Wednesday, September 18, 2013

Good-Bye, For Now, Little Friend

Appointments are just a normal part of our life.  We have spent and do spend a great deal of time in doctors offices and at therapy appointments.  Now, you know if you have any type of appointment, that if you are 15 minutes late, they cancel your appointment!  But if you get there early or on time, you get to sit in the waiting room for up to an hour before they call you back.  I have trouble sitting still but try to be a good example for our children and try to keep myself busy thru the long wait. 

Though the years we have met some interesting people, had some really great conversations and made some good friends sitting in waiting rooms.  I must say that at our therapy place they don’t make you wait long at all to be called back.  But I often stay out in the lobby and wait while the children get their therapy.  At our therapy place we often see the same people waiting week after week for their appointments.   

Years ago we met a little boy in a wheel chair who was born with a muscle disease, at our therapy place.  He was…let me see…how do I describe him… charming!!!  With chubby cheek sweetness and as cute as a button.  A conversationalist of conversationalist.  He had such a spark about him.  This amazingly smart little guy, in this little body that he could not move at all.  Bless his heart.  We got to know him quite well and I also enjoyed talking to his mom.  He was her only child.  She was a single mother and she would often share what an overwhelming job it was to care for him.  Every part of her life was a struggle.  Over time I had talked with her, listened to her and prayed with her. 

About two years ago I was doing my rounds at our local hospital where I am the Sunday Volunteer Chaplain.  I opened the door to go into see my next patient and there he was.  I said “B”  what are you doing here!  Are you ok??!!  (I was just so shocked to see him there.  As children with his degree of care would never be admitted to our hospital.  They would be sent down to a children’s hospital in Atlanta or to Chattanooga)  I asked him if he was sick and he said no.  I looked up at the adult man in the room.  I didn’t recognize him.  The man in the room motioned me out to the hallway and told me that his mom had been arrested for drunk driving, with him in the vehicle.  He was so medically fragile the state could find  no foster home or place to send him till she got out.  He was now in state custody.   He was only 7 years old.

My heart sank.  I went back into the room and had a wonderful visit with “B”.  I tried to cheer him up and then went on to see the rest of my patient load.  But I could not get him off my mind.  He had already been in the hospital for almost a week and the only reason was because they could not find a placement.  A home for him. 

After my rounds I went back by and gave my phone number to the sitter.  I told him to please tell the director of DFCS that if they found a placement for him, that we had a handicap van to get him and his power chair to the placement.

Tim and I did get a call.  Tim and I didn’t know what to do.  We knew this placement worker from working with DFCS.  They could find no placement for this child.  He was to medically fragile.  The hospital wanted him moved as soon as possible.  Oh my heart ached for him.  He had different sitters with him around the clock.  He should be in school with his peers and friends and was lying in a hospital bed eating, watching TV and missing his mom so much you could just see it in his little face.  His fragile body was being exposed daily to the threat of sickness just by being in there.  It all made my heart ache.

Tim and I prayed about it and told them to send him out to our home.  BUT…only if they provided some nursing for him.   As he was such a liability to have in our home and at that time my health was not very good.  I was struggling just to make it thru every day. 
My children loved having him around.  He could not move his body at all except to rock his head back and forth to drive his power chair, that had the controls in the head set.  He could also pinch two fingers together on his right hand a little.  I went to the store and bough these little cars in the toy section.  You put a key in the back of them and pushed it in hard to cock it.  Then if you pinched the key, the very small car would shoot off the key and go across the floor.  My kids would set up buckets on the floor in front of “B” and put the cocked car in his little pincher fingers and he would try to shoot it off his lap into the buckets.  He was thrilled.

Also William would play video games with him.  One day William asked  “B” to play.  “B” sadly said he could not play.  William said oh yes you can!  So he wheeled “B” over in front of the TV and put in Mario.  William said…I will be your hand you tell me where to go and what to do.   “B” loved it.  He had a ball.  He would tell William JUMP!! JUMP!! If something was coming to get him.  He would say go left, go right. Go down that tunnel.  Jump and get those coins… It became a special time between them.  We don’t normally allow much video game time in our home.  But allowed it daily for a short while just because it brought him such joy.  

He pined for his mother.  It was hard for me to get him to eat enough.  I would even try to tempt him with takeout food, we don’t normally eat, just to get him to eat something.  Anything. 

His care was intense.  It quickly took its toll on our family and energy even with nursing here some.  Antonio was already a lot of work but “B” was 24/7.  In the night he would cry out that his leg or arm was asleep and hurting and he could not move it.  So he had to be repositioned all night long.  His heavy head would fall into awkward positions and make breathing hard for him.  So we had to constantly be repositioning his head.  He did not have enough muscles to cough.  So he had to be suctioned a lot.  We had to help him to the bathroom or change a diaper.  With no muscle tone, his body was like a huge sack of rice that was slowly crumpling up and sinking down.  We had to constantly reposition him all the time.   He was heavy.  Bless his moms heart.  I can see why she had the issues she had, being his only caregiver all those years alone.  

Those days he was with us were wonderfully fun days for the children and we made some wonderful memories.  But having two very large children as involved and in wheel chairs as Antonio and “B” pushed our physical strength to its limits.  Everything in Antonio’s care is very time consuming.  It was double with “B” in our home.  We fell into bed exhausted at night and had to take turns getting up in the night if nursing didn’t show up.  God was so good to carry us thru as always.  He lived with us till his mom got out of jail and she did her case plan.  He then went back home.

It wasn’t many months and I heard thru the grapevine that he was back in care again and placed in a medically fragile foster home in another county.   I felt badly for his mother as I know how hard life was for her.  I felt badly for him as I remembered how close he was bonded to his mom and how he suffered the last time he was away from her.   Since he was placed in another county we never saw him again but he was always in our prayers and the children mentioned him often. 
Last Wednesday I got a call that he passed away.  He was still in care and was having a surgery to lengthen his arm.  As they put in the last stitch he went into cardiac arrest.  He was 9 years old. 

We went to the reception and funeral.  There are no words.  People think that if you’ve lost a child you know what to say when someone looses theirs.  That is not so.  There are just no words.  No comfort.  Nothing to be said that can help anyone feel better when going thru that.  The only thing that brought us comfort at that time in our life was God.  Was the knowledge that we would see them again in heaven soon.  Our bodies were never created to feel such pain... 

If you think of it this week or in the weeks to come.  Please pray for all the people that were involved in “B”’s life.  God knows his name.  It was a great sadness all the way around.  I pray for his mother.  Who was so worn down and broken in life and had not had him in her arms and home for so long... and now he is gone.  I pray for his doctors who knew him all his life and did the surgery and he slipped from this life in their care.  How hard for them to live with.  For DFCs workers and case workers that knew him so well and worked with him and loved him too.  He was such a personality.  He just drew in anyone who spent even a moment of time with him.  His therapist who loved him and worked with him for years, so hard, to keep him mobile and progressing.  For his current foster family.  He lived with them over a year.  We had him a short time and feel the loss of him deeply.  For them….How hard. 

Life is so precious.  I appreciate everyone of you, that take the time to invest your time in our family.  Whether it be in reading my blog, thinking of us in passing, writing to me, being a part of our family or just leaving comments to encourage me.   I appreciate you all and thank you all.  But the things I covet the most.  The thing that changes circumstances and is so powerful are your prayers.   Thank you for your prayers and for praying for this family.   As they will never be the same again. 


Matthew 19:14 But Jesus said, Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven.

1 Corinthians 15:52  In a moment, in the twinkling of an eye, at the last trump: for the trumpet shall sound, and the dead shall be raised incorruptible, and we shall be changed.

In His service,


  1. Oh Susan, my heart was breaking as I read your beautiful tribute to B. Hugs to you and Tim for taking him for that important time. At least B is in a better place and no longer in pain.

  2. Thank you Julie. You are always so caring and kind. He was a very special little man. He will be greatly missed by all who knew him. You are so right. He is in a much better place and I can just see him with his spunky little personality...He hit the ground running. God bless you.

  3. sweet little boy! what a joy to know he is running around heaven on two very able legs and he is chatting it up with te angels and Jesus. have you ever read the book "heaven is for real" or the book "the boy who came back from heaven"? both of these books are true stories of children who got sick or hurt and went to heaven then came back and told of the amazig things they did and saw while there. if you haven't read them you should, they would also be great reads for your children. Love you susan, thanks for sharing your heart with us again. YOu are a precious lady!

  4. cindie, For a child that could never move his body, I agree. He must be having a wonderful time. I have not read either of those books but have heard of them. Thank you so much for always being such an encouragement. Much love and Blessings!