posted
I recently started making a scrapbook for Operaetta, which includes photos and journaling. From the time she was a year old until the age of 4 or 5, my daughter had seizures. She's been off her meds for a year now and is doing wonderfully, so she seems to have outgrown it. My question is, should I do a journal about her experience with epilepsy, or would it not be a good idea? I'm really undecided on this one. On one hand, geez...what a drag. On the other hand, this experience really colored a big part of who she is now. My other question is on handling my divorce/remarriage. I was just thinking of making a page celebrating when my husband came into our lives. What do you think?
I think if I did a journal about her epilepsy, I would do it separately from the scrapbook/photos. Something a little more private and personal.
I think a page celebrating when your husband came into your lives and perhaps a facing page with special photos of your husband and daughter would be great! (assuming he now takes an active role in her rearing) Though, you might also want to have a page about her birth father as well.
I've been trying to scrapbook myself for our upcoming bundle of joy. So far, I have an introduction page, a footprints page, a page about decorating the nursery and a pregnancy page with photos of me every three months. Posts: 1777 | Registered: Jan 2003
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posted
My daughter died due to an epileptic seizure at the age of ten 1/2 months. As she had not had a seizure or shown signs of seizure activity in over six months, her doctors had decided to begin weaning her from the siezure medication (this weaning process took a couple of months). Ten days after being off of the medication, she had the seizure. It happened in the middle of the night, so no one was there to do anything about it.
I give this to you as a friendly warning to have your daughter monitored to make sure that she is okay and that there are not petty mal seizures activity. You never know when the big one can come back.
As far as your question about including this in her scrapbook, I would say yes. THis was an important part of her life and should be remembered. Do not try to bury the hard past, but let her remember it. If her problems were genetic and are eventually passed on, having some of this information on hand may help future doctors.
posted
Christy, I think that's a good idea about journaling seperately from her regular scrapbook. I'm so glad you've already started one! They're a lot of fun, aren't they?
Jalapenoman,
I'm so sorry for your loss. My thoughts are with you. Thanks also for being concerned about my daughter's health. The dr. made us wait over a year with no seizures before we began the weaning process, as well as a clear EEG. Since her tonic clonic seizures didn't even show up on an EEG, I'm not sure how helpful it was, but at least the last one was clear with no irregular waves. If you ever want to talk, I'm on AIM as spaceopera30.
I wasn't wondering whether to hide the seizures from her, in case anyone thinks that. Operaetta is old enough to remember taking the meds, etc., though she still doesn't really understand what happened. I think I might just include our experiences with epilepsy in a letter that I write to her that will be in an envelope in her scrapbook. She definately needs to know how brave she was, even if she doesn't remember.
I once found and read a love letter from my mother to my father.
One of the most beautiful things I've ever read, so full of young love and heartache and unknowing of the trials and ultimate ending to come.
But capturing that moment of truth adds to who you are as a child of those two people. That everything isn't bad about them, that they have human emotions that are unsullied by greed and selfishness. That my parents, at some point, had the capacity to love and forgive and be forgiven.
Writing to your daughter of her own early strength in battle with an illness could give her needed strength later in life for other conflicts she may face. It will give her a connection to her mother and father in writing, a testimony of the love you hold for her, and her potential.
I think that it will make her cry.
And those tears will be worth more words that she could ever express to you and become a manifestation of the love in your family.
Posts: 14745 | Registered: Dec 1999
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I'm such a dork. I wrote this story about her several years ago. If anyone has time, please read it and let me know if it would be good to put in her scrapbook. Thanks!
My daughter is two and she’s beautiful. Sure, a lot of other adjectives could work here, but beautiful is the one that fits her best. It’s not really the hair, though the brown waves starting to cascade down her back are quite lovely. It’s not really her face either. That dimpled roundness is enough for most strangers to comment appreciatively. Jim Carrey, if he knew, would envy the myriad of expressions she is able to convey with just a flick of little eyelashes or the twisting of that little rosebud of a mouth. A thousand faces has she, the consummate little actress who hasn’t seen a stage yet. Discipline can sometimes be impossible. Who can help but grin when faced with glowering eyebrows and a stubbornly set jaw? This of course is accompanied with a pointed little finger and a voice much too big for someone who weighs all of thirty pounds. “You (pause) quit (longer pause) ME.” You see, she hasn’t quite figured out yet that the United States - and our home - is not a dictatorship run by...her.
Oh, that voice. It has awakened me many a morning. First with the cries of an infant and now the no-nonsense statement, “Get up.” It has screamed at me, shrieked at me, pleaded with me, but best of all loved me. Suddenly and unexpectedly, two arms around my neck. Silky hair with that wonderful smell tickling my nose. What used to be unintelligible sounds have now evolved into “I love you.”
No, the best of her is something not seen or heard so easily. Something that made its first appearance on the day of her birth. She slid silently from the comforting womb into a cold bright hospital room. No cries at all, making her mother ask if she was okay, prompting the doctor to reply that some babies were just quiet. So quiet. So quiet that in fact the same doctor took her back from the embrace she’d just been placed in. Assured that all truly was fine, she was given back to the arms that had ached in the small moment she had been gone. Given back to the mother who had waited for what seemed like an eternity to meet this little person. Back to me, who had wanted a boy for the first several months, until it was discovered it was in fact a girl I was carrying. Then no one could have convinced me I’d had my heart set on anything but a child whose long hair I would one day put up in pig tails with matching pink bows. Lying there together - absolute bliss. The tiny circle of her face was the only thing visible after the nurses finished wrapping her up like a package ready to be mailed. What promise reflected in that face, just minutes old yet ready to change the world. Total contentment and peace resting in my arms. She accepted this new life, far away from the warmth of the womb and the beating of my heart. Yes, she accepted it without complaint, and gazed at me with a wide-eyed stare of trust.
She stands beside me now as I write. A long-winded speech involving her baby, who she cradles in her arms, follows. She stares at me as she speaks, her dark eyes focused intently on mine. Those eyes have seen so much in the last two years. Things that baby eyes shouldn’t have to see. They’ve seen strange people stick funny little uncomfortable things all over her head. They’ve watched Mommy and Daddy walk away and leave her with two men who strapped her to a board and inserted a needle in her spinal cord, making her screams echo off the walls. She’s seen the white ceilings of a hospital too many times, from both a hulking metal thing resembling a cage more than a crib and also the narrow bed of an emergency room. Her eyes have pleaded for sleep, watching her parents refuse her the comforts of food or drink. They’ve then seen the two people she trusted the most turn her over to someone in a white coat, who promises she can sleep and have her beloved “ba ba” if only she’ll lay very still while a tube is passed through her nose down to her stomach. She’s seen the worried faces of strangers standing over her; the inside of an ambulance.
She knows the laboratory of the hospital by sight. Her five-year-old big brother and I pray aloud together before we walk in. “Please God, let it not hurt her this time.” It’s just a simple prick of a needle, but to watch it be done over twelve times within six months is almost too much to bear. Time and time again our prayers go unanswered. It does hurt her. I sit there with my legs holding hers down. My arms, the same ones that held her so gently at birth, have a job to do also. One holds down her right arm, and the other pins her head to my chest. She watches my traitor limbs holding her down for pain she doesn’t understand, and sees her brother hide his face. Through tears she says “Thank you” to the nurses when it’s done.
Epilepsy is such a funny-sounding word. Her brother asked not too long ago if she had gotten it from drinking Pepsi, “Since epilepsy and Pepsi have the same words in them.” It has changed us, made us each a bit different. It makes me angrier than I should be sometimes. The world appears tilted, skewed sideways on its axis. How dare the sun shine when a child barely old enough to say “Ma Ma” sits blessedly unaware in yet another doctor’s office as her mother gets the news that life will never be the same again? I sat for weeks afterward on the floor beside her crib, my hand reaching through the white metal slats. I touched gently, so as not to wake her, and hated the tiny thing in her brain that would forever brand her different. Sitting there with her, I have to wonder. The research I’ve read isn’t heartening. She will be more at risk for a learning disorder. A pamphlet claims that while people with epilepsy are of normal intelligence, they are usually at the lower end of the spectrum. Does that little face still reflect the same promise?
It makes her brother ask a lot of questions and look for answers that his five-year-old heart can deal with. It makes him worry. As he grows, it gets harder. Driving to daycare one morning he asks, “Will they always have to look at her blood?”. I reply that the doctors don’t know. “Will it ever go away?” Once again, I have to answer that we don’t know, maybe not. I watch his lip stick out and his face crumple as he turns to the window. He’s trying not to cry, because as much as he claims a baby brother would have been better, he loves that little girl sitting behind him in her car seat. This same little boy, who isn’t even allowed to watch Saturday morning cartoons because they might be too violent, has seen his sister collapse and be hauled away in an ambulance. His eyes, perhaps, have seen too much also.
It has indeed changed all of our lives - the way we live each day - from the first moment it appeared. A frantic call to 911 on a Sunday evening, praying the paramedics would arrive soon. Watching the last traces of blue disappear from her face while they explain she’s had a grand mal seizure. A bottle of sticky red syrup has become more valuable than liquid gold. We become familiar with rages and sleeplessness, side effects from the medication that both helps and harms her. Choosing a babysitter is not such an easy task anymore. Anyone who is left alone with her for even a few moments must know her history and be prepared to perform CPR, if need be. This funny-sounding word cannot be kept private, it must be shared. To not do so could mean her life. The sharing can be painful, for strangers and even new friends can be hurtful. The babysitting facility at a local rec center tells me that if she should suffer a seizure they won’t do anything for her, they’ll just page me. I picture my daughter lying there alone for the minute amount of time it would take to reach her and tell them “no thank you”. We don’t want a membership.
Most of my tears in the last year have come at unexpected moments. A caring doctor kneels down to play at her level and sees her as something other than a diagnosis. Members of our church flood the phone lines with concerned calls after a seizure. Her grandmother treats her like the word “epilepsy” doesn’t exist - too many other people don’t. A nurse holds her hand. Her pediatrician explains to her brother that it’s ok, don’t be scared, his mommy is a little sad because she doesn’t want his sissy to be sick. My younger sister stops by our apartment unannounced after hearing of an episode to just hold her and know she’s all right. The pharmacist asks how she’s doing as he fills the prescription. During a prayer vigil a devoted Christian prays for my daughter’s health - for an entire hour. A laboratory technician hands her a stuffed bear and gently smoothes her hair back. A thousand words could not express the gratitude I feel at those moments.
The only thing this strange-sounding word hasn’t changed is my daughter herself. Her eyes still manage to look out at the world with trust. She has taught me not to pity her, or even myself, too much. She continues to accept life without complaint, this daughter of mine. Yes, her eyes have seen terrible things, and her body has felt more pain than a child should have to bear. But she still greets each day with a dimpled grin and eagerness to explore. Part of this I know is simply from being a child. Part of this is something else, perhaps something God instilled in her while she floated in the safe waters of the womb. Back then only He knew what she would face, and I think the loving God I believe in wanted to prepare her. The sedation nurse at the children‘s hospital, upon trying to hold my distraught daughter, said, “My, she’s powerful.” Yes she is, I wanted to reply, in so many ways.
That which is the best of her is untouchable, and even unseen by those who don’t know her. However, I am blessed enough to see it every day, with her every movement. The way she throws her head back and whoops great belly laughs at her brother’s silly antics. She tests above-average on a developmental evaluation. The way she will burst into an impromptu song in the middle of dinner. She turns somersaults, so very proud of herself, in the middle of our living room. Her legs, now sturdy from therapy, pedal her red tricycle furiously down the sidewalk, threatening all pedestrians in her path. The way she is still able to trust and believe in life and all it holds. No matter what ugliness and pain she has seen in the world so far, she is taking the best. I was told once that God has a purpose for everything, and that He is able to work even the most horrible things out to good for His glory. Sometimes, when the apartment is silent except for the sounds of two children dreaming, I wonder about this purpose. Thoughts tumble through my mind, and I can never come to a definite conclusion. However, night after night the same idea comes to me. Maybe this funny-sounding word, this thing that has made me alternately weep and throw plates against the wall, really is here for a purpose. It has shown me, in the form of a little girl, that life always holds promise. Though sometimes it can be difficult to find, we just have to keep looking for it.
My daughter is two and she’s beautiful.
Posts: 2578 | Registered: Apr 2004
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posted
Space Opera, I think that is an amazing, honest, beautiful and touching piece of writing.
You have told your daughter's story simply, not avoiding the brutality where necessary. Her braveness and spirit shine through in every word. As does that of her big brother, ever protective and concerned.
I have so much admiration for your family - your daughter, your son - seeing what hardships you have faced with courage and grace.
I would certainly put it in your daughter's scrapbook. Such words will be an amazing gift to her.
Thank you for sharing that. I really hope that all does go well for you and your family.
((( Space Opera, the operaette and operalet )))
Posts: 4393 | Registered: Aug 2003
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posted
*has a very Griffin and Sabine image* Get a card envelope and put the letter in it on a scrapbook page. Actually, a "letters to you" theme or page would be a very neat idea. I love the creativity and seeing people's different styles of scrapbooking. I think personality really comes out on the page.
*wipes tears* Sure made me sniffle. What a beautiful piece of writing.
Posts: 1777 | Registered: Jan 2003
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My purpose in sharing was not to gain sympathy, but to show that my ideas were based on merit and experience.
My daughter died almost ten years ago, but will always be a part of my life (in this world and the next).
Posts: 279 | Registered: May 2004
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