My sweet Nate has been sick for 5 days with a fever over 103. Would you please say a prayer for him?
Thanks so much.
My sweet Nate has been sick for 5 days with a fever over 103. Would you please say a prayer for him?
Thanks so much.
We read books about it (almost always fiction). Laugh about it in movies. See it used as a cheap gimmick in the afternoon soap operas. How strange it is for me to say with all seriousness, “my husband has amnesia.”
Ben lost his memory in 2004. Lack of oxygen to his brain caused him to lose at least four years of our lives together. Unlike amnesia portrayed in movies, Ben never forgot his own identity. He could remember people … but he couldn’t remember events from the past four years and his brain could not form new memories. In fact, I had to tell him multiple times that I was seven months pregnant with our third child!
When he came home from the hospital, our five year old daughter was sitting on the couch reading a Frog and Toad book to my dad. Ben took one look at her and started crying. “When did she learn to read?” He asked.
Later that day, we were walking slowly outside. Ben was silent, clearly confused and in pain from so many seizures. He looked at a car he didn’t recognize in our driveway. “Whose car is that?” he asked.
“My dad’s,” I answered. “Oh,” Ben replied. There was a pause, and then he asked the question I so desperately was hoping wouldn’t come up. “Did your mom come, too?”
My heart sank with the enormity of loss. I knew that this would be one of the strangest conversations I ever had. I prayed that God would help me. “No,” I said simply.
I could sense that Ben was hurt and confused by her absence. “Why not?” Ben asked. “She died two years ago,” I said. I was calm on the outside, but inside my heart was breaking.
“Oh,” Ben said silently. He didn’t speak again for the rest of our walk.
Coming home from the hospital after his seizures was a painful time for us. The doctor who had been assigned to Ben in the hospital told me that there was no medical reason for Ben to stay in the hospital.
I remember pleading with the doctor. “He can’t remember what happened five minutes ago. He doesn’t remember that I’m pregnant. You can’t send him home like this.”
“Your insurance company will not let him stay in the hospital just because he can’t remember things,” the doctor replied tersely. And with that answer, he walked away.
Oh, how I wish I had been more of an advocate for my husband at that time! How I wish that I had insisted we be referred to some form of specialist, some form of therapist … anyone who could help us navigate the bizarre circumstances we were experiencing. All we were told was “find a local neurologist.” But neurology deals with disease of the central nervous system. The neurologists we visited were focused on treating Ben’s seizures (with medication). None of them were trained to help us deal with the behavioral and emotional changes brought on by Ben’s amnesia.
Some trust in chariots and some in horses, but we trust in the name of the Lord our God.
I know it is by God’s design that we were left to fend for ourselves in the bizarre world of retrograde amnesia (what we typically think of when we hear the word amnesia), and anterograde amnesia (loss of ability to form new memories). But over the years I have learned to be tenacious in doing my own research and advocating for my husband’s health. I trust God fully. But I also know that I know my husband better than any doctor, and it is up to me to make sure that he gets the best treatment possible.
If you are living with a family member with a hidden disability, how have you had to advocate for your loved one’s care? How do you find the balance between trusting God and searching and pushing for what you believe to be true?
It seems like a question we are forever asking ourselves. I’ve even mentioned it on this blog before. “Is this particular issue a result of Stephen’s disability or is it normal teenage behavior?” Having two older sons who do not struggle with the same disabilities you would think that I could easily identify these differences, but I can’t.
Lately I have noticed that it is not as big of a struggle to get Stephen to help around the house. We don’t launch into the usual battle each time he is asked to empty the dishwasher or mow the grass. I might even use the words compliant and willing to describe his reactions when asked to perform most household duties. Are we turning a corner?
This leads me to wonder … as I relate the stories of our life with Asperger to those of you who may not be as far along in this journey … would we have reached this ‘point of less resistance’ earlier if we had given Stephen more chores and responsibilities earlier. Because he relies so much on routine and predictability, I believe we would have. Perhaps it would have actually been beneficial to him if we had taught him how to make his bed, expected him to clean-up after himself and given him age appropriate responsibilities around the house all along.
My point here is to offer encouragement that there may be a day and a time that every simple request will not be met with anger or contempt. Stay strong and continue working to teach your child manners, social etiquette and life skills. Our goal is to provide them with the tools they need in order to succeed in this world without our assistance.
All of us face different issues and different levels of disability. If you ever foresee your child living on his or her own and possibly having a family I would suggest that you make a list of the ways your child needs to gain independence. My list could have started out with cutting his own meat at the dinner table and included other things like taking out the garbage and washing his clothes. Then, you can slowly start incorporating those things into your child’s routine. My husband taught Stephen how to make pancakes and now he volunteers to make pancakes for the whole family! Although it may take a few battles and frustrating days, weeks or even months, hopefully you will see the day when your child will recognize his or her own ability to care for him or herself and take a giant step toward adulthood.
You’d think I’m growing up or something.
I said “no” to working from home.
It was this great opportunity as a writing coach for an online homeschool curriculum. I could do it. And I’d be good at it. I might even enjoy it. In spurts. We could use the money. But we’re doing okay without it.
Here’s the thing: God’s already given me responsibilities. He’s been very clear about them. My focus: being Michael’s wife, being Cami’s mommy, being a friend to my neighbors, being an authentic blogger. In all that, letting God heal some big things in my heart. With my marriage and playdates and homeschool and neighborhood—my life is full to the brim.
Add one more thing, and I think I’ll freak.
So—I’m not adding it.
I’m getting my house in order. I’m keeping my focus. I won’t overcommit. I’m learning to take care of myself. I’m learning to concentrate on just the things He’s given me to do, not all the things that need to be done.
There is so much need in our world, and life is huge sometimes. But not everything is my responsibility—only what He gives me to accomplish. If I try to take on more than He gives me to do, then I lose my focus, and basically, I’m not trusting Him.
Sometimes I’m overwhelmed because I’ve taken on responsibilities that He hasn’t given me. Like someone else’s pain. Or a need He hasn’t purposed for me to fill. Or earning extra money at a job that will take time and energy away from my husband and child.
It’s all in the balance.
So here I go. . .
Watch me walk, putting one foot in front of the other.
Watch me breathe from the bottom of my lungs.
Jim and I just returned Thursday from a 5-day cruise without our precious boy. Dan turned 17 on July 5th while he was cruisin’ with Frontier Travel Camp and we are going to pick him up in New Jersey on Saturday.
Our cruise was a mixed blessing. It’s not so much what we did on the cruise that made it great: it’s what we didn’t do that made it great. We didn’t have to entertain Dan or worry about him spending too much time in the arcade. I didn’t do a single load of laundry. I didn’t make the bed. I didn’t cook. I wasn’t subjected to “What’s for breakfast/lunch/dinner?” every single meal for the entire week.
But on the other hand, my boy is gone - a foretaste of the empty nest we will experience when he leaves high school in 2 years. This week’s vacation from autism is a little different from the next one in October: he will be gone for a 10-day Postsecondary Education Rehabilitation Transition Program in VA while I am home every day, working at his high school (I’m off for the summer). Being on a cruise was pretty great. But being home, living my normal everyday working life without my son? The empty-nest soup might not be so tasty.
Still, I’m so very thankful for the respite, and for the man who has loved me for almost 25 years, and who will still be here when Dan is gone.
Because of the LORD’s great love we are not consumed,
for his compassions never fail. They are new every morning;
great is your faithfulness. Lamentations 3:22-23
Our family has had a very difficult and painful month, which I will share about in a future post. For now, I am focused on nursing my four-year-old daughter, with a sensory processing disorder (SPD), back to health from a high fever and sore throat.
While I’m sure all mothers can relate to the difficulty and often heartbreaking task of caring for sick children, those of us whose children have hidden disabilities know how extra hard it can be.
Gracie is sensory seeking, craving stimulation (jumping, spinning, climbing) and has a very difficult time regulating her emotions. So when she is sick, she spends a lot of time crying, no weeping, uncontrollably about feeling sick and wanting to feel better. It is very hard to watch your child beg you to help her stop crying. Thankfully, her occupational therapist has taught us some techniques to help her body regulate. But it is draining for us all.
In the midst of her latest sickness, sadly sprawled out on the couch for hours at a time, something she NEVER does since she is always in constant motion, my heart was breaking. Oh how I longed to make it better, to take away her pain and sadness.
It was at that moment I sensed a still small voice in my spirit.
“That’s how I feel about you, precious one. My heart breaks for YOU as you suffer from the effects of sin, yours and the sin of others.”
Tears filled my eyes as I felt my Heavenly Father’s loving embrace, making the very ordinary and mundane sacred. Isn’t that just like our gracious Father?
Know you are deeply loved today and His heart breaks for YOU as you struggle and suffer living in this fallen world.
Ps 90:12 “So teach me to number my days that I may present to You a heart of wisdom.”
I just got my days numbered. I spent 2 weeks living inside a retirement home, where I was the youngest person by 20 years minimum, and 50 years maximum. It is crystal clear to me that life ends, and it goes by fast. And I was reminded AGAIN Jesus assigns which place we each hold on the wall, and being faithful in that spot matters. I am assigned a spot on the wall next to several loved ones with hidden disabilities. My shift will be over before I know it.
I was schooled by the raw strength of character it takes to live inside a failing body and/or mind … and it gradually dawned on me many of them are fighting because of age the same fight our loved ones with hidden disabilities fight – the fight to believe their lives still matter even though they cannot accomplish normal tasks, the fight to believe God will not fail them, the fight to accept the help they need to survive.
I am so full of what I saw and heard, I want to share with you, the younger community of hidden disabilities, what I saw in those lives facing the same battle in their last years of life! It’s not new, it’s just powerful.
I saw them put on their glasses, and open God’s Word at the beginning of the day, for the strength to face it … because as one whispered to me, “you know, I just need some truth to help me at times like these….”
I watched them use their last bit of strength to open God’s words at the end of the day for comfort because the day was filled with losses and failures. Failure to pass the mental acuity test, to learn to use the walker, to balance the checkbook. Loss of their independence, their home, their 60 year marriage.
They were grateful and graceful in accepting the help they needed.
They each filled my day with stories of specific ways Jesus saved them, healed them, helped them, in 1932, 1948, 1961, 1989, and last week. They are literally using their last breaths to testify. I went with my loved one to her best friend’s room. The best friend strained to remember her face, but made sure to ask me, “do you know Jesus? do you love Jesus?”
I want to do the same.
18,490 days and counting….
I just want to tell you all that YOU ROCK! I asked you to help us reach 25 likes on our new Facebook page so we could get our own link and you responded! And check this out: facebook.com/ChosenFamilies
Please share this link with your friends so they can like our new Facebook page also.
You all bring me such great joy.
This week, Ben and I have the honor of celebrating our 19th wedding anniversary. One blog post can simply not even begin to plumb the depths of life that we have experienced together in these past nineteen years.
But there was a defining moment, right before we got married… a “foreshadowing,” so to speak, of things to come.
Ten days before our wedding, Ben and I were driving from Illinois to New Jerey. Ben had graduated with a degree in music from Northwestern University and we were stopping in Pennsylvania to put our belongings in storage. The plan was to get married in my hometown in New Jersey and then begin our new lives as grad students at Penn State.
For financial reasons, we shared a hotel room in Pennsylvania. For spiritual reasons, we slept in separate beds.
Shortly after going to sleep, I was awakened by a grunting noise. I turned to see Ben jerking and shaking in his bed. Saliva was coming out of his mouth and he was completely unresponsive to me.
I called 911 and waited in our hotel room for the ambulance to arrive. I felt very alone and very young.
The paramedics burst into our hotel room with a flash of light, noise, and people. They asked me questions that I wasn’t able to answer and tried valiantly to get my fiancee to wake up. Ben didn’t regain consciousness, so they put him on a stretcher to take him to the hospital. Even in his barely conscious state, Ben resisted being taken away in restraints. He yelled and fought off the paramedics until they needed to call for back-up.
Forty minutes (and 8 paramedics) later, Ben wakened enough to voluntarily go in the ambulance. The paramedics graciously allowed me to ride in the front with them…a caring gesture at the time, but one that left me stranded in a strange hospital without my car or Ben’s shoes!
I listened in the ambulance as the paramedics asked Ben questions…”Do you know where you are?” “No.” “Do you know what year it is?” “No.” Finally, I said slowly, “Ben…do you know what happens in ten days?” For the first time, Ben sat up on his stretcher and opened his eyes. “I’m getting married!” he said as a big smile played out across his face. “July 11th, 1992.” Then he promptly fell back on the stretcher and went to sleep.
Oh how I sensed God’s faithfulness in that small, simple answer spoken by my future husband. Things were topsy turvy…but God demonstrated His love in that one sentence spoken by my confused husband. I see Ben’s short experience with memory loss (he also did not remember anything about the day before his seizure) as a foreshadowing to help prepare me for the amnesia and memory loss of the past seven years..
Ben was later diagnosed with epilepsy – recurring seizures with no identifiable cause. We could never have imagined the ways that God would use Ben’s seizures to shape us, mold us, and cause us to trust Him. We could never have imagined the three beautiful, precious children God would give us who have had to live much of their short lives amidst difficulty, trials, and faith. But we know that through these nineteen years, nothing that we have experienced has been a surprise to the Lord. For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.
Happy Anniversary, Ben. I am so thankful that the future and hope He has for me includes you.
Last week I wrote about our upcoming trip to an amusement park and the things we might do as a family to ensure that a good time would be had by all. That blog was titled “Four Days of Togetherness.” Here we are on the flip-side of that vacation and I am happy to report that we all survived. I’ll even go so far as to say that it was a great trip.
I thought it might be helpful to reflect on the things I mentioned in that post and let you know how each one went.
We began with a plan. There was a pdf of the park map available online so we printed it out and let Stephen study it. This worked well because when we actually arrived at the park he already knew what to expect and also had a good sense of the layout of the park.
While the 3-day event centered around Christian music concerts, we knew that Stephen (who doesn’t care for music anyway, especially when it is loud) wasn’t interested in participating in those. We never had a problem finding one or more people in our group who were willing to miss the concerts in order to hang out with Stephen.
Knowing how particular Stephen is about sitting next to anyone he doesn’t know we were very cautious about placement on rides. On the second day the kids suggested that we ride as ‘single-riders’ so we wouldn’t have to wait in line as long. Stephen was all for that. When I mentioned that it would mean he would be sitting by someone he didn’t know he said, ‘I know, it is okay.’ And he did it multiple times!
In order to combat afternoon fatigue we planned to leave the park and have dinner in a sit-down restaurant. It was a welcome break for all of us as well as a good time to regroup.
Stephen used his drink/snack/souvenir allowance wisely and even came home with $20 he had not used and we never had to listen to him complain about being hungry or thirsty.
Overall it was a great trip and there were no meltdowns. While we were making our daily plans we took into consideration not only Stephen’s needs, but also the special requests of everyone in our group (which included adults and children from age 3-17). Not only should Stephen know that we will do our best to accommodate his differences, but it is also good for him to see that we also do our best to honor the preferences of others in our group with different needs.