Our Gift from God

Our Gift from God by Kathy Hunter

A Third Little Blessing from the LORD     When John asked, “You wouldn’t want to miss a third little blessing from the Lord, would you?” What could I say?  We had 2 little girls and I had felt that was all we needed, because I only have 2 hands.  I told him if he guaranteed that there would be no more, I would have another.  So when our youngest daughter, Heidi, was 4 along came Matthew.  Heather was 6.  John quoted Psalm 127:4-5  “As arrows are in the hand of a mighty man; so are children of the youth.  Happy is the man that hath his quiver full of them: they shall not be ashamed, but they shall speak with the enemies in the gate.”  Two didn’t fill his quiver with enough arrows…..

I had been in labor on August 4th,  1980 most of the day having gone to the House of the Good Samaritan Hospital in Watertown, New York, early in the morning. (We lived in Dexter about 17 miles away.)  The pains were very erratic, sometimes coming quite fast then slowing down.  The Doctor came in about 4:30 in the afternoon and said, “We don’t have any commitment here.  If her water doesn’t break by 6:30, feed her and send her home.”  Knowing that you don’t eat if you are going to have a baby, I ate what was liquid, and went to where the family was that was taking care of the girls.  About 11:30 P.M. the pains started coming fast and hard.  I had to go to the bathroom and it was on the second floor.  It was very hard mounting the stairs with labor pains coming so hard.  After that, we got in the car and John turned on the four-way flashers and drove as quick as he could back to the hospital.  Since I had been there earlier in the day, I was ushered right in and was already prepped, so it didn’t take long to get ready.

Of course, the Doctor didn’t make it for the delivery.  He was 25 miles away at his cottage on the lake.  The nurse, who was a Christian lady, was really great.  She worked my membranes around the crown of his head and encouraged me through it.  John was there too, helping in the encouraging department.  The Doctor arrived just after Matthew was born at 1:10 A.M.  I didn’t detect anything amiss with him, but I was in recovery until 6:30, because I was hemorrhaging.  John had left after he got to hold him and went back to the home where the girls were staying.  He talked with the couple and broke down and cried.  As it drew towards morning, Heather came downstairs and said, “Daddy, what’s wrong?”  John thought for a minute about the sovereignty of God and replied, “Nothing is wrong, not a thing in the world.”  He found the peace he needed as he considered what he had to say to his daughter. God was on the throne, all was well.

When he returned early in the morning after I was taken from recovery, he said he had something to tell me, “Matthew has Downs Syndrome!”  I said, “Why didn’t you tell me?”  He said, “I had to get a handle on myself, so I could be a help to you.”  The Lord has given me such a good husband.  He has been a great strength to me all through our marriage as well as at that time.

At 10:00 that morning I was scheduled for a tubal ligation.  As I was being wheeled out on the gurney, my pediatrician, Dr. Gordon Moreau, stopped me and asked if maybe I was being a little hasty in my decision to have this surgery.  He suggested that maybe I would like to have another child that was perfect to make up for Matthew’s disability.  I told him what I had told John, three was all I wanted, perfect or imperfect.  He went on to say that it was factious to say, but if you had to choose a child with a “handicap,” Downs would be the choice because they are so loving.  I appreciated his concern and was blessed by the fact that he didn’t have a problem with my child.  The other doctor in the practice thought God had pulled a mean trick on us since John was one of His servants.

Looking back on my pregnancy, I had known there was a possibility that he would be Downs.  I was 37 when he was conceived and 38 when he was born.  My Doctor wanted to do an amniocentesis but I told him we didn’t have insurance and I wouldn’t kill my baby if he was Downs.  I had read 2 books on Downs Syndrome that I got from the library.  One was very technical about the characteristics of “trisomy 21” and case studies of what goes wrong so that somehow a chromosome is broken so a person has 47 instead of 46.  The second book was a sweet story about a family in England that had a Downs’ child and went against all advice from the medical field to have him taken away to an institution and forget that they had a child.  That child was treated and taught like a normal child and achieved things never thought possible by someone of his ability.  I was encouraged by that to believe that if I did had a Downs child it would be all right.  The Lord knows what He is doing.

However, knowing it and practically experiencing it are two different things.  I would assume part of my problem after his birth was postpartum depression, but I was unable to close my eyes and pray when we had family devotions, because the tears immediately started to flow.  I didn’t “feel” like I had a problem accepting Matthew’s condition, but I still couldn’t keep from crying when I closed my eyes to pray.  After a week or two of this, John told me I needed to get under control, because it was affecting the girls.  They were and continue to be sympathetic whenever there is a sad situation.  I decided to pray with my eyes open, because I didn’t have a problem then.  The Lord was gracious, and after a while I was able once again to pray with my eyes closed.  Isaiah 26:3 was a blessing to me:  “Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee.”  It wasn’t until later that I read the next verse and was blessed again:  “Trust ye in the LORD for ever: for in the LORD JEHOVAH is everlasting strength.”

The Early Days     Matthew was accepted by our girls and they were protective of him.  Our Church family accepted him and they were supportive in every way.  A dear sweet relative of one of our friends wrote a poem about him.  We didn’t know when we named him that “Matthew” meant “gift of God.”  Her poem was about that very fact, that the Lord gave us this special child as a gift.  It was a blessing to me.

One of the things the hospital staff did was to suggest that we have a family with a child with Downs Syndrome come and share with us their experience.  That sounded like a good idea, so a couple weeks after he was born a family with an 8 year old boy came to visit.  They scared me to death!  Their child was at the lower end of the abilities of a child with Downs.  He didn’t put his legs down into a standing position until he was 18 months old.  He was taken to a Developmental Center from 8:00 in the morning until 2:00 in the after noon just about from birth!  I didn’t want to be separated from my baby every day!  Well, Matthew was much different than their child.  We did take him to a Developmental Center, but only one day a month to be evaluated and given suggestions for helping him with his growth and development.

However, Matthew did have a heart murmur, and was put on dijoxin for the first 6 months of his life.  Also, he was hospitalized at 3 weeks for “failure to thrive.”  I thought, “What am I doing wrong?”  I didn’t have a problem nursing the girls.  But Matthew was different.  He was weak in his nursing so he was given bottles in addition to nursing at the hospital.  He was there for 5 days and was doing fine again.  But then at 6 weeks he started to projectile vomit and it was yellow.  Yuck!  I took him to his pediatrician and he sent him to the hospital.  We were there for an examination.  They said his stomach was distended and something was wrong that he would be projectile vomiting. They suggested that we needed to see a Doctor in a hospital in Syracuse, 60 miles away.  We took him, and we were seen by a Dr. David Dudgen, a pediatric surgeon.  He told us Matthew had Hirschsprungs Disease, a constriction in the colon that wasn’t flexible.  It would let some bowel movement through but not enough.  He said our options were to give him a colostomy until he was big enough for corrective surgery or leave him the way he was and give him enemas every day.  The last option would eventually lead to an infection and he would not live long.  I was horrified that he would even suggest that, but he said he had to give us all options, since he had Downs.  I told him we wouldn’t do less for him than we would for any other of our children, so we went with the surgery.

Needless to say, a colostomy isn’t much fun to take care of, but it wasn’t any worse that changing diapers, except that you had to prepare the bag to fit the opening.  We had someone come and teach us how to take care of him, so everything went fine.  When he was 9 months old, he had his corrective surgery.  I was glad for the timing.  He had never noticed his bag until I gave him a bath at the hospital the night before his surgery when he pulled it off!

Regarding his heart murmur, he was seen by a Pediatric Cardiologist when he was 6 months old, and they told us whatever Matthew’s problem was, it had corrected itself.  He was fine.  However, he should be checked again when he was 2.

Matthew was a pleasant child and did all the normal baby things just at a slower pace than most children.  He was walking by the time he was 15 months old and saying a few things, but not quite like we said them.  He was contented to sit on the carpet playing with his toys next to us while we home schooled the girls.

When he was eleven months old, we moved to Birmingham, Alabama.  We found a new pediatrician, but we no longer had insurance.  So, it was more difficult to pay for his appointments, but we were able to keep him up to date on his shots.  When he turned two, we asked the Pediatrician about a heart check up, and he thought it wouldn’t be necessary, especially since we didn’t have insurance to pay for it.  He appeared healthy.  We figured he knew what he was talking about, so we didn’t have him checked.

Other Difficulties     A month after Matthew turned 2 he tried to take a drink of John’s cup of tea he had just poured.  The tea kettle had boiled on the stove for several minutes before John got to it so it was very hot.  Matthew was in another room when John poured it and while John was refilling the tea kettle, Matthew came in and tried to take a sip.  He had 1st – 3rd degree burns on his mouth, chin, chest and tummy down to his diaper as he wasn’t wearing a shirt.  We scooped him up and headed for the nearest hospital.  I held him while John drove.  Matthew kept trying to rub his chest, so I held his hands so he wouldn’t make his burn worse.  The first ER we took him to gave him a shot for pain and bathed him with ice water and said we needed to take him to Children’s Hospital another couple miles away.  He was greeted and cared for immediately, and placed in a room.  Their visiting hours limited us to seeing him 8 hours a day.  We couldn’t stay with him around the clock as we had when he was in the hospital for his heart surgery, because of hospital policy for burn victims.  They had to put a suave on him and remove the dead skin which took place in the morning.  In his little mind I suppose he thought they were just being mean to him, but it had to be done.  He was in the hospital for 10 days.

When I went in to see him the next day, he looked at me and turned his face to the wall.  He didn’t want anything to do with me.  It broke my heart.  Any time he was hurt in the past he always associated it with who was closest to him.  Because I held him on the way to the hospital in this case, I was at fault in his mind.  He had always been so happy and glad to see any of us at any time, but he was a completely different child.  He eventually got over his animosity towards me, and we had a loving relationship again.  However, he went from a happy boy who would go to anyone to a boy who screamed if he went out of our presence.  I couldn’t leave him in a nursery at Church or with friends.  We lived next door to a very vivacious lady who played games with him whenever she was around him.  He got to where he was able to stay with her for short periods of time when we needed her.  As always, Romans 8:28 was in effect:  “And we know that all things work together for good to them that love God, to them who are the called according to his purpose.”

Part of the aftermath when we brought him home included his not being able to walk.  It took him 3 weeks before he could walk normally.  I assume it was because he was so weak.

Matthew was plagued by pneumonia and bronchitis several times every year.  However, when he was six years old he had an ear infection, and because it was on a weekend, we saw a different doctor.  This doctor asked if we knew Matthew had a heart murmur, and we said yes we knew that.  He said when we go back for the ear recheck 10 days from then to ask his doctor about the heart murmur.  When we did, the doctor immediately made an appointment with a Cardiologist in Birmingham.  He had 2 holes in between two chambers of his heart.  He needed to have open heart surgery.  When it came time for him to have his surgery, he had pneumonia, so it had to be postponed.  When he was recovered from the pneumonia, we took him to University of Alabama Birmingham Hospital where he had an atrio-ventricular repair—a valve that pumps blood to the lungs was replaced and the holes fixed.  The next day he started coughing, and I said that sounds like his pneumonia cough and sure enough, he came down with pneumonia and had to stay an extra 6 days in the hospital.  Medicaid covered twelve of the nineteen days.  The Lord was faithful and though it took a while, we did get it paid off.  If we had taken him out of the hospital and had him readmitted, they would have covered it.  We knew of this but with Matthew being on a heart monitor and being weak, we didn’t feel we could do this.  We rejoice that Matthew has not had any bouts with pneumonia, and only had bronchitis a few times since.  What an amazing thing this has been for him to be healthy for all this time.  He is now thirty years old.

School     Matthew started at three to attend the East Alabama United Cerebral Palsy Center in Anniston, 3 days a week.  They helped him with his developmental skills and socializing.  He was an endearing child, and was loved by the staff.  It was a hard time for me but I was able after about a week to let him go without being torn apart.  He attended until it was time for him to start kindergarten.  He was enrolled in Cleburne County Elementary in Heflin, Alabama, and was placed in a regular class room.  I was wondering how this was going to work, being mainstreamed.  After three weeks, it was determined that he should be in the Special Education class room and join the kindergarten class for recess and lunch as the teacher had him sit on the floor and play while she taught the rest of the class.  They wanted to know why they couldn’t play.  This proved to be a practical solution and was also followed in first grade.  However, the next year we moved to Bynum, Alabama, and he then attended the Welborn Elementary School.  He was in the Special Ed class there and occasionally had opportunities to be included in the regular class room.  I was pleased with all of his teachers as they were professing Christians, and seemed to have a real heart for working with children with disabilities.

All through school he was involved in Special Olympics.  He ran the 50-100 yard dash and participated in the broad jump, the softball throw, roller skating, swimming, and bowling.  He has lots of ribbons, but never really excelled at any given sport.  He played basket ball in High School coached by his teacher or his father.  They didn’t win often, but had a good time trying.

His high school experience was geared toward vocational training, so he did not get a great deal of academic instruction.  They taught life skills as well.  He has never caught onto real counting.  He could count, but when it came to money he did not recognized the value of the various denominations of coins and bills.  If you gave him a $20 and 5-$1s, he thought the 5-$1s were more than the $20 because it was only one bill.  He worked in the school lunch room taking out the trash, sweeping the floors and cleaning tables.  The class also worked on recycling cans, cardboard, and newspapers.  Another project was gardening.  They sold plants to the public that they started from seeds utilizing a couple green houses.  They also shelled pecans and sold them to the public during the holidays.  He “graduated” with an attendance certificate.

Matthew’s reading skills were not good.  The teacher reported that he recognized 11 of the 26 letters of the alphabet.  I was disappointed with that, but if he was going to work, he could do things that didn’t require reading.  They did have him print his name, address, birthdate and phone number until he could do it from memory.  They tried him on several jobs out in the work world, one of which was bagging groceries in a grocery store.  He did fine bagging, but because it was Friday a number of people were buying alcohol products, and because of the police shows that he had watched on TV he told people they were going to jail, because they would get drunk and do bad things.  Needless to say, he didn’t fit into that job.  But we couldn’t fault him on his attempt to try to deter people from drinking.

His reading skills did improve to where he could read Dick and Jane books.  How did this happen?  He told his sister Heidi he wanted to read the Bible.  She had been attending one class a week at a local college, but she said she would give that up and spend that night teaching Matthew to read.  She did this for several years.  He was able to read when he was at her house, but it never computed when he left, and we would try to get him to read something at home.  She had him read several simple Bible verses and he was pleased with that.

Work     Upon graduating, he was employed at a sheltered workshop called the Opportunity Center.  Here he worked a regular six hour shift, and had a number of different jobs.  His favorite was working on the press.  He also bagged parts for fans and other types of piecework.

All was not perfect with Matthew as it is not with any of us, because we are depraved.  He made some mistakes and paid for them by being suspended for a couple days or cleaning the mess he made, but only a couple were really bad, and he learned from them.

Matthew was a man who wanted to work, so when there wasn’t work to do he wasn’t happy.  He worked there for about 3-4 years and then got laid off.  He was supposed to get hired back, but he “wasn’t versatile enough.”  He sat at home for a year or two, and then got hired on at another sheltered workshop, Action Industries, where he still works today.  Their work projects were even less skilled than at the Opportunity Center, so they had classes that taught life skills which should have been helpful to folks with disabilities, but Matthew never liked them because he wanted to work.   His jobs at Action included working a press, lawn mowing, rolling up window insulation stripping, parts bagging, building and packing boxes, working on a truck that picked up bins with paper for shredding, janitorial work and such like.  He also has cleaned our Church building for a number of years and he does a good job.  He often makes more money at that than he does in two weeks at the workshop.  If he likes a job he will work diligently, but if he doesn’t, he will find ways to avoid it.  He may say he likes it, but then finds he doesn’t want to do it after a while.  Like most of us, he is happy working a job that he enjoys.

Other Thoughts     Matthew is helpful around the house as well.  He cleans bathrooms, sets the table, unloads the dishwasher, folds towels, sorts his clothes into the laundry, changes the clothes from the washer into the dryer, vacuums, and takes out the trash.  His favorite things to do are:  listen to Christian radio programs, watch DVD’s of family oriented films, color, look through National Geographics,  go shopping, bowling, and going out with the Park and Recreation Therapeutic group.  Because he works he doesn’t get in on all of their activities, many of which take place in the morning or early afternoon.

Matthew’s speech is sometimes difficult to understand.  He has learned to try another approach when we don’t understand what he is talking about.  We have dubbed his speech as “Matthewese.”  He gets his consonants wrong in his words and sometimes shortens words.  He would call a “computer,” a “puter.”  When we only had one bathroom, and he needed to use it and someone else was in there, he would say, “Get off the ‘mode!”  As a small child he liked the nursery rhymes.  One of his favorites was, “This Little Pig Went to the Market.”  However, when he repeated it, he would say, “Went to the market, stayed home, had roast beef, had none, wee wee wee all the way home.”

Another difficulty he has is in answering questions.  If you ask him a who question or a when question, he will tell you the answer to a why question or vice versa.  It’s very difficult to get to the bottom of a situation, because of this lack of comprehension.  If you ask him a question that may be completely off the subject, he will agree with you whether it’s true or not.  In his IQ testing, he is on a five year old level intellectually and about a twelve year old level socially.

When he was twelve Heidi was taking care of him.  While she was doing something, he donned his coat, toboggan, and mittens and put a ball bat over his shoulder and left the house.  He decided he was going to hunt rabbits.  There was only one problem, he didn’t tell Heidi.  He cut across lots behind the house and went out to the highway and headed left up the hill.  When Heidi called him and he didn’t answer, she got scared and started to look for him.  She assumed he turned right and went down to the little store in town.  She apparently didn’t look to the left or she might have seen him.  We had gone to Birmingham to a meeting and were returning home and stopped at the little store to get some gas.  There was a 3”x5” card in Heidi’s handwriting on the door saying a little twelve year old Downs Syndrome boy was lost and to call our number with any information anyone might have.  Needless to say, we were heart stricken.  We drove home and Heidi had done the right things in contacting the Sheriff’s office and neighbors to look for him.  Shortly before this, the United Way chose Matthew to be their poster child representing the Arc of Calhoun/Cleburne Counties for their campaign that year.  There were posters all over town of Matthew, so there were pictures available of him for people who were helping in the search that did not know him.  John started the search and left me home to take any information from anyone who might call.  We received one call saying Matthew had gotten into a red truck about 3 miles from home.  That seemed a little far for him to have gotten.  We talked to several people who had seen this, and determined that it was not Matthew.  In the mean time, John was walking down the highway checking with all the neighbors who might have seen him pass.  One neighbor said they saw Matthew and could identify that it was him, because their son rode on the bus with him.  They saw no one was with him, and tried to talk him into staying with them in their yard, but he was going rabbit hunting.  By this time it was starting to get dark and in another half hour the Civil Defense would be called out to the search.  John was investigating an old motel about a half mile from the house.  There he found Matthew wondering along in front of the building behind some tall weeds wet up to his waist and without his mittens.  He had gone back in off the road on the other side of highway through a fence and walked around several small lakes where he apparently fell in trying to get his lost mittens.  It was November and he said he was cold, which he definitely was since he was wet.  We rejoiced that the Lord led John to him before we had to call out the Civil Defense.  We impressed upon him that he was never to leave the property without someone with him.

Besides the Special Olympics, the Arc (formerly the Association of Retarded Citizens) (www.thearc.org) mentioned above was a big help to us.  They provided support, activities, literature, and seminars that were full of information and helpfulness in our raising Matthew.  The local Arc had a summer camp every year until he was 14 which he enjoyed very much.  There are several other organizations which help with literature and support:  Down Syndrome Society (www.ndss.org) and National Association of Down Syndrome (nads.org).  Of course, searching the Internet will give you other resources.

Spiritual Insights     Many believe that people like Matthew with a disability are automatically going to be with the Lord, but in our study of the Word, we have not found any scriptural basis for it.  We believe God is sovereign, and He is in control of these things.  Matthew was taught the Word of God from the very beginning, and he was always attentive.  He would ask questions, but they often didn’t make sense, so you had to guess what he was really trying to ask, and answer as best you could.  His father, being a Pastor, was his teacher all of his life until he was twenty-seven when we went to Guyana, South America, for mission work for fifteen months.  John did not push anyone for a decision to receive Christ, but always told the children that they had to bow to Christ and become one of His children by asking for forgiveness of their sins and praying for the Lord to come into their heart and take over their life.  We have always prayed for our children to receive the Lord as Savior.  Heidi and Heather received the Lord as their Savior as teenagers.  Matthew was 21 when Heidi was talking to him one day and told him he had to bow to the Lord and ask Him to save him.  Matthew, the literalist, got down on his knee and said, “Lord, save me.”  He was changed from then on.  He witnesses to people about the Lord often and has been a blessing to many.  His staff at work spoke of his testimony when we went to an Open House to see what kind of work he did.  We have praised the Lord for the young man he has turned out to be.

Our “gift from God” has not been a great burden to us.  He is able to care for himself: bathing, dressing, feeding, and being able to stay by himself without supervision.  Heather used him as her escort when she felt the need of a man to go with her some place.  He was her “man of the house” when we were gone.

We have appreciated so much what the Lord has done for us in giving us Matthew.  He has truly been a blessing.  There were times of doubt about how to handle some things, but the Lord was always faithful.

I have often thought about the hymn below:

 Whate’er My God Ordains Is Right
Text: Samuel Rodigast (1675), Music: David Braud

Whate’er my God ordains is right,
Holy His will abideth
I will be still whate’er He does,
And follow where He guideth
He is my God, Though dark my road
He holds me that I shall not fall
Wherefore to Him I leave it all.

Whate’er my God ordains is right,
He never will deceive me
He leads me by the proper path,
I know He will not leave me
I take, content, what He hath sent
His hand can turn my griefs away
And patiently I wait His day.

Whate’er my God ordains is right,
Though now this cup in drinking
May bitter seem to my faint heart,
I take it all unshrinking
My God is true, each morn anew
Sweet comfort yet shall fill my heart
And pain and sorrow shall depart.
 
Whate’er my God ordains is right,
Here shall my stand be taken
Though sorrow, need, or death be mine,
Yet I am not forsaken
My Father’s care is round me there
He holds me that I shall not fall
And so to Him I leave it all.

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Comments

  1. Debbie says:

    Thank you for sharing your experiences with raising Matthew. I had not realized the multiple challenges that were faced! I have been so encouraged to be with you all and to see the love and team work in your family, and each one of you holds a special affection in my heart. One of my greatest blessings when I am with you all is to hear Matthew pray. It was always a highlight of my trip! Matthew is truly God’s gift!

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