by Band Back Together | Oct 22, 2015 | Asperger's Syndrome, Autism, Grief, Help For Grief And Grieving, How To Help A Parent With a Special Needs Child, Parenting, Special Needs Parenting, Speech Disorders |
I am the mother of identical twin sons. They turned two in November.
At 12 months, they seemed to be moving right along in their development. They were walking, starting to say words; everything seemed fine. I was a little worried they were late in talking, but they were talking, so that was something. By 15 months, they still had very few words but they were both doing some signs and also had a full repertoire of “action” songs in their arsenal. By 18 months, there were no words. None. No signs. No action songs.
Everything was easily explained away as a boy-thing, or a twin-thing, or an identical-twin thing.
We tried not to worry.
Friday, they had their first visit with Early Intervention. I wanted to get their speech back on track as soon as possible. Language delays were our number one concern. Of course, in the back of our mind, we’d thought about autism, but we weren’t going there unless we had to. It’s too difficult.
After thirty minutes of watching the boys “play,” and watching their interactions with me, the Early Childhood Development teacher and the Speech Pathologist, there was an early diagnosis of sorts. They weren’t as concerned with the language as they were all of the other things: they didn’t really play with their toys, they didn’t really interact with, well, anyone in the room.
Early Intervention wanted to proceed with autism evaluations.
The next thirty minutes involved me, sitting on a chair nursing my four-month old. Trying to not to break into an ugly cry, trying to keep it together and sound somewhat intelligent until I could get all of these people who just brought my whole world crashing down, out my door.
My sons are perfect.
And I don’t know how to fix them.
by Band Back Together | Oct 16, 2015 | Baby Loss, Coping With Baby Loss, Loss, Pregnancy After A Loss (Rainbow Baby), Stillbirth |
I was 35 weeks pregnant when I found out our daughter no longer had a heartbeat. I gave birth to her sleeping 5 days later.
All my husband and I wanted was to be parents. It took a few years to conceive Leia, but once we did it was bliss. There was a lot of heartburn, and morning sickness but I didn’t care. I loved being pregnant. Loved feeling her move inside of me, and kicking.
We threw ourselves into preparing for her arrival, and had her room all ready. My nice pink new suitcase all packed, the new diaper bag all ready to go, the car seat safely installed in the car.
What we couldn’t do was prepare ourselves for her not coming home. For her dying.
Losing Leia was the hardest thing I’ve ever had to go through. I had been writing letters to her for 6 months in utero. I had no idea how I could stop writing to my baby girl, so I never did.
It’s been almost 7 months since we said hello and goodbye to our daughter. I am currently expecting our rainbow baby but we will never get over losing Leia.
by Band Back Together | Oct 15, 2015 | Abuse, Adult Bullying, Adult Children of Narcissistic Parents, Bullying, Divorce, Emotional Abuse, Parent Loss |
A narcissistic parent can ruin a child’s life for years and years.
This is his story:
Where do I begin?
My mother didn’t just run the first 26 years of my life – she ruined them.
When I was five, I had a dog who mysteriously disappeared. The dog chased a would-be vandal over a fence. While the dog never touched the kid, the kid fell and hurt his shoulder. His parents threatened to sue. While my brothers and I were at school, while Dad was at work, Mom “settled out of court.”
She had a perfectly healthy dog, MY DOG, euthanized.
I was told he ran away while my brothers were told he was given to a chicken farmer. Dad was told the truth. I was told something different because I’d have asked to go to the chicken farm to see my dog.
Twenty years later, I was told the chicken farm story, twenty-five years later, I was FINALLY told the truth. Dad confessed because he was tired of lying for Mom.
What Dad didn’t know is that I paced the streets looking for my dog. I sat on my porch, just waiting for him to come home. I was just like that movie Hachi: A Dog’s Tale. A letter carrier came upon me on the porch, crying and was at a loss for words.
Life went on for Mom. She chatted on the phone, watched her soaps, did laundry, and ignored my pleas for my dog to “come home.” That dog was my friend.
The Golden Child, The Golden Boy, my abusive, bullying older brother would not allow anyone to be more successful at anything he’d failed at first. The Golden Boy was allowed to try out for Little League, but he didn’t like it. Therefore I was never allowed to try out for Little League. She wouldn’t let me try out for anything – even when Dad pushed for me to join the swim team.
As a teen, I was very shy, awkward around girls. There were a couple reasons: Mom insisted I buy her ugly car, Mom insisted I remain in Boy Scouts – and so it was. Lastly, The Golden Boy would go through my yearbook, find the girls I had crushes on, and ask them out first.
When I was fifteen, I took a date to my homecoming dance. She was my mother’s boss’s daughter who really wanted to go to that dance… just not with me. Her only way in was with a date. I got her in, she flirted with every guy there, and tells me, “Maybe I’ll look you up in a year or two.”
It was completely embarrassing.
Mom thought it was hysterical.
Four years later, I’m home for the summer from college. The Golden Boy commits road rage, and I save his sorry butt from a guy twice our combined sizes. How does he thank me? He starts dating the girl I’d brought to homecoming and bragging about it.
Mom finds it outrageously hilarious funny.
Once again, I was terribly hurt.
Mom informed The Golden Boy that my brother’s girlfriend wasn’t allowed in the house. She also tells me that people can change for the better. She told me about my uncle, her brother, who’d come home from the Navy only learn that his fiancee had married someone else. My uncle was devastated, married his first wife, had two kids, and ended up divorced. As his first fiancee did.
Mom told me they reconnected after he bailed her out of jail for prostitution. For 29 years, I believed this story. And I had failed romance after failed romance.
In college, The Golden One wanted me as a his roommate. Mom thought this was a great idea until I reminded her that I wouldn’t live under the same roof with him. Then he decided we needed to be in the same classes. I sat away from him, listening to comments about his abrasiveness from other students.
The only rebellious thing I ever did was to date my first wife. I knew the relationship wouldn’t work, but my self-esteem was shot, and I chose someone who was not his type – even though it meant I had to sacrifice my own happiness. My first wife and I were married and divorced in less than eight months.
At 26, I met my wife. When she and I got engaged, The Golden Boy had barely known his then-girlfriend, but decided that not only would he marry this woman, but that he should beat me to the alter. When it came to introduce our families, my fiancee and I settled on one weekend and made our plans. The Golden Boy then usurps my weekend so that his future in-laws are met first.
I told my wife we’d be on the back-burner. And we were.
Every time my wife and I would visit, the Golden Boy was there. See, he was was usually unemployed and wanted to use us to get a job. My mother played along until I put my foot down.
I have made up for my lost childhood. I will always have the kind of dog I want. I coached Little League and later high school baseball. When the high school team I coached won a game on a play I called, I remembered looking at my high school ring and saying, “Now I can wear this with pride.”
I went back to college, got my masters degree. I’ve had the same wonderful job for as many years as The Golden Boy has been fired from. It’s likely he’s been fired by more.
My mother died a few years ago, just after my daughter graduated. Dad was proudly telling me all about what my daughter accomplished when I interjected. I pointed out that I was denied those opportunities. I mentioned why and told Dad all about my uncle and aunt’s relationship.
Dad cut me off, “that isn’t true. Your mother made that up.” For 29 years I bought that story. I told my wife, “If she lied to me about this, what else did she lie about?”
My wife said it best, “You’re probably going to find out there were more lies.” I have – most were done to cater to The Golden Boy.
When I was visiting for Father’s Day, The Golden Boy tried to start something. I was on my parents phone – no one had cell phones back then – and he wanted to use the phone too. I told him I’d be off in five minutes, but he got nasty – he said he’d use the phone whenever he wanted to. My mother was on his side. I hit the roof. Mom started crying, and talking about taking everyone on a cruise for their fiftieth wedding anniversary.
They renewed their vows the day after their actual anniversary – my anniversary – to cater to The Golden Child. At dinner, my wife and I presented my parents with a special gift, a three-night stay at a bed and breakfast. Afterward, Mom called me to tell me that they’d had a blast. Years later, I find out that she’d given away the reservation to a family friend. No one, of course, is allowed to be better than The Golden Boy. And since he was broke and didn’t buy them a gift? She wanted nothing from me.
Later, I asked Dad about it – Dad knew nothing of it, which makes sense: Dad knew what Mom wanted him to know.
When Mom died, a spiteful Golden Boy showed his true colors. He and Dad never got along. He tried to have Dad institutionalized. It didn’t work. The Golden Boy was removed from the hospital by security.
The Golden Boy fought with Dad after Dad informed the hospital staff to not release his protected health information to my brother. What does this Golden Child do for revenge?
He makes a false report to DCF, claiming Dad is broke, beat his wife, has dementia, and is living off cat food.
DCF investigated while Dad was home grieving. A follow-up investigation took place the day Mom died. I was less-than-friendly to DCF. I told them if they had any questions about Dad’d mental capacity, to bring them to me. She couldn’t tell me who’d ordered the investigation, to which I replied, “I can take three guesses, and the first two don’t count.”
I made Dad change the locks on the house, and I became his power of attorney. I made sure Dad didn’t disinherit The Golden Child because there are grandchildren involved. He’s not getting a key to the house, though.
Now The Golden Boy has a job, which I always fill the words “for now,” since he always gets fired. Dad is trying to tell me how much better his personality is since getting this job. A person’s employment status does not change someone’s personality. Becoming a parent, yes.
Speaking of children, my mother GAVE BACK many pictures I gave her and Dad of my daughter under the guise of “There isn’t enough room.” There are ROOMS OF PICTURES of just his child, one of SEVEN GRANDCHILDREN! Dad won’t do anything there because he wants to keep the house as Mom left it.
The golden boy learned how to lie from my mother. He told a lie about my uncle that caused me to never be allowed to see that uncle the last 8 years of his life. This was another of Mom’s brothers, and he used to take us to a rifle range. The golden boy convinced Mom I was irresponsible and couldn’t be trusted at a range. Mom never let me see that uncle the last 8 years of his life before he was tragically killed.
This uncle left a rifle to the golden boy and my parents. When I asked why it was such a big deal with taking me to a range, my mother said, “Why do you take stock in what your brother says?” I responded, “I didn’t. You did.” Mom then said they were afraid I was holding a grudge against someone and was planning something rash.
I have poured a lot out here regarding the lies I was told. Now the golden boy is trying to charm his way back into Dad’s good graces. I’ve told Dad this has nothing to do with past grudges, or should I say all of his bullying. It has to do with the fact the golden boy broke any and all trust with me when my mother died. There is nothing he can do to ever earn my trust because he will never have my trust again.
The sad part is my father forgets his own sister was the golden child with my grandmother, and she and her husband stole from my grandmother, which set Dad off. I told Dad, “I trust my brother the same way you trusted your sister.” That woke Dad up. I even asked Dad what he plans to do when this golden boy asks for a key to his house. Dad has assured me that won’t happen, but to be on the safe side if I have to deal with my father’s estate, the first thing I will do is get the locks on that house changed again.
I feel better for sharing this, and I welcome your responses.
Sincerely,
Cleansed
by Band Back Together | Oct 8, 2015 | Anniversary Reactions, Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Family, Feelings, Grief, Help For Grief And Grieving, Loss, Loved and Lost, Stress, Trauma |
First, people are afraid of what to say, and often say nothing. This is a mistake. Many people are afraid to bring up the deceased child, fearing it will open wounds and raw feelings. But in my opinion the hardest thing is when people don’t talk about Maddie. It feels like she was never here, and this is what is heartbreaking. It is nice when people say, “I thought of Maddie today,” of “I saw a kid in a dress like the one Maddie wore at whatever today.” Or “I miss Maddie.” These things help, not hurt. Make us feel she is not forgotten. Sending a keepsake with the child’s photo or name, things that help her be tangibly remembered are nice. We have received AMAZING things and we cherish everything.
Six years ago, one of my friends lost her father. I was living across the country from her, and I was terrified. I felt guilty that I had my dad and she didn’t. So I didn’t say anything, and I ruined our friendship for a while. I am very lucky she gave me another chance. She has been there for me since Maddie passed away. I have horrible regret about the whole thing – all I had to do was call her and say, “I’m so sorry.”
Religion is a potentially explosive way to comfort. Unless you absolutely know 100% percent the person will be comforted by mentions of faith, don’t go there. Religion is a very complicated thing in the wake of a child’s death, and they may be angry at God or confused as to how to incorporate the death of a child into the religion that they have known to have their best interests in mind. Even someone you know to be intensely religious may be having a crisis of faith in the wake of a child’s death, and could be angered/saddened by mention of religion. Especially stay away from, “God wanted her more than you,” or “God needed her more,” etc.
I don’t care if it is the all powerful creator of the universe, you don’t tell any Mama that anyone wants her baby more than she does.
So many people hate seeing their loved one in such pain and want to fix it. Consequentially, they start talking about how you have to move on, that you will see them again, the child is with God, it will get better in time, etc. All things they think will “fix it.” Don’t try to do this. Follow the lead of the parents. Discuss what they want…if they go to those places you can discuss those things, but don’t try to steer it there. Sometimes I want to talk about Maddie and the unfairness of it all, and other times I want to hear funny stories or talk about reality TV.
Don’t be afraid to show emotion. Many people feel they have to be strong for their friends, that they can’t cry or show emotion. I don’t think that is true. You can be strong AND be emotional. If tears come, don’t fight them. This shows your friends that you, too, are crushed and sad and lost.
Address the horror. People often worry about addressing how awful the situation is, but the parents want to hear that people get the hell they are in. The parents feel alone when they don’t think people understand how awful this is. Saying things like, “This is the worst thing. I am so sorry and sad that it had to happen to you and your child,” helps.
Food is very helpful. The last thing you want to do when mourning is worry about eating. There are always people around after a death, and the last thing you want to think about is feeding them. Mike and I never would have eaten if food hadn’t been sent to us. A gift of food also tells the parents they are loved.
Say or express something you never have before. If you have never told the person that you love them, come right out and tell them that you love them. If you’ve never held their hand, hold their hand. Give hugs. These expressions mean a lot.
Finally, my biggest advice is to not be afraid to take initiative. We often say, “let me know what I can do,” in a situation like this. Well, I can tell you that Mike and I had no idea what we needed. We were so lucky that we had friends and family rally together and just take care of things. A few came to town to help out. One friend organized food, another cleaned my house, two bought the clothes Mike and I wore to the funeral, one put together Maddie’s slide show, a few organized the reception after her service. I could go on and on. I didn’t have to worry about anything because I knew my friends and family would handle it.
Be there for your friends. Call, email, text. Tell them they don’t have to respond. Let them know you are thinking of them, and their child, all the time. Don’t drop away after the funeral – that’s when they’ll need you the most. Be the kind of friend that you would want to have.
by Band Back Together | Oct 5, 2015 | Baby Loss, Cesarean Section, Coping With Baby Loss, Pregnancy, Spotlight On Baby Loss, Trisomy 18 |
The creation of human life is one of the most complex and shockingly beautiful things that our bodies are designed to do. The microanatomy that goes into this task is so astonishingly complicated that it’s a miracle any of us walk around at all.
And yet, most of us do. Most…but not all.
When a baby dies, we are fragmented. Shattered, we must pick up the pieces and put them back together as we pay tribute to our children, our tables forever missing one, our families incomplete, our treasures in heaven, our babies alive only in our hearts. It is through our stories that they live forever. These children were here and they mattered.
They were loved.
They are loved.
If you’d like to add your baby’s name to our Wall of Remembrance, please fill this out so we can properly remember your lost little one.
It all started out so happy and joyful, knowing I was pregnant again – my third child. No words could express my joy.
Five months into my pregnancy, I had an abnormal blood test. The doctor immediately sent me to see the gynaecologist. That is when all my happiness turned into a shattered dream.
The gynaecologist advised an amniocentesis. My husband and I agreed to take the test right away, but we had to wait two weeks for the results. It was agony. I couldn’t sleep at night. I don’t think anyone can worry more than a mother waiting to find out about her unborn child’s health condition.
When the test resuts came in, it was positive.
My unborn son had Trisomy 18.
I was devastated. I didn’t know where to turn or what to do. Being religious people, my husband and I decided not to terminate the pregnancy. We knew God knows best, so we left it all in His hands. I continued my pregnancy, worrying and praying the entire time. My gynaecologist didn’t support our decision. She repeatedly told us that babies with Trisomy 18 don’t survive. Thankfully, I had a very surportive husband and an understanding family.
Day to day, my bond grew stronger with my baby. With every check-up, he grew and continued to gain weight. Through it all, we kept praying. At 35weeks, my baby’s heart stopped beating, and I was taken for an emergency c-section.
When I met my son for the first time, he was so beautiful. It seemed like nothing was wrong with him. Everything looked perfect.
We laid our son to rest on the 11th of September, 2015.
I’m glad I didn’t give up and terminate the pregnancy. He was a total blessing in my life.
by Band Back Together | Oct 2, 2015 | Baby Loss, Miscarriage, Spotlight On Baby Loss, Stillbirth |
“A person’s a person,
no matter how small.”
Dr. Seuss
October is a special month for us here at The Band. Miscarriage, Stillbirth, and other types of baby loss and child loss affect families every day. Too many people suffer silently through the devastating loss. For those going through it, we want you to know, your little ones matter.
October 15th, is Pregnancy, Infant and Child Loss Remembrance Day.
On that day, our Remembrance Wall will go up. We want all our little ones to be remembered. Please send us a comment or an email to bandbacktogether@gmail.com so that we can abide with you and remember your little one(s) as our own. Today, and every day, our hearts ache for those tables forever missing one.
As we go through this month, we want to hear your stories. Stories of miscarriage. Of babies born still, still born. Of baby and child loss. This is your month and there is no story too small.
Our other loss families need to hear your stories.
Please share how your losses have affected you. There is strength in numbers and comfort in knowing you are not alone.
We remember.
If you’d like to add your baby’s name to our Wall of Remembrance, please fill this out so we can properly remember your lost little one.
