by Band Back Together | Dec 7, 2010 | Child Loss, Coping With Losing A Child, Grief, Help For Grief And Grieving, Loss, Sadness, Stress, Sudden Unexplained Death in Childhood, Trauma |
Holidays have not been easy for me for a long time due to family issues between my wife and my parents. That was unpleasant but tolerable. Details of that are completely different story.
Bringing our first and only child into the world helped. I could now find joy in watching him open his gifts on Christmas morning, seeing the same joy in his eyes that I felt as a kid during the holiday season.
We had the same ritual for 4 years – stress over the holidays, money, buying gifts and so on. But it was all worth it to watch Kaden open his gifts and enjoy Christmas.
This year the holidays have gone back to “full suck mode.” You see, our beloved only child of almost 5 years old passed away in January 2010 of unknown causes. Doctors are unable to explain exactly why the life of our child was taken from us so suddenly.
I never thought anything could change your life more than bringing a child into the world. I now know that losing that child changes your life even more. Life continues on around you but somehow you are unable to keep up. The same problems, and struggles you had before are now magnified by the constant pain, sorrow and discomfort in your heart.
Going through our first holiday season without Kaden is really taking its toll on us as well as our entire family. Some people understand why we don’t want to leave the house to visit friends and family and gather for holidays just like we used to, but it seems that some are just flat out offended and hurt that you decide you are not emotionally capable of attending family holiday celebrations.
I hope that some day the pain will weaken enough to allow a somewhat normal lifestyle but for now, we are broken.
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 | Anger, Anxiety, Baby Loss, Coping With Baby Loss, Grief, Guilt, Help For Grief And Grieving, How To Cope With Post-Traumatic Stress Disorder, Livng Through A Miscarriage, Loss, Love, Miscarriage, Post-Traumatic Stress Disorder, Sadness |
I have never spoken to anyone about this but my husband, my mother, and, of course, my doctors. This may be one of the hardest things I will ever write. It may not all make sense. I don’t remember it all. But yet I remember it like it was yesterday. I will never forget it. This is my PTSD talking. I am in a very bad place right now. And I know what happened to me isn’t as bad as some but to me it’s worse because she was mine.
Anyway, Oh God here goes…
You were due December 25th. I was so excited that both of your sisters were Christmas babies. I love Christmas. And I still do. Your due date was so amazing I couldn’t believe it – three children born on or around Christmas.
The beginning of my pregnancy didn’t seem out of the ordinary. Normal morning all day sickness for me. Around 6 weeks something felt off I called my Doctor who is AMAZING, and she got me right in for an ultrasound. There you were – perfect. And fine. Little heart beating to beat the band with a due date of Dec. 25th. I felt better. Things resumed. We got to our 12th week and we told everyone and even started buying things. Come on – you were my fourth baby. What could go wrong? How could I even think that?? Everything was fine .
Then it happened. July 27th I felt yucky and my back hurt SO bad. I should have called the doctor. You might be here today. I should have known. But I just thought I worked hard that day. It was hotter than hell. And it was just a back ache. I never ever had back labor. At 2:12 on July 28th, I woke up and thought, “shit, I wet the bed.” I hit my husband and said, “I wet the bed. Go get new sheets.” And then I went to turn the lights on. And it felt really off. It was sticky. I turned the light on and there was blood everywhere. I heard a sound like I had never heard before – it was my screams. I told my husband call the doctor and tell her we’re going to the hospital. Something was very very wrong.
My mom came running in and tried to calm me, but it didn’t help. I remember telling her keep the kids out. I didn’t want them to see the blood. And my back – OMG the pain. All the sudden I felt a pop between my legs and there was a “doll” between my legs – it didn’t seem real. I thought WTF is that about my own baby. I saw your little chest heaving up and down. You were breathing!!!!!!!
I screamed for my husband to stop calling the doctor. We had to leave NOW. She’s here. She’s ALIVE. She’s breathing.
You were 18 weeks and 5 days. You were perfect – tiny and waxy, but perfect. You breathed for 5 minutes. I held you in my hand as you took you first and last breaths. I will never forget them. I loved you so much in those 5 minutes. You were my daughter, Ariel Grace.
But the horror didn’t come until we got to the hospital. You WEREN’T a baby. You were nothing. You were – I choke on the words now. You were a miscarriage. But I saw you and I held you. You WERE breathing for 5 minutes. I have a cell video of it. But you were going to be discarded as if it was a miscarriage. I flipped out like my husband has never seen me flip out. I screamed and I wailed. I hit a doctor, I think. Not my doctor. She was AMAZING. She held me while I rocked the baby. She stroked my hair. She couldn’t change the policy.
You would never exist to the world. You would get no birth certificate and no death certificate. But to me and your father, siblings and grandparents you were EVERYTHING!
I made my uncle call his friend at a funeral home. He kind of laughed – not in a mean way but he told my uncle, “She’s not even as big as a cat. I can’t charge. I won’t. It’s a freebie.” I have her ashes. Although that was a HELL of a fight. But I think they knew I was a mad woman and I would not leave that hospital without MY baby.
I have her ashes hidden in my room. I left the hospital the next day with nothing. No baby, no belly, no nothing. I was empty and blank and a Zombie for a LONG time. Hell, I still am. I never mentioned it to anyone. Some people asked questions. I think I probably stared at them blankly. But I never answered. My husband or mother would later. I couldn’t talk about it. It’s over a year later and the pain is still unreal. I have nightmares of waking up to the blood every five minutes. I don’t know that they will ever go away. But what is the worst for me is I can’t talk about her to anyone but my husband, mother and therapists.
Am I forgetting her, am I not remembering her, am I cold? I just it hurts so bad. And no one that I personally know can understand that pain. No one I know in real life understands my anger and bitterness of her not being a baby because she was 18 weeks and 5 days and not a viable birth. Isn’t breathing for 5 minutes viable? Had we been at the hospital could we have made it farther my AMAZING doctor thinks that those 5 minutes were pretty darn special. And so do I for a baby with such under developed lungs.
Obviously now everyone knows she was never born and just went away. People have stopped asking questions. And I just can’t talk about it. I feel cold. And I miss her even more now. I don’t know that it will get better. She wasn’t a “real” living baby. But she was mine. I held her. I named her. I talked to her. And on her birthday I buy her a gift. I guess that really does make me crazy. Maybe I’ll stop someday. I don’t know. But I guess tonight on one of my darkest of nights, this needed to come out. Thank you for listening. No one else knows. And it hurt to talk about. A LOT so this was BRAVE. So thank you for reading.
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 | Dec 3, 2010 | Abuse, Adult Survivors of Childhood Sexual Abuse, Child Abuse, Coping With Anxiety Disorders, Coping With Depression, Generalized Anxiety Disorder Resources, Major Depressive Disorder |
wall. hit it. check that off my list for today.
trying to get them to school on time–wrong
trying to get them to eat–wrong
trying to get them dressed–wrong
trying to get them clean–wrong
zipping the jacket–wrong
having them not show up to school late–wrong
waking them up–wrong
waking up–wrong
words–wrong
My silence in my home is the only acceptable form of me to the three who need me.
The hardest thing about being a depressed mother? The odor. No matter how much relentless, caffeine-induced energy, forced enthusiasm, skilled application to educational crafts, or books read on development. No matter what care taken with my fragile mental health…taking my pills like a good girl every night so I wake up in the morning to do it all again. No matter how clean the kitchen sink, how nutritious the meal, customized the birthday presents, thoughtful the note in the lunch box. No matter how carefully I avoid repeating patterns of abuse and violence –no matter. I stink. It is as if my depression leaves a permanent, distasteful and toxic odor coming from my very being. No matter how much I dress it up, clean it off, put make-up on it, expose it to fresh air and aromatic therapies. I toss chemicals into it, paint it pretty colors, or force it into room-mommy scenarios.
It still stinks.
The fumes of depression seep out of every pore with the stench of decaying life and flammable, noxious fluids that lead to forensic evidence in my face–that my own mother chose my father over me and my father chose me over my mother. My children–they are bomb-sniffing dogs.They smell the little girl I was–discarded and thrown into the trash with the giant Gallo wine jugs. They smell the lack of basic import I have ever had on the mother, father, brother, and sister family of origin I fell into. They smell the dangerous mix of rage and intelligence that may combust at any moment. They smell despair and destruction. My kids smell my depression.
I stay vertical as to not hurt them more than I already have by exposing them to a life long…long life…with a chronically depressed mother. It goes like that…it is like that. New strategies on disinfectant, deodorant, dialogues on anti-depressants. Days like this are the scratch and sniff of it. These days scrape hard on my soul. And I reek of it.
They are out there…my kids are out there right now waiting for me to pick them up after school, as I do every afternoon in a dutiful attempt to assure them that my love is greater than the force of gravity on my heart. I am already dreading the predictable, palpable disappointment they will have when they get in the minivan and the smell of my mood reminds them I am not EVER going to be the bounce-house of distraction-filled fun that is their father.
They will never know he broke me too. Asshole. And I stayed for them, sleeping with one eye open and one foot out the door ever since. Seven years of a thirteen year marriage straddling suspicion and motherhood.
Against every fiber of my being to drive it off a cliff and enjoy the fall–I am getting in the fucking minivan, I drive on the right side…stop at all the red lights, avoid oncoming traffic whenever I can.
Joy gone. Independence gone. Creativity gone. Respect gone. The possibility of being touched by a man and feeling safe–he and my dad put the nails in that coffin, too. Yuck.
it is this always
i am barely, rarely, fairly ”good enough,” silent, and vertical.
and i smell like a martyr.
