One Unlucky Little Boy

This post is laden of heavy feelings...so if you are not into emotional stuff, STOP READING!

Sometimes I can't help but feel really sad for my little guy.  I love Sterling so much and it is just hard to see how much he has had to struggle in life and just how much more he is going to have to struggle.  I often feel that it is so much harder as a parent to see your child go through so many tests and procedures and pain then actually having them done to yourself.  I would take all these things from him if it was possible and have them for myself!

One of my friends wrote a post the other day that got me thinking about Sterling and all the horrible things that he is going to have to hear his whole life.  I have had so many people tell me their uneducated thoughts and ideas and what I am doing wrong as a parent or what they think about Sterling's disability.  I have learned that it doesn't really matter what they think and that they are just uneducated and him and what do they know about raising my child?  And you know what, I don't even know the last bad thing that was said to me about my parenting or even derogatory comments.  I am sure that there were things said because the first year of his life I heard so many but I take them all with a grain of salt now and they just go right past me.  I have been a much happier person since.  I hope that my son will be able to take this advice from me, but I am sure that he will considering the type of personality he has.  Anyone that knows him knows that Sterling is not short of personality and style.

Sterling's unlucky status has hit an official high yesterday,  but I will get to that later.

The first time I saw Sterling, I know this is an awful to think but one of the first things I thought and actually said out load was....What is wrong with his ears?

Now it is really hard to see in this picture but I was much too lazy to head to the basement and hunt down a closeup.  I kept asking everyone and anyone if they thought there was something wrong with his ears and everyone looked at me like I was a crazy person.  So I let it go...

We met with the plastic surgeon that did the beautifying after the neurosurgeon did his thing with Sterling's myelomengicele and he says to me, "I noticed during your sons surgery that he has a rare defect on his ears". AHA, so I am not a crazy person.  We learned that Sterling had an unfurled ear (the top corners of the ears didn't curl over like the rest of the ear) and if not taken care of while a baby it leads to having the top part of the curl on the ears being floppy and folding over as an adult.  So rare that they took photos to pass around all the hospitals in Alberta and the medical schools as a reference to what it looks like.  So 2.5 months of splinting and taping his ears over (not as easy as it sounds, there were tons of appointments and angry baby involved with this process and no one to model the process after because it was so rare.  It took several different attempts to finally figure out how to make the splint work properly) and he has perfect little ears that you can never tell there was a defect on.  

This leads to unlucky event number two...Sterling had his surgery for his sac on his back when he was just 28 hours old.  He was not allowed to eat anything until he had his surgery.  So the poor little guy was starved for 28 hours prior to his surgery and then the 18 hours after.  Now I knew to expect this since I was 18 weeks pregnant so that was a given.  But what we didn't expect is that I have these freakishly skinny babies.  Both Sterling and Emery did not have a lot of baby fat when they were born.  Which is alright is most babies...but unfortunately and unlucky for Sterling it did matter.  Why?  Well, in order to remove the sac that he had on his back there was a big hole left in his back that needed to be properly covered to protect his spine and nerve endings.

You see the sac on his back was so large that he needed enough skin to cover it all up.  This is normally not a big problem with most babies because they have so much fat and skin is able to stretch really far.  Well, Sterling was so skinny that he didn't have much stretch in his skin and definitely not enough stretch to cover his whole spine.  So the poor little baby had to get skin tension cuts to force the skin to cover the important parts.

So in addition to the normal one scar down his back, Sterling now had one large scar down the middle of his back and two gaping holes shaped like footballs about 2 inches long and 1 inch across.  Which he had to get scrubbed twice daily in order to stave off infection.  I think that was so much harder to watch than anything else.  Seeing your poor new baby getting scrubbed in his wounds twice a day for 2 weeks while he was screaming in pain.  Poor little guy.  I have a love hate relationship with thinking about the first few weeks of Sterling's life.  I feel so bad for him when I think about it but I like to think about all the stuff that he has gone through and it makes it easier to not be quite so mad at him when he gets into trouble (notice the use of quite...I still do get mad like the best of them).

Then the little guy turns out to have a really low store of iron because of all the blood loss during surgery.  Se he had to have twice weekly blood tests to count the iron stores in his blood.  Which, never went over well.  You see, I have these impossibly small veins that no one can ever seem to find when they take blood.  I have had professional blood takers and people that never miss and vein and nope, can't find them.  It usually turns into a 45 minutes event of being poked by three different people moving the needle in and out of the same hole several times.  Each person can only poke you twice so that means that they keep that needle in and dig and dig and dig for 5 minutes at a time to try and find it.  Well, my son inherited this weird vein issue.  So it was 25 minutes each time of them poking and poking his arms and him screaming just to take a blood test every 3-4 days for months.  Yup, weird vein thing and tons of nasty iron medicine.  

His fourth unlucky event....a hernia.  The little guy had to get a hernia surgery at just a few months old.  What luck?  Another surgery and another problem not linked to the Spina Bifida.  It was a relatively easy procedure and usually only a day in the hospital but since he was so little he had to stay for several days.  Still, another surgery on top of a lifetime of surgeries that he is going to have to endure makes you feel bad.

Fifth, he had to get a shunt for hydrocephalus (spinal fluid getting caught and stuck in his brain).  Now it is pretty common to have to get a shunt because Spina Bifida and Hydrocephalus are linked but you can get Spina Bifida without Hydrocephalus and you can get Hydrocephalus without having Spina Bifida.  So I am not sure you can call that so unlucky because he has had his shunt functioning longer than most.  50% of shunts fail in the first year, 80% of them fail by year two.  Sterling has had his shunt for 2 years and 4 months so that is lucky.  Especially considering that I know a little girl that is the same age and already has had 12 shunt surgeries.  So there is always things to be thankful for.

His last and maybe one of his first unlucky things is that Sterling has been prone to mass vomiting on a daily basis since he was a baby.  From the first time that he ate at 3 days old he has been a projectile vomiter.  I mean he has reached 10 feet before when he was a newborn.  I kept being told "This is normal and he will grow out of it by a year".  Well, I am pretty sure that it isn't normal but with so many appointments and so many people telling me this (I mean in the first 6 months of Sterling's life I probably went to 100 medical appointments).  Then at a year I bring up that he is still doing this and am told "it is normal and he will grow out of it by 2-years-old".  Well, now Sterling is two and still having projectile vomits but it slows down to every other day....Well, ok, maybe it is getting better but then this last 8 weeks it has now changed to vomiting at least once a day and sometimes up to 2-3 times daily.  Soooo not normal.  

Every time that Sterling gets the flu or gets really irritable or vomits more I have to be extra careful that it isn't a sign that his shunt is malfunctioning or has an infection.  Which, often leads to going to the hospital to get yet another MRI (which he really really hates) just to make sure because it is a time sensitive procedure with serious consequences.  Like yesterday, I spent the whole morning getting an MRI with Sterling who was screaming bloody murder while I was holding him down in the MRI machine while in the meantime Emery is screaming bloody murder because some strange nurse is holding her because she can't come into the MRI  room.  Which, him screaming meant  he had to stay longer in the machine because he kept moving every time they took a picture of his brain.  After the test we go out into the waiting area where there are several terrified children that the MRI machine is evil and that they are about to be tortured half to death.  

Well, turns out it isn't his shunt which everyone including the neurosurgeon was convinced it was.  Great....I mean, that really is great news but now what does that mean?

So...now they think the poor little guy has had some sort of intestinal track problems his whole life (also not linked to Spina Bifida).  So, this means that he could have an allergy, reflux or that his bowels just aren't functioning properly.  Now he is going to be booked with another specialist in which they are going to do tons of more tests and procedures to try and figure out what is wrong.  I just feel sorry for the little guy and he already has to undergo kidney ultrasounds, MRI's, several x-rays and another multitude of tests twice a year including blood work and other stuff.

I think that the biggest thing that I have gotten out of Sterling's suffering and life is his positivity.  I totally believe that I am the luckiest parent and so are all the children that I will have after Sterling.  I think Sterling will teach my other children a great many lessons. And in order to kind of get some of the suffering he has experienced (unfortunately, there has been more) I thought this post might relate some of the things that he has gone through.  I mean after all the horrible luck he has had and he is still one of the happiest most social little boys around.  He gets about 25 people to smile on every outing.  I love having a child that brings so much joy and happiness to everyone's lives.  How could you not be so proud to be a parent of this amazing child?  And most of these people don't even know that he is disabled because he is in a shopping cart or stroller.  So it just shows the power of his happiness and how catching it is to be around him.

  How after all this how can someone still be so happy and positive?  Don't get me wrong we all get down sometimes and I would be worried if Sterling was never upset about all his trials.  He told me just the other day, "Mama, sometimes it makes me sad that I can't walk like you.  I can only crawl".  I told him that is was good to be different and that it made him extra special and that he got to own a cool wheelchair....You know what he said?  He just rolled his eyes at me and said "No, it just means that I can't walk not that I'm different".  What a smart little boy and he just only turned 3.  Sterling is completely right.  He isn't different and I love him so much for him being the way he is and teaching me so much!