The Horror Of Having A Child With Down Syndrome

Horror!  That is quite a word.   It is a word that makes me think back to when I was a kid and saw my first Dracula movie.  I was so scared that I had nightmares for weeks (Now vampires sparkle but that is a blog for another day).  Horror is a terrifying word and yet when people think about their supposedly healthy child being born with the condition of Down syndrome (DS) the word Horror comes to mind.  It is almost like a death sentence.

This is not what you expected.

This is not what you had hoped for.

So much to learn…so much to do…so much to think about.

Since our daughter Joy was born with DS everyone one asks me, “How are you and Charyl?”

“How is Joy?”

I have to be completely honest with you.  I am not going to hold back the bitter truth…

Joy has been the most delightful child I could imagine!

Here are some real horrors we have experienced with our little Joy

THE HORROR OF SLEEPING THROUGH THE NIGHT – Joy is now 11 weeks old and she has slept through the night since we brought her home.  Our other children have not been sleepers.  We went almost a solid year without a good night’s sleep with our twin girls.  Joy’s awesome sleeping schedule has allowed Charyl and I to be able to quickly adjust to the needs of a family of 6.

THE HORROR OF SNUGGLINESS – Apparently snuggliness is not a word but I am making it up because it so accurately describes Joy.  She is the cuddliest child imaginable.   I have nicknamed her “Snuggles.”  She is like having a little warmer full of love on your chest.  If you could somehow package love and hold it in your arms my little girl would be what you would come up with.

THE HORROR OF SUPER BIG SMILES, TONS OF BABY NOISES, AND PLAYFUL EXCITEMENT – I don’t want you to get the impression that Joy sleeps all the time or does not interact.  She loves to interact with everyone she comes in contact with.  She is very social.   She “talks” all the time.   She loves for her brother and sisters to talk with her and play with her.

I will not say that our experience with Joy is typical of all parents who have children with Downs.   Many children have open-heart surgery during the first few weeks of their life.  Some children with DS have many different health issues.  However, I will say that the joy found in parenting a child with DS seems to be unanimously wonderful across the board.  I have had the opportunity to meet a number of parents who have children with DS and all of them have such a deep love and appreciation for their child.

The only real horror of downs is the same horror I have for all of my children.

It is the horror of fear.

The horror of fear of the future that has not yet come and may never be.  Fear and worry are brothers from the same father, Satan.  They say that worry is a down payment on something that you may never need to pay for.

Fear is satanic in nature.   When we worry we are saying to God that we cannot trust Him with our future.   We cannot trust Him with our children.

2 Timothy 1:7 God didn’t give us a spirit that makes us weak and fearful. He gave us a spirit that gives us power and love. It helps us control ourselves.

I cannot speak about what God has in the future for Joy, or any of my other children.   I can speak of what I know.  I know that God has been faithful to my family and I.  I know He WILL continue to be faithful.  Joy’s DS has just given us one more reason to trust our heavenly Father more, for that I am eternally grateful. IMG_3069 IMG_3244 IMG_2933

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6 FATHERING TRIPWIRES

A tripwire is a passive triggering mechanism. Typically, a wire or cord is attached to some device for detecting or reacting to physical movement.  Tripwires are frequently used in boobytraps, whereby a tug on the wire (or release of tension on it) will detonate the explosives.

Tripwires are almost invisible and usually when a soldier has discovered the wire it’s too late.   These tripwires have killed thousands in battle over the years.   I believe there are many tripwires that can be explosive in the home.   It is important for dads to recognize these tripwires in their own lives before it is too late and they do permanent damage to their children and wives.  It seems that so many people are damaged for life because of some wound their dad has inflicted upon their heart.  Daddy wounds can take a lifetime to heal and sometimes never do.   Here are 6 tripwires I believe all dad’s need to be careful not to cross

 

THE WORK WIRE – All me were made to work and a lazy man is really no man at all.   If we are honest something happens when we get a family.  We deeply love our children and our wife but coming home feels like a lot like work.  It is work.  The work of being a father and a husband is often more emotionally taxing than our actual job.   In order to avoid the stress of dealing with problems at home many men simply work longer hours and use work as their excuse not to come home.  Anyone who says that a stay at home mom does not work is crazy.  I know if I were a stay at home mom there would be many days I would be glad to deal the corporate workplace instead of whining, potty training, and 1000’s of “I’m Hungry’s” and “She won’t share’s.”  When you are tempted to work late remember that your time at home is short and your kid’s and wife desperately need you.  You may bring home a paycheck, but it is even more important that your bring yourself home to serve your family.

 

THE CHECKOUT WIRE – I have heard so many ridiculous excuses.  “I just don’t love the children’s mother any more.”  “Doesn’t God want me to be happy?”  “They are probably better off without me.”   Men use these and other reasons to check out on their families.  Real men stay.  They make it work.   They don’t abandon their children while pacifying their conscience with a monthly check.  Go to counseling.   Learn to forgive.  Get in a small group at a church where you can get support. But for heaven sake DON’T QUIT!

 

THE HOBBY WIRE – Fishing, hunting, golf, exercise and any other hobby that you may love are wonderful ways to enjoy life and relieve stress.   Be careful not to do them in excess.  If you are going to have hobbies make sure they are things you can do with your children.   Remember you will have time for hobbies when your children are gone.

 

THE VICARIOUS LIVING WIRE – If you are a dad you believe your children are special (If you don’t you should).   You believe your son is particularly gifted at sports and your daughter is the best dancer and pianist in the bunch.   I am glad you believe in your child.   You should offer them healthy support and encourage them to do and be their best.   But be careful not to push them to try to be something you want more than they do.  Don’t be the dad that curses the umpire out at the game.  Don’t be the dad that has a talk with or pay the little league coach to get your kid in the game.  Don’t be the dad that pushes your child to excel so much in their particular field that they no longer enjoy the joy of childhood.   Don’t try to make them the athlete, student, musician, or popular kid that you never were.  Let them be who God made them to be and love them for who they are, whether they make it to the big leagues or not.

 

THE GROUCH WIRE – Maybe you are with them but you don’t have fun with them.   You are so focused on them being perfect that you never take the time to laugh with them, tickle them, and play with them.   Leave work at work.   Turn of the TV and get off your phone.  Don’t take your stress out on your children.  I think we are all guilty of this one from time to time.

 

THE PORNOGRAPHY WIRE – This is one that is blowing up families everywhere.  Whether you are the good dad with the secret habit or the man who doesn’t try to hide this issue.  More families than ever are severely effected by the viral plague of pornography.   Pornography turns people into objects.   It turns your mind into an insatiable lust machine.   It makes your wife feel unloved and insufficient.  One result that may be most harmful is how it disturbs your children.  Your son’s will likely take on your dirty habit and not be able to see women as the treasure that God made them.  They will view young ladies as a object of their desire.   Pornography makes you awkward around your little daughter especially if her body is changing.  You cannot have your teenage daughter’s friend’s over without lusting after them and you cannot show affection towards your daughter as you should.   You become awkward hugging her and giving her the innocent affection that she needs and craves from her father.   If you can’t give it to her then she will find male attention somewhere.  She will probably find some hormone crazed teenage boy who will be glad to give her attention in all the wrong ways.  Your addiction could blow up her security for the rest of her life. trip-wire

HE NEVER TAUGHT ME TO TWERK – 6 LESSONS FROM MY DAD

Proverbs 4:1 Hear, O sons, the instruction of a father, And give attention that you may gain understanding

            There are so many horrible examples of fatherhood today.  The Lord graciously blessed me with a God honoring dad.  Maybe you didn’t have a great dad, through this blog I want to share my dad with you.   You can learn from him as I have.

The past few days my parent’s have been visiting with us in celebration of my son’s 6th birthday.  It has been such a blessing to spend some time with mom and dad.   As I am often reflecting on fatherhood I wanted to share a few truths that my dad’s life has taught and continues to teach me.

LOVE YOUR WIFE – My dad is not a typical romantic, in fact from a Hollywood prospective he is actually pretty terrible at romance.  However, my dad deeply loves my mother, she knows it and so does every one else.   Recently my mother has been through a physical ordeal with a botched surgery that almost killed her.   After over a month in the hospital she was able to go home.   Dad has been her nurse.  He has had to dress her wounds and help her in every way.   My mother also has many problems with her back and is not able to sleep on a flat mattress any longer.  She sleeps in a recliner.   I was talking to mom this weekend and we were discussing options for her to get a mattress that she may be able to sleep on.   I made the comment to her that I am sure dad misses having her warmth near him at night since they sleep in different rooms because of her back.   To that she said to me, “Oh, he doesn’t sleep in a different room.  Ever since I have come home from the hospital he sleeps beside me on the couch to make sure I am ok.”   Wow!  That is romance.  What a great lesson on teaching me how to love my wife.  I hope I can be like that one day.

SERVE YOUR FAMILY WHEN YOU DON’T FEEL LIKE IT – Being a dad is hard work.  Sometimes being a dad is no fun at all.  It means you park the car and run through the rain while you let everyone else off at the entrance.  It means you give up your jacket when someone in the family is cold.   It means you cut up your children’s food before you eat your own.   I have witnessed my dad selflessly give of himself and I can’t remember him ever complaining about it.   I can remember late one night when I as 18 or 19 and I acquired a flat tire.   I looked underneath my truck and I had no light and no way of changing the tire.   Who did I call?   Dad!   He’d been in bed for hours.  He came and helped me change my tire.  He smiled and told me he was sorry I had a flat.   He never complained.  I hope I can be like that one day.

BE INVOLVED – He watched “He-Man” with me, coached my little league teams (to multiple championships), took me camping, and took me to help him in the garden.   He took me fishing.   He took me to church.  He never missed a high school football or soccer game that I played in.   He even came and watched practice.   He was always the loudest one.   He had a nickname for me.   He called me “Tank.”  I can remember on cold nights in Florida during soccer season the crowd would be a dismal 20 people bundled up in blankets quietly cheering us on.   In the quite crowd I heard the loud voice of my dad, “KICK IT TANK!  GET EM TANK!   SCORE TANK!”  To be real honest it embarrassed me at the time.  Now with deep affection it brings tears to my eyes as I think about his voice.  Even today as a write this his support continues.  My dad and mom were supposed to leave on Monday morning of this week but they stayed another day because I am preaching a revival.   They stayed an extra day to hear me preach, to encourage me, to lift me up.   I hope I can be like that one day.

MODEL FAITH – I can remember many mornings waking up to find my dad on his knees praying (probably for my brothers and I) and reading his Bible.   Each week he calls me and prays with me over the phone.   He serves his church.   I don’t think he has ever met someone he didn’t like.  He seems to really think of others as more important than himself.   I hope I can be like that one day.

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LAUGH A LOT – My dad told me when he was growing up his nickname was  “Sunshine.”   I’m guessing it’s because he’s always laughing and smiling.   My dad has a high-pitched laugh that we heard often in our home growing up.   He is a fun guy that little kids are drawn too.  My friends always loved my dad when I was a kid because he always took an interest in them.  We never had “inside” dogs growing up.  One way my dad thought would be an effective way to wake my brothers and I up was to throw a Dachshund on us in the morning and allow them to lick us awake…not pleasant, but he thought it was funny.   I hope I can be like that one day.

BE MORE – I never had the chance to meet my grandfather.  Apparently he was a brilliant man.  I never got to meet him because he was an alcoholic.  He had so many gifts but alcohol would rob my dad of the father he needed.  It would have been easy and natural for my dad and his brothers to go down the same path.  Alcoholic’s children often suffer the same fate as their parents.   The Grace of God, a loving mother, the prayers of a Godly wife, and a desire in my dad to be the dad he never had made him different.  I have never seen him drunk.  He has never abused me in a fit of rage.  He chose to be different.  He chose to be more!   I know his prayer for me is not that I become him but that I become all that God wants me to be.  My prayer for my son is not that he walks in my path but that he takes the next step as a follower of Christ and lover of people.     I hope I can be like that one day…

These are some things I am learning from my dad.   My mom is even better J I will write about her soon.   What are some things you have learned (good or bad) from your dad?