Monday, January 25, 2016

I’ll Admit It…

I’m going to write my thoughts here so they don’t get misplaced as a random paper on a stack in the corner or used for a papier mache art project. You don’t need to read it if you’d rather not. I’m trying to come to terms with what our life has become and what is ahead.

It’s time that I say it out loud. My son is sick. He has a lifelong disease that has no cure. I am the mother of a child with Crohn’s Disease. He was diagnosed at age eight after a summer of intense pain, scary symptoms, unhealthy weight loss and doctor appointments that led to horrible tests. They say the earlier a person gets Crohn’s, the worse his disease will be. For the rest of his life. Every moment of his whole life.

I am fearful. I am worn down. I am heart broken. I am ashamed.

I am afraid of what is to come. Most Crohn’s patients have surgery, some multiple times in their lifetime. We could deal with tube feeding, ostomy bags, weekly shots that I myself would have to give my baby boy, expensive special diets, medications that we can’t pronounce. And this could all happen before he leaves home at age 18. I am fearful that he won’t be able to live on his own or that he will become a burden to others. I am afraid that he won’t be able to live the active life that he desires because his body is trying to kill him. I am afraid of the work that needs to be done to keep him as healthy as we can. I’m afraid that he will feel “different” and suffer because of that.  I am afraid of the cost financially to our family. How can we save for his college when the monthly costs of medications are sucking us dry? I am fearful. I am afraid.

I am worn down, worn out, and just plain tired. I am his primary caregiver and it’s a hard job. At times I feel like it’s too hard. My job is to make sure he takes his mountains of pills twice or three times a day and to eat…even when he doesn’t want to. I have changed our family’s entire way of eating and the way I prepared our foods. Easy, ready to go food is a thing of the past. I cook from scratch after I scour the internet and cook books for recipes that will work for his special diet needs. The list of foods he can’t eat is starting to become longer than the list of what he can. I am now on a first name basis with our pharmacist as I have spent much time there trying to figure out the insurance obstacle course. I am tired of searching for natural alternates to replace or assist the man made poisons that we are flooding his body with in our attempt to help him. I am tired of people trying to help by recommending “the perfect diet that has changed their life.” I am tired of my son’s emotional fragility. It seems as if every day I spend more and more time holding him, working on relaxation techniques, and having my heart broken as he sobs against me. I know that it’s mostly the medication and his uncertainty in what is to come. It still exhausts me knowing that each morning I get up, each day will be the same battle, the same fight to get our schooling done with as few tantrums as possible, the same goal of educating both of my children and help mold them into amazing humans. I am tired.

I am heartbroken. With the birth of a child, we as a society have this ideal dream of how our child will be and what he will become. My dream has been battered, flattened and remade. I see how his life could be with this awful disease encroaching in all aspects. It can/will affect all his relationships, his ability to support his family, even the opportunity to have a family. It will affect his finances, his educational choices, his favorite activities and even his vacation destinations. It can affect his eye sight, his nervous system and his skin. It breaks me. I cry tears of heart break knowing that he will have to fight for what others will just “have.” My baby boy weeps. He weeps because of his pain, he weeps because his emotions are out of control because of his meds, and he weeps because his is “different.”  I wish it was me. I wish that I could trade places and give him the chance to just be. I’ll switch places. I’ll battle for him. I already do, every day. I am heartbroken,

I am ashamed. There are other families out there with much more difficult and hopeless battles. Gavin’s disease will not kill him, side effects or complications may, but his life is not at a huge risk. He is able to live a seemingly normal life, at least to those on the outside. He gets to live here at home with us and is able to participate in most of the activities that he enjoys. From the outside, he looks fine. I am ashamed that I am so affected by his diagnoses, so stunned and frozen. I am ashamed at my inability to help him. I read all that I can, keep in close contact with his doctors, and push to get answers. But I can’t fix it. I am ashamed that I can't see all the good that we have been blessed with. We have our farm in a beautiful setting and have the life that we dreamed of. I am ashamed to complain about the money that we spend on his health. We have the money (mostly) and insurance, but how I wish it could be spent on updates for our house, a family vacation or a nicer car that is reliable. As I think of that, waves of guilt drown me, crash over me. He is my priority. I should be happy that he has the life that he does have. Happy that we haven’t lost him. Happy that he gets to live. I am ashamed.

I am hopeful. I am a fighter. We will not give up without a fight, a down and dirty, biting and kicking fight. Crohn’s Disease…You don’t get my son. You don’t get our family. I believe that God the Father has His mighty hands of protection and healing on my children. I believe that he will heal my son, either by his miracle or by the miracle of science. I have hope that in his lifetime, a cure for this disease will be found and made available for all who suffer. I am thankful for my husband and my family as we come together to surround Gavin with support and love.  I have hope for our family and for my son.

My son is sick. I am the mother of a child with Crohn’s Disease.