Heartbroken

That is all I can come up with to title this entry.  Tonight, we mourn the loss of a precious angel.  This young lady was the same age as Curt.  Earlier this week, she had major surgery that was to going to improve her life.  She was progressing well after the surgery, but something went wrong.  As bad as this hurts me, I cannot begin to imagine the heartache that her parents are going through.  As a parent of a special needs child, you realize that the possibility of loosing your child is increased greatly.  But there is no way to prepare yourself for it.  This has made me all the more aware of this possibility.  I don't know how I would handle it.  No amount of knowledge or emotional preparedness can ever ready you for that day if it were to come.  The hurt will be there no matter how ready you are.  Do we need to dwell of this?  By no means.  The way I intend to more forward is to do all that I can to make every moment of his life the best it can be.  I apologize for the raw and emotional nature of this entry.  Please remember this family as they grieve.  Save a place for me Lillikay.

It's Okay to Get Down

As a male, I an guilty of trying to be the strong one.  I try to keep myself from falling apart when things seem to be gloom.  I put on a mask to try and hide the dread I am feeling.  The deep fear that this may be that moment that I have hoped would never come.  To Curt and Brittany, I am full of hope and confident that all will be fine.  On the inside, I am trembling with fear.  I trust that God will be with Curt, but I feel the helplessness that all fathers feel when their child is in danger or pain and they can do nothing to relieve it. I look for the opportunity to slip away and try to deal with this bombarding of emotions.  I find myself in the hospital's chapel.  There I pray and release the hidden pain.  I know that many dads that read this can empathize.  After I have poured out my heartache, I put on my mask and return to my family that needs me to be strong.  Truth be known, it is all a fraud.  I feel like such a fake sometimes.  I have learned that I can't do this alone, I need God to help me.  I can assure you of this, there is no way I could have made it this far without His help.  One of the things that I have learned from Curt is that no matter what, I should not blame God for any of the trials that we endure.  I was once told That God never puts more on us than we can endure with His help.

Not At All What We Expected

This past week, my wife and I took Curt to a doctor appointment at the Medical Home Clinic at Arkansas Children's Hospital.  It was the normal appointment at this clinic, until Brittany asked the doctor about his annual swallow study.  The doctor was unsure about continuing them so he ask us a few questions about his responses to taste therapy and his speech therapy.  After that we waited while he spoke with the Speech and Language Pathologist in the clinic. The SLP then examined Curt and ask more questions.  She recommended that we increase his taste therapy and oral stimulation.  She is ordering the swallow study and indicated that this was the start of the road to being able to eat by mouth again.
I don't know who is more excited.This is a huge step that, to be honest, I did not expect.  We had hoped that one day he would be able to experience the flavors and textures that we take for granted.  Curt has set a goal,  he wants to be able to eat a cheeseburger and take a certain young lady that has caught his eye on a date.  I don't know about the date seeing that he is only eight.  So far, he is loving the extra taste therapy.  He loves the filling for Crab Rangoon.
Why am I sharing this with you?  Well, I believe that sharing our little victories helps to keep hope alive for the other little battles we face. We must never give up hope. This hope is what helps us face every day with courage and keeps us from crawling into the hole that we all want to find when everything seems to be going wrong. There are many days that I have to tell myself, "God never puts more on you than you can handle with His help." 

Starting now

I am sure that we have all heard the phrase, "life is a journey".  Some people's lives are more adventurous than others. Each of our journeys are different, but in some ways very much alike.  We all have struggles and trials, periods of peace and despair, highs and lows.  Our journey is filled with a wide gambit of situations,emotions and decisions.  As a father of a special needs child, these all seem magnified.  I have decided to share my journey with the world.   My hope is to help everyone understand what our life is like and to encourage and maybe education other special needs families. 

I guess the best way to start is to tell you about my son, Curt. He is 8 years old and loves life.  Although he is non-verbal and non-Ambulatory,  he is one of the happiest kids in the world.  Shortly after he was born, we realized something was not right.  It was discovered that he had cataracts in both eyes.  They were preventing him from developing normally because he couldn't see.  After corrective surgery,  he was still not developing at a normal pace.  He was then Diagnosed as being Globally Developmentally Delayed.  Further testes showed that he has an X-linked genetic disorder that presents like Cerebral Palsy.

Starting now, I am committing to you the readers of this blog to share with you my feelings, hopes  and experiences as a parent of a special needs child.  Please feel free to ask questions.  I may not have the answers, but maybe one of the other readers will.  I believe the greatest asset we have is each other.  Let's be stronger as we stand together.