Valentine’s Day Thru Special Needs Thick & Thin

Valentine’s Day Thru Special Needs Thick & Thin

by | Feb 14, 2014 | Different Dream, Holidays, Special Needs Parenting

Valentine’s Day Thru Special Needs Thick & Thin

Valentines Day is here. My husband, Hiram, and I will give each other cards, but there will be no night out, no flowers, no chocolate, no bottle of wine. Just enjoying a quiet evening at home, a tradition that started in 1983.

Our First Valentine’s Day as Parents of a Child with Special Needs

That Valentine’s Day was our first as parents of a baby with medical special needs. It was also the year I understood what a loving person my husband is. Not because he purchased a beautiful card. Or a bottle of wine or flowers or chocolate. And not because he made reservations for a romantic dinner at a swanky restaurant. None of those things were possible that year. Our baby boy was fighting another bronchial infection. We were exhausted from nine months of life-saving surgeries, nine months of invasive medical procedures, nine months of trying persuade our little one to take enough nourishment to thrive, nine months of sleep deprivation, nine months of surrendering our dreams of parenthood to the reality of raising a baby born with EA/TEF.

How My Spouse Said “I Love You” that Valentine’s Day

Though we were tired and distracted, my husband said “I love you” in unforgettable ways:

  • Night after night, he slept in the recliner with our fussy baby so I could sleep.
  • Day and night, he diapered our baby and gave him bottles while I pumped breast milk, the only nourishment our little guy’s sensitive stomach tolerated.
  • Meal after meal, he shadow boxed in the kitchen to make our boy laugh so I could sneak a spoonful of baby food into his mouth.
  • Month by month, he attended emergency medical technician (EMT) training so one of us had a clue about how to handle our son’s complex medical needs.
  • Hour after hour, he patiently endured my frequent emotional rants fueled by an intense grief he didn’t understand.

This Valentine’s Day

That first Valentine’s Day is long past. Our baby is a grown man. He’s healthy and strong, and father of two of our adorable grandchildren. Even so, the acts of love performed by my husband 31 years ago are fresh and clear. When I look at my husband—a little grayer, a little balder, a little more wrinkled than he was 3 decades ago—I see a young father rocking a fussy baby and patting his tiny bottom. I see a young husband faithfully standing beside his hormonal, emotional wife. I see a quiet man who was tested by special needs parenting fire and proved true. I see the man I want to spend quiet Valentine’s Day evenings with as long as we both shall live.

Your Special Needs Valentine’s Day?

How has your spouse said “I love you” through special needs thick and thin? Give him or her a well-deserved shout out in the comment box. Happy Valentine’s Day!

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly with Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon. The first book in her cozy mystery series, See Jane Run!, features people with disabilities and will be released in June of 2022.

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Dr. Ignacio Ponseti: Hero to Special Needs Families

Dr. Ignacio Ponseti: Hero to Special Needs Families

by | Feb 10, 2014 | Books and Resources, Different Dream, Special Needs Parenting

Dr. Ignacio Ponseti: Hero to Special Needs Families

Dr. Ignacio Ponseti. Ever heard of him? I hadn’t until a month or two ago when our state public radio station ran a story about the life of this amazing doctor. He’s a shining example of a hero from the past who impacted the lives of countless children with special needs, specifically those born with clubfoot.

Dr. Ponseti’s Amazing Story

Dr. Ignacio Ponseti developed the Ponseti Method for treating clubfoot in infants. He perfected the non-surgical technique, which eliminated the need for a painful and often unsuccessful operation, during the decades he practiced at the University of Iowa Children’s Hospital. He retired in the 1980s, went back to school for an art degree, and immersed himself in painting.

But the rise of the internet in the early 1990s changed all that. Parents of children with club feet began reading about his method. Soon he was getting inquiries from all over the world, and he reopened his practice. He worked with children and trained practitioners around the world. He saw his last patient in the morning of the day he died in 2009. Shortly before lunch that day, a fatal stroke felled Ponseti at age 95.

Dr. Ponseti’s Amazing Legacy

Thanks to Ponseti’s work, generations of children born with clubfoot are now adults who walk and run and move with ease. All because of a treatment that required no surgery. The thought of how this man not only healed children, but also spared the emotional trauma and physical pain of surgery brings me to tears.

How I wish I’d had the chance to meet and thank him for his pioneering work and compassion for children. Though that’s not possible, I can encourage you to listen to the story, How Infants Learn & Remembering Dr. Ignacio Ponseti, at the IPR website. The Ponseti story begins about 20 minutes into the interview and is worth the wait.

Tell Your Story

Have you or has your child benefitted from the Ponseti Method? Did you meet him? If so, please tell your story in the comment box.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop-up box and the second at the bottom of this page.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly with Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon. The first book in her cozy mystery series, See Jane Run!, features people with disabilities and will be released in June of 2022.

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Celebrate Special Needs Parenting with a Look Back

Celebrate Special Needs Parenting with a Look Back

by | Feb 3, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

Celebrate Special Needs Parenting with a Look Back

Guest blogger Becky Hallberg knows the discouragement felt by parents raising kids with special needs. Especially during the winter when the days are cold, the nights are short, and cabin fever creates a perfect storm of hopelessness and isolation. Today, she offers the perfect antidote to discouragement: celebrating how far your child with special needs has come by taking a look back at the year just passed.

Special Needs Parents: Look Back

The start of a new year is often exciting. There are new plans to be made, new dreams to be fulfilled, and new goals to be achieved. But for those exact same reasons, the start of a new year can also be frightening.

Do you struggle as you look ahead to the new year, wondering how to help your child through the new plans that the year might hold? Are you struggling to even dream new dreams? Does life seem a little too overwhelming? And no doubt a new year will bring some new goals for your child—whether it’s IEP goals or personal goals that you would like to see your child achieve.

How do you juggle all of the “new” in the new year, without feeling completely overwhelmed?

Many times, we are reminded to look forward as we live life. There are plenty of quotes and Bible verses that remind us to move forward.

“I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.”–Philippians 3:14 NIV
“There are far, far better things ahead than any we leave behind.”–C.S. Lewis

For us, though, as parents of kids with special needs, life isn’t always “normal” or “typical.” Sometimes we have to forge our own path, or find our own way, especially at the start of a year when things can seem so uphill.

So, what do I recommend? Well, I recommend not doing the norm. As in so many other aspects of our lives, I recommend going against the grain.

At the start of this new year,
Pause.
Breathe.
Look Back.

Yes, you read that correctly:
LOOK BACK.

This is a wonderful time of year to look back at last year and see all the gains your child made.

How do you look back? Well, did you blog? Go back and read through some of your posts from last year at this time. Where were you and your family? How were you coping with life? How was your child coping with life? How were you dealing with your child? What worked? How can you build on all of that for the year ahead?

You didn’t blog? No problem. Are you on Facebook? Did you know that you can look back at different months and see your status updates from those months? Go to your personal page and you should see a timeline, of sorts, on the right-hand side. Click on 2013, and then go back through the months to recap how you managed.

No blog and no Facebook? Are you on any other social media? Can you go back and look through tweets or pins or posts you made? If not, then use this time to just take a trip down memory lane. How did your child’s doctor appointments go last year? Who was an encouragement to you as you shared about your child? What goals do you feel were not met last year? Which goals did your child wildly succeed at?

Take those thoughts—those memories—and consider them. Yes, there were struggles. Yes, there were frustrations. Yes, there were many bumps along the way.

But—moms, dads, caregivers, friends—you made it.

YOU MADE IT!

You were successful last year—and even the year before that. Do you know why?

Because all that really matters is that you and your loved one are here, on this earth, today. You’ve made it here. You’re going to make it through this year, too. If you’re here (at this blog) then you know what a great source of support this space can be.

The year ahead may be full of plans, dreams and goals that need fulfilled. But look back. See how far you’ve come. You can do this. No, you can do this.

Just pause, breathe, and look back. Then, slowly and cautiously, when you’re ready, step ahead.

Welcome to the new year, where you’re always welcome to travel at your own pace!

What Did You See?

What did your look back reveal? How far has your child come? Leave a comment so we can celebrate with you. And check out Becky’s blog, Sharing Redemption’s Stories.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop-up box and the second at the bottom of this page.

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Laugh and Live with Special Needs

Laugh and Live with Special Needs

by | Jan 31, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

Laugh and Live with Special Needs

Do you ever get so wrapped up in the challenges facing your child with special needs that you forget to laugh? Guest blogger Kimberly Drew is here with a post about how your child can help you laugh and live with special needs.

Laugh and Live with Special Needs

I have to say, one of the best things about being Abbey’s mom is getting to see her sense of humor. The things that make her laugh are so out of the ordinary. And she has THE BEST belly laugh!

For as long as I can remember, Abbey has laughed at mishaps. My husband and I like to call it her death and peril humor. We were turning the TV channel once and there was a person hanging onto the edge of a cliff with their feet dangling and screaming. I thought Abbey was going to pass out from laughing so hard. We quickly discovered that The Three Stooges is one of her favorite shows. Anytime someone gets bonked upside the head with a 2 x 4 she’s practically sliding off the couch in hysterics. If you are in danger, she is laughing about it.

At some point in the early years, our youth group kids discovered that pretending to knock each other over would set her off. They quickly made a point of doing it on purpose just to get her to laugh. Then she figured out she could walk up to them and barely touch them and they would pretend to fall backward. Such power!  Such fun! It was all well and good until she started grabbing other children by the clothes to pull them down, and then proceeded to crack up while they were crying. We put a quick stop to that one.

Abbey also loves loud noises. Perhaps it’s the hearing loss? When we got a new DVD player it came with a volume knob instead of a button, she learned to practice drive-by volume control. Very casually she walks past and then sneaks a hand out to turn the volume on the TV to its highest setting. Of course this gets quite a reaction out of us, so she laughs at us running to turn it down. She even thinks a screaming baby is hysterical. If you are in the grocery store with a child throwing a temper tantrum, you are Abbey’s best friend. She will find you, she will laugh at your child, and she will probably sit down on the floor while doing it because when she laughs that hard she can’t stand up anymore.

If all of that isn’t funny enough, now that she’s a big girl she likes to grab people’s phones and purses. It doesn’t matter if she doesn’t know you. If you’re not looking, she’ll take your purse and walk off with it over her shoulder. As soon as we catch her, she makes this face and throws it back. She even takes things OUT of people’s purses. It has finally gotten to the point where I just make a joke out of it to keep from being embarrassed. I tell people, “Oh, I taught her how to do that… she’s pretty good huh?”

I love this kid.  She reminds me to loosen up, and that sometimes living with special needs is worth laughing about!

What Helps You Laugh and Live?

What makes you laugh on your parenting journey? Your child? A movie or TV show? A family joke? Leave a comment to get us all laughing!

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop-up box and the second at the bottom of this page.

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Kimberly grew up and went to college in the small town of Upland, IN. She graduated from Taylor University with a degree in Elementary Education in 2002. While at TU, she married her college sweetheart and so began their adventure! Ryan and Kimberly have four amazing kids on earth (Abigail, Jayden, Ellie, and Cooper), and a baby boy waiting for them in heaven. Their daughter Abigail (Abbey) has multiple disabilities including cerebral palsy, a seizure disorder, hearing loss, microcephaly, and oral dysphagia. She is the inspiration behind Kimberly’s desire to write. In addition to being a stay-at-home mom, Kimberly has been serving alongside her husband in full time youth ministry for almost fourteen years. She enjoys working with the senior high girls, scrapbooking, reading, and music. You can visit Kimberly at her website, Promises and Perspective.

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The Jogger, Part 2

The Jogger, Part 2

by | Jan 28, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

The Jogger, Part 2

Welcome to Part 2 of guest blogger Laura Maikata’s post about coming to grips with the very premature birth of her son at 23 weeks. In Part 1 she described how seeing a jogger pushing a baby stroller upset her equilibrium while her baby was in NICU. Today, she finishes the story with by giving us a glimpse of what the stroller revealed.

The Jogger, Part 2

…My second glance changed the meaning of the entire scene. This wasn’t the baby I’d expected to see. This baby wasn’t picture perfect. She was medically fragile. I could just barely make it out as I zipped past, but it was clear. She was breathing through a nasal cannula. She was dependent on oxygen from a tube inserted into her nose and held in place by clear plastic tape on her cheeks. I took another glance backwards and saw the black oxygen tank, a boxy canvas bag, stealthily stored under the seat.

My image of the mother’s perfect life changed. I didn’t begrudge her slick jacket and state-of-the-art stroller. She wasn’t some ideal that could have been. She was, instead, a piece of my reality. She understood me more than I’d guessed. She’d probably been where I was going, the same NICU on the same third floor where hopes and nightmares collided.

This baby she was pushing wasn’t an image of what could have been. This baby is what could be. I choked back a tear.

It was time to look forward, not backward. I would never know that baby’s story, but in that moment of a backward glance, she gave me hope. We could make accommodations. We could find ways to make this new reality work.

If my son’s kidneys started working again but his lungs still failed him, we could go for runs. Maybe by spring when things thawed again, he’d be home. Maybe I’d have him in the stroller with me, oxygen tank stored underneath, and we would go look at the flowers on the trees together. And if he couldn’t see, he could still run with me and we’d feel the breeze together. Maybe someone would pass us on their way to the NICU, and maybe we’d pass a bit of hope forward. Maybe…

The NICU was a five month marathon for us. We rejoiced at reaching the finish line and bringing our son home. My one year old and I are now training for another run. Not a marathon, not yet. A 10k will do. His kicking legs give an excited thump-thump as his ankle-foot orthotics hit the canvas of the jogging stroller. Through thick glasses he watches the leaves spread shadows on the road before us. These thumping legs endure hours of physical therapy a week to start working right. These legs and their little boy owner are my new inspiration. When I get tired, I remember his race, and I find strength for the next mile. I believe he will run, even with weak lungs and weak muscles. We are not alone, neither of us. But if the past is any indication, we are capable of more than we thought possible. We know, because we’ve seen others run this race before us.

Pass It Forward

Did the hope Laura passed forward today touch your heart? Leave a comment for her or tell about how someone passed hope forward to you during your special needs parenting journey.

The Jogger, Part 1

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Laura Maikata lives in Grand Rapids, Michigan. She is mom to three fantastically unique children, the youngest of whom was born far too soon. Within months of finishing a MA in Teaching English to Speakers of Other Languages (TESOL), Laura found herself as a student, instead of teacher, of a different kind of foreign language—the language of medical professionals. Her son’s unexpected beginnings have forever shaped her professional and personal aspirations. She writes and speaks about issues of prematurity, including the difficult decision to resuscitate a child on the cusp of viability. Her blog can be found at momofa23weeker.blogspot.com.

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Sylvia Phillip’s Special Needs Resolution: Enjoy the Moment

Sylvia Phillip’s Special Needs Resolution: Enjoy the Moment

by | Jan 24, 2014 | Advocacy, Different Dream, Special Needs Parenting

Sylvia Phillip’s Special Needs Resolution: Enjoy the Moment

Welcome to the final installment of Different Dream’s 2014 special needs New Year’s Resolution series. Guest blogger Sylvia Phillips winds things up by looking to the future and at the moment in her list of resolutions.

My New Year’s Resolution

I have never before really thought about actually putting into writing a New Year resolution before. Mostly  because I didn’t want to obligate myself. I didn’t want to ever look back and see that I had failed to accomplish it. But this year I was invited to write down a resolution or two and decided that it’s time for me to turn over a new leaf!

I do hereby resolve to lighten up on myself and my husband. I tend to paralyze us from making decisions that could be the best thing ever because I analyze every minute detail. I over analyze and  scrutinize every little thing that could go wrong. I fret over all the bad things that might happen if we do such and such and such!
I want to stop fretting over, second guessing, and agonizing that maybe we should have made different decisions! I need to remind myself that we have always done the best we could with the resources the Lord has given us. We have never made a decision lightly, carelessly or out of selfishness. All our decisions have been informed ones, decided upon with love and concern for Bethany, for all our children.

Since it’s also been an ongoing  struggle for me to live in and enjoy the moment, I really want to slow down, search for and enjoy all the great little joyful moments that come our way. There really are a lot of them!  I must constantly be on vigil–fighting that destructive, pesky, though  thank goodness,  less intense version of the negative, doom and gloom, all or nothing, glass half empty kind of attitude that I inherited from my parents.

I really need to stop worrying about the future so much, too. We are fast approaching our retirement years. We want to make plans. We have ideas about where we want to live and how we’d like to spend some of our time, but these plans don’t have to written in stone just yet!!

Hmmm! Now that I’ve written that last resolution,  I’m wondering if it contradicts my resolution to work on my inability to make  decisions  and stick to them?

How About You?

Can you identify with Sylvia’s resolutions? Do you have suggestions about how to enjoy the moment? Leave them in the comment box.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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