Lessons Learned

"Why does he talk like that?  And how come he can't do stuff like I can?" she innocently asked. 

It's questions like these that strike an arrow into my heart.  She was the same age as my youngest child, but she had picked up on his differences.  If you spend time with my youngest, you can forget that he is consistently a year or two behind his peers developmentally.  His big physical presence and even bigger personality are deceptive.  His smile is 100 watts of pure sunshine.  As his teacher says, "I love him.  He makes my day, everyday."  He overflows with energy and enthusiasm for EVERYTHING.  With that kind of joy on display, you get sucked into his world and forget that he has trouble doing what his same age peers can do. 

But he does.  He started kindergarten this year.  At almost six years of age, he draws pictures and writes like a three year-old.  His fine motor skills are his greatest area of delay.  Most of his needs tend to be expressive rather than receptive.  He's clever but it can be hard to tell at times.  His speech can be slow especially since he has only recently stopped stuttering.  To keep himself from doing so, he has learned to draw-w-w out the words that he might otherwise stutter.  Physically, he is big and clumsy.  I am not saying this in a mean way but as a statement of reality.  He kind of "bumbles" along at times, a bit like a big bear. 

At times, it is absolutely exhausting being his parent.  He lacks an awareness of danger.  The first day of school he fell face first on the playground and scraped up his face from the tip of his nose to his forehead.  It was a relief to hear that was all he had done.  I was actually living in fear of recess.  I still am.  It would not shock me to hear that he had climbed to the top of the monkey bars; turned around to talk to someone; and fell off, breaking an arm.  As a family, we live in a constant state of awareness with him.  Where is he?  What is he doing that could get him hurt?  What is he into?

On the other hand, we are grateful every single day that he is in our lives.  When we go to the hospital for his therapy and see the other children there, we are so glad that he is the smart, happy little guy that he is.  His needs are so small compared to some of those other children.  God has truly blessed us.

But there is part of the problem.  His needs are deceptive.  They are obvious enough that others who spend time with him ask questions.  One lady asked, "So what is wrong with him?"  A little boy at a soccer game said, "He doesn't even try to write right.  He's too big to scribble."  On the other hand, there are family members who are in complete denial and get upset with us.  One family member stated, "There is nothing wrong with him that a little time won't fix.  He needs to be allowed to be a little boy."  My husband and I even debated with each other when he turned three.  Do we keep him in therapy or give him time to progress on his own?    We decided to take him out of therapy for a year.  At the end of that year, his stuttering had become very pronounced; his frustration level was resulting in horrible tantrums; and his skills had not progressed.  We were wrong.  Instead of letting him be a little kid for a while, we had lost a year when we may have been helping him to catch up.

As parents, we have had to learn to put aside our own expectations, wishes, and desires for our son.  We have had to learn to see him and accept him for who he is - not who we wanted him to be.  Our son is very bright.  Have no doubt.  But our son experiences life differently than we may have wanted him to.  I wanted life to be easy for him.  Free of pain and discomfort.  But the reality is that God has equipped him for the journey that he is on.  He has a natural love and joy for life.  I have often said that our youngest child "eats life".  He propels himself through it, full speed, nothing held back - and with great joy.  He asked for rocks for Christmas last year.  Yep.  Rocks.  When asked why, he replied, "To make piles."  Life is that simple for him.  I think there is a lesson there for all of us.  Enjoy every moment.  Keep it simple.  Love those around you without reservation.

Thank you God for this child.  Thank you for the lessons that he is teaching me.  Please guide me in our journey together.  May I be the mother that he needs me to be. 

The Beginning

My husband and I thought we were AWESOME parents!  Our first child was the son anyone would want to have.  He was smart, kind hearted, out going.  Everyone who met him, fell in love.  We did a great job.  Right?

Then our second child was born and helped us realize, we weren't awesome.  We were lucky.  From the time we brought him home from the hospital, nothing has been easy.  Don't get me wrong!  He is also smart, kind hearted, and out going.  Everyone who meets him, falls in love.  But our second son has global developmental delays and some chronic health issues.  Combine that with a stubborn, bull headed disposition, and you have two very challenged, very tired parents. 

When he was nine months old, we became concerned because he couldn't sit up by himself.  Our oldest was starting to walk by that age.  A very quiet baby, he didn't babble or coo like other babies.  He was always smiling and happy but he wasn't doing all those things that other babies his age were doing.  He also had a serious asthma condition that required daily breathing treatments and diligent preventative measures.  In addition, he was very tall for his age and the steroids he was on had made him puffy.  Our primary doctor recommended that we seek out early intervention services.  He also referred us to specialists to try to identify what exactly was wrong with him.  Let the fun begin!

Having sons like ours can really put your life into perspective.  It helps you see humor in the darkest of days.  Laughing instead of crying because you have to prop your one year old up with pillows when he's sitting on the floor so that he doesn't fall and smack his head. It brings you closer to your family and those who really love and support you.  Calling your mother-in-law at two in the morning so she can listen to your baby's breathing to give you advise because he just had a breathing treatment two hours before and he can't have another for two more hours.  It makes you realize that nothing is possible without God and his Grace.  Like driving five hours to the Children's Hospital of Philadelphia because the specialists tell you that your baby will need to have his skull cut open and spacers put in place but when you get there, the specialists at CHOP say take him home.  He doesn't need this procedure.  He is fine.  Crying and thanking God because you know it was the prayers of your community and your friends and family that made this miracle possible.

Life isn't easy.  Being a parent is never easy.  But the journey is certainly worth it.  My sons have taught me that.