Mid-Summer’s Thought

The fourth of July is always a special time for me.  It reminds me of how blessed I am to have been born in this country. How blessed my son is to be an American.  I know it is not like this everywhere. I have spoken with not only persons with dwarfisms from all over the world, but also with moms of children born with dwarfism.  About two years ago, a woman emailed me after trekking for a couple of hours to the nearest missionary where they had a computer.  Someone had told her that I had a son with Achondroplasia and that I was on the web.

Her story is etched in my memory because it was a fork in the road for me.  It is the average stature moms which need the most guidance because they are in a territory which is well out of their realm. They feel lost. I liked answering questions about my experience with my son because I remember feeling lost too.  I can’t count how many potty seats I bought for potty training.  He fit in none of them!  It was like that with light switches, bicycles, chairs and desks, clothes–everything!  But she was not seeking information about those things.Her daughter’s doctor wanted to break her legs, thinking they would grow properly.  She described to me a primitive procedure and asked me what she should do.  I remember crying and feeling the weight of the world on my shoulders.  I remember calling a friend and confiding in her and  I remember her telling me that I can’t help everyone.   In that woman’s country, the local doctor was all she had. Getting a second opinion was not an option for her and I am not a doctor.

In America, the mom’s realize after  awhile that everything is going to be fine.  Most Achondroplastic dwarfs do just fine once they get through their first few years.  Doctors watch them closer during the early years for things like breathing problems, hydrocephalus, or cervical spinal cord compression.  The least of their worries are getting their arms or legs to grow!  I emailed information to the mission which growth disorder organizations offer and told her not to worry about her daughter growing.  She was born with a condition which doesn’t require a “cure”.  I told her to enjoy her beautiful toddler and to remember that it is normal for her to grow like all of the other Achons do.  I did that knowing that in her country and in her village, she would not be accepted.  According to the mission, she may even be considered cursed and ostracized.  I did that because it made me feel better.

When I pushed the enter button, I closed communication with her and several others. I forced myself to say goodbye to scared new moms who were not as fortunate as I to have what we have in this country.  I still have questions as my boy enters each new age.  With every milestone, comes a chapter missing from the parenting books I have.  What I do have are other moms to ask.  More than that, I have a community of fellow Americans who are accepting and caring.   My son has rights in this country.  We have a wealth in this country which includes healthcare and education.  My child will have the right to vote, to work and to choose where to live.  We’ve taken what are considered luxuries in other countries and made them rights in ours.

While watching fireworks on the fourth, I always remember to look at him.  There is nothing more beautiful on this night than seeing the lights from the fireworks bounce off of the faces of those you love.  He will not appreciate this for many years still.  But for me, everything about our celebration of continued freedom brings me back to him.  On this night I will continue to ask God to bless my country and those who protect our freedom.  I will make sure my son will know to be thankful as well.

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3 thoughts on “Mid-Summer’s Thought

  1. Thank you, once again to all of the incredible responses which I’ve received! You messages on Facebook, Twitter, mail and this blog has been fantastic! You have all done more than you realize! Other orgs in need have heard of me because of you. They now have my support, and I have theirs. So many new friendships have been made! Thanks to each and every one of you! My son reads these and, even though his ego is growing bigger than my car, this has had a wonderful effect on him. You have shown him what can be done. He does volunteer work, (I started him along side me as a babe), and even though he has to work harder than the other kids and adults already, he has been driven to really go! I can honestly say that he works very, very hard; he gets there early and helps clean up after! His motivation comes from all of you.
    I guess it does take a village to raise a child. Smiles! You are all in our prayers!

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