This is life, our life!

Since beginning this blog, I've spent many hours researching and thinking about ways a marriage relationship can withstand the struggles of parenting a special needs child. Through talking with other couples who are in similar situations, I found there seems to be an underlying theme among all of them. It is simple yet complicated, stressful but filled with adventures, chaotic yet peaceful, but most of all worth every struggle. This is life, our life!


Life is beautiful. The very moment a new baby takes a breath brings the sound of a cry making it known to the world the adventure of life has begun. As a parent, you are about to embark on a journey like no other. It can be likened to riding a roller coaster at an amusement park. As you wait in line, the anxious and fearful feeling seems to dominate your every thought. As you approach the front of the line, you begin to have second thoughts about whether you even want to go on the ride. Your friends and family are encouraging (and pressuring) you to get on the ride. "It's not that bad. It will be over before you know it. Come on, we can't leave you behind." With trepidation, you concede and get on the ride. Your heart is pounding out of your chest as the seat belt locks you in. There is no turning back now! The countdown begins, 3..2..1 and the ride shoots you out of the gate. Your initial thought is, "This isn't too bad," Then you see the first climb. "Get me off of this ride! AHHHHHHHHHH"

For my husband and I, the first big climb began as we heard the doctor say, "Your son has Spastic Quad Cerebral Palsy. Based on his condition, I don't feel that he will be able to walk. You will need to define what his normal will be." The roller coaster ride has had many more climbs but each time it has become a little less scary. My anxious feeling has been replaced with excitement for what we will see when we reach the top. As time has gone on, I learned through the difficult times we can find joy. Looking for joy in the small things can bring hope to a troubled marriage. 

As husband and wives, we need to find a way to be sitting next to each other on the roller coaster ride and making the climb together. Throughout the journey, you may find each other sitting on different rows of the roller coaster, sometimes even on a different track all together. Writing this blog has allowed me to reflect upon how my husband and I have dealt with our life since adopting Joshua. There were multiple times we found ourselves on different tracks of the roller coaster. Instead of me trying to describe our ride, my husband wrote this poem that nicely sums up some of our experiences. We've had our ups and downs as a couple but overtime, we have learned what really matters most. It is to support each other which in return will help strengthen the bond with our children. Our life is crazy with five kids, work and school but this is life, our life.

                Our Gift

A tiny gift, he was already born
Confusion and anger, to us he was sworn
A reluctant mother, seeing her noble son
Would not release him, for "he was the one"

She knew of his worth and wanted to his love
While his parents afar gave the agency a shove
We have not yet met the woman so brave
That knew with her, he could not stay

The story of his beginning came to be told
Of complications, drugs; he was six weeks old
Breath escaped him for a time, but he persevered
Angels came to his aide, grandparents near

At seven weeks, a miniature man
Curled up in our arms, and into our van
We fed him and clothed him, changing him oft
More food came up and we thought somethings was off

Doctors poked and looked and reports were read
Cerebral palsy, stiff limbs, and unusually small head
Would he walk, think, grow or speak?
All we knew was that he looked so weak

Hour after hour, day after day, week after week
We held him, slept little, wiped spit up, and he leaked
Father threw himself into work and saw the family less
Mother took on the challenge of everyone, doing her best

The couple's discussions often about him
Were filled with questions and how best to stretch his limbs
Doctors were skeptical but sisters were kind
When would our little man show us a sign?

We knew he was tenacious, stubborn, and loud
We all smelled of spit up, but of him we were proud
He scooted, then rolled, then clung onto all
Of course with CP, he soon learned how to fall

We rejoiced when he stepped, and loved his laugh
But little man was still in our bed taking up half
Father often slept in another room
Using this arrangement as an excuse

The couple talked less and lived their lives
The working husband and crusading wife

At times, they came together to plan on how
To improve life for all five children, growing faster now

Though there was often depression and blame, miscommunication
We continued to work towards our family's salvation
Talking and listening more, finding joy in each new dilemma
Celebrating each other, including God more than eva

Josh is now four, walking, falling, smashing, and washing TV
Talking up a storm, adding apps to phones and eating
He is strong and so very smart, continuing to exceed
Limits, expectations, and growing like a weed

We still often wonder what his life will be like
We wonder the same about each of our tykes
As a couple we hope to continue to bind
Each others' wounds, and more joy to find

We are in this together, whatever this is
We marvel that even the bad times we miss
Because we have watched each others' strengths and character
Blossom and present themselves, taking on whatever

We have learned that we know less
We have learned that life's a mess
We can always hope and work to be better
And we know that it must be together.

Thank God for our children.
Thank God for CP.
Thank God for each other
And what we will be.

Retreat-at-Home Date Night

It is important to focus on the good that comes from living life to the fullest. Invite some of your friends over to enjoy a night of fun by playing the game of "Life." How many blue or pink stick kids will you add to your car? To make it even a better night, pull out the bowls and spoons and enjoy some Life cereal. It is important to find balance as a couple. Even though the roller coaster ride can be crazy, adding the element of spending fun times with your friends can enhance your relationship with each other. Remember to not laugh to loud to wake the sleeping kids! 

Never Giving Up

Resilience comes as we focus on the good that can result from never giving up.

(My son at age 2 walking with his new ankle foot orthodics.)

My son was diagnosed with Spastic Quad Cerebral Palsy when he was a year old. The doctors told us that he would not “amount to much” and my husband and I would be taking care of him for the rest of our lives. I remember walking to the car in a daze trying to grasp what that meant for my son. As I drove out of the parking lot with tears streaming down my face, the realization came that my family would define a “new normal.” Although it was overwhelming to think about the future, I was willing to do anything to ensure he would receive the best possible care.

Over the course of the next year and through lots of physical therapy, my son began to reach milestones that were once a dream. The first step he took showed resilience beyond what anyone could have imagined. The Webster dictionary defines resilience as, “the ability to become strong, healthy, or successful again after something bad happens.” When Joshua was 3 years old, we were leaving my brother’s house after a family gathering. As he stepped down off the porch, Josh fell flat on his face. The motherly instinct was to run and “save him.” Before I could get there, he cautiously struggled to get back on his feet and stepped back onto the porch to try again. As I stood there and watched him, my heart flooded with pure love for his determination and reminded me that resilience comes as we focus on the good that can result from not giving up.

In marriage relationships, how can we focus on the good that comes from not giving up? There will be times in your relationship where it feels like the ground has become your best friend. No matter how hard you try to get up, “you just keep falling.” Whether it be communication, financial, or other personal or relationship related struggles, the ability to learn how to come to the rescue of your spouse and build trust is the beauty of true companionship.

Now, if only it were that easy to look for the good in each other when you’re in the midst of the struggle. The renowned marriage expert, John Gottman, has studied marital relationships for over 40 years. During this time, his focus on marriage stability and divorce prediction has earned him numerous awards. In the following clip, he emphasizes the importance of building trust with your spouse in the little moments.

As we seek to find the little moments in our relationships to build trust, resilience from the face plants will be quicker and the good will result from never giving up.

"The best proof of love is TRUST."

Stay-at-Home-Date 

It's time to become one with the ground together as a couple in a positive way. Find a place in your home, outside or at a nearby park to have a romantic picnic. Bring some of your favorite finger foods that you can feed each other. During this time, discuss ways to learn how to build trust in your relationship. 

Following are some fun picnic ideas and some activities you can do to build trust in your relationship. Click on the links to be directed to a new page.

97 Best Picnic Ideas

Romantic Picnic Ideas

Romantic Picnic Ideas II

Building games for a winning marriage

Trust Building Exercises

S'more Loving

Gather the sleeping bags, pillows and lanterns. It’s time for an in home camping trip. What better fun could there be than to relive some of your childhood memories and create a homemade tent from the kitchen chairs and extra-large blankets. While working together to build your shelter for the night, share some of your most cherished childhood memories and why they are important to you. After preparing your “shelter” for the night, it’s time to make your tin foil dinners. The possibilities are endless from Chicken Fajitas to Meatball Subs. While your dinner cooks in the “fire” aka as the oven, it’s time to create some fire of your own. Grab a pen and paper and write five words that describe what your attracted you to your spouse. This is a time to recall experiences and feelings that brought the two of you together.

What a better way to end the night than by roasting marshmallows for s’mores. The relationship of a husband and wife can be compared to the marshmallow. On the outside, the fire makes the marshmallow hard and sometimes burnt. When you push it down between two graham crackers, it allows the hard outside to crack and the gooey part of the marshmallow flows out. Parenting a special needs child feels like sometimes you’re the marshmallow in the fire. It starts out soft but as the heat penetrates the marshmallow it becomes hard. There will be times where one or both of the spouses will have experiences that cause them to feel overwhelmed or preoccupied. This can result in the lack of attention given to each other. Studies have shown the divorce rate when parenting special need kids to be as high as 70%. This statistic is discouraging particularly when you're in the heat of the fire and want desperately to find relief. It is times like this, couples need to find a way to break the barrier and focus on finding peace among each other. This isn't going to be an easy process but when the fire dies down, you will be able to look back and see how supporting each other allowed the gooey part of the marshmallow to seep out. 

At the end of the night, while snuggling in your makeshift tent, discuss ways to identify (individually and as a couple), what specific triggers begin to harden your “shells” and discuss ways to come together to keep your marriage gooey like the marshmallow center and find peace in what brought you together.

“Coming together is a beginning; keeping together is progress; working together is success”

-Henry Ford

Tin Foil Dinner Recipe Idea

Ingredients

• 1/2 lb hamburger
• 1/2 lb sausage
• 1/4 cup dry bread crumbs
• 1/2 teaspoon pepper
• 2 Tablespoon dehydrated onion
• 2 eggs, lightly beaten
• 2 Tablespoon Parmesan cheese
• 1 teaspoon basil
• 1/2 teaspoon parsley
• 2 cloves garlic, minced
• 1 teaspoon salt
• 1 jar of your favorite spaghetti sauce
• rolls

Instructions

1. Line a large cookie sheet with tin foil and lightly mist with non-stick spray.
2. Combine the first 11 ingredients in a large bowl. Mix until combined. Form into 1 inch balls (I use a small cookie scoop) rolling between your hands to form circles. Place onto your prepared tray.
3. Broil until your meatballs are just lightly browned.
4. AT HOME COOKING: Place your meatballs in a saucepan. Cover with your favorite spaghetti sauce and simmer for 30 minutes. Place onto the rolls and enjoy.
5. IF FREEZING FOR LATER USE: Remove from the oven and when your tray has cooled place in the freezer for twenty minutes. Place your meatballs in a freezer bag and store.
6. CAMPING: Create four rectangles of heavy duty foil. Fold up the sides creating a 1 inch rim. Spray your containers with cooking spray and add a bit of sauce to each. Top with your meatballs. Fold up the sides to create your packet. Place your packets onto prepared coals. Cook for 30 minutes making sure to turn a few times.

(Courtesy of: One Sweet Appetite)

Follow the Yellow Brick Road to Mindfulness

Imagine you’re skipping along the yellow brick road singing, “Cell phones, IPods, Work, Appointments, Kids Oh My! Cell phones, IPods, Work, Appointments, Kids Oh My! Cell phones, IPods, Work, Appointments, Kids Oh My!” Do you feel overwhelmed at the prospect of what is on you’re to do list for the day? Did you notice the flowers that lined the path or take notice of who is skipping alongside of you? Or do your eyes remain fixed on what lies ahead? How many times have you thought to yourself, “It will be better when…?  “My spouse and I will be happier when …? I wish I had time to…”

Simply put, life is BUSY! Trying to fulfill all your obligations and meet the needs of others, particularly your special needs child, can wear you down to the point of exhaustion. Often, it feels like there isn’t time to enjoy life because you are too busy living it. The question then arises, how can we skip down the yellow brick road accomplishing our daily tasks while living in the moment and enjoying the journey? More importantly, how can we enjoy the journey of life walking alongside our spouses?

Recently, I was reading about the practice of mindfulness. Psychology Today defines mindfulness as, “A state of active, open attention on the present. When you’re mindful, you observe your thoughts and feelings from a distance, without judging them for good or bad. Instead of letting life pass you by, mindfulness means living in the moment and awakening to experience.” In simple terms, it is how we cultivate awareness of the mind and body and live in the here and now.

The distractions of today can make it difficult to live in the here and now. What specific distractions in your relationship with your spouse make it more difficult to live and enjoy the moment? Imagine, you are given a day to spend with your spouse without distractions. The kids are well cared for and the money tree grew enough “green stuff” for endless opportunities. What would you choose to do with your spouse? How easy would it be for you to leave behind the worries of daily life and solely focus on each other?

When Scott and Amanda* met in their early twenties, the world stopped around them. They understood the art of mindfulness and relished in enjoying every moment of life as a newly married couple. They could stop and enjoy the flowers along the path of the yellow brick road. Five years into their marriage, they had a son who was diagnosed with special needs. Over time, the couple lost the ability to find joy in everyday living. Slowly, they drifted apart and began to focus more on the busyness of life and less on each other. Scott ended up having an affair, seeking attention from anyone who would validate the stress in his life. Instead of taking the time to stop and focus on the threats to their relationship in the moment, they drifted further apart. Two years later, Scott and Amanda are relearning how to cultivate awareness individually and as a couple. Slowly, they are beginning to not only see the flowers along the path but to actually stop and smell them. The journey has been hard but it's taught them that it is possible to redefine their relationship and focus the here and now.

(*Names have been changed )

It is by learning to embrace your fears that you find your heart.

Dash-into-the-Night Date: 

What better way to connect and live in the moment than by attending a yoga class together. This can be done either at a studio or in the comfort of your own home. If you haven't even done yoga, it is an opportunity to connect with your inner-self and your spouse. After attending yoga, discuss as a couple what specific ways becoming one with each other can benefit living in the here and now. Select one area of focus to work on for the next week to change the busyness of life into pure enjoyment in the moment. End the date with a yummy frozen yogurt!