Morning Cup of Sunshine

I awakened this morning while it was still dark outside and the house was quiet. I have always been an early riser. As I sauntered down the stairs, the old, well-known proverb “Early to bed and early to rise, makes a man healthy, wealthy and wise,” my son-in-law, Ben, quoted to me while we were on family vacation in Utah last summer floated through my mind. Ben had noticed my sleeping habits while we were on vacation and was thrilled to see that they resulted in a beautiful breakfast buffet awaiting him each morning.

Morning is the time when my thinking is the clearest and I can accomplish the most.  I look forward to the quiet moments in the morning that I get to spend with God praying and studying. It’s the time of day when I feel closest to Him.

This morning, as per my usual routine, I headed straight for the kitchen to make the coffee. I pulled the Folgers Breakfast Blend out of the coffee cabinet, grabbed the Coffee Mate Snickers flavor from the refrigerator, and began filling the coffee pot with water. I love my morning coffee. It is oftentimes the first thing on my mind when I awaken in the morning and the last thing on my mind when I fall asleep at night.

As I sat at my kitchen table and drank my morning cup of sunshine, I began googling “Bible studies for special needs parents” in an attempt to find material we could study for the Moms’ Group that I lead. I stopped on one Bible study in particular titled “Held: Learning to Live in God’s Grip.” As I was reading, an unexpected wave of sadness swept over me and the tears started to fall that even my morning cup of sunshine couldn’t chase away. I had been slapped in the face with the reminder that I was no longer the mom of a child with special needs.

In the midst of my sorrow, I remembered the words spoken from one of the moms at a previous meeting: “This is temporary! This is temporary!” she exclaimed. A sentence with just three words, but for those of us who are suffering, what a profound sentence it is. I then embarked on a quest that morning to find Bible verses to comfort and remind me about the short-term nature of life’s pain and suffering. Below are the verses I found:

2 Corinthians 4:18
So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

1 Peter 5:10
And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.

Psalm 71:20
You who have made me see many troubles and calamities will revive me again; from the depths of the earth you will bring me up again.

Joel 2:25
I will restore to you the years that the swarming locust has eaten, the hopper, the destroyer, and the cutter, my great army, which I sent among you.

Revelation 21:1-5
Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.”

After being encouraged by God’s promises, with materials spread across the table and my coffee cup in hand, I pondered life for awhile and thought how every single one of us on this earth suffers. Of course we hate it and try our best to avoid it, but, sadly, no one escapes it. People we love become sick, marriages fall apart, kids rebel and make bad choices, spouses lose their job or get hurt and become disabled. The list goes on and on.

“For the Christian living in this fallen world, what exactly is the purpose of suffering?” I asked myself.  “There has to be a reason God allows us to suffer.” After researching a little more, I came up with two purposes for suffering:  To bring glory to God and for our good.

We have a choice of how we respond to suffering.  If we choose to suffer well, we display to an unbelieving world that Christ is more valuable and magnificent than any sorrow or pain we might be experiencing.  Suffering well creates opportunities to point others to Christ.

Suffering also loosens our tight grip on this world that always falls short of meeting our expectations and turns our gaze toward heaven with the hope of all things made new. It motivates us to work for a cause greater than ourselves and increases our capacity of compassion for others. Suffering causes us to put our hope in Christ rather than in the temporal things of this life for which God then receives the glory.

We don’t have to suffer alone though. God comforts us during times of suffering. His presence alone gives us strength and rest to endure our trials.  Psalm 34:18 says, “The Lord is close to the brokenhearted and saves those who are crushed in spirit.”  Psalm 23:4, “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” Exodus 33:14, “And he said, ‘My presence will go with you, and I will give you rest.’” God’s Word is true and infallible, and if the Lord says He will be close to us during our times of suffering, then He will.  If the Almighty says He is with us while we walk through the valley, then He is, and if the Great I Am says His presence will go with us, then it will.

As we go about our days, may we always remember the wise words from the mom in Moms’ Group and remind ourselves often that suffering is temporary.  We have been given hope from God’s Word that one day we will be restored, confirmed, strengthened, and established and He will wipe away every tear from our eyes and death shall be no more.

We have an eternity of joy and contentment to look forward to, so go now, dear one, and suffer well.

I Can’t Do Any More

Isaiah 30:21 “Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, ‘This is the way; walk in it.’”

My son TJ was discharged from Mayo Clinic the first time on September 3, 2013, after a four-month hospitalization.  Despite his very complicated medical condition, our plan was to take care of him at home. He was 17 years old and still a child.  He had been through a harrowing experience, and I wanted him to have the comfort that only being at home could provide. I couldn’t bear the thought of placing him into a care facility after all he had been through.

During our stay at Mayo, the medical staff was very focused on training parents on how to take care of their children with medical problems.  As I stated in earlier posts, I despised learning and didn’t appreciate being forced by the medical staff. My hope was that if I held off long enough, he would get better, and I wouldn’t even need to learn his healthcare routine.  But after being told that he wasn’t getting out of PICU until I learned, I begrudgingly started working on checking off the boxes of my to-do list which included daunting tasks such as changing a trach three times and CPR training. After completing all the tasks, I decided I had had enough and I wasn’t going to do any more of it until we got home.

The next morning when I walked into TJ’s room, after updating me on TJ’s night, the nurse told me that I needed to do his morning site cares.  Site cares involved cleaning around his trach and G-tube with Q-tips and changing the dressing. I had already checked my three boxes off for having done site cares, and I felt that I knew how to do it good enough.  Upon hearing her instruction, I immediately started bawling and exclaimed, “I’ve done my three times already and I can’t do any more! I’m tired! There are other things going on in my life right now that you don’t know about!”  She said, “Well, you still need to be doing them. You can’t just stop. You’ve got to keep practicing.” I turned my head away and looked out the window, and the room got very quiet after that.

What were those things that were going on?  Well, I was grief stricken and heartbroken, and my body was beyond exhaustion.  I wasn’t getting much sleep. I tossed and turned every night wondering if my son was going to get better.  I wondered what kind of life he was going to have and how we were going to live like this. I went over and over in my mind his decline that first week trying to figure out what had gone wrong.  Even doing
5 minutes of site cares seemed to be too overwhelming.

The nurse began to do his site cares then and gave me a break, but my relationship with her was never the same after that.  She was quiet around me and didn’t make eye contact with me anymore which bothered me. Looking back, if I could go back to that day, knowing what I know now but also remembering how I felt then, I still don’t know I could have reacted any other way.  However, what I would tell that nurse now is, “Thank you for pushing me. Thank you for putting up with me. Thank you for making me learn how to take care of my son. Don’t ever stop pushing parents when they protest and give you a hard time. What you are doing is so important.”  Once we got TJ home, I began to realize just how vital those skills were and how the medical staff at Mayo knew that.

Several months later, my son was admitted into a brain injury rehab facility.  Most days I stayed with him all day and went home at night to sleep. Early in his stay there, one afternoon I heard the all too familiar sound of his trach gurgling which meant it needed suctioned.  While the nurse was in the room, not even thinking twice about it, I jumped up and began suctioning. I looked up, and the nurse was standing there stunned with eyes wide open. I asked, “What’s wrong?  Did I do something wrong?” and she said, “I have never had a family do that before.” That was when I first began to understand what a rarity our knowledge was.

TJ also had a G-tube.  Once in awhile it would get clogged, and I would be unable to get it cleared.  We would then load up in the van, go to the hospital to Interventional Radiology, and sit there for hours until they removed it, put a new one in, and then x-rayed it to make sure it was in the right place.  I hated going down there and sitting all day. It was uncomfortable and hard for TJ to sit in his wheelchair that long, so I decided I would just have extras available at home and I would do it myself. I thought if I can change a trach, then I certainly can change a G-tube.  The only thing I couldn’t do was x-ray it, but I decided we would be okay, although I figured a doctor would probably disagree with that.

A few months later TJ had an appointment with the GI doctor.  When he asked me how often the G-tube gets changed and who changes it, I was afraid to tell him that I was the one who had been changing it and wasn’t getting it x-rayed.  I reluctantly confessed to him that it was me and prepared myself for the scolding I was about to receive. He then said, “You’re doing it? That’s wonderful! I never have patient’s families do that!  You’re doing a great job!” A feeling of relief washed over me, and I once again realized how unusual our medical knowledge was.

Another time toward the end of TJ’s life when he was in the hospital with pneumonia, a pulmonologist came in to talk to me.  As we went over TJ’s symptoms and treatment, the doctor commended me on the great care we had been giving him. He said, “He hasn’t been in the hospital for two years which means you are doing a very good job taking care of his lungs.”  Upon hearing this, I was beaming inside and knew it was because of the training I had received at Mayo.

TJ and I at his 20th birthday party at Principal Park

Many times since that initial brain injury in 2013, I have thanked the Lord for his guidance during our son’s illness.  Even though this terrible disaster had occurred, the Lord was with us every step of the way, taking care of us, and pointing us in the direction we needed to go.  Life flighting TJ to Mayo was the best decision we ever made in those early days after tragedy struck, and I am thankful that the Lord put people around us who encouraged us to go there.  I am thankful that God had provided Travis with a job that had impressive health insurance that allowed us to life flight TJ to Mayo in the first place. I am also thankful for the medical staff in Rochester who greatly care about the people they treat and are in the trenches battling with you at the time when you need them the most.

There are times in our lives when God leads us into things that we don’t want to do.  I didn’t want to learn my son’s medical care, but I’m so glad I did. My life was richer because of it, and I was able to spend three years with him at home.  Because of the battle we were in together, the bond between TJ and I grew strong, and it was hard for us to be separated from one another. I hugged and held hands with my 21-year-old son every single day.  There are not many mothers who get to do that. I was very blessed, and I am looking forward to the day when we are together again.

A Constant Friend

“A friend loves at all times,
and a brother is born for a time of adversity.”
Proverbs 17:17

Ambiguous Loss. That is a term you’ve probably never heard before. What does it mean? In the 1970s Dr. Pauline Boss, a professor emeritus from the University of Minnesota and an educator and researcher, introduced the term “ambiguous loss.” She describes the term in her book Loss, Trauma and Resilience as “an unclear loss that defies closure.” She goes on to say that “ambiguous loss is the most stressful kind of loss. It defies resolution and creates long-term confusion about who is in or out of a particular couple or family.  With death, there is official certification of loss, and mourning rituals allow one to say goodbye. With ambiguous loss, none of these markers exists.”

She did not say that ambiguous loss is the most painful of all losses. Because let’s face it, loss is loss and it all hurts. Ambiguous loss, however, is unique in that it is an “extraordinary stressor — a producer of uncanny anxiety and unending stress that blocks coping and understanding. It freezes the grief process and defies resolution. It understandably encourages denial of loss. It can lead to immobilization and more crises.” (Boss) Ambiguous loss is loss that is seen in families traumatized by war, terrorism, natural disasters, and chronic illnesses and disabilities. The brain injured, the stroke victim, the Alzheimer’s patient as well as the kidnapped or imprisoned also fall into this category. In my own words, it is hell on earth.

Caring for a child with a brain injury can be a lonely road. There are few who understand. We were suffering from a strange phenomenon that I termed “living in between life and death.” He wasn’t dead, although in some ways it felt like he died the day of his surgery. However, he wasn’t alive either — not really alive, just existing. The person he had once been was a thing of the past. Living in between life and death is an excruciatingly painful place to be. Twice I sought help from different Christian counselors. My hope was to process the grief with someone who understood, but after a few sessions, I was even more frustrated than when I began. I realized that unless a counselor has specific training in brain injury grief and loss, he does not understand the uniqueness and complexity of the pain.

In an article written in Brain Injury Journey magazine, Janelle Breese Biagioni, RPC, states, “Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury.  This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is.”

So, if most counselors don’t fully understand brain injury grief and loss, then how can the friend of a mother of a brain injury victim understand it?

Well, the answer is — they can’t. During the years my son lived with a brain injury, I heard repeatedly how hard it is to be the friend of a person who has experienced this kind of tragedy. I have seen people struggling about whether to bring it up or not bring it up. If they do bring it up, they don’t know what to say because they fear they may say the wrong thing and cause more hurt. I came to the conclusion that is why some do and say nothing and avoid the injured altogether. While it is very understandable why some would react this way, it probably is not the best way to handle it. Handling it this way actually causes the injured more loneliness and pain. Exiting their life translates to “I don’t care about you” even though that may not be true.

How do you relate to the mother of a child who has a brain injury? I believe the first and most important thing is to stay in their life even though it’s hard. It’s not necessary to be there daily or even weekly, but it helps if you just check in from time to time, like once a month, so they know you care. It can be something as simple as sending a text. I had no shortage of friends in my life while my son was alive, and I am grateful for every one of them. Many checked in on me often, took me to coffee or lunch, or just simply sat on the couch and cried with me.  They were one of God’s many blessings during that time. I knew I was loved and cared for.

The second most important thing is don’t judge them or what they talk about. There were many times when I probably sounded irrational to some. There were times I was stuck in certain areas of the grieving process like anger, the never-ending pursuit of trying to find answers, or the most painful of all, the loss and change in TJ’s social standing. Although I may have sounded unreasonable, it really was a normal reaction to an abnormal situation. Many times when we don’t understand or haven’t experienced a situation before, we make judgments of others that they’re irrational, frustrating, feeling sorry for themselves, complaining, etc., but in reality these reactions are normal and have to be processed so the one experiencing the trauma can learn to cope with ambiguous loss.

The best thing the friend can do is just listen and say things like, “I’m so sorry this happened to you,” “I can’t imagine how hard this would be,” “I can understand why you would feel that way,” “I just want to be here for you and be a listening ear.”  Part of the healing process for the one suffering is being able to talk about it without being judged for the way one feels. If they’re angry, let them be angry. If they’re frustrated, let them be frustrated. If they’re sad, let them be sad. Allow the one suffering to feel the way they feel without correcting them. Over time, as they process through their feelings, they will figure out what they need to do differently themselves. Understand this process can’t be sped up, and there is absolutely nothing you can say that will heal the hurt and make it all better. You are not there to solve the problem; you are just there to be a listener.

My friend Amber did an amazing job at being my friend during the course of TJ’s brain injury. Once a month for three years she showed up with two Starbucks coffees in hand, one for me and one for her. During each visit, she sat and talked with me for a couple of hours. She let me talk about my grief, sadness, and my frustrations. She also shared what was going on in her life which helped me feel connected to the outside world. It couldn’t have been easy for her. My problems were heavy, chronic, confusing, and long term, but she stayed by me, loved me, and truly modeled what being the hands and feet of Jesus looks like. She was a gift from God and was very wise at knowing how to be the friend of a mother with a son with a brain injury.

The Sovereignty of God

Hebrews 11:13  “All these people were still living by faith when they died.  They did not receive the things promised; they only saw them and welcomed them from a distance, admitting that they were foreigners and strangers on earth.”

I lead a group at my church for moms of children with special needs.  At the beginning of each meeting, we read a devotional that’s designed to center us on God before we begin sharing our hearts.  Right now we are reading a devotional called Refresh: Spiritual Nourishment for Parents of Children with Special Needs written by Kimberly M. Drew and Jocelyn Green.  After reading the devotional, we talk through discussion questions and anything else that is going on in our lives that only another mother of a child with special needs would understand.  

Our devotional at a recent meeting for me was very insightful.  It was titled “Sovereign Moments.” The story begins with Kimberly sharing her story about how her daughter, Abbey, came into the world.  Because of the traumatic nature of Abbey’s delivery, it resulted in her having lifelong multiple disabilities. The doctor had written in his notes that it was because of “poor maternal effort.”  Kimberly said what he failed to mention was that he was asleep in another room for almost the entire delivery and that right at the end of the delivery, he rushed in, looked at her vitals, and yelled, “Now!”  A few minutes later, Abbey needed to be resuscitated. For many years Kimberly blamed herself while her family and friends blamed the doctor. She later came to accept that God could have intervened at any moment during the birth of her daughter and yet chose not to.  Over time she grew to find comfort in the sovereignty of God.

Kimberly closes her devotional with this profound paragraph:  “At thirty-five weeks pregnant, my dear friend Allison woke up from a nap covered in blood.  She was rushed into an emergency C-section for a second-degree placental abruption. It was my obstetrician who saved her life and her sweet baby’s life.  Mere men make mistakes in one moment and rise to do amazing things in the next. God is sovereign over them all.”

For me, prior to TJ’s injury, when a doctor entered the room, the heavens parted and the angels began to sing.  I thought they were the smartest people on earth and knew all the answers. TJ spent more than a year of his short life in the hospital, and during that time, I began to view doctors very differently.  Although most times I was fascinated by their brilliance, I also at times saw them as imperfect human beings like me who make mistakes, who do not have all the answers, who can’t undo a tragedy, who do not control life and death, and who are limited by only the knowledge God allows them to have.  I began to realize that putting lofty expectations on them was unfair and should be reserved only for God. We knew there had to have been oxygen loss during TJ’s surgery, but his strange presentation after surgery along with an MRI that didn’t match his symptoms were a mystery to doctors, and after years of struggling to find answers, I finally came to believe that if God wanted us to know what happened, He would have given the doctors that knowledge.

Like Kimberly, our son’s brain injury and eventual death was caused by, in our opinion, a doctor’s mistake.  Over time I too have also grown to find comfort in the sovereignty of God and that He also could have intervened at any moment during my son’s surgery and yet chose not to.  Through the years, I’ve started to see the lives that could be won for Christ because of TJ’s powerful story, and I could also see God’s presence everywhere in our lives as He lovingly carried us during our unimaginable trial of suffering.

A friend of mine who is a nurse once told me,“Regarding surgeons, always listen to who the nurses recommend because they see the patients coming out of the OR.”  We chose TJ’s surgeon because he was highly regarded in our community. We had heard nothing but wonderful things about him. He had done a lot of good for a lot of people.  During the years following TJ’s surgery, I’ve seen many shocked faces from medical staff upon learning who TJ’s surgeon had been. I’ve come to the conclusion that this kind of surgical outcome was unusual for him.  Even though my son’s surgery had a devastating result, I would still say his surgeon is a good surgeon. Although I didn’t understand it at the time, looking back I can see the look of pain in the surgeon’s eyes that first week as TJ rapidly declined, and even though it has been a process for me, I now have compassion for him.

I believe there were higher forces at work that fateful surgery day in 2013.  I don’t understand it all, but I do believe God was in control that day. And because of the work that Christ did on the cross for me, I am forgiven, so, therefore, I can be obedient to Him and live a life of forgiveness trusting that He will make all things right in His time.  I believe one day we will all see the far reaching effects TJ’s story has had for growing the kingdom of God. My prayer is that God will extract every ounce of good from TJ’s suffering and will use it for His glory.

What about you?  Where in your life are you having trouble trusting the sovereignty of God?  He says in His Word that He loves you and always has your best interest at heart.  Take a step of faith today and trust Him. He will never fail you.

The Quick Head Turn

My son TJ was born a typical child. At the age of 16, he acquired a brain injury that left his body severely disabled but his cognition intact. He thus became a child with special needs. During the five years that TJ lived with his brain injury, one thing that became glaringly obvious to me was the lack of education in the community about how to treat people with special needs. Many, many times my heart was broken for TJ and for myself because of hurtful comments or actions that were made from the Christian community and the non-Christian community alike. After struggling with anger for a time, I began to realize it was really just a lack of education, and I felt a burning desire to do something about it.

First, let me start by explaining what “typical” means.  “Typical” refers to basically any person who doesn’t have special needs. Many people in the special needs community are offended by the word “normal,” and rightfully so; therefore, the word “typical” is used in its place.  For me the word “normal” does not bother me when referring to TJ in particular because who he was after his brain injury was not his normal. However, it is very understandable why the parent of a child with Down’s syndrome would be offended by the word “normal” because their child was born with Down’s syndrome which means God created the child that way and that IS the child’s normal.  Labeling a child as “normal” or “not normal” can be very hurtful, so to be safe, it is best to stay away from using those terms.

Now that our vocabulary lesson is done, I want to share a story of my mindset of special needs prior to TJ’s injury in 2013. A few months before his surgery, I was at a craft show with a friend. As I came through the door into the room, I saw a young girl, maybe 5 or 6 years old, with special needs in a wheelchair. After seeing her, I quickly looked the other way and pretended I hadn’t seen her. After meandering through the craft tables for awhile, I came back around to the entrance of the room and saw the little girl again. However, this time a woman was standing beside her.  The woman was caressing the little girl’s face and talking softly to her. As the little girl was leaning into the caress, a look of pure pleasure spread across her face from the love and attention this woman was showing her. I immediately felt ashamed. “Why didn’t you acknowledge her?” I thought.  “Why didn’t you at least just smile at her? Why did you just pretend she wasn’t there? I’m supposed to be a Christian,” I told myself.

Tom playing cards with TJ at respite care at
Valley Church

Fast forward four years. One Sunday morning we were attending church. Generally TJ went to his own room where Tom, a very kind man with a servant’s heart, taught him a lesson from the Bible. However, on this particular Sunday, Tom was gone, so TJ stayed in church with us.  Toward the beginning of the service at our church, there is a greet-your-neighbor time. While I was shaking hands with the people around me, I kept my eye on TJ. I noticed nobody came to shake his hand or greet him. I immediately felt very sad for him and ran to be by his side. I then saw a woman a few rows in front of us scanning the room for another person to greet. When her eyes landed on TJ, a look of uncomfortableness flashed across her face, and she quickly turned around. My heart sank. I was now on the receiving end of the quick head turn, and it didn’t feel good.

Even though the woman’s failure to acknowledge TJ hurt, I understood what she was feeling that morning because I had felt the same way years prior. I assume that like me before TJ’s injury, she probably had no experience with special needs and didn’t know what to do. She may have had thoughts like: “If I approach him, will he get scared and start screaming?”  “If I greet him and he can’t greet me back, will it make him uncomfortable? Will it make me uncomfortable?” “Maybe he really just wants to be left alone.”

What the person with special needs and their families want everyone else to know is that as much as it is possible, we just want to be treated like everyone else. If it’s the greet time, greet us and shake our hands. If the person with special needs can’t shake hands, give them a gentle touch on the shoulder and tell them you are happy they are there. If they are nonverbal and can’t respond, that’s okay. Tell them anyway, smile, and then move on like you would with everyone else. You never know how much a person with special needs is capable of understanding by looking at them. Some are far more capable of understanding than you think they are, and even if they aren’t capable of understanding your greeting, their families are and they notice when their child is being acknowledged and they do feel loved by it.

I am convinced that it was not a coincidence that the event at the craft show happened just a couple of months before my son became a person with special needs. I believe God had me experience both sides of the quick head turn so that I could help build a bridge between the general community and the special needs community.  It really is just a matter of education.

I’ll never forget what my friend Kim did for TJ the first day he was healthy enough to return to church. She was elated when she heard the news that TJ was there. She made a beeline straight to him, fell all over him, and told him how happy she was that he was there and how much she cared about him. After having experienced so much rejection, her kindness still brings tears to my eyes. Kim didn’t seem to notice that TJ was drooling all over himself, that there was a gurgling sound coming from his trach, or that he couldn’t focus his eyes on her when she talked to him. What Kim saw was a heartbroken person who had been through a terrible tragedy and needed to be loved. That day she made him feel like he was a little bit more of a person and a little bit less of an outcast.

Whenever I see someone at church or in the community with special needs, I remember what Kim did for TJ and how it made us feel. As best I can, I imitate her actions to other people with special needs so they will also feel a little bit more like a person and a little bit less like an outcast.

Job 6:14a “To him who is afflicted, kindness should be shown by his friend…”