Guest Post by Doreen Mcgettigan

It was about this time of the year.  I sat on the front porch with my bonus daughter Heather

and rubbed her eight months pregnant belly.

I created one thousand reasons in my mind why the baby boy

was not kicking like a little football player.

Kyle Christopher was born on a warm, early fall day.

 He was transferred to the Children’s Hospital of Philadelphia.

My daughter, Joan and, frantically searched for a christening outfit. 

Kyle was baptized and dedicated that day.  One minister forgot his oil.

The skinny, tiny boy was connected to monitors and a feeding tube.

 It was difficult with all the apparatus, I had to hold him.  To me he was perfect. 

He was diagnosed with Smith-Lemli-Opitz Syndrome.  Yeah, we never heard of it either.

It is extremely rare.  Rare like less than 200 diagnosed.

http://emedicine.medscape.com/article/949125

The doctors were not optimistic.  We learned everything we could about the syndrome. 

We learned CPR and feeding tube care.

It was likely Kyle would never walk or talk. Four families and countless friends came together

to offer their support for these young parents.

 Matt and Heather were simply amazing.  I will never forget the first smile Kyle blessed me with.

 Against all odds Kyle grew, slowly.

He attended Easter Seals.  I could write a book on the love I have for this organization and the extra

 ordinary love the teachers have for our worlds

most precious angles.  They taught Kyle sign language. We learned to sign. 

We taught Kyle’s baby brother and his cousins to sign.

 His feeding tube was finally removed; he was able to eat real food.  I will never forget the time

 I was feeding Kyle spagettios.  I thought he was finished.

I reached for the napkin to wipe his face and he tapped his little pointer fingers together. [the sign for more.]

 His first word for me was more.

I cried.  On September 15^th we will celebrate fourteen years with Kyle. 

The baby boy that wasn’t supposed to live for 72 hours.  There must have been some magic in

 the Wesson oil that minister used.

Doreen Mcgettigan is the author of the bittersweet book BRISTOL bOYZ STOMP, which will make its debut in just a few short days! You can find her and the book at http://www.doreenmcgettigan.com