My 4 Tips for Surviving a Special Needs Train Wreck

My 4 tips for surviving a special needs train wreck became part of my life decades ago. Our son, who’d had major corrective surgery at birth, was thriving.

Or so we thought.

Then he pulled away one night while I nursed him. His eyes rolled back in his head, and he quit breathing. I screamed for my husband, who improvised his own version of baby CPR.

It worked.

I ran for the phone to call for an ambulance. Minutes later we were on our way to Rapid City Regional Hospital where the problem was diagnosed. The next day a medical transport plane flew my son and me to the University of Nebraska Hospital in Omaha for more corrective surgery. The surgery was a success, his recovery slow, steady, his long term prognosis good.

Even so, I struggled.

Our son’s health setback gobsmacked me. My husband, my parents and siblings, my friends were hundreds of miles away. I was alone on my birthday. From my perspective, the situation felt unsurvivable.

Yet we survived.

Our young family (including our son who is now 40) endured several more complications that required unexpected hospital stays. Over time I developed these 4 ways to cope with the train wrecks that are part of raising a child with disabilities and special needs.

Tip #1: Note the Ways God Prepared You

Sending our baby off to surgery again was hard. Even so, I was a better prepared parent the second time around. During the stay at Rapid City Regional, my husband went home and packed my suitcase with clothes and items we knew made hospital stays easier. Also, the hospital was a familiar place. I knew nurses in the neonatal intensive care unit I left them a message, and several of them visited. Those details showed how God had prepared the way, that this hospital trip was part of His plan. Let the evidence of God’s sovereignty over your family’s train wreck do the same for you.

Tip #2: Find Blessings Along the Way

Several blessings surprised me as the days unfolded. As a nursing mother, I had a seat on the medical transport plane. In a pediatric wing, even in 1982, I was treated like royalty. I stayed in my son’s room. They provided toiletries, a shower, a breast pump, and meals at no cost. Because my basic needs were taken care of, I had energy and time to advocate and care for our son. When we as parents look for and are buoyed by blessings in hard times, our capacity to care for our children grows.

Tip #3: Ask for Prayer and Practical Help

The prayers of friends and families made a difference during our son’s many surgeries and recoveries. I learned to ask people to pray in specific ways, and they did. When I finally requested help for specific, practical needs, the people who responded revealed God at work. When you ask for practical help, God will make others the answers to your prayer. Can you think of a better way to cope when life is hard?

Tip #4: Tend to Your Needs

When there’s a special needs train wreck, our first priority as parents is to protect our kids. I spent days protecting our son after his surgery. Eventually he stabilized. The nurses provided good care, and I could tend to my own needs. But I felt guilty and selfish paying attention to myself instead of him. How can we avoid that trap? By tending to our needs when our kids are in good hands. Those hands may not be as capable as ours, but they are good enough for a short time. Take advantage of those good enough hands while we can. so we can take care of our needs and return refreshed, recharged, and able to survive the ride.

Written by Jolene Philo

Jolene Philo is the author of several books for the caregiving community. 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. See Jane Run!, the first book in the West River cozy mystery series was released in June of 2022.

Weeping may endure for a night, but joy cometh in the morning. Psalm 30:5

To me, there are no more comforting and hopeful words than those. That’s my verse.  A lot of people have a verse that just feels all their own, and that one has helped me up and held me up, has rocked me to sleep, and has carried me to morning many, many nights.  Of course, it isn’t solely my verse, it may very well be yours, too.  I think it brings solace to people in many stages and situations in life.

There is a certain amount of daily trauma that goes along with figuring the ins and outs of life for a child that is exceptional in one way or another.  At least, there is in our situation.

There is the  trauma I have felt as a mother waiting through an entire school day, just praying my child doesn’t wander from campus.  There's the trauma I’ve felt as a mother watching my son live life with a chronic illness and almost daily physical discomfort.  There’s the trauma I’ve felt as a mother watching many aspects of childhood just pass us right on by. I tend not to focus on the parts of life that are painful.  However, the mental and emotional toll is great.  For me, the worry is the hardest part to shake.  

I just want to do this right.  I want my children to live the very best life they can.  I think that’s what every parent desires.  So, those calls from school, the staring eyes at the grocery store when behaviors completely out of my childs control creep in, the setbacks at home--though they are mixed in with wonderful moments of thriving and progress and utter happiness, they are the ones that bring tears in the calm and stillness of night.  Those moments are the ones that flood my mind as I’m trying to sleep.  They seem to land on my heart and the weight can feel unbearable.  They lead me to reach for my phone and begin the reading and researching that I’ve spent countless nights engulfed in.  They lead me to strategize and come up with plans upon plans to help ease my child's pain and struggle through the tough spots.  

Then I think of my verse.  Weeping may endure for a night, but joy cometh in the morning.

Just recalling the words, stops me.  In the act of remembering that verse, I am suddenly brought back to knowing that I am not alone in this, and I don’t have to carry this on my heart alone. The heaviness lifts.  My children are not alone, either.  The hope and reassurance that my child has a beautiful and heaven-sent path ahead floods in.  It’s a cue to stop the wheels of worry and turn to my faith and hope instead.  

I’ve been down this road a night or two, and yes, joy always comes in the morning.  Nothing in the bright sunlight of a new day is ever as dire as it seems in the darkness of the night before.  The hope of a new day is real.  Even though our circumstance is still just as it was, there’s a clarity of mind and a different perspective that comes as we wake. 

When the night feels hopeless, it is a gift to me to be able to rest in the hope of the joy that is surely to come.

Written by BreAnn Tassone

BreAnn is a wife and mother to two beloved children.  Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate.  They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia.  She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry.  She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.

JUST KEEP SWIMMING

"Just keep swimming, just keep swimming." When many of us heard Dory say this in Finding Nemo, it became our life motto. As we work through the pressures of the day and are caring for the additional needs of our children, it can all seem overwhelming and we struggle to just take one more step.

This is partly why it drives so many of us crazy when we are told, "We could never do what you do." Most of us don't feel like we know what we are doing. We don't feel like we have extra parenting skills and we don't have this extra amount of insight or strength to care for our child's needs. We feel weak, exhausted and like we would rather do a back float than keep swimming.

I recently heard the following quote about parenting by Paul Tripp and it really resonated with me. "God knew our calling would be so huge and our weakness so deep that the only thing that would help us was Himself." Isaiah 40:28–29 speaks to this when it says, "Have you not heard? Have you never understood? The Lord is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of His understanding. He gives power to the weak and strength to the powerless."

This is so encouraging to me and hopefully will be to you. We can know that when our child is melting down in the grocery store, God is there. When we can't go to church because our child's immune system is too weak, God is there. When the doctor comes out to give us bad news, God is there. When we are too weak to ask Him for help, God is there.

It is okay to acknowledge our weakness. In fact, please do. You might encourage others in their walks. We can see the Apostle Paul do this in 2 Corinthians 12:9.  In previous verses, he shares how he had begged God to remove a "thorn in his flesh" three times. We don't know what this was but God tells him in verse nine, "My grace is all you need. My power works best in weakness." Paul goes on to say that he now boasts about his weakness so that the power of Christ can work through him. When we are weak, is when God's power is most evident in our lives and He will receive the most glory.

I want to close with this last thought by Paul Tripp, "God hasn't just sent you to do His work in the lives of your children; He will use the lives of your children to advance His work in you."

We want to hear from you! If you are the parent of a child with additional needs, how have you seen God's strength in your weakness during this journey?

GOD, WHERE ARE YOU?

Have you ever felt alone?  There is a peaceful type of feeling alone.  It is sort of like sitting on the bank of a mountain side stream just listening to it gently gurgle on by with the birds singing in the trees around you and you are quietly being refreshed.  That is not what I am talking about.  The type I am talking about is where you are sitting in the ocean with no land in sight.  You are in an old wooden row boat with no oars and a 40 foot high wave is about to sweep over you.  There is an utter hopelessness and despair.

Does that sound familiar? 

I was recently struck by the story of Gideon, one of the judges of Israel.  When we find Gideon in Judges 6, he was threshing grain in the bottom of a wine press.  This was not the typical way to thresh grain. It was more common to thresh it from the top of hill so the wind could blow away the chaff.  However, Gideon did not want to be spotted by the Midianites who had been persecuting Israel for seven years.  The Midianites had been so cruel that the Israelites had taken to hiding in the mountains, caves and other strongholds.

While Gideon was threshing the grain, an angel of the Lord sat down beside a tree where he was working and said, “Mighty hero, the Lord is with you!”  Let me be clear, at this point Gideon was not a might hero.  In his own words, he was the weakest in the whole tribe of Manasseh and the least of his entire family. Gideon replied to the angel, “Sir, if the Lord is with us? Why has all this happened to us? And where are all the miracles our ancestors told us about?  Didn’t they say, ‘The Lord brought us up out of Egypt’? But now the Lord has abandoned us and handed us over to the Midianites.” The angel of the Lord then told Gideon that he was to rescue Israel from the Midianites. God went on to use Gideon to free Israel from the persecution of the Midianites.

Does any of this resonate with you like it did me?  Have you ever wondered why all this is happening to your child?  Or maybe you have seen God bring healing to the children of other families and wonder why He hasn’t done a miracle for your family.  You hear other believers talk about a closeness with God, meanwhile you feel abandoned and betrayed by Him. Then you struggle with guilt related to that.  I want you to be encouraged.  Just as God saw Israel during these seven years of suffering, God knows your pain, hears you and has not abandoned you.

Maybe you feel ill equipped for this journey and are just trying to get from one moment to the next.  I want to leave you with the words the angel of the Lord gave Gideon, “Mighty hero, the Lord is with you!” You are indeed a hero to your child and to your family.  God is with you, even when it doesn’t feel like it, even when that ocean wave is crashing over you and there’s no help in sight, and He is using you in ways greater than you will ever know.

Do you want to learn more about Gideon and how God used him to free Israel from the persecution of the Midianites?  You can check it out for yourself in Judges 6. We would love to know what you think!