by Band Back Together | Aug 7, 2011 | Encephalocele, Loss, NICU, Post-Traumatic Stress Disorder, Special Needs Parenting |
The old me died in a puddle of tears on that birthing table as my daughter whisked freshly from my body was clucked over and examined and I was left paralyzed from the waist down, terrified and alone. I was reborn into a new world where all of my old besties and allies were no longer at my side, where my husband was gone, and where I was, again, alone against the world.
It’s not terribly different, I guess, than how any of us are born, it’s just that I was older and not covered with that cheese-type stuff.
For eighteen months now, I’ve carefully picked up the pieces of who I was and assembled them back into a reasonable representation of who I am now. I discarded some of the old things I didn’t need: the anger that I’d held onto for so long and the inability to let people in and the long-held opinion that I didn’t need anyone but myself to be happy.
In turn, I’ve added some new things that I think I always needed but didn’t realize: I’m warmer, more loving and I’m more thankful of the people who do love me. There are bad things woven in there too, of course. You don’t go through major traumas without picking up some hell along the way. The darkness inside me is heavy sometimes. Sometimes I wonder if it’s more than I can bear.
These shards of who I am now are stitched loosely together with the belief that the universe is far less random than I’d ever thought it was and that someday, it’ll all make more sense. I have to cling to that idea or I’d probably go crazy and shave my head and tattoo a fire-breathing scorpion on it.
Monday morning, I will go back to the place that I was born. Not Highland Park Hospital, where on July 15, 1980, Rebecca Elizabeth Sherrick* was born, but Central DuPage Hospital, where Becky Sherrick Harks was born on January 28, 2009. I haven’t been back since her surgery.
My daughter, her curls like a halo, finally masking the scar that bisects the back of her whole head, she and I will march into the place where we were both born on the very same day. My ghosts will roam the halls with us, carefully holding my hand, gently guiding me find the place where I will take my daughter to help her find her words.
I hope that when I pass the ghost of myself in the hall I can send her a hug; some silent signal of strength from her future self. Because while the darkness is omnipresent, the sadness an integral part, there is always hope. I hope that she knows that the future is large and that while she will rage, trying to fit in to a world that no longer exists, in all that she has lost, there will be more that she gains.
Monday, the flowers in the vase on the desk will be fresh, and the volunteers will smile, confused by the visibly upset young woman and her beautiful daughter. They will not understand that sometimes, it just hurts.
They will not understand that sometimes, you slay the dragon.
Sometimes the dragon slays you.
Today, Amelia, Princess of the Bells**, she and I will slay my dragon.
————–
*what? You didn’t think my parents named me Aunt Becky, did you?
**Amelia, by my amazing friend the Star Crossed Writer
An army stands ten thousand strong and tall,
But you shall rise above the bloody fray
And rain down vengeance ‘pon your enemies
And all those who would stand against your will.
When darkness threatens fainter hearts than yours
And calls ring out for champions to arise,
The cries will cease and everyone will see
Amelia, the Princess of the Bells.
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 1, 2010 | How To Help A Parent With a Special Needs Child, Parenting, Special Needs Parenting |
I just spent two hours trying to explain to my middle child, who is 3 1/2 (and I suspect autistic), that the puzzle she insisted I get down for her did.not.exist, that hitting her sister was unacceptable, and that she needed to be quiet because other people were trying to sleep.
I spent 30 minutes in the closet, pointing to each puzzle we did have and asking, “This one? No? This one?” over and over again. We only own three puzzles, if that gives you any idea of the sheer frustration I experienced. She kept pointing and saying in her fuzzy Bitsy speech, “There! Up there! Pongo!” Pongo, for those who do not know or readily remember, is the father dog in 101 Dalmatians. We own both the original and the sequel, Patch’s London Adventure, but she did not want a movie. That much was clear as day, because every time I showed her the movie case, she screamed and shook her head no. Ooooo-kay, back to the puzzle-pointing-is-it-this-one? game.
Every time I didn’t find what she thought should be there, she got a little louder, a little more shrill.
After thirty minutes had gone by, I was sick of trying to convince her it wasn’t there, and I left, apologizing that I couldn’t find it but that we really don’t have it. I swear. This set her OFF.
She started hitting her sister in her frustration — this is a common problem with her — and we spent the next twenty minutes on a merry-go-round of, “Say sorry to Punky.” “NO!” “Bitsy, we do not hit. Say sorry.” “NO!” “Do you need to sit in time-out?” “NO!” “Then say sorry to Punky.” “NO!” “I’m counting to 5–” “NO!” “–and if I get to 5–” “NO!” “–I’ll have to put you in time-out.” “NO!” “1″ “NO!” “2″ “NO!” “3″ “NOOOOOOOOO!” “4″ “NOOOOOOOOOOOOOOOOOOOO!” “5. Okay, I’m putting you in time-out now for hitting Punky and not saying sorry.” “NOOOOOOOOOOOOOOOOOOOO!” I sat her by the front door (designated time-out spot) and she started shrieking. Not just the typical “I’m upset” screaming most children use to bloody ear drums, but the kind that evokes images of murder and torture. I’m a teeny bit surprised that our neighbors didn’t call the cops or CPS or something. Ten minutes of this while I sat there like an asshole, reminding her to be quiet because people are trying to sleep, including her baby sister.
She refused to calm down. For an hour. And before you think she couldn’t possibly go on so long, I know for a fact that this child can scream and shriek and cry and whine for four hours solid — and that’s only MY record hold-out time. I’m convinced she would have gone on longer had I not given in. But that was almost a year ago, and her tantrums — if you can even imagine this — have gotten worse.
I try redirection, and sometimes that works… but sometimes it just doesn’t, no matter how hard I try. And there are times where I don’t believe redirection is appropriate. Sometimes there just have to be consequences. Like hitting, for example. I’m not going to use, “Would you like to color, Bitsy?” when she’s smacking her sister around. That’s like I’m rewarding her for hitting. If they’re fighting over a toy and I notice she’s getting worked up, yes, coloring works as a distraction. But her safety and the safety of my other children demands a direct correction.
But Bitsy doesn’t take direction well. She screams and hits and bites and throws things, going so far as to plug her own ears so she can scream harder and louder without hurting herself. It’s like she’s trying to drown us out because reality and her idea of reality aren’t meshing, and she can’t handle it. Literally cannot handle it. Not “chooses” not to handle it, not “doesn’t want” to handle it, cannot handle it.
How do you deal with that? I’ve yet to find a way. I can’t trail her all day every day to catch every little stress-trigger and divert her from it. It’s just not feasible — I don’t even think it would be feasible for a stay-at-home parent of an only child. There are things I have to do; clean the house, wash dishes and laundry, mend clothes… And I have two other children, one of whom is only nine months old.
And you might wonder, why would I have another child when she was so time- and attention-consuming? Because 17 months ago (baby was born at eight months, not nine), she wasn’t nearly so bad. Her behavior, while problematic at times, was not constantly this way. She had her bad days, certainly, but she had lots of good days, too. I don’t know whether it was bringing another child into the house or just her own natural progression that did this to her, but I did not intentionally put myself in this position. I had no way of knowing this would happen, but it did, and now I’m stuck in it. And it isn’t just her behavior that makes my days trying.
My beautiful little girl used to eat a wide variety of food; in fact, there was very little she wouldn’t eat. Pears, the peel on an apple, cabbage, horseradish, and sauerkraut. That was it; that was her list of dislikes two years ago, and she’d been exposed to a very wide variety of foods. But now I’m lucky if she eats anything but granola bars, bologna, and fruit snacks. I’ve seen so many healthy foods she loved fall out of her diet, like broccoli, chicken breast, corn, fish, nuts, fruit of all kinds… The only real fruit that has passed her lips in months is blueberries, and I stared in amazement as she ate those.
I don’t know what to do anymore. I have to wait until after the holidays to start the ball rolling on being evaluated, and even then it is a long process. I have very few ways to cope day-to-day. I have no family, no friends nearby who can help me out or give me a break once in a while. And even if I did… who would be able to deal with her? And all three? Forget it! Their father can barely handle them, and he’s their father. He’s good with kids — he has six little brothers! — and even he throws his hands in the air and says he doesn’t know what to do anymore. I can’t even count how many mini-breakdowns I’ve had over the past few months.
And there’s no relief in sight. God help me.
by Band Back Together | Nov 2, 2010 | Anger, Coping With Divorce, Divorce, Help With Relationships, Loneliness, Romantic Relationships, Single Parenting |
The life of a single mother is not all that glamorous. Sometimes I act like it is. Life is just great being alone and raising 3 kids.
Truth be told, it is hard! I don’t have someone to sit down with at night and talk to about problems I am having with the kids. I don’t have someone who is raising them right alongside of me, someone who knows everything I do. It is a very lonely life.
Pretty much I have been single for the last 2 years. There have been a few small relationships, though. I have watched my friends find men that love them unconditionally. I have watched them be happy and in love. I go to dinner or go to hang out and all of a sudden I am the odd one out. I am the fifth wheel. Bonfires where everyone is cuddling close to their significant other, I am sitting alone trying to keep warm and keep from crying all the lonely tears that are bottled inside of me.
I was hurt really bad. It did more damage than even I like to admit. I know I have faults, and I even know what they are. But I just don’t see a point in trying to fix them if I continually get judged based on them. I am a lot better than before. My faults aren’t nearly as large.
When someone loves you…aren’t they supposed to love you unconditionally? Despite your faults? Aren’t they supposed to help you to better yourself and not judge you and leave you? That can’t be true love can it?
I want someone to stand beside me. I want someone to love me for me. I am a good person. I am a good mother. I am a good friend. I am kind. I am caring. I am loving and trusting and trustworthy.
Can one trivial thing ruin that in every single relationship I try to make work? Is it really that bad? Is being unorganized, and maybe a little chaotic and messy really a reason to stop loving someone? I don’t think so but I guess I am wrong because I have lost the one thing I want most in this life because of it. And in trying to find it again I get told the same thing over and over.
by Band Back Together | Oct 26, 2010 | Adult Bullying, Anger, Bullying, Childhood Bullying, Coping With Bullying, Emotional Boundaries, Guilt, How To Heal From Being Bullied, How To Help With Low Self-Esteem, Loneliness, Self Loathing, Self-Esteem, Shame, Stalking, Teen Bullying, Teen Rumors, Cliques, Gossip and Hazing Resources, Teen Sexuality |
We were the best of friends through high school – “The Three Musketeers”. We were going to be best friends for life. Sometime during senior year, they started changing. Drinking. Smoking. Having sex with anyone who looked their way.
That wasn’t for me. I chose not to party with them. They teased me about it, joking that I was the “good” one.
Not long after graduation, there was a situation where I chose my family over them. It all blew up, and the bullying and stalking began.
They prank-called me. They pitted our mutual friends against me with ridiculous lies. They showed up to my workplace and said they were going to kill me. They sat behind me in college classes and loudly whispered to others about how horrible I was. How I was an ugly, sad person. How they had just “pretended” to be my friend for all those years. They told all my secrets to anyone who would listen.
This continued for almost two years.
After the death threats at my workplace, I let them know that I would take out a restraining order if they ever contacted me again.
I blocked them on Facebook. I graduated from that college and went to another one in a different town. I changed my phone number.
Though I haven’t heard from them for years, I still feel sick when I think about them. They caused me incredible stress, self-doubt, and loneliness.
I don’t talk about it much, because I don’t want to give them the pleasure of knowing that they got under my skin. I left out many details of the story, and details about who I am, just in case they find this.
I’m now a happily married woman with a great career, an amazing husband, and a great group of true friends.
But I feel like I’ll always be looking over my shoulder, waiting for their next move.
by Band Back Together | Oct 19, 2010 | Emotional Abuse, Single Parenting |
People who know me refer to me as a single parent. I don’t really like that distinction because while I AM single and I AM a parent, the stigma attached to “single parent” is not a good one.
My Gigi is 5. She and I left her dad almost exactly five years ago when she was seven months old. He was mean and emotionally abusive. He seems to have changed a bit – or at least he loves his little girl more than he ever loved me.
He is involved. He sees her one evening a week, every other weekend and every other week he gets another shorter evening. It tears my heart out every single time she goes. Sometimes she cries and sometimes she runs away. Sometimes I tell her if she does either of those things she won’t be able to play with her friends in the neighborhood the next day because those things “hurt her daddy’s feelings.”
I’m sick of him and his feelings. My little girl wants to stay HOME. My house. Not his.
The other day a friend was talking about public schools in our area. She mentioned a school that is not particularly good and said, “well you know, all those poor kids have single moms and their test scores are horrendous.” Now, are there test scores horrendous because they have a single mom? Or what? The demographics of the school are not desirable due to the number of one parent homes.
Hmmmm…I’m a one-parent home. Does that mean my child will not be as smart? Or not do well on tests? Or will be a behavior issue or somehow not succeed because she lives in a single parent home? I choose not to believe that. You see, my daughter is MUCH better off with living in a single parent home. Her Mama may be messy and scatterbrained but she does not cry every day anymore or do things like look at her little girl and make the promise every single day that no one will ever hurt her.
I am a single parent. I did not choose this path, but I live this path. Would I like to have someone around to help pay the bills, cook the meals, clean up the kitchen and do a load of laundry? Yes. But I also would want to be in love with this person. And have that person love me back.
Another friend on Facebook had a status that said, “K is happy she doesn’t have to be a single parent anymore. Hubby will be home in three hours.”
You are not a single parent. You have a husband. Who works and makes money. He may be traveling for work or away from home but you are not a single parent. You don’t understand how much coordination it takes to figure out when and who will go to school conferences. Or what your child will be for Halloween or give her the choice of just having two Halloween costumes. You do not have to put a screaming, fighting, kicking child to bed when she has been up too late so she can have quality time with daddy. You don’t have to worry about your little girl looking at you and saying, “Mama, I love you the best. So much more than my daddy.”
I choose to not let the stigma of being a “single parent” define me. I try to wear the badge proudly and let my daughter know that we can do it ourselves. We are strong…Mama and Gigi against the world. I am raising her to be a strong woman who knows that her Mama can fix the sink or mount the shower head without the help of a man.
Don’t get me wrong…I’m not a man hater. I would love for Prince Charming to come in and sweep me off my feet. But at this point it would be a distraction from my most important job. My daughter. I can’t imagine having to share her with anyone else. I miss her when she’s gone. We have been apart so much I should be used to it. But sometimes I still cry because I miss her when she is gone for a weekend.
I am a single parent and I’m not ashamed.
