I watched my daughter go through weeks of testing and severe pain only to be told that they won't do anything until she meets with her GI specialist... next month. She has fought so hard, endured so much, and it honestly feels like no one will help her in her very well documented battle to survive.
The familiar feelings of rage and fear arise within and I try to distract myself with a book or a TV show. Surely something will help. I have prayed and prayed and watched this vibrant, quirky, intelligent, beautiful twenty-four year old girl get worse and worse. I suddenly understand why people question the goodness of God, when suffering is in your face like this. The images in the news containing war and famine seem so far away from our daily reality. When others question why God allows suffering, I can give the "It's a fallen world" answer.
I thought the hardest thing I would ever deal with was being cheated on. Then I thought the hardest thing I would ever endure was a divorce. Then I thought being a single mom was pretty difficult. I thought unemployment was torture. Then I thought the most difficult thing ever was watching a child be abused and spending years trying to fight for her to be safe. I thought God had put me through the times that I didn't think I could endure. I thought, foolishly, as if I had a testimony already. I didn't expect everything to be without pain and suffering, but I did feel as if my family had had more than their fair share of issues. But, life doesn't work like that. God doesn't work like that.
When it is your child, your perception changes. When it is your child, the fear is raw and physical. And it would be tough to endure if the many "experts" were doing their utmost to help, but the knowledge that the doctors really have no empathy and are content with watching the suffering in a young woman is a horrifying display of exactly how cold our system has become. Last October we were told she wouldn't make it until January when she was supposed to have a needed surgery. It is now April, and she still hasn't had the surgery. She has beaten the prediction, but it has not been an easy time.
It is a brutal world at times, and I will take the love and grace and warmth where I can find it. The cold, hard truth is that many around us don't see the reality of the daily walk through pain. They don't see the tears of pain that come after eating even the most basic meal. They don't see the pill bottles and needles, the near daily trips to the pharmacy to pick up prescriptions. The doctor bills don't come to their mailbox; piles bound together with rubber-bands by the mail carrier so they don't get lost. They haven't carried a grown woman to the car for a trip to the hospital because she is too weak to walk. They don't hear the attending physician walk into an ICU waiting room and treat a young woman as if she just isn't trying hard enough. Their ego couldn't look at the medical records that are the size of several large phone books, and that is only the last four years.
I have questioned God on if I will have to say goodbye, with tears streaming down my face and my heart in a vise. The girl has stated that, if something doesn't happen soon to change things, she doesn't think she will be here much longer. There are those that know what this does to a mother, to a family, to hear these devastating words from a young lady that feels as if her body can't keep experiencing this trauma. I can't imagine life without her, and I know most others that know her can't either.
"She will have an incredible testimony." I hear from some.
"Please..." I whisper silently in a plea to God.
Let her have a testimony. Let God heal her through a miracle, through a doctor's hands, through whatever will allow her to stay with us here. We need her. We love her. I want to be able to tell of what God did in healing her. Right now I can only tell of what God is doing through her illness, and I feel like a hypocrite. It is hard to tell what God is doing when every day has at least one moment of me begging Him to keep her going, to keep me going. I don't have that blind trust that I would hope I would have. I doubt, and those doubts are bigger than me some days. I beg God for this time to allow us to grow closer to Him, but it often feels like the opposite is happening. We are weary. We feel like our pleas are ignored. My husband and I struggle to be strong for each other because we feel so very weak all the time.
I wouldn't wish this on anyone. I know I am not alone. I know other parents are walking through a child that is severely ill. I know other parents are fighting doctors for treatment and care. I know other parents have their hearts in their throat at each downturn, each diagnosis. I know other parents have the same frustration when tests come back with no new clues on what could help. The term "inconclusive" feels like torture. We want a concrete, viable diagnosis with clear treatment that won't require jumping from one doctor to another with each one passing the buck down the road and no one actually doing more than charging for their time. I would love to meet these parents, because this path seems so lonely.
C.S. Lewis said after his wife passed away from cancer, "God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: It is His megaphone to rouse a deaf world."
One thing I know for certain is that life cannot be viewed through the same lens as it was in the past. The pain of this time has definitely roused me from deafness. I can see it in the faces of others that, because this situation keeps going on and on, they think there must be a reason, a cause. Christians have empathy, but only for a certain amount of time. They may feel badly for you, but it isn't their reality. They are human, faced with their own day to day, not a part of the reality of someone else's normal. It is discouraging to see the glazed look on their faces when they politely ask how things are and I tell them about the new tests that revealed nothing or that nothing has improved. So, I have begun to not tell much. I don't want to be a downer. I have begun to withdraw. It isn't that I don't think others care. It's just that it sounds so negative, even to my ears, to not be able to say that all is well. God knows. He has heard the thousands of prayers. A chronically sick woman where challenges extend not for weeks or months but for years doesn't fit into most people's lives. It challenges their worldview, that they are exempt from such crisis because they are blessed by God.
I can tell you that I see blessing very different now.
Not long ago a person complained how they don't feel supported in a new venture. It was a slam, subtle but vicious, and I cried when I read it. I cried because, on the same day, I was trying to find someone that would take my sick daughter to an emergency appointment. I was rearranging my schedule to help out my children so they could get to needed doctor appointments, while running a third daughter to her job. I had put aside my own responsibilities temporarily, to help, because that is what you do for those you love. I realized at that moment that people don't understand, that they can't understand unless they have been there. And while I was hurt, knowing the comment was aimed a bit at me, I also thanked God that this person didn't have to experience what no parent should endure.
I don't mean to sound angry. Actually, I think this is a gift that people are shielded from many of the harshest realities around them. People can only understand from their level of perception. And, thank God. Thank God they aren't asking for prayers for their child's life. Thank God they have the time to surround themselves with like-minded people that will encourage them and tell them they are awesome. Thank God they can be irritated at petty grievances, the traffic or the weather or the slow store clerk. Thank God they have the luxury of complaining about their overbearing boss or how close-minded that person is on social media. I will even go so far as to say thank God that people can be insecure or territorial or petty about things that have no bearing on life and death. Because the alternative is unthinkable. I am glad most aren't walking this path. I am glad my loved ones aren't in this place. I am glad that they can worry about daily issues like the cold their child has or getting to work on time or what to eat for dinner. These are issues that I relish dealing with now because they are normal. I am grateful that I am not watching some one else break down when their child has a tube shoved through their nose, causing them to bleed and gag and cry in pain, to pump out a stomach turned septic from undigested food. I am grateful those of us that have endured that did so with strength we didn't know we had. I am grateful that others can plan vacations and use their talents in giving to the world, for these are the blessings of God. Yes, the things that seem so dire and urgent and important, the things that seem like a hassle and inconvenient, these are the blessings of God.
I sit with my daughter some evenings, laying around on the couch. We watch TV. We play Words with Friends with each other on our phones. We send funny memes back and forth. She doesn't feel well, so we don't do much. Sometimes she snacks a little when she can. She doesn't eat many big meals anymore. She sleeps a lot, so she can have the energy to keep living her life... help with teenagers at church, spend time with a beautiful toddler, snuggle her dog. I see these times as the most precious moments, gifts of peace in the chaos. She may be in pain, but she only lets on when it becomes overwhelming. She takes a pill to calm her anxiety. She gives of herself, in whatever way she can, even though it costs her sometimes. She will forgo sleep to have a few more minutes with those she loves.
Last year, in my social media memories, I saw where we would go walking in the mornings. She can't do that now. She doesn't have the energy. I loved those walks with her. One day, perhaps, we can go walking again. For today, I will be grateful she pushed herself to perform a human video for Easter. For today, I will be grateful that she rides with me to church on a Wednesday evening, listening to music and singing worship songs with me. For me, I will cherish the random text that arrived while I was studying, saying, "You're beautiful. Just so you know."
I don't know what lessons God has in this time. I don't know what He will do with all of this. Right now it is difficult to see what could be when I am consumed with what is. There have been surprises for us along the way. There have been people that have reached out that I never expected. There has also been a shift inside me, somehow, where I feel sacred moments, moments of living in the present and capturing them in my heart.
There have been people and situations where I have had to withdraw. I have cut down on my own goals to focus on what is needed now. I have forgone what I wanted for what was needed. And, I'm perfectly fine with doing so. I have had to step back from responsibilities, from people, from situations and circumstances that are too much right now. I have to be healthy, as much as I can, physically, mentally, and spiritually. I can't give from an empty tank. I can't walk out each day, with the ups and downs that are unique in this time, my heart already wrenched in two, and surround myself with responsibilities that demand too much of my energy and people that choose to see how I am failing them. Not at this time. Not when I am doing my best each day to cherish moments, not when I am living in fear of my prayers receiving an answer of "no." I have overloaded myself in the past and was not good for those that needed me. I have let people speak negativity over me and my life and the lives of my children for too long and I won't waste time with those that seem to feel it is okay to do so.
In the times of barely hanging on, sometimes other things have great clarity.
I long to say, in one year, that I was overreacting. I long to look at this as the past that was tough, but everything turned out okay. I long to brag of the great miracle that occurred. I have to reconcile what I long for with being content with God's will. I have to find peace in the unfair. I have to cherish the little blessings. I have to write what was good, even in the midst of unbearable, or I will forget to see God is good.
