Wednesday, September 28, 2011

Most recent

What a week this has been!  Oh, and it's only Wednesday!

On Monday, Wyatt had PT, OT and Speech Therapy at 8am.  During therapy, he seemed to be sleepy and just not feeling well.  The older that Wyatt gets, the more defiant he gets.  Mike blames me, but,  ok, so maybe that is from me.  Anyway, he wasn't very cooperative at all during therapy.  The worst part was that we had an appointment with the Vandy geneticist at 11:30.  

On our way to Vandy, Wyatt slept.  Our drive to Vandy is only 20 minutes, typically.  I knew we were going to be early, so I just took my time.  When we arrived, he was still asleep so I tried to to jostle him to wake him.  Thank goodness he slept until it was time for weight and measurements.  This nap was much needed!  (We also saw his PCP on Tuesday who said we have another double ear infection.)

For those of you who have noticed, we have seen a geneticist in the past.  The one we saw was part of Centennial, the hospital where he was born.  This geneticist, is part of Vandy.  I felt it was better to centralize all of his doctors to Vandy.  It's much easier for his care.  Their computers are all linked and they have access to everything, making it much easier to look up information they may need.  This appointment was made more than 6 months ago, but I was able to get in to see the other quicker, so I kept it.  I know, crazy mother!

Anyway, this visit was very bittersweet.  During the first five minutes of seeing Dr. Phillips, he diagnosed Wyatt with Moebius Syndrome.  Now, if you have followed my blog previously, you know that from the time he was three months old, I have questioned Moebius.  I had researched it for quite a while and felt as though he may have it and I questioned many doctors about the possibility that Wyatt had this syndrome.  We even saw another geneticist who assured us that he did not and that all of the issues I had noticed that were similar to Moebius, were simply low muscle tone.  Within the first five minutes of meeting Dr. Phillips, and with the first six questions he asked me, he had diagnosed Wyatt with Moebius.  

While this diagnosis is disheartening, it is also a sort of relief for me.  It's strange, I know, but I feel like the weight of the world has been taken off of my shoulders.  I am not sure why this is, but I really feel relief.  I have known all along that there was something else going on that was yet to be diagnosed.  I knew my child had Moebius.  I hate that I wasn't listened to.  

Of course I go back to questioning myself.  The geneticist, Dr. Phillips, explained how Moebius Syndrome is "marked" in Wyatt's DNA.  I know that there was nothing that I did, or could have done to prevent it, but I still question things.  Then I ask why us?  I question why Wyatt.  I just want answers.  But, I know that I will never get answers to these questions.

However, with this diagnosis, I also question the future for Wyatt.  Knowing and seeing other children with this syndrome, I ache for Wyatt's future.  He will face so many more mountains than other children.  Even if he had just been diagnosed with Poland Syndrome and lived with that, he would have mountains to climb that most others wouldn't have.  But now that we have an added diagnosis, we have added mountains.  Wyatt will not be able to move his face.  The tiny movements we get now, that I associate with a smile, are all I will get.  Wyatt will be unable to move his eyes laterally (left to right).  "Moebius Syndrome is a rare neurological disorder that affects the 6th and 7th caranial nerve, leaving those with the condition unable to move their faces and unable to move their eyes laterally."  -  With that being said, my son will never be able to show emotion through his face.  He will not be able to frown or smile normally.  He will not be able to look left or right without turning his head to do so.  He will have problems swallowing and eating and may possibly have speech issues.  He could someday have vision, hearing and dental issues.  This is all so much for a mother to digest. 

I have thought about so very much in Wyatt's future since before his birth.  I went from thinking that he would die at birth to being thankful that he was alive and thriving.  To thinking he was dead in my arms, to being thankful that he was crying during an attempt to get an IV.  Then we are faced with knowing that without a surgery to "tact" his aorta to his sternum that he could die, to being thankful that he made it through.  Followed by the fact that my child had to be intubated and not knowing if he would make it, then to another surgery followed by a trach and vent to keep my baby alive.  And just when I thought it was all downhill from here, we are hit with this.  When I once thought about being worried if he wanted to play sports and get hurt, I now worry about protecting him from the cruelty of those around him.  Not just children, but adults.  How do you explain to someone staring at your child that he is unable to smile?  How do you tell someone that he can't blink?  How do you stop people from staring at your child, possibly causing that child to be self conscious?  How do you teach your child to love ones self when society is there telling them that they are not good enough because of the way they were born?  There are people every day that we tell aren't good enough for one reason or another.  The song "Born This Way" by Lady Gaga is running through my mind.  I want my baby to know that he is perfectly perfect, just the way he is.  But, how do I help ease the pain and rejection from others?  I know this personally because of my weight, but I don't want him to know this pain.  If you take nothing else from this blog, please teach your children acceptance.  Please, teach them that just because someone is different from you doesn't mean that they are bad.  It doesn't mean that they are scary or mean or dirty or ugly.  They are just like everyone else, God just made them out of different materials.

With that being said, I have found to be an incredible resource for me.  I have found mothers and fathers who have grown children with Moebius and are will to tell their experiences.  Also on this website, I found that the Foundation has a conference every two years.  In 2010 this conference will be in Philadelphia.  Mike and I are determined to learn absolutely everything we can about this diagnosis so that we can provide an environment for Wyatt that he is able to thrive in.  So, as of right now, our plan is to travel, with Wyatt (granted we are off of the vent) to Philly next year to learn more about his syndrome.  We will also be able to attend seminars from people who have children with Moebius and from adults with Moebius.  We will be able to connect with others and share the information about our children, in hopes of helping each other.  It's a support group that friends and family just can't provide.  It's a group of people who are able to share their journeys in parenthood with children with Moebius.  

Pray for us as we live in this new diagnosis.  It feels as though the wind has been knocked from our sails.  I know that we will sail again, but for now, I grieve.  I don't know what I grieve for.  What have I lost?  My baby is here, and amazing!  He laughs when I blow raspberries on his belly.  He is into everything!  He is so curious it amazes me.  He is so stubborn that I have to laugh!  I can't explain my emotions at this moment.  It's so difficult.  Just pray that I somehow gather the strength to walk though this with power and conviction.  And pray that 40 years from now President Wyatt Paul Carcione does a great job running this country!  Because I know there are great and mighty things ahead from him!

Tuesday, September 13, 2011

Lots of random stuff

I want to start by telling you that my angel is getting so big and so strong.  He's so funny and makes me laugh all of the time.  He learns things when you show him, sometimes, only once.  It's really amazing!  Thanks to therapy, he holds his head on his own about 90 percent of the time.  He has also started pushing up when on his stomach.  He still has a hard time pushing up because his left arm is slightly shorter than his right.  It's not noticeable at all to look at him, but when he tries to push up with both arms, his left arm locks into place, while his right is still bent slightly.  It's no big deal, really, once we get past this little place.  Just today he is maintaining sitting on his own for a few seconds.  He can also pull himself back up into a sitting position when falling forward.  It's incredible how quickly he is improving. He gives me such inspiration.

We have also noticed that Wyatt is left handed.  When I was growing up, I always wanted to be left handed.  My daddy is left handed and I always envied anyone who was left handed.  So, I am slightly excited that Wyatt is left handed.  "How do you know he is left handed already," you ask.  He will, nine times out of ten, always reach for an item with his left hand, over his right.  It's really incredible.

Today is a "good day" for me.  I have written in the past about days being very dark and bleak at times.  It's really day to day.  I hate it, but it is  I don't know what to do to make it better, but for now, the "good days" I treasure.

So, I just had some random things to share.  I haven't been able to have the the positive attitude to be able to share funny things lately, but I have several that I think you will enjoy.

Sunday I went out.  It was MUCH overdue and I have really benefited from it.  My first stop was Books A Million.  I seem to have an addiction.  I have been reading much more, thus the need for more books.  Not only do I typically buy myself tons of books, but I buy Wyatt tons of books.  How can you pass up clearance books at $1?!?!  Anyway, lately Mike has been reading as well.  At night, we have some "us" time while reading together.  It's been really nice.  When he heard I was stopping by the book store, he asked that I grab him a new one.  So, while I was wondering around, I happen to see the strangest sight I have seen in a long time, let alone in a book store.  There were two teenage boys, both blonde with glasses.  Both six feet, or so, tall.  And both in jeans an t shirts.  These two boys were having a light saber fight, in the middle of the store.  No, I am not making it up.  While I consider myself a geek to the core, I think I was outranked.

After trips to TJ Maxx, Old Navy, Ross and Jo-Ann Fabric, I decided to go to the Dollar Tree.  My Aunt Becky and I have been working on the planning of a Halloween party.  We had one two years ago, also incorporating our friend, Rusty's birthday.  Did I mention that it is also a costume party?!?!  It's so much fun.  Last year we had to forgo the party due to my being 8 months pregnant, and because they had just moved into their new home.  So this year it was on.  The Dollar Tree proves to be a great place to find very inexpensive decorations.  Plastic rats, crows, pumpkins (more on these later), skeletons, etc.  Anyway, I was checking out and a young woman came to stand behind me in line.  While the nice clerk was checking me out, the woman behind me asked him if she could use her food stamp card to buy energy shots.  Now, I have nothing bad to say about the fact that she was on food stamps.  I think it's an incredible program for those who are truly in need.  However, the fact that she was asking of she could use it for an energy drink did nothing but tick me off.  Was this energy drink necessary for her to live?  No.  Milk, juice, cereal, meat, peanut butter, even chocolate for goodness sake, are all understandable in my book, but an energy drink?  Come on!!  Not to mention that we were at the Dollar Tree, where everything is $1!!  Do you really need to put your $1 energy shot on your food stamp card?!?!?!

Oh, and let me tell you about the lady I saw in the parking lot at Wal Mart.  I wish I had not been driving because I would have pulled my camera out quicker than you could say your name!  She was approximately 23-ish.  She had on a grey sun dress.  It fell around her knees.  A long necklace.  I could not see this necklace, but by itself, the dress and the necklace looked appropriate together.  She also had on a fedora.  Um, ok.  But, the cherry on the cake was that she had on black Pittsburgh Steeler house shoes!  I am not kidding! House shoes, going into Wal Mart!  It was unreal!  She was totally People of Wal Mart material!!

So, back to the Halloween decoration story.  I saw on Martha Stewart where she had pumpkins covered in glitter.  Not only did they look classy, but they looked expensive.  I saw similar ones at TJ Maxx for $15.  So, my inner crafter kicked in.  I could so do that!  Yeah.  So, I found pumpkins at the Dollar Tree for, you guessed it, $1.  Next, I bought Elemers glue two for, right again, $1.  Then I went to Wal Mart and got silver glitter.  It was $2.48 for a giant jar that could cover 10 pumpkins.  I decided that yesterday was a great day to glitter pumpkins.  While this task would not typically be a big deal for most people.  I am not most people.  I tend to make things a much bigger deal than they should be.  Did I mention that I decided to take this task on in my living room?  Yeah.  Needless to say, my living room is all sparkly and pretty.  No wonder my poor mother was wanted to pull her hair out most of the time!  Except now, I can't blame it all on my brother and sister!

Now, as most of you now, I do entirely too much thinking from time to time.  Sometimes its to the point that I really put much thought into things.  My recent thought was that of the Smart Car.  Of course, as a "plus sized" girl, I think about the ability of a chunker to get not only in, but out of said Smart Car.  Then I wonder if they make XL Smart Cars.  Not that I would by one, but I still wonder.  And once on that thought, I can never recall seeing a "brother or sister of weight" driving one.  Is it because they can't get in or out of one?  Who knows.  Strange, I know.  Don't judge.

I adore our new nurse Sheila.  Have I mentioned that?  I love Tuesdays.  We talk about everything.  We are very similar in our views of the world.  We also both enjoy reading and are constantly recommending books for the other.  Oh how I love Tuesdays.

I should end for today.  Hopefully this will be a good week.  I pray that it is.  I have hope that I will gain a better outlook on things and find something to keep my mind occupied.  In the meantime I am going to continue glittering pumpkins.  If they turn out ok, I may share the finished product with you!

Monday, September 5, 2011

Just a thought

You know, it's funny how life works sometimes.

As I sit here at 12:00 a.m. my mind wonders, as it does most evenings before sleep.  I think about so very much that I have a hard time shutting down.  However, tonight I ponder my life as a stay at home mom.

I remember way before I was pregnant.  Probably way before I was even sure I wanted babies.  I use to say that I wanted to be a stay at home mom.  My mother was able to be a SAHM off and on most of my life.  I remember how proud I was when she would accompany me on field trips, or when she would bring cupcakes to school for party days.  That was my mom.  Everyone loved her and I was so proud she was all mine.  I wanted to be that.  I wanted to be the mom that everyone loved and who my child would be proud to say was his/hers.

I fast forward to a year ago.  Mike and I were struggling with the knowledge that our child would be "different".  Our "secret" wasn't something I discussed with many people.  Then, just as now, I didn't want people feeling sorry for us.  I didn't want the pity thrust upon us by people who learned our story.  Every morning on my way to work, I would talk to God.  (Note, I still talk to God, but back then, my prayers were much different than they are now.)  During my morning talks, I would ask God that if he saw fit, that I would be able to stay at home with my baby.  That I would not have to send him to daycare and I would be able to be the mom I wanted to be.

Now, I reflect upon this prayer and giggle.  Ask and you shall receive.  However, I never, in my wildest dreams, thought it would be like this.  I never thought I would miss work the way I do.  I thought that staying home meant that I could clean and stay organized and take Wyatt for walks, and go to Mommy and Me music classes.  Things could not be farther away from this dream.

I know that I have talked about how difficult it is to take Wyatt out.  But, in order to go to his therapy, we have to take his vent (even if he is not on it), his suction machine, his pulseoxometer (which he is on 24/7) an oxygen tank (just in case) a bag full of his power cords and a diaper bag full of not just normal baby things, but tons of supplies, just in case.  Then, when we get wherever it is that we are going, his car seat goes into the stroller, the vent goes underneath, and we get to carry the rest.  So, you see, just going to a walk in the neighborhood is a chore.

I long for the day to be able to just pick him up and walk into the kitchen to get a glass of water.  If I want to do this now, I have to carry his pulseoxometer.  I long for the days that we are able to go out to dinner, just the three of us, as a normal family.  My son has only ever been to therapy and to doctors appointments.  He has had no social interaction with children his own age, and that worries me.  I don't want him becoming shy and timid.  I want him to shine.

Being a SAHM isn't all happiness all of the time.  For me, I feel like I have lost a part of who I am.  Please, don't get me wrong, I have never been prouder of any job in which I have held compared to the job of being Wyatt's mom.  I am honored that God trusted this amazing child to me to raise.  However, I feel like who I am is missing.  I don't do anything, how can I, I don't have time.  I don't go anywhere, except on Thursdays and Sundays when I go "out".  I never see anyone, except for Thursdays and Sundays.  No one comes to see me.  I sit, alone in my home, waiting for my husband to come home to talk to.  Then it's generally so late in the evening that he eats, and goes to bed.  Please, please, please, don't think that I am complaining about Mike's work.  He is providing for our family and I completely understand.  But, it sucks.  He works most days from 8 am to 9 pm.  And on his days off, I try and get out of the house.  Also, we have nurses here to talk to.  But, it's not the same.  Having someone come to see me willingly.  Having someone come to my home just to see me and talk to me not because it's their job.  It just stinks.

Now, please don't think I am ungrateful, because I am very grateful.  I am thankful that God answered my prayer.  I don't think that I could stand the thoughts of Wyatt being somewhere without me in his current "condition".  I don't think that I would last two seconds knowing that I was not able to be with him.  However, it is such a difficult adjustment, being dependant.  I have discussed this in the past.  Feeling like for the first time in my adult life that I am having to depend upon someone else for my everything.  It's a hard pill to swallow.  At the office where I most recently worked, I had my place.  I like to think I was the positive light.  Now, that assumption may or may not be accurate, but I like to think I was that.  I said good morning to every person I saw in my office.  I (generally) always had a smile on my face and always tried to have something good to say.  Again, this assumption may or may not be accurate, but I like to think this was the case.  With that being said, it's very hard for me that I have kept in contact with very few people from my former employer.  I always thought that people would occasionally e-mail or something, just to see how, at least, Wyatt was doing.  But no.  That is not the case.  And it hurts.  I wish I could say it doesn't, but it does.  It's like raising a dog and then all of a sudden giving that dog away and never going to see it.  Ok, maybe that was a bad analogy, but you get the picture.  It just stinking hurts.  Maybe I am delusional in thinking that I meant something more to people than I did.  Maybe I was just a paper pusher that people tolerated day to day in hopes I would disappear.  But I disagree.  I do talk to some of them.  Some being two.

Anyway, I did not begin this post with the intent to feel sorry for myself.  I began it to share with you my latest epiphany.  I asked, and I received.  Just remember, when you ask for something, you may not get it exactly like you want it.  It may not be in the form of the perfect, pretty wrapped up package you were expecting.  It may be wrapped in wrinkled dirty paper.  But remember, you asked for it, now be thankful and do the very best you can with it.

I want to also take a moment to say that I am so thankful that my baby is on the road to recovery.  I understand that we could be facing so much worse in life.  The fact that Wyatt has only had "minor" issues compared to some is a blessing.  I understand that so many are facing so much worse.  My intention in this blog was not to complain about poor pitiful me and the things I face being oh so bad.  I know that we are abundantly blessed.  I know that Wyatt will someday be a completely normal child and my biggest worry will be a skinned knee.  However, the darkness of depression has temporarily grabbed at my ankle, pulling me under, if ever so slightly.  Tomorrow will be better.  I know this.  It is always darkest before dawn.

I realize that I have been more than neglectful in sharing the things I am thankful for lately.  It goes without saying that I am thankful for Wyatt, Mike, Roscoe, my family, shelter, God, etc.  Anyway, I want to share the latest "little things in life" for which I am thankful.

Good books.  I have read so much lately that it is sickening.

Clean sheets.

Loving nurses and therapists.

Trail mix.  Mike and I are obsessed right now.

And of course, this face!!