Families with a child affected by a mental/neurological disorder often live a chaotic and stress filled existence. Often, the struggle is invisible to the public. Unknown to even neighbors, a series of chronic storms erupt inside the home. Furthermore, stigmas make seeking support challenging. Parents struggle to give time to all of their children as well as their marriage Siblings may resent the extra attention to the affected child. It is all too easy for fracture to take place and the results to each member can have short and long term consequences.
You want to help but how do you do it? Here is a list of suggestions that can get you started.
Food: It connects us. But good news-you don’t have to be a gourmet chef to share it. How about ordering a pizza? One of the best dinners shared with us was ham and cheese sliders that we could warm up and grab quickly on our way to the hospital. Truthfully, anything that offers a quick bit of nutrition and satisfies, feeds the stomach and the soul. Always make sure you are aware of any food restrictions (especially true if the child has a sensory issue.)
Gift cards. Medical bills quickly consume a budget. Sure, there are payment plans but when you have at least a few going, there is not much left for any extras. In addition, schedules can become packed with doctors appointments and unexpected health related crises. Furthermore, siblings often feel left behind as time and money are consumed quickly. Special family outings often disappear. Gift cards for a movie theater, McDonalds, and other “extras” are an appreciated treat. Gas cards are also beneficial.
Offer to take siblings for a few hours. Respite is necessary for all family members. Routines often become interrupted, noise levels escalate, conflict can be frequent. These factors contribute to a stressful environments. Can you offer your home as a quiet place of refuge? Renting a movie, supplying snacks, sharing skills, or even letting kids play on their electronic devices or read in a peaceful place is a gift. If you are more adventurous, try a park, ice skating or the beach.
Care for the affected child: This suggestion requires a familiarity with the child and their needs. Sometimes a new environment can be helpful. Other times, it may create further anxiety. If you can provide this option, it sends an affirming message to the child that they are capable of being loved on by those outside their family. To the parents, it sends an empathetic message.
Put together a gift basket: Parents naturally tend to invest their time, energy, and resources toward the health of their child. As a result, they are left “empty.” This affects their own emotional and physical well-being. It also leads to strained marriages. How about a gift basket filled with bubble bath, hand lotion, special treats, rental movie gift card, coffee shop gift card, teas, bottle of wine? Put on your creative hat and see what happens!
Share resources. Let’s face it, receiving money from others can be awkward. Yet, it may be the very thing that would help alleviate stress. Could you ask to pay a bill? Could you pay for a sitter? There are creative ways to share financially while not taking away dignity or creating an uncomfortable situation.
When a child fights a physical illness, it often leads to a rally of support. The visible symptoms communicate the urgency of support to others. Unfortunately, mental illness, addiction, neurological disorders do not always present in a way that draws attention. The family struggles silently. When we are aware of others’ needs, we become better advocates and neighbors. And we are transformed in the process.
Words barely express the ways your actions have breathed life into my daughter. Movement into unknown territory involves risks. Your willingness to do that does not go unnoticed. Connecting with her isn’t easy. I know that. As you know, she’s not one of those outgoing social butterfly types. She’s an observer. In addition, her mental illness, makes identifying and controlling emotions challenging. She realizes the impact of her actions and words, yet, managing the whirlwind within becomes difficult at times.
By inviting her into your space, you moved beyond the walls of fear that easily keep us from engaging. with those who seem different from ourselves. Sometimes the fears are rooted in real experiences,yet, each of us has our own narrative. You have demonstrated to others that learning how to give and receive support is a significant life skill. There is no “us” and “them.” Everyone faces their own struggles.
We, her parents, are walking in unfamiliar territory. We have gleaned much about the way our society values others as well as the assumptions aimed toward families who don’t capture the “All American Dream.” Stigmas and fear feed the perceptions of parents whose children’s disabilities appear “fixable.” When behavioral and emotional issues manifest themselves, the journey becomes a lonely one for the whole family.
You have witnessed the storm of emotions blow out of her with a breath-taking pace. Out of her mouth, harsh words may have been hurled in your direction. Yet, you saw that she was more than those utterances. The open invitation to your home created a refuge and gave her purpose. How could you have known that her desire to conquer an 8 hour day of cognitive and emotional difficulties was rooted in the reward of spending time with your family? Thank you for loving her unconditionally.
To those unsung heroes at school, you are appreciated more than you can grasp. Her struggles impact our whole family. As parents, we transport, cajole, and encourage her to embrace the school day. But the reality is that some days, we all feel wiped out my 9:00 am.
How do you fight the clutches of anxiety/depression which attempt to pull your child back into bed? Some days, the nuances of battle were apparent. She arrived with eyes, swollen and puffy. But you welcomed her nonetheless and let her sit. Sometimes, you even provoked a smile and a laugh. You far exceed your job expectations.
Thank you for loving my child. Whether you welcomed her with a simple gesture or invested time with her, your kindness reaps a harvest in her soul.
This post originally appeared here: https://themighty.com/2017/05/a-letter-of-gratitude-for-loving-my-child/
Without warning, I found my mental state rapidly shifting. For one week in late March, it seemed to spin out of my control. Increasing anxiety gripped my soul, its force building stronger each day. Suddenly, the anxiety transformed into a deep depression. Never had I felt such a heaviness pressing upon me. After a few days, the weight lifted.
Making sense of it left me pondering: Why now? I had been treated for anxiety and depression for the last 15 years. For most of that period, my moods remained stable. Any shifts lasted only a few days. Through medication and therapy, I learned to manage my illnesses. However, this time, I felt blindsided; the symptoms appeared unexpectedly. Even though I was exhausted, the experience left me puzzled.
Read the whole post at http://mudroomblog.com/soul-care-unexpected-descent-depression/
Words barely express the ways your actions have breathed life into my daughter.
Movement into unknown territory involves risks. Your willingness to do that does not go unnoticed. As you know, she’s not one of those outgoing social butterfly types. She’s an observer. In addition, her mental illness makes identifying and controlling emotions challenging. She realizes the impact of her actions and words, yet, managing the whirlwind within becomes difficult at times.
By inviting her into your space, you moved beyond the walls of fear that easily keep us from engaging with those who seem different from ourselves. Sometimes the fears are rooted in real experiences, yet, each of us has our own narrative. You have demonstrated to others that learning how to give and receive support is a significant life skill. There is no “us” and “them.” Everyone faces their own struggles. Read more at:
” Do you want to be made well?”
The question posed to the man in John 5:5-9 appears rhetorical.
We do not know if he was born with a disability or his physical limitations are the result of an injury. Regardless, he is accustomed to his place near the pool of Bethesda. He’s resided in that spot for 38 years! He knows the perceptions of how he got there. Surely his parents must have sinned greatly in order for God’s blessing to be withheld. The whispers and stares are not lost on him. He watches those whom wear the badge of “blessed” murmur as they pass his way daily. It’s not an abundant life. But it is what he has accepted.
And then he encounters Jesus. He wasn’t even seeking Him. Yet, Jesus approaches the man.
Who, would not embrace the offer to be healed? After all, multitudes clamored to be healed through Jesus’ mysterious yet miraculous touch.
What appears to be a simple question actually carries with it a complex web of implications.
Three years ago, my son became sick. Originally struggling with a chronic upset stomach, epilepsy presented suddenly. Our lives became caught up in a whirlwind of questioning, troubleshooting and despair. Thankfully, God’s mercies held us tight during that year. However, reeling out of that trauma, my son struggled with being made well. As I walked with him in that journey, I reflected on moments in my own life when I too feared “being well,” The voices spoken both audibly and echoing in our heads, appear to hold power and keep us from breaking free.
Restoration changes our perceived identity
Is it no wonder that the man in John 5 became accustomed to his socially appointed lot in life? We are creatures of habit-even if the routine subtly and deceptively keeps us from being restored-fully whole in communion with God..
My son’s visit to Mayo Clinic included a visit with a psychologist who only sees adolescents with chronic illnesses. Why? Because narrowing one’s identity to fit around the illness becomes tempting. My son was exhorted to not let his epilepsy define him.
Our own identities may be informed by life changing parts of our narratives, illness, injury,sinful actions committed against us or sinful areas with which we struggle. Regardless, Jesus has promised us abundant life Healing may or may not happen here on Earth but restoration is always possible.
How will he recognize his purpose now? What will it take for him to break through the perception that he is no longer dependent on others for basic needs? How will he establish autonomy?
Restoration places us out of our comfort zone; even if the previous zone of habitation limited us. As my son returned to High School for his Junior year, following the previous year of illness, I anticipated that he would welcome the fresh start. However, anxiety filled him as he began. I felt completely blindsided. Why would apprehension fill his heart?
He had become accustomed to his lot. Sympathetic teachers. A force of people supporting him. Extra time at home.
As my writer friend Emily Conrad wrote in response to one of my posts, “I finally got something I’ve been longing for for years and now I find myself on the other side of a situation I had grown comfortable with. I had accepted it. And now that Jesus spoke and I’m moving on, I feel a little wobbly on these legs.” Transitioning to a posture of empowerment demands walking forward. Even if the ground feels shaky at first.
Restoration expands our view of God’s character. Believe it or not, grasping who God is can cause one to feel a bit unsettled. Humanity has always yearned for the predictable. Comfort is found in explanation. Uncertainty sends our hearts and minds stirring. We simply find difficulty in grasping God’s words through Isaiah”
“For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the Lord. Isaiah 55:8-9
Doesn’t it seem easier in a chronic situation to adapt and accept that God is not capable of Forgiveness? Mercy? Delivery? Healing?
“Do you want to be made well?”
Jesus heals the man in a way that the man never expected. Not in the pool but simply out of Jesus’ authoritative word: “Rise. take up your pallet and walk.”
Later, Jesus finds the man to complete the process of restoration. “Go and sin no more.”
daily rhythm of life is altered.
Walking forward demands trusting our sovereign God in our new steps. Acknowledging that we can balance on one leg as we move the other in front in order to stride toward the longed for but unfamiliar horizon.
It’s possible. because of Jesus
Jesus, who desires my wholeness so much to encounter me when I wasn’t looking for restoration.
Jesus, who believes that I am so much more than what I think of myself.
What must you surrender to Jesus so that you might be “made well?”
Sometimes, life leaves your brain full and your mouth empty.
A season of life two years ago encompassed one of those times for me. The thing is-these seasons don’t just end with a nice and tidy resolution. They don’t leave us with an instant epiphany of profound theological insight. Rather, we are left with a reminder-:spiritual, physical, emotional- that we are humans wrestling with the realities of living in a place of in-between.
It is not yet Heaven.
The days of December 2013 quickly filled up with preparations for Christmas as well as doctor’s appointments. My eldest son became increasingly ill. A periodic problem with an upset stomach evolved into a daily issue. Watching your child feeling sick packs a punch to the stomach and the heart. The immediate desire is to fix it.
Yet, beginning in October, we sought an answer from many physicians and no one could fix it. How can that happen? We live near Chicago; a mecca of renowned and state-of-the art medical centers. A gold mine of wisdom on the complexities of the human body. Yet, each visit to a different specialist yielded more questions. We just wanted answers.
Emergency room doctors ruled out some things But nothing made him better. Daily, he made the trek to school with virtually nothing in his stomach except a bit of protein shake. Sometimes, he couldn’t gather the stamina to make it to school. My husband and I worried. The school pressured. The bills mounted.
We prayed. Friends prayed. Strangers prayed. But there were no answers.
“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6 (NIV).
Embracing the peace of Christ in the midst of uncertainty challenged me.
Finally, after many tests and procedures, a diagnosis was reached. Whew! Finally a name and a course of treatment. Finally, an answer! Medicine would bring healing and resolve the problem. I grabbed hold of the answer and felt a sense of relief; control; no uncertainty. How easy is it to acknowledge the “peace that passes all understanding” when circumstances line up according to our expectations?
But would that peace permeate if the circumstances change? The events of the next day confronted me with that question.
Following dinner, upon preparing to study for finals, he fell to the couch and began to seize. Never having witnessed a seizure, it was the most terrifying moment of my life. The limp look of his body; the lifeless look in his eyes, will remain etched in my mind for a long time. Those five minutes led me to a profound realization as my mind grasped to acknowledge the surreal reality spinning around me: there are many things I can control-but death may not be one of them.
Fortunately, he came out of the seizure, was quickly rushed to the hospital, and the scans came out clear. But, more questions arose...and yet no answers. In my frustration, I hesitated to let go of what I thought to be a resolution. I didn’t want to believe that our lives were once more catapulted into the abyss. “How do you embrace the peace that transcends all understanding when God’s movement does not align with Earthly expectation?
As we dealt with the uncertainty in his health, we attempted to proceed with the rhythms of life. That wrenching moment rewound in my mind in the midst of my days. Ambulance sounds caused shivers down my back. Yet, I attempted to let Jesus, not me, guard my heart.
The dark, frigid winter painted an appropriate backdrop to the events and feelings over those next several months. While we continued to hold on to the glimmer of light held out for us through scriptural promises, the realities of living in the “not yet” continued to speak into our lives. How does one live in the truth of new life in the resurrection, yet, face the reality of destruction and death of the things of this world?
My heart and my mind bear the scars of living in a kingdom that is both now and not yet. But I am keenly aware that I am not the only one. In one way or another, all of us feel that paradox. Circumstances may differ. Our expectations and God’s answers may or may not merge. Yet, the testimony and scars of others bear witness to the peace that Christ offers, while living in a kingdom that unfolds toward completion.
It’s the peace that Jesus promised to his disciples, who had given up everything for him. “I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” John 16:33 (NLV).
Eventually, the winter season yielded to the brighter, warmer days of spring; not just meteorologically, but symbolically as well. My son’s health improved. I am aware that I am bound to encounter those seasons of restlessness again. They too are promises of Jesus. But He also imparts a peace that “transcends all understanding” as we navigate through them.
It happens every year around July 5th…..As we walk into a store, the former 4th of July/Seasonal section transforms in the blink of an eye to shelves filled with notebooks, markers, crayons. Fall beckons even though the temperature bathes us in swelting heat. And the dread begins. School will begin soon.
For some parents, the reminder of the school season brings relief. Structure helps us all. For kids, boredom has set in and the opportunity for new friendships, learning environments and knowledge provides comfort. The issues of safety, school provided meals and childcare make the school year welcoming. Furthermore, I think we can all attest that, by August 1, the sibling fighting season is coming to a “point of no return.” The lure of soon-to-be peaceful hours on the homefront presents itself. I laughed when I saw that Trader Joes hosted a “back to school” tasting party for the parents on the first day of school. I’d love to say that I felt such a sense of exhilaration but I didn’t.
For me, the sight of school supplies on July 5th, brought very mixed emotions. My daughter struggled in school. While kids excitedly found out the names of their teachers we felt a lump in our throats. Would he/she see the beauty in my child that I see? While other kids frantically called up their friends to see who else shared their teacher assignment, the school suggested placing a familiar student in her class so that she would perhaps engage socially.
For us, it meant hoping that her teacher(s) would cooperate with the IEP easily so that I didn’t have to spend time at night emailing them about assignments. My other kids tired of being pushed aside in order to help my daughter complete her homework. We’re talking long tension filled hours which resulted in exhaustion for my daughter as well as my husband and me. Those days seemed to resemble a scene from the movie, “Groundhog Day.” I actually loathed going to sleep as I knew that the events of the day would all play out again the next day.
Getting my daughter to school proved to have its own challenges.
How do you manage to get a child to school on time when the clutches of anxiety/depression attempt to pull your child away from your hands ?
How do you move on with your day after dropping your child off at school after an hour long battle? Her eyes, swollen and puffy, her demeanor signifying defeat?
Don’t get me wrong. Summer is not always a picnic either when you have a child with behavioral/mood disorders. The lack of structure, the full on presence of everyone at home, everyday, and the lack of respite for the parents (and siblings) from the unpredictable outbursts make Summer days tedious at times. Yet, the beauty is that the child is in a familiar environment, and we can shape the schedule and activities around her needs.
These last few years, the approach of “back to school” season has not brought on the dread as much as in the past. A few years ago, we made the decision to home school our daughter. It was the best decision for our family. This choice presents its own set of challenges but we have developed a routine that works for us. I realize that homeschooling may not be the best solution for everyone.
So for those of you who are familiar with the dread of which I speak, keep on keeping on. God knows how much you love your child and that you want the best for them. What can you do?
Ask for help. You are not a bad parent because you cannot manage this school thing alone. Utilize your school village: social workers, resource teachers, aids to help your child navigate the learning environment. Furthermore, know your child’s legal rights for education. If necessary, seek advocacy outside of the district. There are some lawyers who offer services pro bono (search for local resources).
Let your vulnerability speak of your journey. I remember one phone call with my daughter’s resource teacher in which the tears came so quickly and so fiercely, that I could barely speak. Sometimes, others really do not understand the depth of the frustration and pain you feel for your child.
Most of all, know that God has created your child for a purpose. A sacred purpose. No one can take that away.
What can you do If you are reading this post and do not face the dread posed by “Back to School” season? Consider the little things that can make an impact on our families in a big way. Providing meals (even a gift card), extra affirmation to the siblings and generally listening without judgement speaks love into their souls. Pray for them.
These days can be hard. Sometimes, the words to form our prayers are just not there. But remember this: “Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. “(Romans 8:26, Msg.)