Special needs gift exchange has meant something unusual to Lillian Flake since her daughter Catherine was born. In her guest post, Lillian describes the beauty and joy Catherine brings to the season and to her family.
One of the delights of the Christmas season is the tradition and social custom of the gift exchange. Some view the gift exchange as a cycle to give, to receive and to return. In our home we believe Christmas gifts are presents given to Jesus by the Wise Men.
I am particularly grateful this year as I reflect on the special needs gift exchange that transformed my home. Our daughter with special needs was born during the Christmas season just 14 years ago. Her early years were marked by medical challenges and later years discerned additional encounters with behavior and developmental delays.
Scripture reminds us in Psalm 127: 3-5a (AMP) to “Behold, children are a heritage and gift from the Lord, The fruit of the womb a reward. Like arrows in the hand of a warrior, so are the children of one’s youth. How blessed [happy and fortunate] is the man whose quiver is filled with them; “
Our Catherine validates this heritage through a special needs gift exchange in the following ways:
She gives us joy in the midst of sacrifice! Our time is often stretched with the extra care Catherine requires to complete certain tasks such as dressing herself and personal hygiene. She does not have the level of independence one would expect from a typical 14 year old. Yet the sacrifice comes through a window of joy because we have the peace of knowing she is progressing and drives through her trials like a warrior without complaining. She is not aware of the delay and finds joy in progress which gives us a peace to move alongside her.
We receive growth in life from the Fruits of Spirit! Our perspective on life has matured through a special window of patience and faith. During her periods of extreme challenge, we exercise a level of patience and really grateful for our faith. We often take things one day at time and try not to get ahead of her or ourselves. When the challenges are most difficult we take refuge and our reliance on Him has to sometimes come by the minute. This is a gift exchange that gives us time with our Savior.
We return our blessings and give to others! I know I am the happiest when I give of my time and talents to serve others. At the highlight of Catherine’s illness, we had constant support from friends, family and neighbors. There was always a helping hand. A few weeks ago, I had the opportunity to take a meal to a neighbor recovering from a serious illness and spent a couple of hours with their family. I wanted to bless them with a meal and in return I walked away with the blessing of precious time with individuals that warmed my heart in a special way.
As you close out this holiday period and relish the gifts of the season, remember to reflect in the coming year and try to find ways to give joy, receive growth and return blessings of happiness and fortune that are too great to measure!
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Lillian is a wife, mother, primary caregiver advocate, and scientist. She is the proud mom of two girls, the youngest with Down syndrome. Her youngest daughter had a heart defect and other health issues that required 92 days of hospitalization her first year of life. Lillian is a natural problem solver and understands the challenges every caregiver can face with the overwhelming tasks of managing hospitalizations, numerous doctor appointments, medications, insurance claims along with balancing the care of family. As a key component of her blog, Beyond the Waiting Room, she provides a peek into her personal challenges along with resources, tools, new technology and inspiration. In addition, she often speaks to groups in the medical field about CARE (Compassion, Action, Respect and Education) the cornerstone of treatment for all patients.
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Our first Christmas away from home was also my first one as a parent.
My husband and I lived in a small, remote town. Our town was surrounded by ranches. Cattle and sheep outnumbered people by the thousands. Taking our sick and struggling baby to the doctor required a 240 mile round trip, and winter travel could be treacherous. Traveling hundreds of miles to be with my parents for Christmas was out of the question. I thought celebrating Jesus’ birthday away from my parents and extended family would be horrible. I was wrong.
Our first Christmas away from home was hard. But it wasn’t horrible.
It wasn’t horrible because the people in our small town made room and invited us into their homes that Christmas. It wasn’t horrible because friends oohed and aahed over our baby and declared him a fighter. It wasn’t horrible because the doctor released our baby from one therapy and removed a piece of nasty hardware the therapy had required. It wasn’t horrible because though we were walking a parenting path different from what we had anticipated, we were still parents of an adorable baby boy.
Our first Christmas away from home was hard. It was also wonderful.
After months filled with our son’s surgeries, hospital stays, and doctor visits, while working full time, Christmas vacation was our first chance to reflect since we became parents. As I changed our baby’s diapers, I pictured Joseph and Mary caring for their baby in a small, remote village. As our car bumped down snow-packed gravel roads on the way to the doctor, I imagined how uncomfortable Mary’s donkey ride to Bethlehem must have been. As we passed herds of cattle and sheep feeding on hay bales in winter pastures, my nose wrinkled and my eyes watered thinking of the stench in the stable where Jesus was born. As I met my baby’s bright-eyed gaze, I could hear the shepherds oohing and aahing over the precious new life in the manger.
Our first Christmas away from home was hard. It was also humbling.
As a new mom who had nearly lost her newborn son, I ached for Mary’s future sorrow when she would watch her Son die. Having watched my baby endure great pain, I cringed for what Christ would experience on the cross. For the first time I understood the magnitude of the sacrifice by which God set sinners free. My heart was pierced with new understanding, and I was humbled by the sacrifice wrought for me. That year, for the first time, I celebrated our Savior’s birth under the shadow of the cross.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly 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.
Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.
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The holiday season can be hard for caregiving families. They can become a little less difficult by looking for pockets of joy.
Making every day a great Mother’s Day may seem unrealistic but guest blogger Heather Johnson’s story explains her commitment to the cause.
Checking your caregiving Christmas lists is one thing you can do to ease stress and manage expectations as the holiday draws closer. Guest blogger Kathy Guzzo suggests checking your caregiving Christmas lists in at least three ways.
December is filled with gathering with family, friends, and co-workers. It’s shopping in crowds, caroling, homemade cookies, the smell of fresh pine Christmas trees, twinkling lights and jolly gift exchanges. But what if jolly isn’t even close to how you’re feeling and everything seems more like chores than events to enjoy? What if life has you feeling alone, misunderstood, frustrated, and sad? Sometimes the caregiving life is hard, and frustrating, and exhausting, but a few small steps can change your outlook.
Life with family members who need extra attention is chaotic and draining. In the midst of serving them, you need to make yourself a priority by putting yourself on your gift list. Be intentional, for as little as fifteen minutes a day, and do something for you. Write down five to ten things that have brought joy to you in the past or have been relaxing. Things like hot cocoa in front of a fire a drive to see the Christmas lights, or time out with a friend or loved one. The more demanding our lives are, the more crucial “me time” becomes. In the long run, it benefits your loved ones as well.
Christmas is the season for lists, and those lists can be overwhelming. Instead of trying to check everything off your lists (other than your “me time” list), reduce them. Get rid of what’s not important and what’s not practical this year. Reassure yourself that it’s okay not to do everything. If you’re really ready for fun, eliminate lists all together and do life as it happens, without the constraints lists put on us.
The hustle, bustle, and busyness of December isn’t the reason for Christmas. The purpose of Christmas is simple–to celebrate the birthday of Jesus, the Messiah. He isn’t going to judge us for not feeling jolly, for wanting to hibernate until the holidays are over. He isn’t interested in how much we accomplish or how many activities we attend in December or anytime through out the year. He’s concerned with what our hearts need to make moments matter, and He’s going to love us through it.
What does He see on your heart’s wish list?
Peace?
Joy?
Comfort?
Hope?
Strength?
Courage?
He’s ready to give us the peace He promises, the joy of living, the hope of miracles, the strength He offers and much more. Things not found in the constant craziness magnified at Christmas, but available to everyone as gifts from the One whose birth we’re celebrating. By accepting the gifts of the heart He offers, you’ll be able to move from being not okay to better each day.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up at the bottom of this page.
Kathy Guzzo and her husband live in Northern Illinois and have 4 adult children. One of her daughters was diagnosed with lupus and Epstein Barr Replication as a young adult. Another began struggling with depression and OCD in her mid-twenties. She understands the need for her daughters to be able to make their own decisions regarding their health, but the nurturer in her sometimes has a hard time letting go. She desires to direct others to the peace and hope that God has abundantly available for them.
Guest blogger and experienced special needs dad Mark Arnold explains his 10 tips for a successful special needs vacation.
The holiday season can be hard for caregiving families. They can become a little less difficult by looking for pockets of joy.
Making every day a great Mother’s Day may seem unrealistic but guest blogger Heather Johnson’s story explains her commitment to the cause.
All hail the birth of Jesus!
The import of one word in that command electrified me as I worshipped with my home congregation during this Advent season. We were singing the new-to-me song, Arrival, and the lyrics grabbed my attention and my heart.
The word that zapped me was not baby, though the reality of Jesus coming to earth as an infant over 2000 years ago is shocking.
The word was not divine, though the concept of the Son of God living on earth in perfect relationship with His Father is equally shocking.
The word that sent a surge of energy and wonder through me was all.
All. As in everyone.
All included.
All present.
All expected.
All welcome.
All worshipping.
All. As in all hail the birth of Jesus. All–young and old, male and female, rich and poor, walking and wheeling, speaking and silent, hearing and deaf, sighted and blind, ill and well–gathered together to celebrate and proclaim the birth of our king.
Over and over, the lyrics of Arrival repeated the call that all hail the birth of Jesus. The words reminded me of Paul’s vision in Philippians 2:10–11 of how we all will one day respond to the name of Jesus: every knee should bow…and every tongue confess that Jesus Christ is Lord.
My heart rejoiced as I pictured the great throngs of believers singing together once every barrier to inclusive worship is broken. But my joy was tempered when I thought of how far churches still have to go before they can share the good news with those who live with disabilities in their own communities, much less around the world.
To read the rest of this post, visit the Joni and Friends blog.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up at the bottom of this page.
Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.
Guest blogger and experienced special needs dad Mark Arnold explains his 10 tips for a successful special needs vacation.
The holiday season can be hard for caregiving families. They can become a little less difficult by looking for pockets of joy.
Making every day a great Mother’s Day may seem unrealistic but guest blogger Heather Johnson’s story explains her commitment to the cause.
Santa, special needs and the single mom. Now that’s a combination too often overlooked during the Christmas season. Guest blogger Lesley Butterfield Harrop explains her complicated relationship with St. Nick in light of her son’s special needs and how she navigates the holidays as a single mom and caregiving parent.
Being a single mom for the past couple years after being married for the majority of my adult life, I have gained a new perspective on a lot of things that may seem rather ho ho, ho-hum to others. Tasks as simple as hiring a home maintenance technician are all of a sudden not so simple. New requirements have surfaced; I only allow someone I can trust in my home and the person must call ahead. Getting new brakes on my car is another example; I must go to a trustworthy garage, knowing that a single woman can seem to scream “overcharge me please, because I will never suspect it.”
But it was a surprise to me when I suddenly felt . . . different about Santa, special needs and the single mom?!
There are many reasons for the “it’s complicated” relationship I now have with ole’ St. Nick, but don’t judge just yet, because my reasons are as simple as safety, trust, and authenticity.
But before you think I have taken all the fun out of Christmas morning, let me explain how we do foster hope, magic, giving, and surprise during the holiday season. Unpacking Santa Claus has been a process for me and for my kids. We have really navigated this together and that journey has been really memorable. I don’t not do Santa, but I don’t do Santa in the commercial sense either. Instead, we focus on the three areas of meaning, miracles, and magic.
Regardless of what your particular family does to celebrate the holidays, it always helps to learn about the traditions of others and to take a look at our own! When we examine why we celebrate that way we do, we can often uncover core family values that have been passed down through generations, just like the stories of St. Nick!
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up at the bottom of this page.
Lesley Butterfield Harrop lives in the Appalachian mountains with her four children. She relishes being a mother and works to promote mindfulness and emotional intelligence within her own family. Lesley is a registered nurse by trade, with many years of experience in Community Health. She is also a freelance writer, sharing her thoughts and experiences of raising a child with special needs, navigating single motherhood after family trauma, and raising awareness of advocacy within her community.
Guest blogger and experienced special needs dad Mark Arnold explains his 10 tips for a successful special needs vacation.
The holiday season can be hard for caregiving families. They can become a little less difficult by looking for pockets of joy.
Making every day a great Mother’s Day may seem unrealistic but guest blogger Heather Johnson’s story explains her commitment to the cause.
Small things are worthy of great gratitude. I know this. You know this. Every parent raising a child with special needs knows this. Even so, I consistently ignore the small blessings God does provide and fixate on the big things I think He should provide.
Are you with me on this? Are you having a hard time coming up with much to be grateful for this Thanksgiving? If you are, I invite you to join in a new holiday tradition.
I call it thinking small.
Instead of wracking your brain for the big things God did for you and your loved ones in the past year, make a list of small things. It took me less than 5 minutes to come up with 10 small things I’m grateful for this Thanksgiving.
Here they are.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly 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.
Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.
Guest blogger and experienced special needs dad Mark Arnold explains his 10 tips for a successful special needs vacation.
The holiday season can be hard for caregiving families. They can become a little less difficult by looking for pockets of joy.
Making every day a great Mother’s Day may seem unrealistic but guest blogger Heather Johnson’s story explains her commitment to the cause.