Sunday, May 6, 2012

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…

Monday, April 30, 2012

Been a Long Time Coming


I am so, so sorry to the faithful readers of my blog.  I feel like a terrible blogger for not posting any updates in such a long time.  Truth is, it’s hard to find time to write when I am working so much and trying to raise two boys at the same time.  But, here I am.  Finally getting an update out to you.

Gabriel will be five months old already tomorrow!  He is now laughing (mostly for my mom only) and has successfully rolled over from back to front twice – although I think the second time might have been assisted by a certain 5-year old who says he ‘might’ have helped!  At his four month check-up, we found out that he weighs 16 pounds!!  Technically, he was supposed to have doubled his birth weight by four months, but since he started out over 10 pounds, I don’t think three little pounds make much of a difference.

We were given the go ahead to start feeding him cereal at his appointment.  The pediatrician said it is not really important that he starts eating now, so if he doesn’t, it’s not a big deal until he is six months old.  Let me tell you – spoon feeding a baby with cleft is an interesting challenge!  I haven’t had much luck so far with the whole feeding thing, but we are working on it.  Because Frank still protrudes a little, I have had to try to figure out how to get the spoon in his mouth without hitting Frank every time.  I have tried getting the food off the spoon by lightly scraping it onto the backside of Frank – that didn’t work.  I have tried putting the spoon in upside down to give him something to press his tongue against since he doesn’t have a roof of his mouth – that didn’t work either.  Truth is, I don’t know if the problem is the clefts or just the simple fact that he doesn’t like the taste of the cereal and the process of eating off a spoon.  I haven’t given up; I just don’t suppose I am working at it as hard as I would be if he didn’t have the clefts.  I try to add as little stress to his life as possible.

I have been getting a lot of the same questions lately, so since we are in kind of a lull right now as far as surgeries and drama are concerned, I am going to take the opportunity to answer some of these questions.

How do you deal with everything?
Honestly?  I just do.  I have a responsibility to provide my child with his basic needs and to shower him with all the love I have to give.  If I focus on that, dealing is easy.

How can you speak about all of it without crying and keep a smile on your face?
I have learned that feeling sorry for him, and thus feeling sorry for myself, does not help our situation.  It would be a lie if I said I don’t still have my moments where sadness for his situation doesn’t weigh heavily on me.  I falter, and luckily, I have my husband to pick me up.  But the truth of it is, I talk about everything so much that it just gets easier and easier all the time.  I can’t focus on the clefts for fear that I won’t enjoy all the wonderful moments this child gives me.  It’s not fair to him and it’s not fair to me.

How much have his surgeries cost?
Good question.  Gabriel’s surgeries, so far, have totaled $75,000.  This does not include any doctor’s appointments and if you have followed closely, we have four doctors we see on a regular basis.  The first surgery cost $25,000 - $6,000 of which was oral medications alone (Infant’s Ibuprofen and Children’s Tylenol)!!!  The second surgery cost $50,000 – as far as I can tell, $32,000 of that was just removing the Latham Device.  I would like to take a moment here to say – thank God for insurance!!!!  I honestly don’t know what people without insurance would (or wouldn’t) do.  We met our deductible for Gabriel with the first surgery, so as much as I don’t want him to go into surgery again anytime soon, I will be pushing to make sure his third surgery happens this year.
 
Funny thing about the cost of surgery though.  I get postcards in the mail all the time from cleft organizations looking for donations.  They say that by donating $250, you can pay for a child’s entire cleft lip and palate surgery.  $250!!!!  Our surgeries have cost $75,000 and Gabriel’s palate hasn’t been touched yet.  We still have the palate repair, the full lip repair, a possible additional gum line repair, possible jaw realignment, and a possible nose job – and that’s if all future surgeries are a success the first time.  They can do it for $250 – amazing. 

What comes next?
We have a couple of upcoming important appointments.  We meet with the plastic surgeon on Monday to see how the progress with the one-sided gum repair is going as well as planning for the timing of the next surgery.  He will also have an appointment in June with the ENT doc to do a sleep study to evaluate just how well he can hear.  We don’t really think he has a hearing problem, but because hearing problems are so common in cleft children, it is better to know now.  And then, around 11 or 12 months of age, he will have his third surgery.

Dr. S has not completely ruled out the possibility of closing the other side of his gums at the same time he closes the palate and completes the lip repair.  Typically, Dr. S would do this surgery at 7 or 8 months of age, but because he wants to get as much growth as possible out of Gabriel’s gum line, that is his reason for pushing the surgery off until 11 or 12 months.  Additionally, Frank still protrudes ever so slightly from where we thought he would after the last surgery.  When we asked Dr. S about this, he said ‘Frank is going to do what Frank is going to do.’  The other objective of waiting to get as much growth as possible before the next surgery is to hope the upper gum line comes out to Frank, as opposed to trying to get Frank to go back to the gum line.  The full lip repair will help put Frank in his right place, but without the gum line growing, Frank may never be exactly where he belongs.  The only thing that really concerns me about this is just not knowing where Gabriel’s front teeth are going to come in.

How is he otherwise? 
Gabriel is wonderful!!!!  He is so happy all the time!!!  He eats well, he smiles constantly, and just recently he started sleeping in his crib!!!  I had him sleeping in his swing after the Latham Device was implanted because when he spit up, the formula would rarely make it out past the device.  Sleeping in a more upright position was the best solution for him at the time.  Now, I have run out of excuses to not have him in a crib.  We started crib training this past Friday.  The first night he slept for 4.5 hours straight – a long way off from the 9-11 hours he would sleep in the swing!!  Apparently I was extremely tired when I went up to feed him after 4.5 hours because the next morning I realized he was back in the swing and I honestly don’t really remember putting him there!!  Saturday night he slept 6.5 hours straight.  I fed him and put him back in the crib where he slept for another 4 hours.  Last night he slept 10 hours straight!!!  I am keeping my fingers crossed that the success continues!  Now, if I could just get my 5-year old to sleep in his bed…

Anyhow, I think that’s enough for now.  As the questions keep coming, I’ll keep providing answers!  I will also post some new pics next time.  Until then…