Tag Archive | Special-needs Child

Learning to RALLY

Life with chronic illness – or any of a variety of the many trials we face as a part of life on this fallen earth – can be difficult. And poor choices that open a door to the enemy make it even harder.

I’m currently doing a study of Rally: A Personal Growth Bible Study, written by Barb Raveling, with a Facebook group I’m a part of. I highly recommend this book.

“Do you ever wish you could escape your problems? Just jump on a ship and sail across the ocean?” If your answer to this question is yes, this study may be just what you’re looking for.

From the back cover of the book:

“The Bible tells us to count it all joy when we encounter trials, but that’s hard to do. It’s easier when we remember that trials have the potential to help us grow. Unfortunately, we’re often so busy stressing and obsessing that we miss out on growing.”

The focus of this Scripture based study is on learning to “slow down, take a deep breath, and spend some time visiting with God about your current struggles.” Barb gives five steps God’s Word teaches us, which form the acronym RALLY.

R – Renew your mind.

A – Ask Him for help and accept what you need to accept.

L – Let go of your have-to-haves.

L – Let go of “if only” and make a plan.

Y – Yay God! Thank Him in all situations.

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Exploring Rest: Physical Rest and Chronic Illness

“In vain you rise early and stay up late, toiling for food to eat— for he grants sleep to those he loves.” Psalm‬ ‭127:2‬ ‭NIV‬‬

As I began studying REST as my Word of the Year for 2018, my main focus was on RESTING in the Lord. This is definitely important, but as I’ve prayed and listened to God’s voice I’ve recognized the need for some study on the physical aspects of rest as well. The God who formed our bodies in the wombs of our mothers is concerned about physical rest. It is a God-given gift to “refresh tired bodies” and “restore tired souls” (Jeremiah 21:25 MSG).

I’ve had a bedtime routine for several years of getting in bed around 10pm, then spending thirty to sixty minutes relaxing and reading before turning off the lights and actually going to sleep. My alarm is set to go off at 7:30am, so this schedule allows for the recommended hours of sleep. Occasionally, our special-needs son will have problems during the night, setting off the alarm on his monitor and waking me up, but overall this schedule was working.

However during the last few months, I’ve noticed most nights I either have trouble getting to sleep in a timely manner or I’m waking up much earlier than I used to, around 4am most mornings. Suddenly, I was seldom getting the amount of sleep recommended by the National Sleep Foundation for those in my age group. Because of a combination of living with a long list of chronic illnesses and some other age-related problems, I now seldom get the recommended seven to eight hours of sleep. And as one of the leaders of a large group of Christian women with chronic illness, I’ve seen that I am definitely not the only one who faces this problem.

Sleeplessness and Chronic Illness

Insomnia, the inability to fall asleep or remain asleep for the recommended amount of time, is a common problem for those with chronic illnesses. In some cases, a medical condition itself causes insomnia, while in other cases symptoms of the condition cause discomfort that can make it difficult for us to sleep. Also, insomnia is sometimes a side effect of some of the medications used for chronic illnesses. Common medical problems related to insomnia include gastrointestinal problems, endocrine problems, neurological conditions, allergies, asthma and chronic pain. Unfortunately, treatments may help relieve the severity of these problems but they seldom totally remove them.

While those who suffer with these and many other chronic illnesses may never be totally free from the issue of insomnia, there are some positive steps we can take to keep from living with constant exhaustion. Here are a few ideas.

  • Talk with your primary physician about the problems you are having with insomnia. While I personally do not take any type of prescription sleeping pills, that may be an option for some. Personally, when my PCP has tried this the side effects were worse than the insomnia itself. But your doctor may have some other recommendations that would be helpful in this area. For example, some medications or combinations of medications can actually cause difficulty sleeping or aggravate a problem you are already having in this area, and there may be a different medication that would help with the symptoms without keeping you awake at night.
  • Watch your diet. Caffeine and chocolate are stimulants, and used in the late afternoon or evening can make it difficult to get to sleep. Foods containing sugar can cause a spike in blood glucose levels and make you restless instead of sleepy. Spicy foods and foods high in protein and fat, especially when eaten in large amounts and late in the evening, can keep you awake when you need to go to sleep. If possible, eat early so your food will have time to begin digesting before bed time. And limit fluid intake for at least three hours before going to bed so you don’t have to get up frequently during the night to urinate and have difficulty getting back to sleep.
  • Get some sunshine daily, whenever possible. Regular exposure to sunlight helps keep vitamin D levels within the normal range and prevents daytime drowsiness and nighttime restlessness that are symptoms of vitamin D deficiency.
  • Add some exercise to your daily routine.If you are too sedentary – which is another problem often associated with chronic illness – this often adds to problems with impaired sleep. Find a way to add regular aerobic exercise to your daily routine at least five days a week, working up to 150 minutes of exercise per week. If you’re not sure what exercise is appropriate with your medical condition(s), ask your physician for a recommendation or if possible for an assessment by a certified physical and/or occupational therapist to help you set up a safe exercise program. I did this after a major surgery on my cervical spine about a year and a half ago, and since I was homebound at the time I had both a PT and an OT come to our home to get me started on a safe exercise program. But don’t wait until after supper to exercise, as this can actually make it more difficult to fall asleep.
  • If you feel extremely tired during the day, a short nap may improve your alertness and ability to concentrate. But nap in a comfortable environment, preferably with limited light and noise, and do so early in the afternoon and for no more than forty-five minutes. Sometimes a simple time of resting without napping will also help. But avoid longer naps or those later in the afternoon which can disrupt your nighttime sleep.
  • Limit or eliminate back light devices and bright artificial light before bedtime. Watching television late at night, working on your computer, even reading an e-book on your iPad or other tablet to relax at bedtime can all contribute to sleeplessness. Even over-exposure to artificial light can cause difficulty getting to sleep. Whenever possible, use low-wattage bulbs and turn off your television and computer or tablet at least one hour before going to bed. And if you want to read to relax at bedtime, make sure you use a regular book or an eReader that requires an additional light source.
  • Maintain a consistent bedtime routine. Make sure your bedroom is dark, quiet, and that the temperature is neither too warm nor too cold. Go to bed and wake up at the same time each day, even on weekends. And don’t allow sleep problems to become a cause of anxiety. If you do all you can to get a full night’s sleep, and you still wake up in the middle of the night and can’t get back to sleep, realize that any rest is better than none. If you feel restless, take some time to listen to some relaxing music or meditate on some encouraging verses of Scripture, but then turn off the light, close your eyes and rest until it’s time to get up and start another day.
  • Finally, remember God is in control, ruling in love and wisdom over our world whether we are awake or asleep. When you lay down to go to bed for the night, lay down your anxious thoughts as well. As you powered down your computer at least an hour below heading to bed, it’s now time to power down your mind and turn everything over to the One who never sleeps or slumbers (Psalm 121:4). Relinquish control to Him, relax and go to sleep. Almighty God is still on His throne, and He can handle anything that might happen before it’s time for you to begin a new day. Close your eyes and go to sleep, confident He will make you dwell in safety through the night.

I Am Doing A New Thing

For the last two years, God has clearly put a specific word on my heart for a Word of the Year. In 2016 it was JOY. I learned that JOY is found in our relationship with the Lord Jesus Christ. And I began forming a new habit of CHOOSING JOY when I didn’t always feel it in my emotions.

In December 2016, I again received clear direction from God for a Word of the Year for 2017. HOPE was the word I heard repeatedly in prayer, as 2016 came to an end. Again, it proved to be a very appropriate choice, during a year that turned out to be one of the most difficult we’ve recently been through. I shared some of the things God has taught me this year about hope in my recent blog post: https://readywriterbr.wordpress.com/2017/12/26/exploring-our-theme-part-2-still-anchored-in-hope/

As December 2017 began, I again began asking God what word He wanted me to focus on for 2018. For the whole month I prayed, but no one particular word stood out to me. Then as I was reading my Bible and praying this final morning of 2017, I sensed God speaking not a word but a phrase to my heart: A NEW THING. I did a search using one of my Bible apps, and Isaiah 43:19 jumped out at me as a clear word from the Lord.

I’m not sure what lies ahead of us in 2018, but there are definitely some signs that God is at work. My husband has an appointment on New Year’s Day that has the potential of being a major breakthrough in his dream of producing Christian movies – or possibly a total detour from God’s plan. We are moving forward with expectancy that the Lord will make His will clear.

Some of the major issues we have dealt with in 2017 are now behind us, others should be behind us in the next few weeks, and still others present longterm issues that are unlikely to be resolved any time soon. 2017 has definitely been a year of walking through the wilderness, but at no time have we been alone. God has clearly led us through this year, bringing us into a place of increased obedience to the precepts of His Word and a deeper knowledge of His nature. As 2017 comes to an end and 2018 is on the horizon, I’m taking hold of this promise that the Lord is making a way in the wilderness and will provide streams in the wasteland.

And as the new year draws closer, God is continuing to speak to my heart. REST. My new Word of the Year. This is a year to learn to REST in the Lord and in His work in my life. To REST in His promises and His character.

Exploring Our Theme, Part 2: Still Anchored in Hope

As I sat in the hospital in September caring for our extremely sick special needs son David, I wrote what I fully expected to be part one of a two part series exploring the theme of my blog. You can read that post here:  https://readywriterbr.wordpress.com/2017/09/24/exploring-our-theme-part-1-anchored-in-hope/

Then life happened. David survived his life-threatening illness, but he returned home with a whole new list of medical problems. In October and November, my time was occupied with managing his care and with my leadership team responsibilities with God-Living Girls with Chronic Illness Facebook group. Other than a couple quick Five Minute Friday posts my blog was quiet. December has been filled with daily Advent posts on the names of Jesus.

As 2017 comes to an end, a year in which I chose Hope as my Word of the Year, I feel it’s time to reflect back on what God as taught me this year about Hope. 

What is Hope?

  • First, biblical hope is not wishful thinking. True hope – even when you look up the definition in a reputable dictionary such as Merriam-Webster – is closely tied with confident expectation of fulfillment.
  • There are two Hebrew words usually translated hope in the Old Testament. The first, yachal, is a verb and includes the idea of waiting (usually on God) with an attitude of hopeful expectancy. The second, tiqvah, is a noun and is used in reference to the ground of our hope or the things hoped for.
  • In the New Testament, the main Greek words translated hope are elpis (noun) and elpo (verb). Elpis is probably best translated expectation and can refer to expectation either of good (resulting in hope) or of evil (resulting in fear). When translated hope, the noun is used to refer to the object of our hope (the Author of hope, the One who is its foundation) or the result of our hope (especially the joyful and confident expectation of eternal salvation). The verb form, elpo, means to anticipate, usually with pleasure.

What has God taught me about hope this year?

  • The most practical lesson I’ve learned is that hope is especially needed during seasons of waiting on the Lord. This year has been filled with lessons on waiting, and having hope during those times has made the difference between walking in victory and falling in defeat. When Isaiah 40 speaks of waiting on the Lord, the Hebrew word used is yachal, which is often translated hope. The two concepts cannot be separated.

Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.” Isaiah‬ ‭40:30-31‬ ‭ESV‬‬

  • Another concept which God has taught me this year is that biblical hope is one of the most important factors in not being shaken by difficult circumstances. When storms come against us, we need an anchor to hold us firm. According to Hebrews 6:19, Hope is that anchor.

We have this as a sure and steadfast anchor of the soul, a hope that enters into the inner place behind the curtain,Hebrews‬ ‭6:19‬ ‭ESV‬

  • A quote by the late RC Sproul of Ligonier Ministries explains this better than I can.

“Hope is called the anchor of the soul (Hebrews 6:19), because it gives stability to the Christian life. But hope is not simply a ‘wish’ (I wish that such-and-such would take place); rather, it is that which latches on to the certainty of the promises of the future that God has made.”  RC Sproul

Many times this year, circumstances have felt overwhelming. I found myself in need of something stable to hold onto. I found that in reading and believing the promises of God’s Word and in trusting what Scripture reveals about the nature and character of God. By God’s grace, I would latch on to one of these and be strengthened to keep going. The storms didn’t go away, but by anchoring myself in God’s character and promises, the “boat” of my life did not capsize.

As 2017 comes to an end and I pray about a new Word of the Year for 2018, I still have much to learn about biblical hope. I’m sure God will continue revealing new truths to me in this area. My hope has grown this year, but I definitely still have room to continue growing and several still unresolved issues where increased hope is needed.

During this year of focusing on hope, there have been many songs which have encouraged me to hold on to hope. I’ll close by sharing my favorite, one that has repeatedly strengthened me during this difficult year.

Jesus, the Author and Perfecter of Faith

Hebrews 12:1-3 is one of my favorite Scripture passages, one I turn to repeatedly when I’m growing weary from walking through the difficult circumstances of life with chronic illness, with having a medically fragile and mentally handicapped son, and just when facing the day-to-day trials that are a regular part of life on this earth marred by sin.

“Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted.” Hebrews‬ ‭12:1-3‬ ‭ESV‬‬

These words remind me to turn my eyes off of what I’m walking through and turn them on the One who is in control. The One who is using even the hard things that life throws my way for my good and His glory. They empower me to continue running the race He has set before me.

But these verses also contain a very important name of Jesus. He is “the author and perfecter of our faith” (wording from NIV 1984 version).

  • As the Author of faith, Jesus is the beginning point of faith. The Greek word used here, archegos, has also been translated Prince, Captain and Founder. According to Vines Expository Dictionary, it primarily signifies “one who takes a lead in, or provides the first occasion of anything.” The same Greek word is used earlier in the book of Hebrews of Jesus as the founder of salvation.

“For it was fitting that he, for whom and by whom all things exist, in bringing many sons to glory, should make the founder of their salvation perfect through suffering. Hebrews‬ ‭2:10‬ ‭ESV‬

  • As the Perfecter of faith, Jesus is its Completer, Finisher and Perfecter. The Greek word used here is teleiōtēs, which comes from a root word meaning “to carry through completely, to accomplish, finish, bring to an end.” Though the actual Greek word used for Perfecter in this verse is not used anywhere else in the Bible, the root word is used in many verses. Most applicable to our current study, it is used to describe Jesus, who though already without sin, learned obedience through suffering (Hebrews 5:8).

“And being made perfect, he became the source of eternal salvation to all who obey him,”‭‭ Hebrews‬ ‭5:9‬ ‭ESV

  • Modern translations specify the faith that is described in this verse as our faith. In the original Greek, the article used in this verse is properly translated “the.” The faith Jesus originates and perfects is a strong conviction that Jesus is the Messiah (in Greek, the Christ) and that He is our source of eternal salvation.

As the Author and Perfecter of faith, Jesus Christ is the perfect example of a life walked in faith. During His days as Immanuel, God with us in human flesh, He unswervingly walked the path of faith, modeling for us the life of faith.

I’m very grateful for this example, laid out so clearly in the gospel accounts of His life, Matthew, Mark, Luke and John. When I don’t know the right, God-pleasing way to walk through the trials of life, the gospels provide a clear guidebook to direct my path.

 

Trust In the Lord

Today, I am linking up with Tuesday at Ten, the weekly blog link-up where you have six days to use the prompt word of phrase as a part of your writing. This week’s prompt word is TRUST.

Twenty-first birthdays are usually a time for celebration. Our child is now an adult. Our job of training our son or daughter in the fear and admonition of the Lord is basically over. And our young adult is now ready to spread his wings and set out into the future. But with our son David, none of this was true. David would never be ready to live on his own because of his extensive medical needs.

David had massive infantile spasms as an newborn, resulting in severe brain damage. And his condition had deteriorated to the point where he was now totally dependent upon others to meet all of his needs. He had a long list of medical diagnoses, and was tube fed and bed bound.

Prior to his twenty-first birthday, David had received services through the Texas Medicaid children’s health program (CCP), and through it he received 112 hours per week of private duty nursing care in our home. But in Texas, Medicaid recipients lose their eligibility for CCP services when they turn twenty-one. His other Medicaid program, Home and Community Services (HCS), had a cost ceiling that would only allow him to receive four and a half hours of nursing services a day. The Department of Aging and Disability Services (DADS), the regulatory agency over David’s Medicaid programs, decided that the HCS program was no longer a safe placement for David. In essence, the only options they were giving us were to take care of David’s extensive needs (both medical and financial needs) on our own, or put him in a state school.‬

After talking with David’s neurologist and pulmonologist, and also visiting the state school closest to Houston, we knew this wasn’t an acceptable choice. David’s doctors said that he probably wouldn’t survive six months with the level of care he would receive at the state school, and even the nurses at the state school said they would not be able to meet his needs. Because of my own disabilities, there was no way I could meet David’s needs on my own, and my husband was at work during the daytime hours. So we began sharing our situation with our church and asking for prayer. We were facing an impossible situation, and we desperately needed God to intervene. And I was facing one of the biggest tests of my decision to trust God, not only for salvation but for every detail of my life. I felt overwhelmed, but to the best of my ability tried to hold onto hope that God would move on our behalf.

According to the Merriam-Webster Dictionary, trust is “assured reliance on the character, ability, strength, or truth of someone or something.”  Trust in God is confidence that what the Bible says about God’s character, ability and strength is true. Was God really in control of this situation? Would He be faithful to make a way for us to continue to care for our precious son in our home? Could God really be trusted,  even in this situation?  We chose to believe God was who He said He was and would do exactly what He said He would do, even if at the time I felt like I was shaking in my boots. We committed the entire situation to the Lord in prayer, then asked Him to show us what steps He wanted us to take.

The first thing I sensed God telling me to do was to send out prayer updates to our friends.  This was before most people were on Facebook, so every couple weeks I send an update by email. Then one day when I was praying, God brought the name “Advocacy Inc.” to mind. We had never used this advocacy agency for people in Texas with disabilities, but I had repeatedly heard about it during the yearly planning meetings while David was in a home bound school program. So I contacted the Houston office of Advocacy, Inc., now called Disability Rights Texas, to see if they would be willing to take David’s case.
This was the beginning of the solution to our “impossible” situation.  Because of the precedent-setting nature of David’s case, the two head attorneys from the Austin office decided to take our case.  Then through a series of hearings and court filings, we finally had the settlement we needed. David would continue to receive the same essential homecare services that he had received prior to turning twenty-one. As we obeyed the steps God gave us, God had turned around a situation we in our own strength saw no way out of. And in the process, a legal precedent was set that has helped other families in Texas who were facing situations similar to ours.

David is now thirty-one years old, and we know that this battle was worth the pain involved. We saw that God really could make a way when there didn’t seem to be a way, and our trust in our Lord and Savior grew. We had learned not to lean on our own understanding – which showed us no way out of this situation, submitted to the Lord by taking the steps He led us to take, and watched in amazement as He straightened a path that in my eyes looked impossible before our eyes.