I Didn’t Want a Different Dream

I Didn’t Want a Different Dream

I Didn’t Want a Different Dream

I didn’t want a different dream. How many of us have uttered those words after a child has been diagnosed with special needs and disabilities. Guest blogger Heather Johnson openly shares how she came to accept and embrace the different dream of her children’s lives.

I Didn’t Want a Different Dream

I didn’t want a different dream. I wanted my dream. Who, I wondered, finds themselves pregnant and hopes for a child born with brain damage or some other disability?  Not me.

So when the question on the adoption form asked, “Would you consider a special needs child?” 

I checked the “NO” box.

No. Absolutely not. Special needs wasn’t my dream. Special needs wasn’t my calling. I was quite certain.

I sent the videos of all three kids to the national expert in Fetal Alcohol Spectrum Disorders. He viewed them and shared his opinion that none of our kids had FASD—a concern of parents adopting children from Russia where there’s a high incidence of prenatal exposure to alcohol.

Our adoptions finalized, first in Russia and later in the U.S., we knew our three kids (Anna, Zach, and Nick, then six, four, and nineteen months) would have developmental delays. No child can spend time in an orphanage and not have some sort of delay. My husband and I were prepared. I was a clinical psychologist and a former elementary educator who knew how to help the developmentally delayed catch up. No problem. All within my wheelhouse.

But then, I began noticing things that didn’t look like just delays. They looked like possible brain damage. Getting lost in the house, over and over, despite repeated teaching. Learning numbers and letters in preschool, then suddenly looking at those same numbers and letters like she’d never seen them before. Then there were features so subtle that a video from many feet away wouldn’t show:  small head circumference, thin upper lip, no upper lip groove, lower set ears, wandering eye, neurosensory hearing loss (no auditory nerve), heart defect, fine motor problems, gross motor problems, speech & language problems, emotional problems, behavioral problems and more.

The multiple diagnoses painted a new picture than the one I had hoped for our family. Multiple therapies by multiple professionals over the next 20 years and perhaps for the rest of their lives would be our life. The hard reality? All three of our kids had “special needs”—multiple, permanent, invisible disabilities stemming from prenatal exposure to alcohol.

I didn’t sign up for this. God bless those who do—those who check the “YES” box of willingness when it comes to special needs. But me?

I knew I had a predisposition for depression and anxiety, inherited from my mother and her mother and who knows how far back. With healthy lifestyle choices and managing my stress, I lived a life free of medications. Then I found myself in a situation of no turning back. The unremittent stress of caring for three kids with so many special needs broke me.

One day, I found myself sitting on the kitchen floor hoping the hum of the running dishwasher would remove the ache from my head and my heart. All I felt was numb. When my husband came down from our bedroom and saw me sitting there, he asked me what was wrong. Without even thinking, I uttered two words.

“I’m depressed.”

Not the blues. Not the occasional bad day. But the overwhelming feeling that life is no longer worth living. Like you want to go to sleep and never, ever wake up. Like if you tried to walk you’d feel like your feet had been plunged into large buckets of wet cement and, once dried, you’d drag yourself around day after day. The gravitational pull of depression had done me in.

“Take me to the doctor. I can’t even drive,” I told him. He did. I needed him to physically support me as we walked into the office. I had no strength to support my own weight. Once in the examining room, the doctor came in and took one look at me. She knew. My countenance didn’t lie.

Thankfully, after two weeks on a prescribed antidepressant, I was able to mother again, to smile again. My normal effervescence and zeal had returned. But I was still bewildered. Why would God want me to mother not one, not two, but three kids—all with invisible disabilities that would require eleven different specialists, multiple surgeries, expensive medications? Why me, one with depression?

I don’t know the answers exactly. But I do know that sometimes our dreams need to shatter so new dreams can form. Sometimes our dreams of what we think is best is really just a glimmer of the better.

I can’t speak for you or for anyone else. We all walk our own walk and are trying to find our own way. But for me, coming to the end of myself and what I thought I could do with all my God-given gifts and capabilities taught me some things I might not have learned any other way.

I don’t have to have it all together to give love.

I don’t have to have it all together to receive love.

Embracing those with “special needs” helps us discover and embrace our own “special needs”.

Giving grace helps us accept grace.

We all need grace, don’t we?

We all need love.  Especially all our broken bits we try so hard to hold together.

Now I know, when I checked that “NO” box over two decades ago, that I needed exactly what I thought I didn’t want. How many other things, or people, come into our lives as blessings in disguise? 

Today, I’m not so quick to say “NO” to possibilities because even in the pain of disability, I’ve found greater love and meaning in life than I ever thought possible. And I have three amazing, grown kids who have a special place in their hearts for all who will let their special needs show.

 

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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Heather MacLaren Johnson lives near Wisconsin’s Lake Michigan shore with her husband of 25 years, 3 horses, 2 dogs, 2 barn cats, and a fish. She earned her B.S. in Education and her doctorate in Clinical Psychology before adopting 3 amazing kids from Russia, all now in their 20’s, all with life-long challenges stemming from prenatal exposure to alcohol (FASD). She is completing a memoir about her mother/daughter journey through hidden disabilities and mental illness. Heather’s essay about learning to ride horses at age 44 is included in Leslie Leyland Field’s The Wonder Years: 40 Women Over 40 on Aging, Faith, Beauty, and Strength(Kregel Publications). She has published devotional pieces for The Seed Company (Wycliffe Bible Translators Affiliate) You can learn more about Heather at her website www.truelifewithgod.com.

 

Author Jolene Philo

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Loving and Forgiving our Mothers this Mother’s Day

Loving and Forgiving our Mothers this Mother’s Day

Loving and Forgiving our Mothers this Mother’s Day

Different Dream welcomes Heather Johnson, a new guest blogger, this week. Heather’s story about the importance of loving and forgiving our mothers is timely as Mother’s Day approaches, and it comes with a tissue warning, too.

“Happy Mother’s Day, Mom!” 

“You sent me flowers!  They’re gorgeous! But you told me you weren’t going to send flowers because you bought me a garden bench!

“Yeah, I know!  But you’ve always said that flowers should be given to the living, not to the dead.”

We both laughed and began talking about her move from Ohio to Wisconsin where I’ve lived with my family. Within two weeks, Mom and I would be sitting on her new bench in the yard of her new house. Just two more weeks. Our hearts were full of anticipation.

The next morning, the phone rang. 

“Heather, it’s Bonnie.” My sister delivered the nightmarish news. “Mom’s dead.”

“What?”  I screamed my disbelief. My knees gave out. Collapsing on the top stair, I felt unable to breathe. My chest hurt from my wildly pounding heart. I wailed, “No!  No!  NO!”

As I sat rocking and sobbing with unspeakable grief, my sister gave me the facts.

Mom began feeling ill around 7 PM—nausea, vomiting, pain in her neck and shoulder, sweating. An ambulance transported her to the closest hospital. The emergency room doctor misdiagnosed her with the flu and sent her home. Just a few hours later, Mom died in her bed.

The new life I wanted with my mother shattered. She would never live in her new Wisconsin home. We would never sit on her new garden bench. She would never see her grandkids grow up. So many stolen dreams. But there was one dream that came true while she lived:  a warm relationship between the two of us which wasn’t always so. 

Mom had struggled with undiagnosed depression and anxiety while she raised her family. She was often short-tempered and bossy, spiteful and mean. She hurt me deeply too many times to count. In my 20’s, I wondered what would become of us. I didn’t know how to forgive such deep wounding until I began dealing with my own depression and anxiety. My own breakdown was the best thing that happened to me in terms of learning to love and forgive my mother. 

Over the years, I learned to set limits on Mom’s inappropriate behavior while also loving her unconditionally, at least in action. Slowly, both of our hearts softened toward each other. In the last five years of Mom’s life, we enjoyed the warm relationship we both had always wanted. It took time and effort. But isn’t loving and being loved back worth the work and the wait? Every Mother’s Day, I answer my own question.

Yes, Mom was worth the work and the wait.

So am I. So are you.

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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Heather MacLaren Johnson lives near Wisconsin’s Lake Michigan shore with her husband of 25 years, 3 horses, 2 dogs, 2 barn cats, and a fish. She earned her B.S. in Education and her doctorate in Clinical Psychology before adopting 3 amazing kids from Russia, all now in their 20’s, all with life-long challenges stemming from prenatal exposure to alcohol (FASD). She is completing a memoir about her mother/daughter journey through hidden disabilities and mental illness.

Heather’s essay about learning to ride horses at age 44 is included in Leslie Leyland Field’s The Wonder Years: 40 Women Over 40 on Aging, Faith, Beauty, and Strength (Kregel Publications). She has published devotional pieces for The Seed Company (Wycliffe Bible Translators Affiliate) You can learn more about Heather at her website www.truelifewithgod.com.

Author Jolene Philo

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Debbie Downer for a Fantastic Friday

Debbie Downer for a Fantastic Friday

Let Debbie Downer turn you into a Perky Polly on this Fantastic Friday.Though she’s a Gloomy Gus, Debbie Downer has a way of making people laugh. So did this personalized Debbie Downer list from March of 2012. Hopefully, it’ll turn you into a Perky Polly on this Fantastic Friday.

10.   Spring is way too early this year. See this post for further explanation.

Wah. Wah.

9.    It’s been cloudy and rainy. Which is poking holes in my summer drought theory.

Wah. Wah.

8.    I caught a cold on the Ides of March. Etu, immune system?

Wah. Wah.

7.    I didn’t take out stock in a tissue company before this cold started.

Wah. Wah.

6.     My recent upgrade to OS X Lion has not gone as smoothly as Apple promised.

Wah. Wah.

5.     iCloud is looming on the horizon.

Wah. Wah.

4.    The agent who promised she’d be in touch soon about my proposal still hasn’t.

Wah. Wah.

3.    I can now order from the Senior Citizen menu at I Hop.

Wah. Wah.

2.    No chocolate since Ash Wednesday.

Wah. Wah.

1.    Debbie Downer would be ashamed to post this list, but I’m not.

Wah. Wah.

How to Create a Realistic Caregiving Routine

How to Create a Realistic Caregiving Routine

How to Create a Realistic Caregiving Routine

Are you caring for a new baby, a child with special needs, a spouse with disabilities, or an aging parent? How would you describe your caregiving routine?

Stuck in a rut?
Anything to get by?
Fly by the seat of your pants?
One step above total chaos?
All of the above?

Yeah, I know how you feel. Because that’s what my routine felt like when my aging mother stayed with us for a month recently. One day, my normal, writing routine was there. The next day, Mom’s needs pulled the rug out from under that routine. She didn’t get her meds on schedule. Meals were late. Appointments were missed. My writing output dwindled to nothing. By the end of the first week, I was a basket case and our home felt one step away from total chaos. Things stayed that way until I created a routine to meet both our needs.

How To Create a Realistic Caregiving Routine

How did that routine come to be? Basically, by asking these questions:

  1. What does Mom need?
  2. What do I need?
  3. What has to get done?
  4. What can be abandoned?
  5. What requires help to be accomplished?
  6. Who can help accomplish it?

The answers to those questions provided a way to reorder my priorities and time use. It wasn’t easy…in fact, it was hard to say good-bye to some of the month’s writing goals. And it took a while before my husband truly understood how he could support the new routine and how much help Mom needed from both of us.

What’s Your Caregiving Routine?

Do you have a caregiving routine? How did it come into being? What would you like to change about your routine? What caregiving resources have you found useful? Share your wisdom 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.

Author Jolene Philo

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Debbie Downer for a Fantastic Friday

Top Ten Reasons I’m a Debbie Downer

debbie-downer

The past week and a half have been chock full of grandma duty and other family fun. So much fun, blogging is on the back burner. Therefore, for the next few days Gravel Road will reprise popular posts from the past. Today’s post first appeared on March 23, 2012. Enjoy!

This March we’ve had lots of good news. A grandchild on the way. Our Ohio kids moving closer to home in August. A sizable tax refund. Even so, I feel like Debbie Downer’s double today. Since I can’t stop the feeling, here are my top ten reasons for being a Debbie Downer when I should be Perky Polly:

10.   Spring is way too early this year. See this post for further explanation.

Wah. Wah.

 9.    It’s been cloudy and rainy. Which is poking holes in my summer drought theory.

Wah. Wah.

 8.    I caught a cold on the Ides of March. Etu, immune system?

Wah. Wah.

 7.    I didn’t take out stock in a tissue company before this cold started.

Wah. Wah.

 6.     My recent upgrade to OS X Lion has not gone as smoothly as Apple promised.

Wah. Wah.

 5.     iCloud is looming on the horizon.

Wah. Wah.

 4.    The agent who promised she’d be in touch soon about my proposal still hasn’t.

Wah. Wah.

  3.    I can now order from the Senior Citizen menu at I Hop.

Wah. Wah.

 2.    No chocolate since Ash Wednesday.

Wah. Wah.

  1.    Debbie Downer would be ashamed to post this list, but I’m not.

Wah. Wah.