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Tuesday, February 10, 2015
The back yard is presently a winter wonderland, not a place where we linger like those warm summer months, but Mollie enjoys all the seasons. Last night we had freezing rain cover the surfaces, so she enjoyed skating or I should say sliding across the deck.
A Special Parent
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“What is your servant, that you should notice a dead dog like me?” (2 Samuel 9:8). "As He (Jesus) passed by, He saw a man blind from birth" (John 9:1).
This week we are considering "Hidden Heroes", those who faithfully serve others with no desire of gaining attention or acclaim. Yesterday we considered a family's faithful journey with a husband and father who had Alzheimer's Disease.
Today we want to share a message about Barbara Parent, a reader who lives in Iowa, whom we have never met face to face but as a recipient for many years of our messages she has communicated with us via telephone and more often by sending us uplifting notes.
Barbara's 24 year old twins, George and Joe, were born June 11, 1990. Both were diagnosed with epilepsy and autism. Their epilepsy is the result of a brain malformation resulting in grand mal seizures. The seizures started when the boys were 17 months old. After the initial visit with their neurologist the Parents were assured both boys had a form of epilepsy known as febrile seizures. Since this form of seizing activity is primarily present with a high fever the doctor was confident they would outgrow the seizures by the age of six. Only two years old at the time, they had a long way to go. At five years of age the seizure activity began to occur not only during a fever but other times. Results from the MRI’s and EEG’s confirmed the brain malformation and changed their prognosis to a lifetime of seizure activity.
While gaining an understanding of the seizures the Parents were also trying to figure out why the boys were not progressing and hitting the normal baby milestones. Things like rolling over, sitting, crawling, pulling up to furniture, and eventually walking. At ten months of age the pediatrician noted their developmental delay and provided information for intervention services. Sadly, their dad refused to accept that his children were not average. It took another 19 months to convince him they needed help which was the beginning of the ongoing, ever increasing struggle between Barbara and the boy's dad. Eventually the conflict brought their marriage to an end. The boys were seven years old when the three of them packed up in New Jersey and unpacked in Iowa. There have been many ups and downs. Barb admits that she often feels inadequate. There are moments when she begged God for an end because she felt she couldn't continue to carry the load. Through the past 17 years there have been so many attacks of the devil, too numerous to count. But for every struggle, she acknowledges that God was always by her side.
In Barb's words: "I was barely walking with Jesus when the boys were born. Although I was born and raised in a family where we attended church every week, summer camp, and youth retreats, the actual practice of being a Christian in our walk and talk was not a part of who we were. Oh, we knew the difference of how to act and talk when we were at church but that was entirely different from work and school. Not until after I was on my own with the boys did I realize the need to get serious in my walk with Jesus. The only way to get to know Him more was to spend time with Jesus, in prayer and in the Word. Because of this I have come to understand the peace that passes all understanding. Now, when negative moments come along, I am better able to say, “Lord, this is yours to handle.” Whenever I feel inadequate or like I am being a bad mom, I realize I am doing my best for where I am, at that moment, on my path. As long as my best is in line with God’s will for my life then nothing or nobody can change what God has in store for us."
The boys' seizures vary from 1 or 2 a week to as many as 12 to 15 per day. Physically they are 24 years old but mentally they will always be 3 to 5 years old. She bathes them, clothes them, and changes diapers for one son. Barb is an amazing mom who tenderly cares for her boys with such an exuberant and loving devotion. We include additional details regarding her demanding role below our main message.
Today we consider the hidden heroes to be those extra special parents and other caregivers who care for those with special needs. We have met many through our course of ministry. In fact it's a regular discussion topic in our chaplaincy.
We don't specifically read much about "special needs" in the Bible as we now use the phrase. One example might be Mephibosheth who expresses one of the saddest expressions in the Bible concerning self-esteem. When David expressed kindness to him he responded, “What is your servant, that you should notice a dead dog like me?” (2 Samuel 9:8). Since dogs were not valued by the Hebrew culture (in the same sense we do as pets) this self-description packs a double whammy, kind of like me referring to myself as "a dead skunk".
But David models the love of God when he sought Mephibosheth out and made a place at the King's table for him, "like one of the king's sons", not just for the evening but for the rest of his life. He gave him land and appointed servants that provided for his needs. More than monetarily caring for Mephibosheth, he raised his esteem treating him as a son. Can you imagine what that did for Mephibosheth's emotions! This is an excellent illustration of generosity and grace exhibited in the Old Testament, a warm and caring example for those of us who want to make a difference to those tagged as "the least of these".
Today we recognize outstanding parents and other devoted caregivers who are extending themselves way beyond the norm to care for those like Mephibosheth, with great needs. In a sense they are practicing our Lord's words when He calls us to serve "the least of these" (as judged by the standards of the world).
May He grant them sustaining strength, enduring patience, overcoming love and abundant grace.
Be encouraged today,
Stephen & Brooksyne Weber
Daily prayer: Father, when we hear or read stories about outstanding parents like Barb the first thought that fills our mind is, "I could never do that." That's because we are not equipped to do that which You have not called us to do. And yet we are all called to bear one another's burdens, so we pray for these special caregivers, reach out to them in love, and assist them in matters that helps lighten their physical, financial and emotional burdens. The Psalmist wrote that "God sets the lonely in families." We thank You for the family unit where we look out for one other, serve each other in love, and provide as best we can for each other's needs. Bless those who bear a heavy load, whose everyday life, is not the average life. At times these special caregivers deal with feelings of loneliness, being ostracized from public settings or other people's homes, even churches, where their children just won't fit in due to their particular issues. Watching other average families raise independent, achieving children can stir up feelings of envy and self-pity, that life just isn't fair. Show them how to live in the perspective of the eternal, raising their sights above the here and now to the glorious heavens where no sickness or impairment will enter. The troubles we're given on this earth is achieving for us an eternal glory that far outweighs them all. Help our dear friends never to give up in despair nor to give out in exhaustion. Instead help them to stand strong in the power of Your might. In the loving name of Jesus we pray. Amen.
Additional info from Barb on George and Joe:
So much of my life is spent doing for them I don't see the lengths to which I go to care for them!! Some triggers that bring on their seizures:
Yesterday's message prompted several comments we will share:
* A Pennsylvania reader wrote: "Today's message hit home as I've been caring for my wife since her 2008 diagnosis of Alzheimer's Disease. She has slipped quite a bit in these 7 years, but we still enjoy a useful life as we minister to others who live in our Senior Community. Her daily Bible reading seems to be a comfort to her and many times the very best days are those we spend in worship, Bible study, or visiting those who are very ill. This is truly a time to remember that Jesus never said life would be easy; and the many trials will test our faithfulness. We're both committed to doing our best." Jim
* A report we received from a friend concerning a mutual friend who now has Alzheimer's: "She is 58 and was diagnosed about a year and half ago. The last time we had lunch with her and her husband was the very beginning of December. I could tell we are starting to lose her. They love visiting with you and think so much of you and your ministry." Tina
* A longtime reader from Texas shared about his niece who is married to a man whose family has "Early Onset Familial Alzheimer's". "He was diagnosed with it when in his forties. He and his wife fly to Pittsburgh every year, where the University of Pittsburgh Hospital tests him. He has a several hour brain scan, which is compared to his past scans.
Every month a specialist spends several hours with him doing follow-up testing. It is from his father's side of the family, as far as the researchers can tell, and they think it may be genetic. His father died in his mid-50s, as has a brother, and sister, and his other brother and a sister have it, and are in specialized homes to be cared for. One sister does not have it. One sister donated her brain for research, and after she passed, her brain was taken to Pittsburgh for study and mapping.
His son and two daughters have been tested, but I don't believe any of them want to know what the tests indicated. There are, last I heard, two families in the United States with this condition. It is hard to see someone in their early 50s, beginning to show signs of the disease taking control, and nothing anyone can do about it. Yes, they are heroes." Jim
Last week we shared about Edward Berkey, a former District Superintendent I had in New England. I was not aware of this connection till Jack and Milly Provard, longtime friends in a completely different ministry context wrote to share: "Thanks Steve for highlighting two of our friends, Rev. Phil Bongiorno, a Bible school classmate, and my home pastors, Rev. Edward and Gladys Berkey! The Berkeys married Milly and me over 60 years ago! "Praise God from Whom all blessings flow!" It's quite a ministerial accomplishment to get to the point of having a couple you married hit the 60 year mark!
Today's Suggested Music and Supplemental Resources
"Hidden Heroes" Video The Talleys This song deals with both a special needs child and Alzheimer's Disease. It prompts this week's messages.
"What It Means To Be Loved" Video Mark Schultz
"Walking Her Home" Video Mark Schultz I should have used this song yesterday! It will touch your heart!
"Your Child" Video Jennifer Shaw A song celebrating every life
"The Life That's Chosen Me" Video Karen Taylor-Good
"Ryan's Song - Shine" Video Autism Song
"In Heaven's Eyes" Video
"Carried To The Table" Video Leeland A song based upon the story of Mephibosheth and applying to our redemption in Christ!
Waterboy with Down Syndrome Scores Touchdown Video
When Ester began attending Donegal High School (2005-2007) she told us right away about her new friend, Allen who was popular with the entire school body, yet Ester considered him to be her very good friend. There is much teasing and bullying, as there always has been, in schools these days but we also see students like Allen being elevated and befriended by the entire student body in some instances. Tragically some that are bullied can't see past their present experience. They internalize their pain and feelings of rejection, and prematurely end their lives or, worse, seek to destroy other innocent lives. They don't consider that many other students are teased and bullied to some degree and eventually school will only be a memory. Over the past few years I've (Brooksyne) reconnected with a number of my friends who attended Jane Addams Elementary in Tulsa, OK. I consider how some were teased and bullied, and yet they went on to make for themselves a productive life and loving families. If only students could have that perspective during their turbulent adolescent years they might better manage their emotions. Better yet, they need to walk closely with God who sticks closer to them than a friend. We, as believers, need to come alongside those who struggle with fitting in and give them genuine, loving attention. We have four neighbors with special needs, ranging from mild to severe. Ester has her own struggles, mostly due to her health history, and I know how she feels to be loved for who she is. I've reached out to our neighborhood families and they are so appreciative, just the fact that I take time to talk with their child one on one. The parent has often let me know how much it means to their child and to them as a parent (one "child" is now in her 40's.)
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