversation focused on goal setting? I have. It is interesting to see my now college aged child’s subtle reactions as others attempt to encourage her to set short and long-term life goals which are often centered around education. Many times, the other person is not fully aware of the day to day challenges my daughter faces. You may watch also as your child politely smiles and receives the well-wisher’s encouragement, but you know your child well enough to know he or she is holding back an honest response, one that yearns to break down and cry out, “if only you knew how this subject is so difficult for me and yet so easy for you!” Perhaps this stems from years of coping where a person erects walls with others, walls that don’t allow people to truly see into a chronically ill life, walls that prevent others from hurting the heart, if only unintentionally because they have not walked the same road and, as a result, see life differently.
The subject of goal setting may be a reminder to a chronically ill person that in some ways, he or she has not progressed at the same rate as siblings or peers. It’s the stark reality that life can feel like a turtle’s pace with health challenges. He or she may look inward and not see any progress at all as if a life has been frozen in time.
This is where the love of a parent intercedes. We are able to remind our sons and daughters that comparing always sets us up for failure. There is always going to be someone more beautiful, more affluent, more educated. Chronically ill or not, our focus must be on God and nothing else. It is true that education can open doors of opportunity, but I have shared with my daughter that much of what I deem successful in my life has little to do with my degree. It has everything to do with how God used the mess of my past so that I could be used for His purposes to walk beside someone who suddenly found himself on the same road that I have walked. As parents, we can encourage our child with an outside view of him or herself. We can share with them how we have seen progress. Perhaps your child has moved from a place of not being able to care for self at all to a place where she can manage medications and appointments, take a class, wash and fold her own laundry, help with dinner, exercise, or even work part time. This might not be the final resting place. The harsh reality of chronic illness is that one never knows where the plateau is; am I at the place where this is as good as it gets? However, it’s my faith in God that stirs my soul to believe He is able of far greater things than I could ever imagine (Ephesians 3:20). I have to believe that God has prepared my daughter for an amazing task that only she can fulfill, just as I believe for each one of my children. In addition, as adults we know that progress is made over a lifetime which is why it is important to continue to set both short and long-term goals. Goals don't have to be all education or work related. They can be personal spiritual, emotional, or relational goals.
When people attempt to encourage my child to dream big, I must remind her that they mean well. In their hearts, they believe she can accomplish anything she desires. We cannot expect them to understand the heart and mind of the chronically ill if we do not let them into our world where they can learn that their goal may be a four-year degree, but the goal of a chronically ill person may be to take one class a semester or simply to get out of bed that day. We must teach our children to be confident in who they are, to understand the value that God has given them, so that they can sift through well wishes of others and not be left feeling like they are falling short.
To be vulnerable with others may mean we get hurt along the way. Even those who love us will hurt us. I would rather live my life with that possible risk than to live inside massive walls where I am safe yet alone. Jeremiah 29:11 says, “’For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’” It is good to set goals, but we must remind ourselves that it is God who holds the plans.
Well, I finally broke down and bought a cell phone for my eleventh grader. Can you believe teachers are actually utilizing these cell phones in the classrooms these days? Times are changing. It used to be that a student better not be caught with these devices, and yet, in the last couple of years, some teachers have actually thought that my child was lying when he claimed he did not have a phone to use in the classroom!
A couple of weeks ago, I received a text from my son a few hours into his school day. My first thought was, “He better not be texting during class!” Turns out, he wasn’t feeling well and wanted to be picked up. On my way to the school, I had a flashback to my years as an EDS Mama. I clearly remembered driving through the same roundabout years earlier on my way to the high school to pick up my daughter… AGAIN! I had endured years of receiving phone calls from schools, where she begged me to pick her up because she did not feel well. (Mind you, we lived through about eight years with no diagnosis, so you fight against a lot of mind games, as you can imagine; you begin to wonder if your child is really sick with anything at all or perhaps is suffering from some sort of adjustment disorder.)
So, as I drove through the same roundabout this day, I remembered all too clearly when years earlier, I was at my breaking point. Back then, on a day I will never forget, I had called my husband as I drove to the school. Out of all the frustration that was within me, I was literally shaking, sobbing, and screaming into the phone, “I can’t take it anymore! I can’t keep doing this!” I was completely worn out with trying to keep my daughter in public school while fighting a chronic illness of which we did not know the name. It had taken a toll on this Mama.
Today, I was only driving to get my son who was lucky enough to pick up the same bug going around the entire school. I knew in my mind that, logically, it would not turn into the same endless cycle I had lived years earlier. And yet for a split second, that panicky rush of emotions came flooding back to my mind and body. I met my boy in the school office and he very calmly walked out of the building and climbed into my car, only to sleep the rest of his day away, which was unusual for him. By the next morning, he was rested and energized enough to go back to school, and life went back to routine for him.
But oh, how my heart ached as I remembered how life did not go back so quickly for our daughter with EDS. And life for this EDS Mama back then was turbulent. My heart felt connected to you today, dear one. Your path is not easy and you may be at your breaking point with endless drives to school. You WILL get through this, and one day, you will look back on it and be thankful it is behind you. Until then, take a deep breath, do what you need to do, and keep telling yourself that God is with you; you are not alone. “Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you”, Deuteronomy 31:6 NIV.
Come make a cup of hot tea and sit down for a bit, EDS Mama. I know how much you have been carrying and how hard you fight everyday for your child. You fight with doctors and insurance companies, even with the school. “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” Matthew 11:28-30 NIV. Just take a deep breath and let those words feel good for a few moments.
As a mother, I felt tremendous pressure surrounding school while my daughter was in junior high and high school. With all her health issues, it was difficult for her to attend school. On top of that, we had no diagnosis which made her absences really hard to explain. I even worried that I would get in legal trouble for her truancy. I knew that I could home school her and probably get around this attendance issue. I practically begged my daughter at one point to agree to homeschooling and she adamantly said she hated being home and wanted so desperately to go to school and see her friends. She did NOT want to be home schooled! Great for her, but not great for my anxiety on this issue!
During high school, the absences grew into two to three month spans of missed school and I began to consider having her drop out. Kids in my day did it all the time! It was the school counselor who told me about Homebound Services. With a note from our doctor, the school assigned her a Homebound teacher. This teacher would talk with all of her teachers, gather assignments, bring them to our home, and take completed assignments back. He was able to see the actual state she was in and advocated for her to have the workload reduced. Some teachers were more understanding than others. When she could not do any work at times, most teachers simply took the few assignments that were completed and gave her a grade for the marking period based on those assignments. In this sense, her fairly good grades were not really reflective of the state she was in. In fact, one difficult and disbelieving doctor would later look back at her grades and argue that she did exceptionally well during high school. Oh, how I wished at that appointment that we had made her drop out! It made me question if I had done the right thing for her. But looking back, I'm so grateful that she was able to complete her high school diploma.
In spite of this, we were so blessed by her Homebound teacher. He was her favorite teacher and even though he had a sarcastic, joking nature (which my daughter also had and appreciated), he had compassion as well. I could see it in his eyes. It was many times the highlight of her day to see him and I can say that over the years, she has talked of him often even during times she has been very sick. He had a way of helping me think that everything would be alright as far as the school was concerned, and it was. God continued to provide for all of our needs over the years and Homebound Services was part of His loving care. In the big scheme of life, completing high school isn’t as big of a deal as I made it out to be. It is always an option to go back and finish it later.
So, when you are feeling overwhelmed with school, Mama, sit and remember what a short time this life really offers compared to eternity. In James 4:14 NIV it says, “Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.” GOD will provide everything your child needs. It is not all on your shoulders. Will you allow Him to be God today?