Special needs and a lot of love
08 Jun 2015 Leave a comment
in Home Tags: compassion, down's syndrome, faith, family, Klein Stake, love, miracles, Ramona Siddoway, special needs, youth conference
The following is an email I received from Michael Walker, the father of Tashina, a girl with Down’s Syndrome. Deseret News will be publishing an article I wrote about Tashina, a wonderful young woman who has touched many hearts in our area. I will update the website with the link when the article goes live. In the meantime, Michael has given me permission to post this letter here.
Feel free to leave any comments about your experiences that relate to this topic.
“I have some very strong feelings about dealing with children with special needs and feel to share some of them . . . in hopes that we can all learn from each other and grow from each others experiences. My stories are not unique, but maybe we can all grow more through a little extra communication. Here is a copy of the birth announcement that I typed in January 2001, when our fourth child was born.
Birth Announcement
Tashina Darlene Walker
Born 10 January 2001 / Time 12:59 PM / Weight 7.74 pounds / Height 20 inches
We want to add a personal note because we would like you to know that Tashina was born with Down’s syndrome. During the past week, we have learned a great deal about all the positive ways Down’s syndrome can affect our daughter and family. She is a beautiful, responsive baby, and we hope that you will accept her into your hearts without pity or reservations. Please don’t feel that you have to pretend that she is “normal”, and please feel free to ask us any questions you may have about her.
With Heavenly Father’s help, we hope Tashina will grow up strong and healthy. We want you to share in the joy of her progress along the road to maturity. She may travel that road more slowly than the others, but we will consider each new milestone in her life a blessing. We feel that Heavenly Father has placed Tashina in our home and in our hearts for a very special purpose. We also know that our lives will be enriched by all the special gifts that Tashina was meant to bring to her family and friends. Her presence has already filled our home with much happiness and we are so very grateful to our Heavenly Father for her.
Over the course of the last few months, we have thought very seriously she would be born before the end of the year to give us the tax break I was hoping for. When we got pregnant, we thought nothing of the tax break, but timing created the thought for us, since she was due 5 January and both Tina and Christopher were born early, 3 weeks and 1 ½ weeks.
On 31 December, I whispered to Tracey’s stomach asking Tashina to ask Heavenly Father to allow her to be born in 2000. Many prayers, and lots of preparing of our hearts and on 10 January, she was born. No tax break and not a New Year’s Eve baby, like we had hoped for. Our Dr. had told us that she could start labor and deliver Tashina on 30 December, to give us the tax break, but I felt very strongly that we were not supposed to do that. We felt that we were supposed to leave the birth in Heavenly Father’s hands. When the baby wasn’t born before the end of the year, we were both very disappointed; as we thought Heavenly Father was going to give us the tax break. I was a little upset and had some repenting to do, for my feelings. After two days of praying asking why (no tax break), and an additional two days of repenting for asking why, I felt a peace come into my mind, along with a feeling that $1000 is a lot of money, but it costs about $5000 to bury a child. I was immediately humbled, and grateful to a loving Father in Heaven for hearing and answering prayers, even if the answer was not as expected. Our Dr. had been telling us for 5 months that there were going to be complications during the birth. She prepared us for the complications during each visit. Each time she reminded us of the impending complications, we felt a peace from the Holy Ghost helping us to not worry. Without listening to the Holy Ghost, we could have had her in 2000, giving us a tax break, yet lost Tashina during childbirth.
We kept feeling that they that are wise, take the Holy Spirit as their guide, guiding us in all things and not questioning His plans of action. Before the birth, Tracey was given a Priesthood blessing stating the Dr. would know what to do and all would go according to plan. The water broke when Tracey reached 4 centimeters and the baby’s stats dropped like a brick, as it lost all oxygen. The cervix opened from a 4 to a 10 immediately, allowing the birth with less than 2 minutes to spare from the lack of oxygen, an absolute miracle.
During the delivery, a portion of Tashina’s lung collapsed, causing her to struggle to get started in this life. She was born with an infection, a collapsed lung, and lots of congestion in her lungs, a hole in her heart and the dominant side of her heart acting as the weak side. She was put on oxygen to blow up her lung and fix the leaks, to help her fight the congestion and to give her heart the oxygen it needed so the weak side of her heart could strengthen and become the dominant side like it was supposed to be. Her Dr. said that if the heart can strengthen itself, it may close the hole. She is a sweetheart and so beautiful and precious.
There has been an outpouring of prayers and love from our family and friends that we have gratefully appreciated.
Not in this letter that was mailed is the fact that Tashina spent 2 weeks in the NICU, then came home from the hospital with an oxygen tank hooked up to her nose 100% of the time. As she came off of the oxygen a few weeks later, she had three different types of pneumonia, in three different portions of her small lungs. She was born deaf, and had many problems of various seriousness that had to be dealt with. Tracey and I have spent many days in doctor’s offices and hospitals. Also not stated in our birth announcement is what really happened in the hospital when Tashina was born. It was truly a miracle. Although I skirt most of the specifics and give only a few of the particulars, her being alive is truly a miracle. Equally miraculous is the fact that within a few weeks of her birth, her hearing began to improve and today she hears without the aid of hearing aids, though not very well at times.
Earlier in the pregnancy, Tracey’s Alpha Feta-Protein test came back citing that something was wrong with our baby. We had test after test, but everything else came back normal. We decided to not have the amniocentesis because of the dangers of that particular test, along with our fear of the worry that the result of that test might create in our family when we were already feeling completely at peace. Tashina was our 4th child, so we were not new parents. We were both healthy and did not smoke, nor drink alcohol. When all of the tests came in looking good, we thought our child was going to be born to be normal.
In all of Tashina’s life, I have never thought of her as having Down’s syndrome. She is a normal, loving little girl, who happens to have an extra chromosome. She loves to smile, laugh, joke and play. She loves pizza, chips, soda and hamburgers. She has friends and loves to go to grandmas and grandpa’s house, and additionally loves to go bowling, swimming, to the movies and to the park. She was mainstreamed into a kindergarterten class this past year (in the 8th grade now), and I think that this is the real reason that I have shared Tashina’s birth experience with the class. I wanted to paint the picture from the beginning, so that when I talk about my experiences, it might offer credence to my story.
My wife and I look at her pretty often and joke about our little bean (human being). She truly is a human being and deserves all of the rights and privileges that the so called “normal” children deserve. She is no different than they are, except her having the extra chromosome and thinking a little slower, with a little bit of stubborn behavior added in for good measure.”
Goodbye Mr. Spock
06 Mar 2015 4 Comments
in Home Tags: childhood, humanity, Leonard Nimoy, live long and prosper, loyalty, mourning, Mr. Spock, Star Trek, vulcan death pinch
Leonard Nimoy passed away last week. We knew and loved him best as Mr. Spock. Mr. Logic. Mr. green-blooded, pointy-eared, emotionless, smarty-pants. We watched as he refused to acknowledge his human half, denying any emotion he may or may not have had.
When “Star Trek: The Next Generation” came on the scene it was interesting to see how the new characters they introduced dealt with the human condition, especially in relation to emotions. We had two characters on opposing ends of the spectrum: Data who, as a robot/android had NO emotions and trying so hard to become a real boy, and then you had Deanna Troi, an empathic, who was a walking therapist, tapping into everyone’s emotions. She never had to ask, “So, how do you FEEL about that?” because she was swimming in it. Two “aliens” trying so hard to show us episode after episode what it meant to be human; to feel pain and love and make mistakes and how it was okay, that it was all okay and preferable to the alternative.
As much as I loved TNG, my heart always belonged to the original, to Spock and even to the halting speech patterns of Captain Kirk. I loved the sparring between the ill-tempered doctor and the maddening logical 1st officer. The three of them – Spock, Kirk, and McCoy – aptly exemplified the real human condition. Our strive for logic and trying to move away from too much emotion, our tendency to get pissed off at everyone and everything just because the people around us are just plain annoying as all get out, and then the middle-of-the-road leading man himself, leaning on logic on the one hand and yet knowing when to tap into just enough of the righteous indignation on his other hand.
Spock taught us more about humanity than all of the other characters combined. I don’t remember a dry eye in the theater when Spock died in “The Wrath of Khan.” What better epitomizes humanity than real love and sacrifice? What better mantra than the needs of the many outweigh the needs of the few – or the one?
That scene was a coming of age moment for me. I was embarking on adulthood and a symbolic ending of my childhood. I grew up with Spock and Uhura and Chekov (and crewman number 5 who always managed to get himself whacked in the first scene.) You always knew who was and wasn’t going to make it and in those days the big guns, the main characters, ALWAYS made it. So when we were comfortably sitting in the velvety theater chairs and we saw the barrier of glass between Kirk and Spock and knew what Spock was doing and that Kirk couldn’t get in to save him . . . oi vey . . . Kirk and Spock’s emotion-wrenching, last-conversation-on-earth dialogue was a kick in the gut, a betrayal to our childhood fantasy that people who mean the most to us can’t die, don’t die, or won’t leave us. It was a divergence from the patterns we grew to rely on in our break from reality. But Spock did leave us that day, and our illogical selves (because we KNEW it was a movie and he was a character from a TV series) mourned his passing.
But even as we exited the theater, moved from the darkened room into the bright lights of candy and popcorn counters we breathed a wistful sigh of relief. We knew it wasn’t real and thank goodness we could walk into the light and know that it was all pretend. They had to bring Spock back. We HOPED they would bring Spock back in a later movie.
And they did. We wanted it so much, too much. If they couldn’t bring back our childhood we could at least maintain that childlike wonder of fantasy, of bringing back someone we loved even if defied our day-to-day adult logic.
But now, we have no choice but to say goodbye to our childhood, to own up to the fact that there are no shiny candy and popcorn counters waiting outside, no sigh of relief that it was really only a movie playing on our emotions. There will be no sequels or yet another resurrection of the original Spock.
Leonard Nimoy, as Spock you taught us about loyalty and love and sacrifice – and pain. Without trying, and with wardrobe no fancier than pointy ears and a bad haircut, you had our hearts and our attention. You had a generation practicing not only the “live long and prosper” hand sign but believing we really could knock out our little sister with a Vulcan death pinch. The illogical side cheered us on, chanting in our brains, “It will work! It will work!” But it is the logical side that watches, silent and impassionate, as that same little sister, now thoroughly annoyed, swings around and lands one believable punch right in the nose.
You taught us episode after episode what it really meant to be human; that not only is it logical but expected to feel pain and love and make mistakes.
Mr. Nimoy, through the actions of the one, you impacted the hearts of the many.
You will be missed.
To die or not to die? What was the question?
21 Jul 2014 Leave a comment
in Home Tags: death, humor, idioms, indexing
Doing some indexing for the LDS church. As a writer I have to wonder at some of the obituaries.
“Gladys (not her real name) age 83 died unexpectedly in the hospital surrounded by loved ones.”
Hmmmm. WAS it unexpected? For the loved ones to be surrounding her they HAD to have known death was on his way to collect, either because she was ill or they were waiting to whack her. Or are the “loved ones” indicating the spirits of people who have passed on? Could people see them?
To procrastinate my indexing even further I looked up terms that meant the same as “whack” – as in to kill – and came up with some interesting idioms for “dying” or “death”: (I’ve put an asterisk by the ones I’m particularly fond of.)
A Debt Everyone Must Pay
A Finnish To The Suffering
Ashes To Ashes
Assume Room Temperature
At Room Temperature
Bad End
Bad Turn of Events
Becoming Sainted
Before One’s Time
Belly Up
*Bereft Of Life
Bird’s Eye View
Bite The Big One
Blessed By The Pale Priest Of Dreamless Sleep
*Blinking For A Really Long Time
Bought It
Bought The Farm
Breathe One’s Last
*Buy A Pine Condo
Came To An End
Cashed Out
Cast Off One’s Hooves
Ceased To Be
*Checked Into The Wooden Waldorf
Crossed The River Styx
Crossed Over
Dance The Last Dance
Davy Jone’s Locker
Deader Than A Doornail
Defunct
Different Point Of View
Done For Now
Done With The Dance
Exit The Stage
Fade Out
Falling Off The Perch
*Fat Lady Has Sung
Feeling No Pain
Fiddler’s Green
Final Chapter
*Final Edit (perfect for writers!)
Floating Around Somewhere
From Time To Eternity
Gathering The Asphalt
Give Away The Spoon
Going Home In A Box
*Gone To The Narrow Bed
Gone West
Hand In The Keys
Hang Up One’s Sneakers
*Hop The Twig (or stick)
*Inanimate
*In The Bone House (coffin)
Joined The Choir Invisible
Kick The Bucket
Last Call
Last Great Mystery
Lifeless
*Living Impaired
Looking Down Upon The Earth
Lost The Fight
Meeting One’s Maker
Off The Hooks
Off The Twig
One With The Earth
Out of Date
Paid Charon’s Fare
Part of Upper Management
Paying A Debt To Nature
*Picking Turnips With A Step Ladder
Playing Checkers With God
Playing The Harp
Riding The Pale Horse
Saw His / Her Last Sunset
Sent To The Promised Land
Shuffled Off This Mortal Coil
*Singing With The Choir Invisible
Six Feet Under
Snatched From The Planet
Start The Last Journey
Stone Cold Dead
*Stretch One’s Legs
Swan Song
Talking To A Ouija Board
*Take a dirt nap
To pop one’s clogs
To go to a Texas cakewalk (hanged)
The Next Great Adventure
*The Parrot Is Dead
Threw In The Towel
Traded To The Angels
Traded Vehicles (getting another body)
Up and Died
*Went Over To The Majority
Went To Level 12 (for a building with only 11 levels)
With Better Company
With The Angels
Won’t you be my . . . Brit?
12 Mar 2014 3 Comments
in Home Tags: Brits, focus, London
My husband and I spent a week in London not too long ago. We toured the city walking to different sites, mostly of my choosing. He reminded me to not walk ahead nor behind but right beside him so we wouldn’t lose each other in the crowds. I agreed.
We pull out from one of the many churches we were looking at that day and I turned to the left and began walking. I was feeling guilty that so much of the site seeing was for solely my benefit, so I linked my arm with my husband’s, leaned over and asked if he wanted to pop over to see that cool building across the street. I hear a British, “Excuse me??” I turned and with a scream realized I had linked with some random Brit who was roughly the same height, distinguished, and looking at me like I was quite daft — all the while still maintaining his stride away from me. I scanned the crowd for my real husband and see that he’s several feet behind me, his hands raised in the “just what the heck are you doing?”gesture.
“I thought we were supposed to stay side by side!” I huffed once we reunited.
“Well, at least if you are going to go home with a stranger you did pick a nice looking one.”
The Good Wife’s Guide
24 Oct 2013 3 Comments
in Home Tags: 1955, humor, husbands, immense personal satisfaction, marriage, Ramona Siddoway, relationships, The good wife, wives
Some of my favorite “guidelines” from 1955 . . .
“. . . catering for his comfort will provide you with immense personal satisfaction.” Oh yeah. It provides something alright.
“Be a little gay and a little more interesting for him.” Lucy, I don’t think that word means what you think it means.
“Don’t complain if he’s late home for dinner or even if he stays out all night.” Oh, don’t worry. I won’t complain. He won’t hear it coming . . .
“. . . remember, his topics of conversation are more important than yours.” What if my topic of conversation begins with, honey . . . I’m a little gay . . .
“Don’t ask him questions about his actions or question his judgement . . . you have no right to question him.” You know, these are pretty good. Where can I get a wife?
Cure for empty nest syndrome
19 Sep 2013 1 Comment
in Home Tags: batteries, clocks, empty nest syndrome, humor, Ramona Siddoway, verklempt
I’ve been reading a lot about how to cope with empty nest syndrome. I’ve read, and heard from friends in the past, about how the house seems so empty and quiet. People, especially women, speak of listening to the loud ticking of the clocks.
That sounds so depressing.
After hours and months of research I’ve come upon a brilliant plan to help me with empty nest syndrome.
I’m taking the batteries out of the frickin’ clocks.
Problem solved.
French kissing and the alcoholic cat
23 Aug 2013 Leave a comment
in Home Tags: alcohol, alcoholic, cats, drinking, dry heave, feline, french kissing, humor, kiss of death, Ramona Siddoway
Domino after a cologne binge
I have a complaint about Hollywood. Actually, I have a lot of complaints about Hollywood, the least of how they glitz up things that have no right or business being glitzed up. I’m not just talking about the crime, adultery, and desperate singles looking for a mate. I’m talking about kissing. Not the cute peck on the cheek from your grandmother or godfather (not to be confused with the kiss of death bestowed upon a minion who has betrayed the family “business”.) I’m talking about the open-mouthed, organ-swapping activity that many of our spray-tanned, uber-sleeked, blinding-white smiled, 10-hour hair and makeup peeps we worship engage in on both the big screen and the little.
First of all, watching a pretty person kiss is so much different than watching a not-so-pretty-person kiss. But even if the latter happens to be close to screen worthy, the act of watching two people chewing on each other is enough to make even a person with the strongest of constitutions dry-heave.
Watching French kissing on the screen is a bit less nauseating when we have been programmed to suspend belief. It’s easy to do when the size of our entertainment (a 27 inch or 52 foot screen for instance) isn’t even in realistic dimensions. But in real life, like at a wedding after the minister announces that the couple are now man and wife, with no compunction, boundaries or filters grab each other like Frankenstein ready to rip off his new bride’s head, or going in for the bite like a Cullen ending a fast, you can almost hear the teeth clank like two wine glasses. It’s shark week all over again.
People, I know it’s your day. We get that. We’ve indulged you for most of your engagement period and we’ve made it this far; but this is where I draw the line.
Keep the mouth closed. Keep. It. Closed. Don’t make us feel like you’ve decided to start the honeymoon early. It’s awkward. It’s painful. And there is nowhere to look. (Unfortunately, social conventions dictate we watch.) We are left with that plastic smile frozen on our lips, cooing “awwwwww” when we want to turn our heads and groan “ewwwww”. We’ve all brought you a gift; now give us one in return. You can keep the template thank you cards you will be sending out 6 months later. THIS will be our gift. Salvage your dignity and rescue our stomachs. You’re not on a big screen and it doesn’t look like it when we watch, and unlike Hollywood we don’t have the power or authority to yell CUT!
That brings me to another dilemma: alcoholic cats. We call ours “Alkie” for short. (That and Lil’ Hitler but that’s for another post.) Let me hasten to reiterate our Mormon lifestyle. We do not drink alcohol in any form (except Nyquil on occasion. Hmmmmm, does Nyquil still have alcohol?) Nor do we keep it in the house. So how does an Angolan cat get her hands on it?
Any way a druggie can.
She begins by stalking anyone in the house wearing even the tiniest spritz of perfume or cologne. There is no preference of taste or smell; it’s the booze in the bottle that’s been sprayed on the skin. Let that cat get near you and she’ll skin you alive with her sandpaper tongue trying to get every last drop even at a cellular level. She licks every plastic bag that crosses our threshold, hopping on forbidden tables to roll among the freshly placed new grocery bags from petro heaven. It’s a veritable smorgasbord of crinkly, tangy plastic waiting for a taste test.
We can accept the plastic bag fetish, it lasting only as long as it takes to unload the groceries. We turn a blind eye to the cologne sucking. A quick backhand and she is on the floor with that stupefied, slaphappy look of “it was worth it, man. It was worth it.” But we saw something the other day that couldn’t be unseen. It was a bridge too far, the line that was stepped over and now forever erased. We walked into the room to an unsuspecting cat – unaware and not caring who saw anyway – licking away, engorging herself on an opened, magazine perfume sample.
We could control it when the proverbial liquor cabinet was locked up and out of reach. But this – this was inexcusable. This was every pet owners’ nightmare. The outside world had encroached, the pushers infiltrating our haven, their tentacles slyly reaching into and stroking the dark corners of our cat’s psyche. Who would ever suspect an innocent, free perfume sample capable of enabling a cat junkie? We didn’t even consider moving the insert, or that after we had indulged our own nasal senses and casually flinging it on the table there would be enough to attract and entice a weak, foolish, and obtuse feline.
And, like Hollywood, you may think this scenario as glamorous, the image of a model in her penthouse sniffing her reward for landing that job as a centerfold model in a Lane Bryant catalogue. Well, it’s not, people! It’s not glamorous at all. Lives are altered forever. Once a cat has sampled magazine inserts she won’t stop there. Next she will be slinking onto the MW Cleaners truck looking to get hopped up on dry cleaning fluid.
We are taking this day by day, trying to be positive but not getting our hopes too high. Ha. {She chuckles wryly.} High. That’s exactly what we’re up against. A cat with no morals, trying to figure out how to get her next fix, lurking around bathrooms or pawing through the pantry looking for discarded, forgotten grocery bags.
We can keep the bags and magazine inserts out of a cat’s reach. That we have in our control. But the wedding kiss? Or the couple who forget they are in the midst of a crowd at the Renaissance Festival, making out like a monk forsaking his vows? We can only do so much in spreading the word. Blog by blog, subtle “raaaaallfffff” hints placed here and there . . . keeping the pet world drug free and the reality kissing at bay. It’s a lonely job, but someone’s got to do it.
Mornings
15 Jul 2013 3 Comments
in Home Tags: mornings, Ramona Siddoway, writing
Photograph by Ramona Siddoway
Mornings are not always my friend. At least, not when I first wake up. I can’t say with any accuracy that I’ve been much different for most of my life. That first time I open my eyes, the brief moment of disorientation – not entirely unpleasant, but a moment between the “then” of the night with its dreams and own experiences and the “now” that is about to happen. My dreams are rarely unpleasant or frightening, but I always wake up feeling like I’ve really had a workout. Maybe its my psyche working out all the details of the day before, maybe its my imagination and creativity finally getting a free reign without the internal and external editors that they are constantly butting up against in my waking life, or maybe its my subconscious gently but firmly reminding me of who I’m really supposed to be.
I remember talking to a friend about an upcoming camping trip we were all planning on. I had never personally camped in this particular area we were going to and was asking my friend for some details. He said that mornings are a bit chilly but once you get moving you get warmed up and things are good again. He talked about how he’s a little stiff when he first gets up in the tent, but he just moves forward, starts making the fire, and soon the cold and stiffness are gone.
I still remember the visual in my head of this Wyoming cowboy, crouching over the first struggling fire of the day, waiting for the stiffness in his fingers and the cold in his bones to dissipate. I like that image.
When I first wake up there’s often this mental, emotional, and psychological stiffness – a stiffness of the soul if you will. But once I’ve gotten up, gotten moving and on with my day that stiffness dissipates pretty quickly and I’m good for another twenty-four.
With this new, upcoming season in my life the mornings center around that echo in my heart; the one that reminds me that soon there will no longer be extra bodies in the beds above me (unless, of course, I put them there. Mwahahahaha!!! Ahem. Excuse me. I digress. Back to our regularly scheduled achefest . . . )
Soon there will no longer be breakfast mess waiting for me to clean. (It will now only be dinner mess that I refused to clean the night before.) Nor will I be flying to my cell phone to text the offending miscreant who didn’t do something they should have. Instead the only thing waiting for me in the kitchen will be the mouth-breathing, snarky, Angolan cat who will give me my 30 seconds of allotted affection for the day. Or Jack, our Frankenpuppy (an aging dog who, because of strange parentage, has an abnormally small head for his large body) who will eventually slink down the stairs after sleeping on a forbidden bed.
It’s in that quiet that often frightens me. I can’t exactly say why. It’s the quiet that seems to shout echoes of the past and threats of uncertain futures.
I realize I have to move forward each day with the faith that the stiffness won’t really stay but a minute. I have to remind myself that the emotional and psychological and spiritual manna will always be waiting for me as long as I have the courage to just get up and harvest it.
So once I’m up I usually make my way to our patio. I read some scriptures and meditate as the birds are waking up and just as the Texas sun makes its way over the fence. I need to remember to take a deep breath and not let fear from allowing me to BE in the quiet, in those moments just after the “me” of the night gives way and melds with the “me” of the day.
In the end it’s all good – the night, the morning, and the quiet in between.
