I might just be the world's worst blogger

I suppose you all think I have fallen off the face of the earth!  Truth is, we are in such a lull right now that I actually start to forget about Gabriel’s clefts, and then sitting down to write on my blog only reminds that they are there.  The other day I was giving Gabriel a bottle with a new nipple on it.  For some strange reason, with the new nipples, he lets all the formula run out the side of his mouth.  In frustration I actually said to him, ‘Geez, Gabriel.  It’s like you have a hole in your lip or something!’  Then I realized what I said and thought, oh yeah, you do.  You actually have two.

Our Gabriel is nearly seven months old already!!  It’s hard to believe.  Sometimes I get lost in my thoughts thinking about how hard things used to be.  Thinking about going three solid days with absolutely no sleep, with Chad (nearly) and I (fully) in tears thinking we were hurting our baby because we couldn’t figure out how to feed him.  Days spent trying new things, worrying about his health, fighting with each other because we were so lost in our emotions.  Taking him to doctors, usually more than once a week, watching his weight going down further each time.

Taking him to surgeries, both of them.  Holding him in recovery and sobbing because he looked so different, was so sad, and was still not done.  Tightening the screw twice a day in the Latham Device, cleaning old formula out of the Device while he screamed, listening to his screams from waiting rooms at doctor’s offices. 

Finally getting him to eat.  Seeing his first wide smile.  Getting the Latham Device out.  Seeing him with nostrils for the first time. Watching him roll over.  Hearing him laugh.  Getting splashed in the bathtub.  Listening to endless squeals of delight and baby gibberish.  Rocking him to sleep before his first official night in the crib.  Seeing his happiness every morning when I go in to rescue him from said crib.  Knowing he is happy – truly, truly happy.

The bad parts are starting to feel like they are just part of a dream – a nightmare in some cases – but an increasingly distant dream.  I know all the bad is not over.  We have one more surgery this year, and I don’t know how many after that – but man, we are such blessed and fortunate people!  Gabriel is a true light in the darkness.  I could spend the rest of my life without the sun, moon, and stars as long as I have him to light my way.

So, other than reminiscing, life has been rather ordinary lately.  No doctor’s appointments, no drama, no problems!!  We did have his six month check-up with the pediatrician.  I am thrilled to say he has finally doubled his birth weight!!!  All systems seem to be in working order and he is developing almost exactly as he should.

I say almost exactly because the pediatrician is concerned that his speech might be a little delayed.  By six months old, babies should be saying nonsense that starts with consonants – i.e. maa, baa, laa, daa.  Well…Gabriel doesn’t.  Truth be told, if you slow down and really feel how your mouth creates these sounds, they almost all require a full set of lips or the pressing of your tongue against your palate – neither of which has he.  I am not really concerned at this point, but she has asked me to go ahead and contact one of our speech pathologists to see if they want to start working with him now or after the palate surgery.  Contacting them is on my list of things to do…

We also started feeding him baby food.  That has been quite an experience!!  First, I couldn’t get past Frank because Gabriel refused to open his mouth far enough.  Then, I would finally get the food in only to have it come back out through his nose.  There is nothing worse than cleaning out your child’s nose with a Q-tip and still digging out puréed sweet potatoes three days later!!  I think he might be getting it.  If I put the spoon in on the right, the opening in the palate is much smaller there, so he can get most of the food down without it coming out his nose or running back out with his excess saliva.  I don’t suppose he eats as much as a baby without cleft, but since he weighs over 20 pounds, I hardly think he’s starving!!

In July, we go back to see our ENT doc.  He will determine at that time if it is necessary to do a sleep study to evaluate how well Gabriel can hear.  They will basically get him to go to sleep and measure the sound waves going into his brain.  Some days we do think he might have a hearing problem, but other days – such as the other night when I was trying to get him to fall asleep and he heard his brother making noise downstairs – we think he hears perfectly fine.  It’s probably selective hearing like his father.  I guess that’s why there are experts in the world.  I have been working on some sign language – just in case.  I didn’t think he was getting it until last night when I signed milk (which, of course, is formula) and he started smiling and kicking his feet!

In August, we go back to the Plastic Surgeon to start planning the third surgery.  I am dreading it as usual, but would like to at least know when it’s going to be so I can start building my wall of strength.

Well, that’s all there is for now.  I know – not very interesting, but I am rather quite enjoying not very interesting right now! 

Thought that you might have, some advice to give, on how to be, insensitive

I feel like such a liar.  I spend my time telling all of you about how strong I am for my son, and yesterday my strength was put to the test, and I failed.

We took our boys to the zoo for the first time this year.  There were a ton of people there!  The weather was perfect, the animals were out (except for the prairie dogs – boooooo!), and we had a great time.  However, I realized that I am still sensitive to the acts of others where Gabriel is concerned.

When we were walking to the zoo from the parking lot, we passed two people in wheelchairs who I am assuming have cerebral palsy, but since I am not a doctor, that was only a guess.  Either way, as we are passing them, Ethan asks us what is wrong with one of their arms.  Once we were out of earshot, we stopped and told Ethan that God makes all people different and unique and while it is ok to have questions, we should save our questions until we are in a place where they can’t hear us discuss what makes them different than us.  We asked him how he would feel if everyone asked questions and stared at his brother because he looks different…well, you can probably guess what’s coming next.

While we were standing in line, there was a little boy next to us asking his mother what was wrong with Gabriel.  I didn’t hear her response, but the little boy just kept studying our Gabriel’s face.  I wanted to explain it to him, but turned my back instead – I just never know what other people want me to teach their children, so it was easier to turn away.

Chad and Ethan went to ride the sky lift – I sat on a bench and fed Gabriel.  We watched all sorts of people come and go and then a family was leaving the sky lift area speaking Spanish.  One of their little boys walked by and just glanced at Gabriel.  Then about 10 feet later, he comes sprinting back, stands about two feet in front of us and yells to his parents in Spanish.  They yelled back and eventually he went with them.  I know it’s ridiculous, because I couldn’t even understand what they were saying, but I spent the rest of the wait trying not to cry.

As we continued our trip to the zoo, at least six other children and a handful of adults all stopped at some point to stare at my baby.  There were two couples who did take a look at him, but one just asked me how old he is and said he was beautiful.  The other stopped and asked if his palate is involved.  I said yes, and they explained that their niece was also born with cleft lip and palate.  They said she is 13-years old and just had her third nose repair.  They were extremely nice and said that Gabriel is beautiful, but I just couldn’t get past a 13-year old having their third nose job.  I had another one of those moments where I just sunk into this horrible feeling that all of this is never going to end.  I am never going to be able to tell people exactly how many more surgeries or when he will be done with surgeries, because nothing with cleft is certain.

By the time we were driving home, my mood just got worse and worse.  God, I felt like such a hypocrite.  I have always had an ‘I don’t really care if people like me or not’ attitude.  The only people whose opinions matter are those that I love.  If you don’t know me, and you don’t like me – I am not going to spend a second of my time worrying about that or trying to make you like me.  In my version of heaven, those I loved on earth will be there in my eternity.  If you didn’t make the cut because you chose to hate me – no big deal – I won’t miss you.  Every day I say my mantra – ‘no one can make you feel inferior without your permission’ (thank you Eleanor Roosevelt).  I raise my kids in the same fashion – or at least I thought I did.

How am I ever going to teach Gabriel that his scars don’t matter?  That whatever happens to his teeth is no big deal?  That he should not care what people say, do, or think of him?  How am I supposed to teach him to be a strong, independent, confident, mature person when I nearly cry over kids staring at him?

I don’t even know what they were saying or thinking and yet, the second I catch someone looking his way, I start obsessing over what they could possibly be thinking or saying as they walk away.  And honestly, they could just be thinking that he is a cute baby – because he is.  I don’t know, and the point is, it shouldn’t matter.  They shouldn’t matter.  If it were me and my scars, I wouldn’t even remotely care about what they think.  I have a several inch scar across the back of my neck from having a benign tumor removed a few years ago – I cut my hair short knowing that people would see it and wonder what it is – and didn’t care.  When I meet my goal of losing 65 pounds and my husband and I go on a cruise - despite the fact that I have stretch marks on my stomach, scars from having my gallbladder removed, and two nasty C-Section scars – I am going to wear the world’s smallest bikini and I am not going to care. 

 

So why can’t I not care about what others think of my child? 

 

Sometimes I think that if people knew him like I do, they wouldn’t even see the clefts.  Sometimes the clefts actually take me by surprise when I walk into a room because I forget they are there.  He’s a beautiful, wonderful, little boy – and I suppose that’s why I don’t want him hurt by the obnoxiousness of others.  I don’t want him to lose his sweetness because of things that are beyond his control.  And damn it all, I don’t want him to ever feel inferior without his permission.

  

I guess I, once again, have some work to do…