When the Perfectionist Fails

Is there a time when I get to be “perfect” again?

I am a true perfectionist… even about the silliest stuff.

Even with school – yes… I believe there is such thing as the “perfect” lesson. And – in my version of “perfect” – you work hard… then harder…. then even harder – until things are the best they will ever get.  That no one could have worked harder than you me.  No one could have made it better than you me.  Perfection.

I really wanted to write something light and fluffy.  Fun pictures of the kids and Ray and I at the parade.  We were going to bake chocolate chip cookies tonight.  We had it all planned out.  Relax.  Breathe.  Exhale.  Smile.

Last week Alexander had an evening of screaming all night long.  I went to work on 2 hours of sleep.  The next day, I had him into the doctors – to recheck his ears.  Because we were that on top of things.  We were preemptive.  We did everything right.  Turns out – he did still have an ear infection.  Turns out… he did need more antibiotics.  *Cue back patting here.  Great Job Kristen…. Way to go – figure it out. Fix it.  Don’t let things get out of control. *

Today Alexander had another seizure.  Despite all of it.  Despite the doctor visit.  Despite the early detection of the ear infection.  What about the “perfection” of it all?  I worked harder than anyone.  We did everything right.

Alexander’s seizure was the biggest yet.  Lasting the longest.  The most uncontrolled ever.
15 mg of Valium
100 mg IV Keppra
100 mg IV phosphenotoine
3 doses (don’t know the MG rate here) of some other “V” medicine
3 doses of Ativan. 
I believe there are some other drugs that I missed. 
I was too busy trying to overhear the conversations:
Phenobarbital / Valpuric Acid / Intubate / PICU / Spinal Tap / Meningitis …. shit.

I know you are all going to say that no one is perfect.  I know you are going to tell me to stop beating myself up about this.  But.  I. Am. His. Mom.  (As of right now… he is not intubated nor has he had a spinal tap…yet.)

How can I recognize and help so many other people… but not be perfect enough for my little buddy? 
(who… by the way … is PERFECT.)  I just feel like I’ve screwed it up somehow again.  No cookies for the twins.  So many drugs given to this little boy… and – nothing I could do to stop it.  This little fighter boy. 

Ugh. Tomorrow… I promise to blog a happy blog. Today, I need to sleep somehow.  And sleep will come after I’ve emptied my heart of this blurred vision of perfection.  Thanks for listening.

3 am

You know who is beautiful at 3am? My baby boy.

I watch him… as I promised.  To get us this room. 

He sighs. His chest rises and falls. His eyes are just cracked a bit.  His downturned mouth… is slightly up.

I love that boy.  That miracle baby.  A few hours ago they went for the femoral artery to get blood.  They had to do it twice.  And when I walked back in the room… he let me soothe his tears.  I was too weak to stay in the room with him – my fighter baby – but he still let me comfort him.

I would move mountains for that kid.  To see him BE.  Just … BE.  No more seizures. No more arterial sticks.

Earlier today, I just had to get the anger out.  If this blog is my outlet, then I have to be able to be angry every once in awhile.  It was anger that stems from Mommy Fear.  Fear for my son.  My baby who cannot speak for himself.

I said I wasn’t going to do this, but my heart has mended.  My baby hero has once again shown me the way.

I am thankful for LIFE.  His life, Andrew’s life, Addison’s life, Ray’s life….. My parent’s life (including in-laws – because they are my parents just as much)… those who love us…. LIFE

Speaking of LOVE… I am thankful for it.  Today my friends and family lifted us up in prayer.  My friend, who has precious little time to spare, listened to my tears of frustration.  My colleagues will ask how we are.  My students will want to see a picture of Alexander smiling in reassurance… the way kids do. LOVE in all forms.

I am thankful for a seizure.  We have a shirt covered in Alexander’s seizure “aura” to send ahead for his dog.  We are to send 2 shirts… One with the seizure sent and one without.  Our dog will be prepared.  (Alexander’s seizure started while he was in his car seat waiting in the van…. It was the grace of God that gave this seizure a new look and sound, or Ray would have never known he was seizing.)

I am still angry with insensitive people who forget that a person’s life is in their hands.  I will still be calling about this.

But life is more than anger.  I needed to blog it away… and almost immediately I could feel the tension release from my fearful heart.  The anger is poison that threatens to eat all those blessings. 

My heart doesn’t have room for it.

Because she Lost the fight…

My dearest friend, forever friend, sister of my heart,
I’ve been talking to you all day… and I know you loved to read my blog, so – I guess I will just put it to words so I can know you can read it in Heaven.  And… I can read it anytime I need to be closer to you.

I honestly can’t seem to find the words.  I can’t remember a memory that doesn’t have you there.  You have always been there.  My entire life.  How am I supposed to go on without you here? 

We all knew it was going to happen.  The words terminal have spun off our lips like a whisper for years.  But you fought.  You fought the cancer.  You fought. For years.  Even when it became painful… you still fought.

Remember?  Where do I even begin with the “remember when’s?”  How do I even put to words the love that flows when I think of all the things.  Those private Wednesday dates before I could even drive.  When you were my ride to church.  Every week … you heard the secrets of my heart. 

I will forever cherish the photos of you holding my first two miracles.  When I heard the news… I became almost frantic looking for these photos.  I couldn’t bear the thought they might have been lost.
                       
But… the spring when I was pregnant with Alexander… you were one of the few who held me together.  Our private joke was always how odd we must’ve looked… the pregnant lady and cancer fighter.  Between the two of us, we could barely walk very far. Or lift things. … but we spent our time together.  Laughing all the way.


A funny story that she would laugh to know I told now.  She worked at our church for awhile.  One day, she went down to clean out the church mailboxes.  You know… the people that haven’t been to church in forever and still have fliers from 6 months ago.  She wasn’t sure what our pastor would think of the idea… so she just went.  While she was tidying, she noticed this bottle of water in our church mailbox.  She felt certain it was trash and with the 3 kids, we just didn’t have time to take care of it yet.  She threw it away.  That night, in the middle of sleep… she woke up in sheer panic.  She was afraid it was “holy water” from Alexander’s baptism.  I know she fished it out of the trash can, and I’m fairly certain she went to the church in the middle of the night to grab it.  When she gave it to me… with the story – I told her it was just a bottle of bubbles.  But, I used to take pictures of the “holy water” everywhere and send them to her.

How can I laugh when you are not here to share my jokes?  Who will stand next to me – if I ever return to Wednesday nights?  Who will be my secret keeper?  Why couldn’t the “holy water” work?  Is it nice in Heaven? Can you see us?  Do you know that I miss you?  Like heart break miss you?  Who will fill the hole you left? 

You did this for us

A quick post:

Read Evan's Story on MSN

We Love You. We didn't have to write a book.  You did this for us.... AMAZING.  Thank you.

Thank you....

Effexor, Self Awareness, and Maturity saved my life

I’m going to write the post of my heart.  The post of Naomi. The post of weakness.   Because if there is one thing that I know in my heart I should do, it is speak these words.  I would much rather keep this  part hidden, but to not talk about it brings shame to something that should be shameless.  Before you read on… if you don’t know the story of Alexander’s birth in May of 2010, please read this post FIRST.  And if you continue to read – please read until the end.


This past year has been one filled with fears.  Fears for my family, fears for my son, and fears for others.  Because I have seen a glimpse into the hell that is depression.  I’m not talking about feeling a little blue.  I’m not talking about having a bad day.  I’m talking about the life-is-over-darkness – depression.  The truth is, Effexor, Self Awareness, and Maturity saved my life.  (God… is – as always – present.) But this post isn’t going to focus on that part of my journey.  Many God loving people experience depression.  And. No. One. Talks. About. It.

Do you want to know what it feels like?

Imagine the most heartbreaking moment you can remember.  Picture yourself crying that ugly cry.  Remember the clutching of your heart as fingers squeeze it until your chest hurts.  You can’t breathe.  Every breath is labored and you struggle just to exist.  Your head hurts as you replay hurtful words, broken dreams, actions that cannot be undone, and the what – if’s that won’t go away.  And there is no relief.  None. You blink your eyes… still all that pain. You fall asleep… still all that pain.  Each day, each moment.. you beg for mercy… and … still all that pain.

I prayed. And… honestly, there was no relief.  I really believe that was so I could write this post.  So that one year later – I could stand proud and tell others what it looks and feels like.

I have always liked to nap.  I love to nap in the living room, with the sun beating down on my face.  Last summer, I slept almost all the time in the darkness of my room.  I pulled all the blinds.  I turned off all the lights.  I slept all the time… In the darkness that mirrored my heart.

I did not return phone calls.  I didn’t talk to people.  In fact – Ray and I sent out an e-mail specifically asking people not to contact us.  He has always been a private person, but I have always been an open and public person.  Many of my closest friends sent me congratulations on the birth of “Nicholas” because they thought that was going to be his name.  I couldn’t even tell people his name.  I just didn’t have the energy to speak to anyone.

I know I have alluded to it in the past… but I really did not do anything to provide for my family during this time.  I did not cook, clean, do laundry, tuck my children in, cuddle them, give them a bath, play with them, … I didn’t even eat supper with my family.  And it’s not because no one noticed.  Ray did everything possible to get me to at least eat.  I couldn’t.

I was once asked by a doctor’s office if I thought about taking my own life.  My automatic answer was, “No.”  My mental response was, “How could I leave Ray to deal with our life alone?”  The doctor was satisfied because of my automatic “no.”  He couldn’t read my thoughts.  I could have walked out of that office and he would have been satisfied.  But you and I know my mental thoughts were not appropriate.  If I really was so far from stepping off that cliff into oblivion – I would have thought, “No! I have too much to live for.” 

Maturity and self awareness saved my life. I asked that doctor for help.  I told that doctor that I needed something to help me battle the darkness. 

If I would not have known the signs of depression AND been mature enough to know I was “faking” normalcy – I might not have been able to write this post.

So why share it?  Why write this?  Why expose something so personal?  Because I worry about other people.  Especially today’s youth.  I feel like most of you are thinking, “well, she gave birth to her son; she heard he was not going to survive or have any quality of life. She battled this tough road… no wonder she was depressed.”  And that might be true. But what about all of those other people who experience depression just because they experience it?  What if no one notices?  What if that person can’t ask for help? What if they don’t recognize the signs or aren’t mature enough to stop lying. To others or themselves.  How can my experience be used in a positive way? 

I am not ashamed to say that an anti-depressant saved my life.  Does it make me less of a person? Does it make me weak?  Did it make me a Naomi?  Maybe.  Does owning it – Out. Loud. – make me a Ruth? I think so. 

I always wanted to be a Ruth.


I decided to publish this post today because…
1. I just needed to get it out.
2. I have a lot to do tomorrow…
3.  I would like to reach as many people as possible with this post, so I linked up with Pour Your Hear Out Wednesday. 

I can't not acknowledge it.

Tomorrow we say goodbye to Jake.  I've tried to be silent to protect Ray's privacy.  He has been Raymond's companion.  Tonight I broke down and cried as I snuggled my head into his huge black body.  You know what that dog did? He comforted me.  He licked my tears away and nuzzled his head into my shoulder.  I could write a million words about Jake.  I could pen a tribute to him or share the special bond he had with my husband... but I won't.  Instead I will acknowledge that tomorrow our family will change.  Our hearts will be a little broken.... because we loved Jake.

Old Friends, New Books, Painful Stories, and that darn Syndrome

Yesterday was a good day.  Most people who saw me would say, it was a good day.  I actually was really excited to go to a small group discussion on a book.  I was as excited to go spend time with old friends as I was to talk about the book.  So let's start with the old friends.

We all change since high school.  We evolve into these people .. with values, morals, and opinions that set our boundaries help form our personalities.  Most of us hope to evolve into "good" people.   Like the valedictorian who is so humble I forgot she was first in our class. She could have been a doctor or lawyer or nuclear physicist... but is an OT and Photographer and first - a mother... because she pursued her passions in life instead of monetarily motivated ambitions.  Or how about the sweet girl with a big heart who was everyone's friend.  Who decided to take her personal tragedy and find a way to help others? Who started a non-profit organization with no direction at all... except prayerful guidance from God and a mission in her heart?

Although I'm neither of those people... I think I'm evolving to a place where I can be proud of the person I am.  And... I have to say that I'm proud to be friends with those two.  I find inspiration in each of them.  I couldn't wait to spend some time with them and other moms.  So ... I read the book - to go to the meeting. The book....

Heaven is for Real.  First of all... the book is amazing.  Definitely read it.  I'm only going to reveal what is on the back cover - but the book is about Colton's (4 years old) journey to heaven and back.  It is non-fiction.  If someone recommended this book to me under any other circumstances, I would probably laugh them off and stop reading their craziness... but this book is so compelling.  The book is also comforting.  Amazingly comforting.  I left our little group feeling happy with life.  I had lunch with a friend, I spent some time with my dad; Alexander and I globe trotted around without a real care in the world.

Then I came home to write about the 4th of July.  I was going to post pictures of our happiness and describe this incredible feeling that was washing over me daily.  And that is when I saw it - the blog post - on wolfhirschhorn.org.  The story so close to the book I just finished.  The story told by a "I'm content because God loves us" mother.  A missionary who faithfully follows God and does not question.  She wanted to share - so that her son would not be forgotten - the story of her sweet boy.  Even when describing her son's passing, she offers praise to God for not allowing her son to suffer.  She is a person with morals, values, and opinions I could only wish to have.  That peace and comfort comes to me at sometimes... but the selfishness is so much stronger.  The story should have given me peace.  After reading the book, after spending the day with my baby, the story should have made me smile.  Instead... it struck me with such panic I had to leave the house.  I called up an old friend, raced to her house, ran errands, and almost missed dinner because the need for air was so strong.  The panic was so intense - I just needed a minute. 

When I came home, our house was amidst craziness.  The twins were running, shouting the Veggie Tales theme song, and basically in Ray's way.  Alexander was squawking happily ready to be fed.  I ate dinner with my family, I hugged my kids, I hugged Ray, and I blogged pictures of my kids hugging.  I couldn't really explain the emotions that came on this roller coaster ride.  You feel so confident, so sure - that you are ready for the turns and loopty- loops... you let go.  And then, just as quickly, you need to grab hold again.  Sometimes I wonder if the roller coaster will ever be so easy that I can just let go and enjoy the wind in my hair.... but for now - if my posts seem light hearted and then smack back into reality - it is because these posts are a reflection of my life.... usually light hearted and sometimes just smacked back into the reality that darn syndrome can give me.

Horrific.........

Warning... POST IS GRAPHIC IN CONTENT.... Please exercise caution before reading...
 
For those of you who know me... you know that I hate to read all the garbage in the news.  I hate to flood my mind with images of the most vile things in society.  However.....  some moms posted a link to an article that I couldn't believe.  I actually searched it to find out if the article was legit... and I found the article from CBS.

(Warning... do not read if you have a weak stomach....) Read the story HERE - or read my abbreviated version with thoughts below. 

A woman had a child born with WHS.  She killed the 2 month old baby... by fire.  The autopsy showed smoke in the lungs.  This means the baby was alive prior to the fire. I honestly don't even know what to say here.... I'm looking at the screen thinking - what do I say next?

I just can't believe a person could do this. Could kill their child.  This is why I don't read the news. I hate these stories. And this story hits home because of the genetic syndrome... Alexander's syndrome.

But also shame on you CBS and other news outlets.  "A terminally ill baby was still alive...."  and  "the couple were (should say was) unaware Brandy would be born with fatal birth defects."  Shame on you for printing this. A child with Wolf Hirschhorn Syndrome is not terminally ill.  How did they not research this? How could they print such lies? Don't they know that WHS miracles exist within their midst every day? I feel like I could just vomit.  Or throw something. Or cry. Or do all three. I'm doing that looking thing again... what to say here......

This brings me back to when we heard the news.  We were told Alexander would be terminal.  We were told to "ease his suffering."  We were told to let him pass in peace.  Not only am I mortified that a mother would do this to their child - but I am always mortified when parents do despicable acts, BUT I am also mortified that news outlets allow the lie of the terminal WHS child live on.  I'm mortified that this woman was released on bail due to her 'special circumstances.'  SERIOUSLY?

Everyone has special circumstances. DEAL WITH IT.  Welcome to LIFE.  It throws you curve balls. DEAL WITH IT.  

AND FOR THE FINAL TIME. WOLF HIRSCHHORN SYNDROME IS NOT AN AUTOMATIC TERMINAL DIAGNOSIS. 

I guess this was bothering me a little more than I thought. Sorry for the depressing post - but .... when will people: news community / medical community / everyone stop giving up on a child before they have a chance to live? 

Journal before the life lessons

I have a series of life lessons that came from Yesterday.  First, I’m going to write a journal entry of the events of yesterday and tomorrow I can post some of those life lessons.

Yesterday was a day to remember. Or forget, whichever you prefer.

Let’s start at the beginning….  I’ve been struggling.  Struggling with the blog. Is it for me? Is it too depressing? Is it real? Do I really want to be someone who has a bunch of people read my words? If so… do I need to “watch” what I say? *sigh*  I’ve been having a bit of writer’s block because I’m not sure how the blog is coming off. Or maybe it is because I’ve become to aware of how many people are reading it since people have started to hear about Alexander’s need for a seizure dog.  Either way – I have really been struggling with what to say here.

So, then yesterday smacked me right in the face.  Actually – the weekend smacked me in the face.  Here is a rundown.

Alexander’s seizure medicine is in the process of being tweaked.  He has been having these small, barely noticeable seizures.  Ray and I have watched and waited… to see if the medicine would take hold and put these seizures to rest.  The medicine is not the right combination.  This past weekend Alexander had a bunch of mini seizures.  It was becoming an issue that needed to be taken care of.

Yesterday began the chain of phone calls.  I called to discuss with the neurologist what changes to make in his medicine.  I also called the pediatrician about his formula, made arrangements to have his formula picked up, called our lawyer to finalize some legal documents, called the medical supply company to order our supplies, called the pharmacy (who knows us by name…), and made arrangements for the twins to get picked up because I had to rush home after work for Alexander’s PT.  I’m not saying all of this because I want sympathy.  Actually – sympathy is pretty far from what I want from anyone.  Sympathy almost rhymes with PITY and as much as I appreciate people praying for our family, at the same time it makes me sad that we need those prayers.  Yesterday was one of those days when I seriously didn’t know how I was doing it.  Some days are good. Some days are bad.

Some days you have to ask your father to stay over because your youngest son is having another uncontrollable seizure and you have to call 911 again, and he rides in a helicopter again (only this time I couldn’t go with him.), and we go to Hershey again. 

Yesterday I worked to not scare my children when the ambulance came.  I needed to explain why Alexander and I were leaving but they were not allowed to go in their most awesome vehicles.  You know what I told my kids last night as I kissed them goodbye? “Mommy has to go and tell Fireman Sam what to do.  She has a big important job to be the boss of Fireman Sam and I can’t wait to tell you all about it when I get home.”  It sufficed, but this morning Andrew asked me, “Mommy? Can you take care of me? Where am I going today?”

Yesterday was a day of lessons.  Yesterday, I was worried about something so insignificant as a little piece of cyber writing.  Yesterday, I realized that many people worry or become angry over insignificant things.  Yesterday, I just as quickly realized the power of words – to hurt and to encourage.  Yesterday I learned that I’m not a fan of helicopters that don’t let the mother of a little boy ride along.  Yesterday, I was not a fan of seizures.  Yesterday, I thought I just might break. 

Finally, yesterday has past.  Tomorrow I will take Alexander to do a 24-hour seizure watch.  An EEG, video recorder, my baby, and myself will hang out to see what happens.  Tomorrow, I’m going to pray for a seizure so we can get some real information about what is going on with my baby. 

And finally, tonight I just kissed my sweet babe goodnight.

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.