"It's just a couple of surgeries"

I'll never forget those words that were spoken to us shortly after we found out about Ryder's bilateral cleft lip and palate. At this point, we weren't sure what journey was ahead of us as I had to return in less than 24 hours to undergo an amniocentesis to see if our unborn child had any chromosomal defects. We also had to make appointments to meet with genetic counselors, see about genetic testing and also meet with other specialists regarding cleft issues. I was SO overhlemed (to say the least) and at 20 weeks pregnant I was a ball of emotions. I remember walking out of the ultrasound appointment, barely functioning enough to walk to the car and all I heard was "it's just a couple of surgeries".  I'll also never forget hearing someone say how "heartbroken" they were for us and all of the potential flower and gifts shops they "nearly" ordered from (but never did) to show their sympathy.  I can't even begin to comment on this ignorance. 

Considering my child, at the ripe age of 14 months has already been put under anesthesia 4 times, that pretty much blows your "couple of surgeries" right out the window, doesn't it?!

We saw Ryder's plastic surgeon yesterday and unfortunately, he has a pretty decent sized hole in his palate that is not closing (which explains why food continues to come out his nose). We knew food coming out of his nose would still be an issue because there's an area of palate, behind his two front teeth, that they left open in preparation for another sugery (a bone graft at a later age). Anywho, back to the palate hole.....they won't do anything about this hole because it "could" close (but not likely) and more palate holes (which doctors refer to as "fistulas") could develop. Because Ryder's palate isn't "original", his palate skin won't stretch or grow as quickly as he grows. Kinda like taking some chewed gum and stretching it - if you stretch if far enough, tiny holes began to develop.  So looks like around the age of 5 Ryder will have yet another surgery to fill in these palate holes aka more skin grafts.  Around the age of 3-4 Ryder will have a cartilage transplant from one of his ribs to his nose to create a collumela (the area of nose between the nostrils). And around the age of 7-8, Ryder will have a bone graft from his hip to his gums to fill in some gum bone that he is missing and create gum structure so permenant teeth can be placed (Ryder is missing portions of his gum line as well as teeth). In addition to these surgeries, Ryder will have some crazy orthodontia work as well as a possible jaw realignment (I won't go into particulars about this sugery because it absolutely breaks my heart!). 

So to all of you who have said "it's just a couple of surgeries" or "I thought of doing something to show my sympathy but actually never did anything..."  why don't you take this advice and take it to heart. Next time.....just don't say anything at all and sometimes no, it's NOT "just the thought" that counts. 

This post could be a lot longer (sadly) but I've got to go clean up some toilet paper....