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.