Most children have many roles and things that they want to be when they grow up. I was unique in that mine never changed. I had contingency plans, but all I ever dreamed of and wanted was to have 12 kids and live on a farm. My favorite books are and were Cheaper By The Dozen, and Joe’s Boys. When I met my husband I made it clear that no matter the sacrifice I wasn’t going to work. I would be home with our children and we would have as many as possible. I love cooking, baking, sewing, cleaning, playing with and teaching children, and I love everything about being a mother.
Before our son was born, I lost to pregnancies to miscarriage. I was devastated. It was early, but my desire to be a mother was so strong that losing even one precious child took a piece of my heart and soul. I nearly lost Ben throughout his pregnancy and delivery and was blessed immensely to be made a mother by him. Post-partum depression, sleepless nights, and a sick husband made his early months extremely difficult, but I would not change any of it. Raising him has been my focus and goal for the past 7 years, and will be until he leaves our home.
I was devastated when a year after my sons birth, I developed symptoms of endometriosis and adenomyosis that were so severe that my only option was a hysterectomy. I was only 25. I had the surgery, went through counseling, and we decided to try to adopt. We had a foster child that I had to rip screaming from his mother’s arms weekly, and that hated me because I took him from his mom. When we were told that we had to transition him back home I could not take the separation and the slow loss, so we chose to disrupt placement, and as a result were told that we can never adopt through the system in Nevada again.
We found another agency. They were wonderful. They didn’t care so much about my ongoing medical issues, and tried to find a child to place in our home for 3 years. In 2011 when my medical issues flared to the point of making me disabled we closed our file with them, and I let go of my dream of having more children.
I had Ben. He was perfect for me, and needed me to raise him, and it takes all the energy and stamina that I have just to keep up with him. I settled on the idea that I would develop a career path, and chose to work with autistic children. I loved my job, and the children I worked with. They became like my own. A month ago, my doctor informed me that because my immune system is so compromised and other factors I am disabled, and should not even try to work. I have been denied disability benefits twice. Now I have multiple letters stating that I cannot work. No career, no children, but at least I still have Ben.
4 weeks ago, my child was ripped from me. He is still here, but he is angry and different. He alternately loves me and misses me even when I am there, and rages against me. I have to push him to learn skills that he lacks and do things he doesn’t like to teach him how to deal and function in society. My happy-go-lucky, quirky, busy kid is now a stranger who is angry and withdrawn, and my heart is again broken.
I don’t know how many times a heart can break before it cannot heal. Every hope and dream I have ever had has been taken. I don’t dare hope this month. I am taking it day by day, and crying. No more babies, no career, no health, and now my precious child is a stranger to me. My husband is struggling with all of this also. His stress and work issues make him angry and frustrated everyday. He comes home angry, my son comes home angry, and we fight until bedtime, when they both pass out. I have never felt so alone and so helpless. Even when I was in the hospital and they weren’t sure what was wrong, and my heart rate and blood pressure were so low they could barely sustain life, I did not feel this loss and pain.
I have begged for the release of death because of the severity of pain and the confusion and frustration and simple incapacitation of medical issues. I have even been hospitalized because my thyroid failed and I became suicidal. I have hit rock bottom again and again. We can’t pay our bills because of my medical and I cannot work to help with that. Guilt is my constant companion. I have great faith, and am devoutly religious, yet at this juncture I feel no comfort, no sustaining presence, no helping hands, or peaceful moments. I am terrified of losing more. What and who am I without my spouse and son. I cannot work. I cannot teach, I am not healthy enough to even get out of bed some days. I am in constant pain. It’s like having the flu all the time. I have nerve damage throughout my body. My feet and hands burn. I have no desire and limited sensation, which may be too much information, but there it is. I know I am depressed. I have had panic attacks almost every day since my son was diagnosed. I cannot save him from this. I can teach him, and offer him every intervention and service I can find, but I cannot take this away. I don’t have the finances to see the best doctor’s or even implement all the alternative therapies that he may need. We barely have enough to cover my medical expenses and medications, and they keep me alive.
So, how does a disabled, chronically ill mother care for a disabled child? How do I help my husband? Where do we find the financial means to buy medication or see doctors? There is so little left to cut out of our budget. It is so easy to judge us from the outside. To tell me I lack faith, or that we aren’t living on a tight enough budget. It is so easy to tell me that I should be hopeful or count my blessings. I have heard it all, studied it all, and know it on an intellectual basis. However, in my heart, and mind I have lost everything that matters to me. Our home, car and possessions are just stuff that I would gladly share with anyone that needs or wants them. I can’t even fit in my clothing anymore because the steroids have caused a significant amount of weight gain, and we cannot afford for me to buy new clothes.
I know that we are better off than most. I did not lose my child to death, for which I am grateful. We just visited a third world country, and I saw poverty and struggles there that I cannot even begin to comprehend. I know that we are richly blessed and prosperous. I want to be grateful and have perspective. Instead I am so angry I can hardly breathe. What more can I lose? What more will I lose? Is my husband next? Or maybe it’s our home, or our car, or the medications I cannot live without. Wheelchairs and bed rest are not nearly as nice when they are enforced and never ending. My husband told me to write about all this. I am afraid of losing readers, but I figure there are others out there struggling like me who need to know they are not alone. It isn’t about what you have. You can still mourn what you have lost. My heart feels shattered, and my life feels chaotic and impossible to manage. I don’t know how we’ll get by day-to-day. I don’t know how to endure this. I will because I have to, but I would give everything I have to change these circumstances.
Please tell me I’m not alone. Please tell me that there is help and support out there. Please tell me that things can and will get better. Please pray for us. I will give you anything you want that I can. I would serve and help others. I would be a teacher and a mother of a dozen children. I would work and help with the financial issues in our home. I would do so much. My heart and dreams are shattered, and I am terrified to form new ones. I cannot take much more loss and pain. I know it is less than most, but I also suffer from depression and anxiety, and they are in full force right now. This is my plea to the universe. If there is anyone out there who can help us, or me, please find us. We have tried everything we can think of, and done all that we can. There is no ideal left, just survival. Tomorrow and next week I’ll start listing everything extra that we have on e-bay so hopefully we can get out of this mess. My husband is taking on two extra jobs, and I am working with a lawyer to get disability. Maybe that will be the key. Things have to change. There has to be someone or something out there that can help us. We have great friends and family, but we have tapped their resources to their extent. I don’t know where to turn. I just want to be hopeful or at least peaceful again. So , universe, know that I am officially overwhelmed, lack all hopes and dreams, and will gladly give you all that I have to stop this pain and help my child and spouse. Everyone’s dreams change or are lost/crushed. I want mine back.