April 11, 2013

Long Time Coming...

Aside from being busy with the foundation, there is another reason that I have not posted much these past few months.  I have a secret.  One I have finally been kind of, sort of ready to talk about, but I never can seem to find the right words.  Some people might be thinking "just say it", but I can't just say it.  It has been a journey for George and I that began when I was pregnant and slapped us in the face while in the midst of cancer treatment.  As parents, we knew something, but at the same time, nothing for sure.  I have had a hard time posting anything else, because this is the thing that I wish more than anything to get off my chest, but it has been hard to find the right words to do it in a way that is respectful to everyone, especially our family.  On my last trip to NYC, I even mentioned posting about it when I returned, so you can see how long it is taking me to get it right if for no one else, for myself. This has been a journey for our family, so you going to have to bear with me as I bring everything full circle...
When I was fourteen weeks pregnant, I had an ultrasound that revealed my child had a dangerously large bladder. My normal OB recommended I see a specialist ASAP. Of course their ASAP would have been two weeks later. Lucky me, I knew somebody who knew somebody and so a specialist in Mobile saw us that same afternoon...long drive. We got there, the Tommy Bahama-shirt wearing doctor did an ultrasound and calmly proceeded to tell us our options:
Our baby had an enlarged bladder likely caused by an obstruction at the base of his ureter. Otherwise known as UPJ (for short). We would need to do an amniocentesis to drain the bladder. After that, there was a 50/50 chance it could reoccur. If it reoccurred, we would likely need to go to Cincinnati to see some very elite specialists. We would have to wait and see. There was more. Having any kind of issues like this especially this early on, can be a marker for syndromes. What? We would need to spend the weekend thinking about whether we wanted to proceed with the amniocentesis and run genetic testing on the amniotic fluid or in light of the complication and high risk for a syndrome, we could decide to terminate the pregnancy. Whatever we decided, we were due back to see the doctor the following Monday. All of the news was overwhelming to say the least. On the drive home, I remember telling myself, "wait until your home alone to cry, just hold it in.". I remember George on the phone with a friend talking about cooking out and my thinking what the hell? How can he go to a cookout? We just found out that if we continue with this pregnancy then our child will likely have a syndrome and he wants to go to a cookout? Apparently he did.  He went to his cookout and I went home and wallowed on everything. I remember crying and screaming on my Mom's porch the next day. I couldn't believe the whole situation. For those who don't know the back story, I'll give you the cliff notes: George and I were not married and like so so many others, we got pregnant on accident. It isn't something I talk about because well, it isn't anybody's business and there are a lot of judgmental people out there, but it is a part of this story.  I think some people might have doubted we would ever last, but here we are on this side of hell, still together. So back to it... I was a distraught 21-year-old screaming and crying on my mother's porch because my accidental pregnancy had just turned into something so so much more. I had a choice, I could have terminated the pregnancy and gone back to being a semi care free 21 year old once again. I'm just not built that way. I was taught you take responsibility for your actions. And while I am very much a pro choice kind of woman, I don't believe in abortion without justifiable cause and for me, accidentally getting pregnant was not justifiable. So I made my choice to keep going. And for those wondering, I did involve George in the decision process.  Thankfully, we were on the same page with everything.
George was quite sweet about it. I asked him in the car one day how he would be if our child did have down syndrome (this was the syndrome doctors mentioned most to us) and I'll never forget his response; he said, "I think I would be fine. I even think I would be partial to a child with a mental disability." George has a sweet aunt who has a mental disability and so he has grown up interacting with her and so the idea of loving and caring for someone with a disability wasn't uncommon to him. He grew up watching his father's love for his aunt and seeing how well his father and uncles cared for her. To him it seemed natural...it seemed normal. For me it scared the hell out of me. I was always the person who saw anybody with any kind of disability and wished I could do something, anything for them, but never knew how to interact with them very well.  There was so much about the disabled I did not understand.  I remember my mom told me it would be a blessing, she said that when other children can be cruel and mean (I know she meant me), she said children with disabilities like down syndrome will love you always.
The following Monday we went in, did an amniocentesis to drain the bladder and they drew amniotic fluid for genetic testing. More cliff notes:  The rest of the pregnancy was filled with every other week appointments and toward the end even twice a week appointments. We were watching to see if the retention from the bladder caused any kidney damage. We did find kidney damage, though the doctor said it would be hard to know anything for sure until the baby was here. We also learned that the testing on the amniotic fluid showed no signs of a syndrome...
On November 5, 2008, Clayton was born. After a whopping 20 hours of labor, he was here. The umbilical cord had been wrapped around his neck, and I remember the fear waiting to hear him cry.  Thank god he did. One of what seemed like 15 nurses in my room, gave me a super quick glance and whisked him off to the NICU (and when I say super quick I mean like a one second glance I didn't see coming).  This picture was the first good look I got at Clayton:



The next few days were a blur of, "yes, he has kidney issues...you will need to go to UAB...we are going to need to do surgery...".   Before surgery:


 



Only one of his kidneys was functioning and it was only functioning and about 1/3 of what it should have. They operated on him at 10 days old to try and repair the functioning kidney and give him the best chance possible.   After surgery:

 
The surgery was a success, but the recovery was awful.   The swelling was horrible!!!  We spent his first 65 days in the NICU before we were allowed to go home. During this time, they did more genetic testing, all of which continued to come back as normal allowing us to breathe a sigh of relief...
Clayton was on a feeding tube for the first three months after we got him home. We hated putting that thing in and out. I remember there was one night I saw blood in it and freaked out calling our home health nurse. She's been with us from the beginning, but I digress.
Every other week we would drive to Pensacola to see Clayton's nephrologist. We also checked in reguraly with his two urologist at two different hospitals. As time passed, we got to spread these appointments out more and more. But we also had to throw a cardiologist and orthopedic surgeon into the mix. Clayton had hyper tension we had to treat and his scoliosis started to develop around six months. We also picked up a neurologist, a geneticist and an ENT along the way. The next two and half years were spent doing two more small outpatient surgeries at UAB and visiting all of these doctors routinely. When it finally seemed like things were slowing down and stabilizing, we checked in with all of the doctors in a couple month's time to get the go ahead for me to start working. It seemed like I had the all clear. So on October 23, 2011 I started work for the first time since Clayton was born. On November 22, 2011 he was diagnosed with cancer. Oh yes, this is that "are you kidding me" moment.

Y'all know what happened since then. What you don't know is this... After he was diagnosed, our geneticist was consulted to do more testing. They were looking for a link between everything.  If they could find the link it could help them to better treat everything.  There had been a test the geneticist had wanted to do before, that insurance would not have covered, but now that he had cancer they were willing to cover it, so we sent those and a couple of others off and went about our treatment.  We were sitting in the clinic one day last February, when the geneticist walked in and gave us the news.  One of the tests had come back positive.  The tests that insurance would not cover before.  Right there in the middle of cancer and in the middle of a room of people we got the news.  We (mostly me) made the decision not to tell anyone.  We told our parents that they discovered the specific gene mutation that was responsible for the various medical problems we were confronting and was also responsible for his developmental delay.  Completely true.  We also told our parents that many children with this gene mutation often have delays, but catch up by grade school.  Again, true.  I know they did not like being kept in the dark, but it was not their choice and this has been mine and George's issue to deal with and process.  Everyone else's wants and needs as far as being kept in the loop were secondary to George and I doing what was right for us.
George and I use to wonder if we just weren't as good at interacting with Clayton and teaching him as other parents were with their kids.  For a couple of years, we went back and forth between "it's him" and "it's us".  This has been hard for both George and I (probably mostly me) to come to terms with and even harder because this particular syndrome is not common, not well known and has a wide spectrum of developmental delay.  Many children grow out of their developmental delay by grade school and have perfectly normal IQs, however, there is a chance that the delay could persist beyond that.  There is no way to know other than to wait and see.  Serious concerns associated with this syndrome would be a huge deal if we were not already faced with them: scoliosis, frequent upper respiratory infections, heart defects and cancer among others.  Less serious side effects we have already seen include excessive growth in childhood that levels out during teen years, premature tooth eruption, nystagmus (eye movements) and poor temperature control.  It also puts Clayton at an increased risk for seizures, pre-diabetes and thyroid disorders.
As silly as it might sound, I am not going to give the particular name of the syndrome.  If people Google it, they might get an inaccurate picture in their heads and I don't want that for Clayton.   People hear down syndrome and they don't need to Google it, most of us are aware of the general things associated with down syndrome.  If somebody heard the name of this syndrome, the response would be a "huh?"  The idea of limiting Clayton breaks my heart.  Clayton will grow up in this community and I don't want him to be limited as he grows because some stigma regarding this syndrome was placed on him as a child.  He might be delayed all of his life and very much like a child with down syndrome, but he might also end up being completely normal developmentally.  If he ends up being completely normal developmentally, I would hate for anyone to ever judge him based off of this syndrome.  It sucks, because it isn't fair to allow this syndrome the opportunity to limit him, but it also isn't fair to expect more of him than he will ever be able to give.  At this point we have no idea what to expect.  All we know is he is an amazingly smart little boy.  He takes in everything, he just doesn't put it back out.  So we wait...
For some of you this may seem silly and not be a big deal.  Maybe I am being semi dramatic.  I love my child, I want to give him the world and I HATE the idea of him ever being limited more than he already will be.   He is four years old and already, he will never be able to have kids.  For years he will be limited by the rod we are most likely going to be inserting in his back after traction.  He only has one functioning kidney and so contact sports are out of the question.  He has so many physical limitations, that the idea of putting any unnecessary mental limitations on him breaks my heart.  Maybe its stupid, but not putting a name to it right now helps me in some weird way.

I can't say that this post is everything I want it to be, but if I continue to think about it, I will again read, erase and draft it as I have done for months.  I am really ready to get it out there.  Maybe this is a step by step process and this is just one of the steps.  Acknowledgement.  I suppose the next step is complete acceptance; which I suppose is my hesitation, I don't know what I'm accepting, because I have no idea how this journey will go.

Our life with pediatric cancer was lonely before we went to NYC and in that same way our life not knowing what to expect with Clayton's development was lonely before he started his preschool program that is for children with delays.  That has put me in touch with other local moms since last August and that has helped so much.  Two of us had our kids on a play date one day and were talking about how we respond when people ask us about it.  This mother was in the same situation as me; her child's situation had a wide spectrum of developmental range and they have no idea where their child might end up.  It really is a frustrating thing.  You want to be able to answer people, but the truth is you have no flipping clue!  Meeting these other moms, even though we don't see each other much, it has helped me enormously.  If you know a mother with a special needs child, she is more amazing than you will ever realize I promise!  The sacrifices these mothers make and the struggles they endure are beyond character building;  it is a testament to the kinds of women these ladies are because there are a lot of people who couldn't handle it and would choose to walk away. 


Which brings me to another thing...George.  (forgive me, I am not good at public stuff like this, but George knows that ;) )  He is a wonderful man.  Many men would have walked away a long time ago, but George can't get enough of Clayton.  All of our trials break his heart, but only make him love Clayton more.  Not all men can handle these things.  For the men that do though, they are a rare breed.  They not only stand by their child throughout everything, but they stand by their wives who have to battle the emotions and hormones that come from a life with these sorts trials and tribulations.  I can honestly say, that there has never once been a time when I felt like George might walk away because Clayton's life was too much for him.  So for all of those dads that out there like George, they deserve a big something.  I'm not sure what it is, but they deserve it.  Maybe its simply admiration or respect.  I don't know.  In case the Duck Commanders ever read this, George deserves an awesome duck hunting trip...wink, wink.

No matter how our journey continues, Clayton is AMAZING! Once he gets to know you, he is so loving and silly, silly, silly.  He wants to be by you all the time and he cuddles...he is perfect.  NO matter how he develops, I wouldn't change it, I only wish I knew what to expect.  The unknown is hard.  I could not imagine a more perfect child though.  He is especially perfect for me and George.

To all of those couples standing by each other through the toughest of times and to all of those parents standing by their children when things don't turn out as planned...



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