Bet you know how this feels

I have a few things on my mind today.  These are things that I think all of you that are special needs parent will have strong feelings about.

Is it just us, or do you all have people that have no clue what life is like for your family try to judge you.  I am not saying that they are necessarily saying bad things, but that they talk to you or about you without really understanding what you feel.  They say things like:  “I am so sorry for what your family goes through” “I don’t know how you do it”  “you are an amazing dad” “You probably get so much help from the government that you guys don’t have to worry about finances” .  Please allow me to respond to each listed in order: Don’t be sorry for us, we are blessed more than you can ever know.  He is my son, how could I not love and care for him.  I am not an amazing dad, but I try to follow the example given by our Heavenly Father.  And finally YEAH RIGHT.  Please don’t misunderstand me, I am thankful for all the encouragement. But I want you to know that being Curt’s dad does not make me super human.  I am a dad that wants the very best for my son and will do what I can to make his life the best that I can.  Does that make me special?  I don’t think so.  Isn’t that what a dad should do?

The next thing on my mind is how are we supposed to provide the special equipment that our children need when many insurances are paying less and less for the outrageously pricey things to make life easier or better for us or our child.  The single most devastatingly expencive need is transportation for those needing vehicles with a lift or ramp.  I have searched for assistance in purchasing a wheelchair accessible van and have not found much.  The average used van with conversions is as much as a brand new minivan with all of the trimmings.  A new one is as much as $70,000.  Then you look at the lower gas mileage, increased travel to doctors, and the various other expenses.  People really don’t realize how stressful this can be.  I have decided to just not worry about it.  God has done a great job taking care of us thus far, why would He stop now.

I really don’t want you to feel like I am just ranting or complaining with this entry.  I am not. I just wanted parents out there to know that they are not alone.  It is so easy t get discouraged and stressed out.  What I do when faced with these is I stop and spend time with Curt.  He reminds me that there is no reason to panic.  He brightens my day.  Let your child or children help you to remember to not sweat the small stuff and enjoy life moment by moment.

Little Victories

When Curt was born, I remember dreaming of all of the things we were going to do together.  We were going to do all of the stereotypical things that fathers and sons do.  Hunting.  Fishing.  Razorback games. You name it.  I stood there in the birthing suite at White River Medical Center, holding someone that would teach me more about love than anyone I have ever met.   The journey that started that day has given me opportunity to learn more than I ever thought I would want to know about the everyday lives of a family with special needs individuals in it.  I learned that the dreams I had for Curt,  weren’t necessarily what God had planned for him.

 Through the years I have questioned God, “What is your purpose for Curt?  Why does he have these struggles to face?  Will he ever be able to chase his dreams?”  I still struggle with this, but I have learned to view things differently.  All to often, we try to measure success with grandiose achievements.  Curt has taught me that real success is achieved through the small everyday victories .

Let me share one such victory from his Occupational Therapy session today.  Actually, it is more like a series of victories.  First of all, the therapist was holding his legs and rolling him to help build his trunk control.  She quit rolling him but he kept on going.  He rolled from his back to his belly and stopped. The look on his face was saying,”how did that happen?”.  Next, he sat up on his own for several seconds.  We all cheered for his good work, and that triggered his final amazing feat for the therapy session.  He got so excited for being praised for his good work that he almost jump backward into the therapist’s lap. 

Enjoy the little victories because they add up to be huge accomplishments.  Please share some of the little victories in you lives.  I want to hear your thoughts and comments.  Let’s draw from each other’s experiences.  Together we are stronger.

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.