by Band Back Together | Jul 15, 2015 | A Letter I Can't Send, Abandonment, Emotional Abuse, Emotional Boundaries, Family, Fear, Grief, Help For Grief And Grieving, How To Help A Friend Whose Child Is Seriously Ill, Loss, Pediatric Caregiver, Pediatric Mental Illness, Relational Aggression, Sadness, Stress, Teen Bullying, Trauma, Trust |
You have broken my heart;
you have cut me to the bone;
you have stabbed me in the back;
you have endangered my children;
you have stolen from me;
you have threatened to kill me and it seems every time we talk you spew out nothing but lies.
I failed you. As the person who brought you into this world, it was my convoluted job to make you appropriate for society.
If you had been an only child, would it have been different? If you had been an only child, would I have given you more leeway so I did not sacrifice your siblings humiliation, safety and discontent?
We moved for you. It was the area, the neighborhood, the school, the doctors. I did everything and gave all in hope that the problem wasn’t really you.
Doctors, therapists, counselors, hospitals; things a mother should never have to say about her child, I said.
In the end, I failed you.
For many years, I was a mighty warrior set out to ensure your health and happiness, but you broke my spirit and I gave up. I want so badly to let you in, but the price is so high and I am emotionally bankrupt.
You deserved a stronger mother, one who could stay in the fight, one who could be more understanding, one who could battle for more than 19 years. I am so sorry you ended up with me, who tried to make you fit in a cookie-cutter mold. I still have no clue what kind of mom could have helped you.
It wasn’t me.
I battled uphill to mend my broken life while trying to protect yours. The spiraling, all-consuming, soul-sucking, constantly being kicked and punched, that was all beyond me.
I’m sorry I am so broken and weak that I can’t afford to be hurt again. Everyone in your world has disconnected over the years in the simple and often subconscious act of self-preservation. But in everyone’s life, there should be at least one constant, one person you know will always be there. You don’t even have that.
I hurt you.
I insulted you.
I embarrassed you.
I punished you.
I hospitalized you.
I let you down.
I lied to you.
I threatened you.
I had you arrested.
I closed my door to you.
I laughed at you.
I walked away….
I didn’t ever deserve you, and you certainly didn’t deserve me.
by Band Back Together | Nov 16, 2010 | Anger, Caregiver, Faith, Family, Fear, Feelings, How To Help A Friend Whose Child Is Seriously Ill, Maple Syrup Urine Disease, Pediatric Caregiver, Pediatric Transplant |
My daughter has been waiting over nine months for a liver transplant.
And my daughter is angry.
She’s angry at God. In her eyes, He’s the one who created her with this disease, it’s His fault.
She’s angry with me. I’m her mom. I am the fixer of boo-boos. Yet with this, I am powerless, and that frustrates her.
She’s angry with the transplant coordinator; afraid that she’s completely forgotten about her.
She’s angry with the organ donors who, as terrible as this is, haven’t died yet. She doesn’t completely comprehend that a tragedy has to happen to a family in order to have her transplant. She just knows that a donor has the liver she needs.
I try to soothe her anger, but I’m not very successful.
Maybe because I am, well, not angry, but frustrated too.
by Band Back Together | Oct 8, 2010 | Anger, Caregiver, Chiari Malformation, Chronic Illness, How To Help A Friend Whose Child Is Seriously Ill, How To Help A Friend With Chronic Illness, Marriage and Partnership, Marriage Problems, Migraines, Pain And Pain Disorders, Pediatric Caregiver |
Yeah. . . I don’t really know what I’m doing, but I have things to say (ed note: if you have things to say, you belong here), so here I am.
First of all, I am not the one in pain, so if you are reading this and you are and you want to tell me to shut my big fat mouth, because I don’t know what the hell I am talking about, feel free. However, the two people most dear to me suffer from chronic pain, and there isn’t a damn thing I can do about it.
Sure, I can provide comfort and try to make life a little easier, be sensitive, kind and gentle, remind my loved ones to take their medication (even though my husband’s on so much dope, it’s turned him into someone I don’t even know and I hate that). But beyond that, I feel helpless.
My husband was diagnosed with RSD (Reflex Sympathetic Dystrophy) in late 2004-2005 – 6 months after a “mundane” farm accident and three mother f-ing months too late for him to get the aggressive treatment he needed. He had a spinal cord stimulator put in that was supposed to “mask” the pain. Ha. The pain affects his right foot. He says it feels like someone poured gasoline on it and lit a match. Chronic depression has ensued; he was suicidal for awhile. AND THERE WAS NOTHING I COULD DO TO FIX IT!
Meanwhile, in 2008, our daughter began to have chronic headaches. Not just ordinary ones, but the kind with tons of pressure in the back of her had. She began to have dizziness, trouble with balance, nausea, vomiting, blurred vision. I thought it was PMS. (She’s thirteen now).
Really, PMS, dufus?
Yeah, well, turns out she has something called a Chiari Malformation with syrinx, which required surgery. . .on our baby. . . near her brain (duh, that’s why they call it neurosurgery). AND THERE WAS NOTHING I COULD DO ABOUT IT! Risks, yes. Would her headaches go away? Probably not, but she might be able to continue to have the correct use of her extremities and bladder if successful – a plus for an adolescent.
Now, in 2010, my husband is still in pain every day. He can’t walk. Our daughter wakes up with a headache every single day. I hate to see them in pain.
But, they are still with me. Our daughter has a relatively normal active life. Thankfully, the syrinx has significantly diminished – which is awesome and huge. We have each other. I know that I have so many things.
We live on a farm, so I’ve learned about taking care of livestock and how to charge a car battery and do a little work on a four-wheeler. I can cut wood to heat our home if necessary. I can shoot a gun. A country girl CAN survive, after all. I’ve learned I can be stronger physically and mentally than I’d ever thought. I’ve learned how to talk to doctors and ask questions, even if the answer might rip my spleen out. My heart has been broken so many times that I wonder if I even one left.
Most days I am thankful for the blessings we have.
Some days, like today, I’m angry as hell.
