Holiday Headaches

Holidays are stressful.  Let me say that again, Holidays are STRESSFUL... IF you have physical health problems, special needs or are just human, Holidays are stressful!!!!!!

 You can plan the perfect Christmas. Make your house look like a Hallmark movie or decorate your yard to impress your neighbors.  You can out do your children's friends parents when it comes to gift giving. Give gifts that you cannot afford or will be paying for until the next Christmas. You can put pressure on yourself that will make you so exhausted that you cannot enjoy the day, memory or the joy of giving.

I know this because I have done these things. Giving is joyful but not when you give because it is expected.  I have hurt so bad after cooking for two days for a perfect Christmas Dinner that all I have wanted to do is take a pain pill and sleep.  Let's not even get into baking...

Last year my child's big present was a keyboard.  One day he may play it.  Guess what he loved?  It was a book about World War II.  He read it out loud to us all morning. He was so thrilled.

I love Christmas but every year they rush it earlier and earlier so that by December 25th all the stores have is valentines and spring apparel. People take there trees down the next day because they are over it.  That is the week that we should be celebrating.

This year I plan to remember the true meaning of Christmas. I am not going to over do or over give and try not to over eat.  I want to give from my heart. I want to relax and enjoy the memories.  I want to enjoy my family, relatives and friends.  I want to remember that it is a celebration of the birth of Christ.  I want to take time to reflect His Goodness and Grace.  I want to remember The Reason for the Season.

:For God  so loved the world that He gave His only begotten Son, that whosoever believeth on Him shall not perish but have everlasting Life." John :16

Yet a New Approach

Today we met with a therapist at Christian Psychotherapy.  She takes both insurances meaning no co-pays...She also does Play Attention which is a computer based program used for ADHD and other disorders.  She wants to work on a therapy for Trauma called EMDR.  I am so excited.  We have been with the same therapist for 3 1/2 years.  We are ready for a change.  Puberty has come and behaviors are constantly changing and keeping us on our toes.  We want to do Learning RX too for cognitive skill training. It is pricey so it is on hold for now.
My husband's MRI was normal.  All we know at this time is that his vitamin B levels were elevated and a statin was stopped.  This has caused muscle weakness. He also had a normal muscle biopsy. He seems to be doing a lot better now that the constant appointments are slowing down.  

Special Needs Families

If you have a member of your household who has a physical, mental, emotional, learning difference or medical disability consider yourself a special needs family. Welcome to the club.  It is not so bad.  It is just a way of life. It is your normal.  It is not to be understood or appreciated by most.

 People may not understand why you have good intentions but cannot be dependable.  They may not see/feel your pain or understand your illness or your loved ones differences. You will probably be judged, criticized or even talked about for not doing what others think that you should be doing.

Life is not easy for the normal family.  Times are hard for all.  Let's try not to judge anyone that we have not walked a mile in their shoes.  Instead let us pray for these families.

If you are a special needs family consider yourself blessed. God cannot trust everyone with what He has entrusted to you. 

What if and Whens

What exactly is your child's diagnosis?  Why are you raising him?  Wouldn't he be better off with his kind?  You home school him?  You are not his mother?  What's going to happen when he gets bigger?  He needs to be social.  He needs to fit in.  He needs to.....  Eye brows are always raised. 

Yes I have been asked all of these questions and a multitude more in the past twelve years.  Do I answer them?  Sometimes I do and sometimes I grit my teeth.  Sometimes I even wonder why our normal seems to be so different than typical.

We are trusting God for the what if's and whens.  As for a diagnosis, it is just a label or many. I can say his therapist and psychiatrist feel he can get a better education at home.  The special ed  teacher that test him yearly recommends one on one teaching for him. 

We have storms in our lives that cause us to question and rethink our goals.  We wonder how much abuse do
we put up with in a special needs child and how capable is capable? The storms will continue to brew but the sun always shines. 

Hurricane Irene Heading our Way

We started our week with a earthquake in Virginia.  We are now awaiting a powerful hurricane that will travel up the east coast. We had 14 inches of snow last winter. All of these are not common for our region.  We see snow but not large amounts.  We have effects of hurricanes but not evacuations.  Earthquakes are unheard of. We are as ready as we can get.  Preparing for the worst and hoping/praying for the best.  Be safe.

August 2011

Where did the summer go?  It has been sooooooooo extremely hot and the air quality poor due to the dismal Swamp fires.We have been indoors way to much.  We have not even used our grill since May.  Looking forward to some cooler temperatures so we can clean out the shed and get rid of some of the clutter around here.  Our plan is to get our home in repair so that we can move in two years. If The Lord sees fit we would like to move to Summerville, SC to be near family.

Our son has started Martial Arts and still likes it after three weeks.  It is a Christian program where they memorize scripture and it teaches character.  His instructor has taken a job out of the area so we will meet the new one on Monday.  He is not good with changes.  I hope they will hit it off.  If not we have another option to take the class at a different location.

We will be home schooling again this year.  We have not found a school that meets his needs.  We have not been on the special diet but need to do this gradually again so that he will not feel deprived or different.  He has intestinal issues and we see a different Gastrointestinal specialist this month.

We still have not received any definitive diagnosis for my husband.  The muscle biopsy was negative.  They have stopped some of his medications and vitamin supplements.  He had high levels of B6.

I am still hoarse after many months.  I am sure the poor air quality has contributed.  I am assuming it is the Sjgroens, medications and acid reflux.  The endoscopy test revealed a hernia that was stretched during the test. Actually the acid reflux has been worse since they repaired it...

My step daughter and grandaughters health have improved.  They are doing a lot better as this has lifted a great burden from my heart.

I would ask for prayer for a 4 year old name Sawyer who is in the hospital with kidney failure.  Pray for a miracle. His family home schools as well.

Hope you are all enjoying your summer.






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June has been a challenge.

We have been bombarded with medical appointments and co pays this month.  Therapy is always twice a week.  My husband has had numerous appointments with specialist and Friday an outpatient muscle biopsy. We also squeezed in two days of westcock-johnson testing for home school.  Needless to say we are all exhausted and tired of appointments. 
The good news is my son did really well after not making any  effort with his school work.  He scored way above levels on English, 8th -10th on parts of the test. He was in 6th grade.  We just have to work with writing and sentences.  He also went up a level in Math which was only made possible by a patient tester, prayer and the amazing calculator! He has always been behind in math, yet he was getting A's in public school with special accommodations. He just doesn't get Math!!!
My husband is healing from the biopsy.  He still has numerous test before we find out any results.  He is resting and in good spirits. We  are having a laid back weekend before starting another week of appointments... I am thankful for health insurance just wish it covered more.
Looking for a friend or mentor to do things with my son this summer with good character.  We had to do an increase in his medication a few days before testing.  He was very manic.  Obviously, he was stressed about the testing.
We are also expecting another grandchild.  My oldest stepson told us this week that they are 16 weeks pregnant.  Praying for them and that he will get a great job.
A lot on our plate this month but God never gives us more than we can handle.