by Band Back Together | Dec 12, 2010 | Anger, Anxiety, Breast Cancer, Cancer and Neoplasia, Caregiver, Compassion, Coping With Cancer, Fear, Feelings, Loneliness, Love, Sadness, Stress, Trauma |
I’m sorry. Right now, I cannot be a good friend. I am not a good wife or daughter, sister, neighbor, niece or cousin. I love you. I appreciate everything you do for me and for my family. But for now, everything I have, every smile I can eke out, every happy moment, belongs to my daughter. I can’t give you what you want, not today and maybe not tomorrow either. I don’t have enough for you.
My fear is all-consuming. I am endlessly treading its dark waters. Your well-intended positivity crashes into me, knocking me down before washing back out to sea. Your genuine, heartfelt words of hope leave me salty-eyed, gasping for air, bracing for the next wave of “You’re so strong!” or “Kids are so resilient!”
Your generous offers to help are not falling on deaf ears, but I’m afraid my desperate cries for it are. I can hear you happily proposing your casseroles, a walk in the park, an eager ”whatever you need!” I’m sure one day I will very much need those things. Today I just need simple kindness, compassion, companionship. I need you to hug me and hold my hand. I need you to stop worrying about the tasks on your list and just be with me, sit here and keep my head above water.
I realize nothing about this is convenient for you. I know the closer you are to me, the deeper the water, the stronger current. I’m sorry that you’re being pulled in, challenged, diverted from your regularly scheduled life. But this is my nightmare and sadly, you’re in it.
so bite your tongue,
you’re not the only one
who’s been let down.
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.
by Band Back Together | Sep 14, 2010 | Anger, Anxiety, Breast Cancer, Cancer and Neoplasia, Caregiver, Coping With Cancer, Family, Fear, Feelings, Guilt, Stress, Trauma |
I’m not even sure to where to start. Remember that fever? It finally went away. Then it came back. A second set of bloodwork later, the doctor still thinks it’s viral. I get a chest x-ray to rule out pneumonia. Next is a CT scan, then a biopsy. The biopsy has to be done under general anesthesia by a mediastinoscopy, and a bronchoscopy is thrown in for good measure. Now they think I have Hodgkins.
I know that there are readers who will get this so much more than others that have already heard it from me. My biggest fear? What if I have to have chemo and stop nursing my daughter? It’s going to break her little heart (and mine) if she looks up at me, her mama, with her pleading, beautiful blue eyes and signs for her nursies and i have to say no.
I can’t say any more than that right now. I just can’t. This fear is crippling me and the tears won’t stop.
