Sunday, June 2, 2013

One of Those Days

When I started blogging, one of the reasons why I did it was to share with people what it has been like, and is like, to parent children with special needs.   I wanted to make sure I shared honestly and openly.   So as to encourage people that have children with special needs to see they aren’t alone and to show anyone contemplating adoption of a special needs child the reality, joys and struggles of raising them.  That a child might have a diagnosis for one thing, or nothing, and something unexpected might come up later that you were not ever expecting to work through.   That although we are a very happy and blessed family, things are not always rainbows, hearts and butterflies.  We have had and still have some very hard and challenging days.  With so many kids in our home with special needs their “bad” days often overlap on the same day.  Oh, joy.
So here we are…….back to the topic of my wonderful daughter Elizabeth.  I love her dearly and have worked harder, prayed harder, cried more, re-evaluated myself and our rearing techniques more with her than any other child I have ever raised.  For the first three years of her life she was not very stable in her health.  Her care was 24/7.  Suctioning her trach, breathing treatments, tube feeding, oxygen.  Frequent hospital stays, surgeries and throw in there foster care related, visitations and court dates.  It was busy and stressful to say the least.  My emotions and body was on high alert for years.  On top of all this I still had several other children with special needs in our home that needed myself and my husband.  Those were some extremely hard years.
As Elizabeth began to stabilize, get healthier and stronger, her personality began to emerge more.  Even though she is a cutie pie and I love her, her personality was not pleasant, sweet or wonderful.  I have always tried to give her more grace than my other children as she had many painful things she went thru that we could not pick her up and comfort her thru because she was hooked up to many life saving pieces of machinery.  Our love, prayers and physical touch was all we could offer.  Also I had nursing come into our home for several years.  As I had things I had to do, like sleep!   Seriously though, I had a house hold to run and other children to care for.  So had nursing to give me extra hands.  A person to suction her as I drove places.  It was for safety sake.  So she did not always have me doing all of her care day and night.  We had many different nurses helping us thru the years we needed them.   Those things I think greatly played into her emotions and ways she acted out.  Because of the way her life was in the beginning, thru no ones fault, it is the way it had to be.  Even though we had her with us since 12 weeks old, I was with her thru every hospital stay and sickness and did much of her care……she still developed issues from it all..Some people would call the way she has attached to us as RAD.  (Reactive Attachment Disorder).  This is something I never wanted to work though with a child in my life. Something I never expected. 
Her behavior issues peaked at about age 6.  We hardly ever had a break from her several times in a day tantrums, acting out, meanness toward the other children and horrible things she said…she had no conscious when she did something wrong….it made her happy and gave her great joy, even if she got punished, it didn’t bother her…....daily…..all day long for about three solid years. 
(At the aquarium with my nephew)
The other children stayed clear of her.  Didn’t want to be around her.  Never wanted to play with her, sit by her in the van or at restaurants.  She had to act out and ruin every happy family event we tried to plan.  It was emotionally exhausting. 
When she turned 9 years old, I was at my end.  I felt so down hearted and discouraged.  I didn’t want to get up in the mornings to “deal with her” all day.  I fell into bed exhausted and beaten at night.  I wanted to put her in public school but I knew that would just make the troubles worse.   She would behave for no one and that certainly would not help our relationship.  To be honest, I felt trapped thinking that I might have to go thru this daily for the rest of our lives.  I saw little to no change in her behavior no matter what we tired or did.   
Some days my husband would come home from work and I would collapse crying into his arms unloading my days events with Elizabeth.  I would then retreat somewhere with the rest of my children and let Tim work with her till bed time.  I was just spent.  It was all greatly affecting my health.  Something had to change.  I prayed and cried out before God like I never had before. 
That’s when God showed me that what she was doing….her relationship towards me, was the same as many people’s are toward God.  It is the way my life and attitude was towards God and His law before I got saved.  Yet He still draws us.  Gives us many chances.  His mercy is new every morning and His grace is sufficient.  I was putty in Gods hand.  Broken.  I was ready to go at it all again renewed in my heart by God.  Ready to remind myself every morning to give her a fresh start and new day.  To not take her attacks personally.  That I loved her and we needed to work thru this together.  As a family. 
God showed me many new things to try.  I was to be the person there for her from meals to self care.  To work on our relationship in a positive way separate from her behavior or how she treated me that day.  (hard one)  To pray with her daily about her behavior.   For the first time I saw sorrow and she would often cry as she asked God to help her to have a good day.  She would often cry when telling God she was sorry for how she acted towards others.  I was to not get angry and show her love even thru her being disciplined.  To explain to her to the smallest detail what she was in trouble for and why it was wrong and why I was having to correct her for it. (to ask her how she would feel if what she did was done to her)  I showed her stories in the bible that pertained to her sin and behavior.    To overly reward her for the smallest kindness and good behavior with hugs, attention and love.  That when I disciplined her, to only do it for that day.  Before this time, for everything she did that was terribly wrong I would take away things often even an event many days away like movie night taken away.  In her mind she had nothing to look forward to as everything was always taken away.  She needed to feel reward and success often so she would want it to continue.
At first we took it only a section of the day at a time.  If she started out badly and had something for that day taken away.  I would tell her it was taken away but if she was good the rest of the morning she could “earn” it back and this worked!  Also to only discipline for the worst of her behavior and let the other things slide and work on them later. 
We started having “good days” here and there right from the start.   Every good day encouraged me to keep to the new way God had shown me.  Then we started to have mostly good days.  She would only have one or two hard days a week.  Then she started to have only a tantrum once in a while but could maintain being good the rest of that time and day .  It used to be if she blew it, she would just figure she could act out the rest of the day as that day was shot anyways as far as behavior.
About six months ago, she got saved.  Glory to God.  She truly is doing so much better.  Praise be to God.  Life is so different now from what it was a year or so ago it is like we have been given a miracle.  Truly.  Elizabeth has foraged a good relationship with her sister and one of her brothers.  She is working on it with the other kids in the household.   I am amazed and forever grateful.  God is so good.

So…..The last post was a wonderful post about the girls ballet recital and all the wondrous feelings and happiness that God has blessed us with concerning them.  It was true and I feel every bit of what I wrote.  What I will share with you now is Elizabeth’s  the “day after” a big event.
It is one of those “bad” days that we still need to watch for, and try to avoid.  As she gets so much attention and happiness on a big day when something extra exciting and special is happening.  That for some reason the next day.  The “day after”  she usually has a very hard and bad day regulating back to reality.  And so this is exactly what happened the day after the recital.  She had not had a tantrum in a long time and had three on Thursday.  She verbally lashed out at everyone around her all day and had a really hard time reeling in her emotions.  Praise be to God these days are few and far between now.  Still not easy to handle and not any less frustrating.  As soon as Tim walked in the door I said “tag team, your it”  and he took over for the rest of the evening.  I went outside and weeded the garden.  Ahhhh.   

Anyways, she was back to her normal self again by Friday.  Glory to God!  I am so happy to call the good days her normal now instead of the other way around.  :)

May the Lord God in heaven give you the answers you are praying for, help you thru those hard days and bring you to those precious happy days on the other side.  That He will give you the help, strength and guidance you need as you work thru life and its struggles. 

God be with you,

Romans 15:4 For whatsoever things were written aforetime were written for our learning, that we through patience and comfort of the scriptures might have hope.


2 Timothy 3:16-17 All scripture is given by inspiration of God, and is profitable for doctrine, for reproof, for correction, for instruction in righteousness:  That the man of God may be perfect, thoroughly furnished unto all good works.


Matthew 7:7-8 Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you:  For every one that asketh receiveth; and he that seeketh findeth; and to him that knocketh it shall be opened.



  1. Yowza! Poor Elizabeth! Poor Susan! Hugs, prayers and I know you will make it through.

  2. Thanks so much Julie. I appreciate it so much.