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Thursday, December 30, 2010

Unique Perspectives and a few Ramblings

There are things I love and things I just.... don't.  As a teacher, mother of multiples, and mother of a special needs child - I have a few unique perspectives.  It's getting late and I've decided to list them out..... Let's call it an enlightenment. (make sure you check out all the lists)

Things I love:
First ... always first.... my family. My kids, My husband, My parents (all of them) love: love: love
the rest are in no particular order
Sheetz coffee - 2/3 fat free french vanilla cappichino - 1/3 columbian brew
Peanut M&M's
My Minivan - those of you who are shocked - you have never owned one. I can open almost all doors with a click of a button and haul a jungle gym and 3 kids at the same time (I have pictures)
Pumpkin pie
Fried Deer Heart. Yes. I know. It sounds gross. I actually have only told about 3 people this ... and now all of you
Burger King, McDonalds, and Vinnie's Pizza
The Steelers
Miller Lite and cheep wine
A warm bed in a cold room. (love this!!! about 50 degrees with an electric blanket is my favorite!)
Teaching. I really do love it.

Twin Things that drive me crazy
Let's start with things people say....
 "are they natural?" um... none of your business!
"double trouble"  ..... no - double the fun.
"oh - you have your hands full" .... Ok. Sometimes - when they all poop or want to eat at the same time. Otherwise ... NOPE.  My Mother-in-law was one of like 10 kids. Her mother had her hands full.  Remember those families? My Grandma had 6 kids and the youngest one slept in a dresser drawer for a while.  I have 3 adorable kids.
"Are they Identical?" No. Identical means exactly the same. Boys and Girls cannot be exactly the same. Change a diaper and you will know what I mean. Now, having said that - 1 in like 60 million twins is born with chromosomal DNA that says they are a girl and they look like a boy and they are actually identical, but it is a freakish thing that happens, and it did not happen to my children - nor to any other b/g twins you will meet on the street. 
"Which one do you like better." Ok. no need to even explain this one. Only stupid people ask that one.

Alexander things that drive me crazy....
"How long do you think he will live?" Seriously? Forever. or at east longer than you if you keep talking.
"Why is he so small?" Ok..... so what I want  to say is..... because he has a genetic disorder. Thanks for bringing it up. Any other inappropriate questions you would like to know about him? But what I say is ... "He is just small for his age."
"Why are you trying to feed a newborn baby food?" (got that one the other day) - please refer to answer above
Loads of other intrusive questions about Alexander - again .... refer to answer above :)

Ok. Mostly life does not drive me crazy. Mostly life is filled with things I love. Sometimes things that drive me crazy are thrown in there - so I thought I would share those also. Remember..... all things here were written with a humorous tone.

New Year in 2011

So now is the time for New Year's Resolutions.  I guess this would be a great time to talk about some of mine.
* To lose some weight. I know, I know.... every year. But seriously - I have no excuse now. I'm not pregnant.. which brings me to the next resolution
* To not be pregnant in 2011. It will be the first year in several that I haven't been. It will be a lot easier to lose weight if I'm not "eating for 2 or 3"
* To finish my degree to be a principal. I'm 3 classes (2 of which are scheduled for the spring semester) and a practicum away from this goal.
* Once I lose weight - I'm going to be a better dresser, curl my hair, and wear makeup. (maybe....)

Those are "goals" ... resolutions. Things that can be broken and very well might be.  Here are some musts for 2011
* To be a good person. People support me. People support my family. We may not always be able to support people monetarily, but the gift of friendship is one that is free. I must be a good person. When I am gone - I want that legacy - she was a good person.
* To be a strong wife for my husband. By strong I mean... to love in times of stress and rejoice in times of non stress. We have a lot of stress. People without stress have marriages that do not last. I must not take him for granted and remember every day how wonderful he is.
* To be a mother my kids can respect. To kiss the boo boos. To help them learn right from wrong. To love them unconditionally. To balance all of their needs. To remember that if I don't meet every "want" at every time, it does not make me a bad mother - only a human one. To tell my kids I love them every single day. Every single day.
* To not give up the faith in Alexander.  To remember to work with him on holding his head, sitting, rolling, and eating. To not let life overwhelm me and allow Alexander's therapy to take a back seat.
* To not allow Alexander's needs to overtake our life.  All things need a balance.

*To push the fear away.  The honest truth is that within me is still a lot of fear of the future.  I try as hard as humanly possible to live in the moment.  To remember that anyone can be sick, etc... but the truth is - if I try to envision my life in 10 years I become almost paralyzed with fear .... because there is no picture of Alexander. Addison- I can picture her as a pre-teen... sassy. beautiful. headstrong. a reader. She might not turn out that exact way, but at least I can picture something. Andrew - I can picture him as a mini-Ray. Athletic (he already stops to line up his shot when kicking the ball)  Smart. Tough. a cooker (he loves to cook). Again... he may turn out totally different, but for now that is how I picture them based on their personalities. The truth is .... I don't know how to picture Alexander. Is he a walker? Is he in a wheelchair? Does he eat? Is he on a "blenderized diet?" Does he use his g-tube? Does he have head control? Does he speak? IF he does not speak, eat, or walk.... it is ok. Just look at my beautiful baby and you will know the most beautiful love there ever was. I just want to hold him and kiss him all day. But..... not knowing, not having even a glimpse - is so nerve wracking. Where are those crystal balls when you need one? I don't want to lose faith. I want to push him as much as he can be pushed. But hope can sometimes be a very fearful place.

 I would like to lose the fear in 2011.  I'm sure I will and 2011 is going to be a rockin' year!

Saturday, December 25, 2010

What was it like?

When I first found out about Alexander's diagnosis - Some things I can remember like it was yesterday. The smells. The sounds. The words that were said. And .... some things were just a blur - but I do remember this.  I remember this hole that was inside of me. This deep dark emptiness - caused by the words spoken by "blunt" doctors who were "trying to help me accept our son."  And I remember becoming obsessive about reading other Wolf Hirschhorn mom's blogs.  I wanted to know how everyone felt when they first heard the news. I needed to know. So.... now that time has past - I feel I should post our story. It might help someone else who needs to know they are not alone.

Many parents of special needs children are referred to the "Welcome to Holland" essay.  Yes, I can now relate to those feelings, but in the dark early days, I could not.  Here is our story.

Early September 2009, I found out I was pregnant.  We had 9 month old twins and were very excited to have another child close in age to our twins.  Everything went smoothly until my 20 week ultrasound.  They said I was measuring "small" and that my due dates didn't quite line up with my first ultrasound. (I had an early one to determine the status of one baby vs twins.  :)   They scheduled another ultrasound.... each one with the baby growing, but not nearly as much as it should.  The OBGYN's I went to rotate doctors, so one doctor would tell me we should deliver soon and another would tell me to wait it out.  The stress of 2 ultrasounds and 2 non stress tests a week began to get to me.  Raymond and I decided to go to the high risk doctors that delivered the twins - in Harrisburg - where there was a NICU in case of problems.  We pled our case, and they agreed to deliver me.  At 37 weeks exactly, there was no growth and it was decided that I would deliver that day ... May 7.

Raymond practiced his NASCAR skills as he drove us to Harrisburg Hospital to meet our new, and as of yet unnamed, baby boy.  I just knew he was going to be ok. I just knew it.  We had twins born at 33 weeks - they were perfect.... so would this baby. This was just being extra safe.  When Alexander (baby no-name) was born - I remember being a little hysterical that they wouldn't let me see him. I kept begging the doctors to tell me if he was ok. They continued to tell me they were measuring him, but I could not see my baby due to the position of the doctors.  I asked Ray if he had Down Syndrome.... little did I know there were things disorders that could be worse.  What those doctors were doing was recording small common birth defects that Alexander had.  A hypospadia (Don't Google this... FYI) - it is just a slight curve in where the urine exits the body.  A sacral dimple. A coloboma. A pit on his right ear. A slight down turned mouth. Slightly wide spaced eyes. And a possible heart murmur.  All of these are common... but put together - they got one doctor thinking.

This pediatric doctor actually came to see us in our room the next day. (We all were able to stay in the regular room together - nothing yet had been determined). She brought a 2 sentence piece of paper.  She said, I googled all of your baby's birth defects and there is a possibility he has Wolf Hirschhorn Syndrome.  It varies from mild to severe delays and mental retardation.  It is probably nothing.  I looked at my baby.  He was perfect. He could not have this thing... we have great genes.

Next day. Sunday. Mother's Day.  D-day. Raymond went home to pick up the twins.  My amazing friend Kimmie came to visit us and spend time with me and Alexander while we waited for my family to return.  It was an increadibly unselfish gesture for her to give up time with her family to spend time with me. Raymond, Andrew, and Addison all returned and Kimmie got some great shots of the family together. It was perfect.  At the end of their stay, I decided to walk them out - so I called for Alexander (still not named) to be taken to the nursery.  When I returned.... my world would never be the same. Literally. When I got back to my room, it should have been a simple process - I call the nurse, say, "bring my baby back." and they bring him back.  Instead a team of NICU doctors came to tell me he was being moved to the NICU because he did not have the suck reflex - we didn't know because I had been nursing - and they believed he had Wolf Hirschhorn Syndrome.  They brought a paper from the Internet.  They told me he would probably die. I should spend as much time with him as possible. He would probably never eat, walk, talk, potty train, have social skills.  This is where the blurriness begins.  I remember telling the doctors that I was leaving.  I remember them calling our for some "calming drugs."  I blur for awhile until my mother-in-law comes.  I realize I can't tell her until I've told my husband - who still is not back from returning the twins - his drive was 3 hours round trip. I wash my face and ask her if she will go to the NICU with me, that Alexander was taken there as a precaution because he was born small.  I remember that I named Alexander alone before he was taken to the NICU. Raymond liked the name Alexander James... and it just seemed appropriate that he also be an "A" and his middle name be my father's name.  If he was only going to be with us for a short time, I wanted him to be........... included in our family.

Finally, Raymond came and with grace my Mother -in - Law left us to have family time. She can also never know how much that time spent not talking will ever mean to me.  It was now my task to break the news to Raymond.  Here it is a blur again. I don't know what words I used. I only know that I prayed to God that I wouldn't screw it up. And that I cried again. We walked hand in hand to see our baby.
So the tests were run. Alexander did indeed have 4P- or Wolf Hirschhorn Syndrome. The doctors then decided he would not have a life worth living. They decided he needed a g-tube because he would never learn to eat. They taught us CPR.  They ordered monitors to measure his breathing and heart to go home with us.  One special day, one of the NICU doctors came and held my hand as she told me to ignore Alexander's monitors should they go off that he was dying and let him "pass in peace."  They called the specialists for us.  They set up our initial appointments - Pediatrician, Cardiology, Neurology, Optomology, etc.   They kindly told each and every one of these doctors that Alexander would probably not make it through the first year, so let's not treat him and just make him comfortable.  Alexander is finally discharged and sent home.
Blurriness and Lucidity.... they move in and out. I know I failed the depression test 4 times. (oops) The first time was after they took Alexander to the NICU and the second time was after they told me he had 4P-.  I remember looking at my twins and getting NO joy from their playing.  I would look at Andrew and be so proud of everything he was doing and learning.  He was growing so fast.  I would look at Alexander and swear to love him no matter what.... no matter how long it took him to do things - or if he never did them at all.  But I could not look at them at the same time and rectify those feelings together. Raymond took care of everything.  He cooked the meals, he cleaned, he took care of the kids.  And I was a walking zombie... unable to cope with our new life.  This is when my obsessions began - obsessions with reading everyone's birth story.  Obsessions with looking at newborn pictures of other WHS kids to see if they showed characteristics at birth. Obsessions with reading up on WHS.
Enter 2 amazing and totally unrelated events.

** The group of twin moms who banded together, researched a Wolf Hirschhorn Conference in Utah, raised money, and all but booked our trip.  An uncle and aunt who gave up their miles for travel so we could have free plane tickets. Our church family who raised enough money that the entire trip was paid for. How could we not go?  We might not have been totally ready to enter this world... but we were entering it.

** Dr. Ladda. The man I needed to meet.  The Geneticist at Hershey Medical Center who is well respected in our area. He had an attitude that I could relate to.  Why won't Alexander eat?  Why won't he walk? Why won't he talk? His life is not written yet. DO NOT GIVE UP. Treat him like all of your other children. And Raymond and I decided to do just that.  Dr. Ladda even wrote a letter for me to take to our doctor appointments telling the other doctors that they were to treat my son.

Our summer was filled with doctor appointments.  Alexander had a few surgeries. We spent some time with the twins. We spent some time with Alexander.  We made it to the National Conference and made some wonderful friends. My confidence grew. We can do this.
8 months later.  Alexander eats by mouth. He drinks his bottle. He eats stage 2 foods thickened with rice cereal.  He is still tiny 7lbs 9oz... but growing - slowly.  Sometimes when he is over extended he will not eat and we have to put him on the pump. He has had several seizures and is on medicine for it.  He smiles socially. He plays peek-a-boo with me. He tracks to my voice. He passes toys from one hand to another. And tonight he rolled over.  I believe Alexander will walk.  I believe Alexander will talk.  I believe Alexander will eat real food one day.  I believe in him.  But - even if he never achieves these goals - I am totally, completely, and 100% in love with him. Welcome to Holland... the best place on earth.

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Thursday, December 23, 2010

The name of the blog and definition of me....

Two days ago a good friend asked me, "Kristen... what are you doing for yourself?"  This simple question dissolved me into tears.  Because the truth was - nothing.  I am a full time teacher, a full time wife, a full time mother of twins, and a full time mother of a very special baby.  and... an over achiever. .... which I think is giving me an ulcer.  Either way, that is where the name for this blog came from. This is what I am doing for myself. I am going to try to blog. 

My first post is how to define myself.  I've been thinking about this a lot lately.  Things shift, time moves, and we change.  How I define myself is so different today than it was 5 years or even one year ago. So I decided to think back and see how I defined myself until now......
When I was a child.... I was defined by my smarts.  I was the "bright" kid in class.
When I was about 11..... I was defined by my parents' divorce.  We moved; I started a new school, a new life.
When I was a teenager.... I was defined by my maturity.  I looked much older than my age and most of what defined me was this discrepancy between my real age and my apparent age.
When I went to college.... I was defined by my .... wild oats.... which I sewed :)  And that's all I'm going to say about that.
For the best part of my 20's .... I was defined as a teacher.  My profession was my life.  I took my students to NYC to see a play on Broadway, I thought up great new ideas for learning. I lived for teaching... then I got married.
After I was married.... I became defined by my marital status.  I was now Raymond's wife.  Life became filled with compromises and plans for a future.  My oats drifted away...
Then I became pregnant .... with twins.  No longer was I defined by my relationship to Raymond, but I was now defined as a mother of twins.  When people saw me - they no longer asked about Raymond, they wanted to talk about the twins.  I met wonderful people - who have twins themselves.... and to the final chapter (for now)
Last May I gave birth to Alexander. New definition. New life. I am now the mother of a child with special needs. And not minor special needs... but major ones.
In life, I'm a soul mate to a wonderful man, a kisser of boo boos, a playmate to small children, an advocate for my children, a person who gets excited about a new lesson..... but I am defined as my role with Alexander.
I'm not totally sure how I feel about this.... will this be my final definition? Will something else come along that could be "huge" enough to redefine me?
But I do know - earlier tonight - as I laid down on the floor and played with all 3 kids with my husband - I was the happiest person alive to be so blessed to have this amazing family.

So....the blog will be a reflection of things that happen in our life.  Things that happen with Andrew, Addison, and Alexander -  More of things like this :)