by Band Back Together | Dec 6, 2010 | Grief, Happiness, Help For Grief And Grieving, Livng Through A Miscarriage, Loss, Miscarriage, Pain And Pain Disorders, Sadness |
Grief is a very strange journey and process. Some days I find myself in the best mood – happy and cheerful and then without warning can be smacked in the face with sadness and tears. Sometimes it happens without warning and one thing I have learned through these 10 miscarriages is that is okay. It is normal and it is okay.
There are times where a certain trigger will bring out the grief and I have been spending some time identifying those and learning to be okay with the emotions that come up. Television has been a big trigger, so has Twitter and Facebook and mostly a specific time of year or date. Those last ones I can brace for {as much as anyone can} or avoid Twitter or Facebook for some time if I feel like I just don’t want to face it for the moment. My husband will brace me for television or movies that might have some sensitive material in it for me and will be there if it gets to me. Those I can all ‘deal’ with. They make sense and can be avoided.
One trigger I am having some trouble coming to terms with – or figuring out just how to deal with – are triggers that are from within my body – normal body functions.
Miscarriages are painful. PHYSICALLY PAINFUL. Cramping and bleeding can be intense and one of my biggest lingering triggers is normal menstrual cramping and bleeding. Kind of a double hit because women can be more emotional during their period and compound that with an emotional trigger response it can be very difficult. Very.
It can sort of throw me back. It triggers me to re-live those days where i was fighting emotional and physical anguish. It leaves me confused. Confused because I can’t avoid it. I am almost certain that the emotions that play into it make the cramps that much worse which is then a cycle that I just can’t seem to avoid.
It has slowed down a bit now because I am on birth control that stops monthly periods but the cramps still come and go and each time I can be caught off guard and will find myself back there.
It is hard. very hard. I am learning that it is okay to feel it. I am learning to sit in the grief because running away from it will not make it disappear. It will be okay.
{right?}
by Band Back Together | Dec 4, 2010 | Asperger's Syndrome, Autism, Childhood Bullying, Coping With Bullying, Fibromyalgia, How To Heal From Being Bullied, Parenting, Rheumatoid Arthritis |
A couple of weeks ago, we finally got an official diagnosis for Alana, one of my twins. The doctor confirmed our suspicions. She definitely has Asperger Syndrome. According to the doctor, there are changes in the works in the medical community to eliminate the separation between Asperger’s Syndrome and Autism by referring to them all as Autism Spectrum Disorders. That’s just a dressed-up way of saying our family has yet another mountain to climb.
I guess the formal diagnosis shouldn’t really change much in our lives. We’ve suspected for several months and we’ve already taken steps to try to help her. We’ve eliminated red dye from her diet, learned to remove her from situations at the first sign of sensory overload, and tried different coping methods to work through the inevitable meltdowns.
But somehow, having the words written that will forever label her…well, it does change things.
Last night, I went through my nightly routine of teeth-brushing and face-washing, and then I checked on the kids. They are five and two, and I still can’t go to sleep without checking on them, making sure they’re breathing, and saying a little prayer over each of them.
I got to Alana’s bed last. I sat there on the edge to watch her sleep for a minute and give her a kiss. As I looked at her, the reality of her diagnosis hit me.
Sure, we expected it. And just like I do with my health issues (RA and Fibro), I’m constantly doing research, trying to find tips and tricks for handling this. I’ve thrown myself completely into figuring out what’s going on in her brilliant mind and helping her through her struggles. But I don’t think I’ve let my heart in on the process. And last night it learned what was happening and screamed in protest.
“THIS IS NOT THE WAY IT’S SUPPOSED TO BE FOR HER!”
She’s not supposed to have to struggle to make friends. She’s not supposed to get so anxious over a picture she’s drawing that she starts crying because she messed up and thinks other people won’t like it. She’s not supposed to have a compulsion that makes her chew the skin on her fingers until they bleed. This should NOT be happening to my child!
There are so many things that are much worse than ASD. I know that and I thank God every day for the health of all my children. But I think every parent can understand that I had a vision of how things are supposed to turn out for my kids. They’re all going to grow up and have plenty of friends, go to college, have a great career, get married to their soul mates, have beautiful healthy babies, etc. And while I know that they will ultimately forge their own destinies, I guess the common thread in what is supposed to happen is an absence of pain.
Pain is part of life.
There’s no question about that. As much as we want to protect our children from it, it’s going to happen. Our job is to be there and help them through it. And while I watched her sleep, I realized that she’s likely to be dealt much more than her fair share of pain. There seems to be new stories every day about children with autism being abused or bullied. The last few months that Alana was in daycare proved that it starts early. The four-year olds didn’t understand her anxiety and meltdowns so they would pick on her about it. It brought me to tears.
As much as I worry about her in social situations as she grows up, I am constantly amazed at the gift that Asperger Syndrome has given her. We always knew she was very smart. As I home-school her, though, I’m seeing evidence every day of just how different Alana is by comparison.
For instance, a few weeks ago, she got her Hooked on Phonics Kindergarten Level 1 book and started reading it to me. She sat for an hour and a half straight going through the last seven lessons in the book. No DVDs, just her. I feel like I’m not even needed now when we work on reading. We’ve completed one-quarter of Kindergarten and she’s reading every one syllable word she comes across.
Beyond scholastics, she understands things on a deeper level than even I do sometimes. Since our last appointment with her doctor, she and I have talked a little bit about what makes her “different” than most other kids. I told her that the symbol for Autism is a puzzle piece because we still don’t know much about it and we’re trying to fit the pieces together.
A few days later, she brought me a piece of paper with a few colored pieces glued on randomly. She said, “Mommy, this is your puzzle. Every day when we figure out something else about me you can glue on another piece until we have it all put together.” Just one of the many things that surprise me coming from a five-year old.
I admit, I had a rather weak moment last night, sitting there on Alana’s bed.
I try hard to be positive and look for the bright points. But sometimes the worry, the pain, the fear all break through and dark clouds roll in. Then, Alexis giggles while she wrinkles her cute little nose, or Avery tells a 2-year old version of a knock-knock joke, or Alana says something really profound.
Then the light comes back, reminding me of just how blessed I am and how much I have to be thankful for.
by Band Back Together | Nov 26, 2010 | Anger, Anxiety, Baby Loss, Compassion, Coping With Baby Loss, Faith, Family, Feelings, Forgiveness, Grief, Help For Grief And Grieving, Hope, How To Help A Friend With Infertility, Infertility, Livng Through A Miscarriage, Loss, Medical Mystery Tour, Miscarriage, Pain And Pain Disorders, Rheumatoid Arthritis |
*I know that not everyone out there is a Christian and I hope that nobody will take offense to this post. My faith is a very personal thing, but it helps me get through so much. My prayer is that everyone dealing with a life crisis will find something that will bring them peace and hope, whether it’s faith in God, faith in humanity, or faith in herself.
When I wrote about my miscarriages and TTC journey, it was the hardest piece I’d ever written. What I left out, though, was the behind the scenes issues. The emotions that I’m still ashamed of feeling. That probably sounds stupid. I mean, you can’t help how you feel about things so why feel shame? Well, it’s been six years and I still do, so I guess I can’t answer that.
When Jordan and I decided to start trying to get pregnant, we didn’t broadcast it, but we also didn’t hide it when people asked. And people did ask. We’d been married over a year at that point, and apparently that’s the time that everyone from your grandma to the cashier at the grocery store deems you ready to have a child. But when we realized we would need a little help expanding our family, we clamped our mouths shut. Our families and closest friends were the only people who knew what we were going through. But when we got that first positive test, we told everyone! I’ve never been the best at keeping my feelings under wraps and we were thrilled.
A few days before I got that positive test, my sister-in-law gave me the news that her sister-in-law was pregnant. I was pretty discouraged at that time thinking that the round of Clomid I had just finished had not worked. But here was this girl (who I love dearly, BTW) who had become pregnant accidentally. It hardly seemed fair.
But then I found out that the Clomid had actually done its job and all was right with the world again. I could be happy for my sister-in-law sister-in-law-in-law sister-in friend, if a little worried for her. After all, my faith had always dictated that “everything happens for a reason.” But then it all changed.
During the few days that encompassed the fateful ultrasound experience and gut-wrenching D&C, I lost more than my baby. I lost my faith.
I left the hospital a bitter, heartbroken person that I no longer recognized. I was angry at the world. I was angry at God. I didn’t go to church. I didn’t pray. I didn’t even sing; something that has always been my solace. For three months I was in this dark pit. Every time someone who didn’t know would ask about the pregnancy and we had to break the news again, I sank further.
At that time, I worked for an agency that provided low-income housing. It seemed like every other day I encountered another woman who was expecting yet another child that she couldn’t afford. All these women around me were getting pregnant so easily, some while actively trying to prevent it, and having the healthy babies that I wanted so badly. I couldn’t understand why I was being treated so unfairly. I couldn’t bring myself to go to the baby shower for my brother-in-law’s sister. Every time I saw a pregnant woman I would cry.
It kills me to finally admit those things. There are very few people in this world that I’ve told about that dark time. I still feel guilty for being so angry. But if my first miscarriage caused me to lose my faith, my second one brought me back.
My second miscarriage happened on a Saturday morning. I was in the ER for a few hours then sent home. The next day at our church was Youth Sunday. I hadn’t been to church in three months at that point, but Jordan’s best friend, David, was delivering the message that day, so I insisted on being there. Not many people at church had known I was pregnant that time, so we didn’t really have to talk about the loss.
Something happened that Sunday morning, though. The youth members all did a great job with their testimonies, prayers, and music. David delivered a beautiful message. And then the youth sang a song to tie it all together – Here I Am Lord. I had heard the song a hundred times before. I had sung it about half that many times. But that day, I actually listened to it. It suddenly spoke to my heart in a way I had never felt before. Thank God we were sitting in the balcony so the whole congregation didn’t see me burst into tears.
I suddenly was at peace. After being angry for so long, it was an incredible feeling to let go of it. In that moment I knew that, like Abraham and Sarah, we would eventually have a child. And that there was a reason for my losses. I knew that it was going to fall to me at some point to support others going through it.
I was able to do just that several months later when my best friend had her first miscarriage. I’ve reached out to others as well – old high school friends on Facebook, a friend at church, etc. It’s what I hope to accomplish by contributing to this site. It also sort of paved the way for me to do the same thing as soon as I was diagnosed with Rheumatoid Arthritis in 2008. Since then I’ve found myself in something of an online support network of people living with chronic illness. Without that moment of clarity, I’m convinced I would still be that bitter person. I’m sure that the RA diagnosis would have been much worse than it was, emotionally speaking. I honestly don’t know how I would have made it through either of my full-term pregnancies, much less through a certainty of life-long pain, had I not had that renewal of faith.
I didn’t tell anyone about what happened to me that day until a few months ago when Jordan and I had the privilege to see David ordained. I figured that was probably the right time to tell him about the impact he had on me that Sunday so long ago. Today, my relationship with God is the most important thing to me. Through Him, I can do anything. There are days when I just need a nudge and there are days when I’m forced to ask Him to carry me. And I’ve come to realize that everything truly does happen for a reason, even if that reason isn’t revealed during this earthly life. But the choices we make when facing hardship will usually go a long way to reaching that revelation.
“But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.” ~ Isaiah 40:31
by Band Back Together | Oct 9, 2010 | Chiari Malformation, Chronic Illness, How To Help A Friend With Chronic Illness, Invisible Illness, Pain And Pain Disorders, Trauma |
If you saw me walking down the street, you wouldn’t see the 8 inch scar up the back of my neck and head. You wouldn’t know that through that 8 inch scar I had bones removed, I had parts of my brain touched and adjusted. That I had a piece of a cow heart sewn into the lining of my brain.
If you saw me walking down the street, you wouldn’t know that the area around that 8 inch scar is in constant pain. You wouldn’t know that behind the smile is someone who wants to cry all the time. Who wants to lie in bed and wallow in pity for the pain that they’re carrying. You wouldn’t realize that when I tip my head side to side that I’m desperately looking for any movement, and little change that will reduce the pain I have. That even though I haven’t said anything to you, I am suffering badly.
If you saw me walking down the street, you wouldn’t realize that my left hand doesn’t work well. You wouldn’t notice that when I carry a bag of groceries in my left hand that my pinky finger never even gets looped in the bag handle. Or that even though my ring finger might be looped, you could pull it out with the greatest of ease. It’s a dummy finger. It’s there for appearances, and that’s it.
If you saw me walking down the street, you wouldn’t know that I have very little strength in my arms or my legs because last year I had to spend more than 2 weeks laying completely flat on a couch because spinal fluid kept pouring out into my back. And that just 2 weeks of strict bedrest can result in a strength deficit that can take a year to regain under the best of conditions. You wouldn’t realize that if I was given a 15 pound dumbbell that I would only be able to do one bicep curl before having to quit. You wouldn’t realize that I am weaker than your 6 year old child.
If you saw me walking down the street, you wouldn’t know that my balance is very poor. You wouldn’t know that neon lights confuse my vision so much that I nearly fall over. You wouldn’t know that I can’t touch my finger to my nose when sober about half the time. You wouldn’t know that laying down at night makes me feel like my feet are going to flip over my head.
If you saw me walking down the street, you’d never know. My battles are quiet, my scars are hidden. But they are real. Just because you can’t see them doesn’t mean they don’t hurt, that I don’t struggle every single day. Just because I’m up and about doesn’t mean I’m not in pain, doesn’t mean that I’m faking my symptoms or exaggerating them. Just because I go on vacations and make it to my morning class most of the time doesn’t mean I am healthy or capable of doing everything you can.
If you saw me walking down the street you’d never know that I have permanent disabilities. That I have to fight to get the help I need because I look fine. You’d never know how much it adds to the hurt and frustration when people say that I look fine, or say that it can’t hurt that bad because I’m up doing x, y and z.
If you saw me walking down the street, you’d still have never walked a block in my shoes. You’d never have walked a block in my pain, in my dizziness, in my weakness, in my fears. You’d have just seen a girl who looks like you. A girl who wishes that her insides matched her outsides. A girl who would give the world to be what you think she is.
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 | Oct 7, 2010 | Abuse, Animal Abuse, Fear, Grandparent Loss, Pain And Pain Disorders, Psoriasis |
Let’s take a look at some things that are total bullshit right now.
Psoriasis is bullshit. The itching, the peeling skin, the pain. People staring at me. People making nasty comments about me, asking to be moved to a different table so they don’t have to sit near me, avoiding any chance of touching me. All bullshit.
Medications to treat psoriasis are bullshit. All the damage it can cause, the extra blood tests needed, the worsening of the itching (and to think, I thought it wasn’t possible to itch MORE), the dryness, my lips chapping and bleeding even though I’m practically attached to the chapstick tube. All bullshit.
My best friend’s Grandma died yesterday, and the best I can do is help her by editing a couple of letters she needs to send, and being there online. Because she lives several states away, and I can’t just go hug her and tell her that she can relax and cry, and that I’ll take care of the huge list of things she has to do. That she doesn’t have to hold it together alone. Bullshit.
That people I don’t even know online have lost people so very special to them, and there’s not a damned thing I can do to help. I read their words, and I can relate to how they feel, but I can’t find the words to help. Instead I’m sobbing my heart out for people I’ve never met, and wishing that somehow, I could make it just a little better. All bullshit.
I’m afraid to walk from my car into the store because my purse might get stolen again. I should not have to live in fear. Fuck you, asshole, for stealing my purse, and part of my confidence. It was really fucking hard to get that confidence, and it will be even harder to get back there again. Total bullshit.
The Mate is in constant pain, and no matter how much I want to, there is no way for me to make it better. He’s on so many heavy-duty drugs, and still, he hurts all the time. Medical science can find a way to build robotic arms and legs, and no way to help him with the pain in his spine? Bullshit.
Animal abuse. I don’t even need to go into how many animals are out there suffering, and I can’t fix it. I do what I can, I have more animals than I can easily take care of, I transport, and still, there are so many more out there suffering. It’s all bullshit.
Parents that are assholes, abusive, nasty, whatever. I had them, and I hate that anybody else might have to go through something similar to what I’ve gone through. I HATE IT I HATE IT I HATE IT. I just want to gather everybody up in my arms and some how make it better. And I can’t. And that’s bullshit.
There is so much more bullshit I’d like to cover, but I’m having trouble typing through my tears, so I’m going to go hug my dog, find some tissues, and try to figure out at least one bullshit thing that I might be able to fix.
