15.32

To most people it is just a number.  It is three $5.00 bills, three dimes, and two pennies.  It is eight months and twenty-eight days before a 16th birthday party.  It is the price of two value meals and one happy meal at McDonalds.  To me, it was a number that shattered my world and broke my heart ~ several times.

15.32 is the deletion size of Alexander's 4th Chromosome.  A full 4th chromosome has genetic material that ranges from 4q35.2 - 4p16.3. 

The short arm (P) is where deletions that lead to Wolf Hirschhorn Syndrome appear.  WHS occurs at 4p16.3 or more. The small red arrow is the deletion that must exist to label a child with Wolf Hirschhorn Syndrome.  The large red arrow is where Alexander's deletion occurs. 

And he is missing all the genetic material from that arrow to the end. Everything. On Every gene. On every cell. In every part of his body.

So what? What does this mean?  What's in a deletion size?  There are many people who believe that deletion size makes no difference in development.  Up until a year ago, even the research supported this notion.  But, as science evolves and research is conducted, more and more people (including the experts) now believe that deletion size does matter.  I remember when the deletion size was all I the hope I had left to hold on to.  As discussed before, we were told Alexander's prognosis was bleak.  Even as they ran his genetic profile, there was a period of waiting.  They rush tested the 4th chromosome to see if there was a deletion, but there was a longer wait to see how big that deletion was.  I remember.... each of those periods where we held hands and prayed.  Prayed.... "Please God. Don't let the deletion exist."  It did. "Please God. Make it a small deletion... Please." It wasn't.  I remember once, my Dad looking at Alexander.  I knew what he was thinking, because I had thought it a million times over.  He finally said, "His mouth... there are lots of people who don't smile very often.  If you could just...." I knew what he was saying.  You just wanted to tug at the corners of that cute mouth and tug it strait.  How could a downturned mouth mean so many things?  I just wanted to will it to happen.  But I couldn't.

No matter how hard I tried, I could not give Alexander back the genetic material he was missing.

15.32 - The reason Alexander was given a G-tube without being given a chance to learn to eat.
15.32 - The reason he was sent home with a heart monitor even though he has never had a "D-sat"
15.32 - The reason we were taught CPR before we were able to leave the hospital with him.
15.32 - The reason we were advised not to correct his cataract which made his eye blind.
15.32 - The reason the Neurologist, Cardiologist, Opthamologist, Gastrointestinalogist,  - every doctor was told to "make comfortable, but not to treat." As if we were in Hospice care.
15.32 - The reason an actual NICU Doctor held my hand and told me to ignore Alexander's monitor and allow him to die peacefully.
15.32 ..... The number that changed my life.
Now let me explain 15.32.  That number is not the end.  If you calculate all the other factors into it.... well - just follow along:


  15.32
+  16.3    (The official Wolf Hirschhorn deletion)
    31.62
-      .98  (The difference between the WHS deletion and Alexander's deletion)
    30.64
x         5  (The size of our family) 
    153.2  (Still following?)
¸         2   (Ray and I .... the Kids are important. They will need to hold each other together)
       76.6
-     30.0  (The number of medical professionals who told us to give up on Alexander)
       46.6
x        10  (The number of excellent doctors we now consult for Alexander's care)
        466  (Almost done!)
-       365  (The number of blessed days we've had with a family of 5 this past year.)
         101
-            1 (A miracle. His first birthday.... just around the corner.)
         100  Alexander is 100% who he was supposed to be.  100% created in God's image.  100% Beloved

15.32 does not change anything. It is a number. Just a number.

Why would you give up on a baby only 10 days old based on a number? 

There are many people out there who can talk at length about how life with a child with disabilities has effected them.  I could tell you how it has changed our life.  And it has.  Our life now has different priorities.  Our life has specialists and hospitals and therapists...  things we didn't really have before.  But our life has this unbelievable gift.  Of a sweet baby who just smiles - and melts your heart.  My most painful experience in this world of disabilities came so early.  When people chose to make my SON a number. My son is not 15.32.... he is 100.  I choose to look at him and see 100% potential.  His life is not written.  His fate has not been revealed to us. He has a long life of lessons, joys, triumphs, and sorrows - just like all of us do.

 For those of you who don't know -
Alexander does not use the heart monitor anymore (we gave it back last summer.)
Alexander's eye has been repaired, and he watches everything.
Alexander eats solid food. (tonight he tried 2 bites of deep fried onions and this morning he had some pancakes... he also eats baby food)
Alexander is gaining weight - abet slowly
Alexander smiles, coos, grasps toys, passes toys from one hand to another, grasps his feet, rolls over, sits with assistance, and stands in a stander.  I'm waiting until he eats that happy meal from McDonald's to go back to the NICU to show those medical professionals that a number doesn't define anyone. 

If you look at the world as half empty, you will never want to drink from that cup.  Our glass overflows... with support and blessings.

I am a Fireman. I am a superhero. I am a brother. I am a son.

I am not a number.

If you like this post you may also like:

Because of Easter

A Year with a Newborn

Public Service Announcement

Prayer of a Special Needs Mother

I'm too Excited to Keep it to Myself!

BADD.... Give me a suggestion!

I'm going to step out ... in my own comfort zone.  I know, that makes no sense ~ so allow me to explain.  May 1st is Blogging Against Disabilism Day.  Disabilism is not necessarily a word used frequently in the USA, but I understand the meaning.  So, I've signed up.  I'm going to do it.  This is kind of scary because I've only ever blogged about things that matter to me (which this does) - but I've done it undirected.  I don't want to be the "disability blog" ... but at the same time I want to stay true to my heart.  I'm a little nervous because everyone is going to be blogging on similar topics, so I want to write something meaningful - however, it shouldn't be a recap of something I've already said.  So, I'm going to think about it and hopefully come up with something good by tomorrow or Sunday.  If you are interested, feel free to follow the link and sign up yourself. Otherwise - wish me luck or give me an idea for a topic!

A Wonderful Week to countdown!

Only 8 days until a Miracle Happens. 

Alexander turns 1. 

It is hard to believe that last year Raymond and I were told to "let Alexander pass peacefully."

 

We did not.

We were told this day would not happen.... and here it is - almost. 

Here's a glimpse of his birthday announcement.  (No offense - but - I blacked out the address for privacy reasons.)

Thank you Kimmie for the Awesome touches on the Announcement!

Then... On Mother's Day (the following day) ~ Alexander and I are claiming the day back.

My church has offered us the opportunity to discuss openly how our lives have changed since Alexander's birth and the many blessings he has brought.  I will also be intertwining this message with heartfelt stories and specific ways God has molded people according to his plan.

If you are a local person and would like to attend my church - please send us a message and I can give you the address and times. (We have 2 services)

Again.. I'm not going to post it publicly only to have some sense of anonymity.  BUT - ALL are welcome.  Please... If you live in our area, feel welcomed to come to our church on Sunday, May 8.

Last Mother's day I received crushing news by doctors who gave up on a miracle before he had a chance to live.

This Mother's day we will celebrate the life of that miracle and make a

New ~ More Powerful Memory

Everyone is welcome to help us celebrate this milestone!

We would not have made it without all the support and prayers.

Wordless Thursday? Take your Kids to work~

Today was Take your Kid to Work day... and who would have thought it would be so much fun!  I was a little leery because they are only 2 1/2... - but I decided we would go for one "teaching" period and then my planning period.  Also - their amazing babysitter/my awesome cousin came in during my planning period to help me with them.  Did I mention It was so much FUN?! 

So here is our day in a nutshell.  We started last night with the packing of book bags and the laying out of clothes.  Then this morning we loaded up the car, ate breakfast together, and packed a snack ... to make it out the door at the last possible second.  Once at school - we took a tour of most of the building.  The kids got braver, wanted to hold my hand less and less, and tried to run more and more.  They are complete charmers and even made some of the "grumpier" people smile.  While I taught my class, they colored and were their hysterical selves.  The real treat was our trip to the small animal class to see Miss J.M. and pet the rabbits.  Definitely the HIT of the day.  And, that was it... 3 hours of twinadoe fun.  I need a nap!

So here are some pictures from our day at work with Mommy.

 Our day started out ok.  Standing on the chair that rolls.....

 Emptying the box of 48 crayons + emptying the box of 48 crayons = a lot of crayons.

 Andrew sitting at Mommy's desk working on his computer.

 Is it bad parenting if I let my kids use the stapler as a phone?

 Or let my son use the big paper clip as a brush?

 Um... no one did staple their ear to their head, just so you know.

 Again - they look Innocent.  It is creative lighting.

 I do love this girl. She tore apart every single paper clip in my room.

Addison and her newest BFF - J.M.

 Andrew and I checking out the Guinea Pigs.

 Surprise! Turtles are in that aquarium!

 Addison and I - making our way to the main attraction...

 ~The Bunny~

 My kids don't take no for an answer... they will chase an animal to the ends of the Earth.

Awesome day. Love take your kid to work day!

Oh STINK! I'm stayin' in School!!



This is Cindy.  She was my Best Student Ever.  My Grandma
made her... and I dusted her off for this picture. 
Strait "A's" - I tell you!

 And I have a TON of ideas!!!  First, I must tell you that I was born to be a teacher.  I was that kid.  The nerd who took home left over worksheets to teach my dolls.  The kid who asked for a red pen as part of every holiday gift giving occasion because I wanted to “grade” papers.  I even had “struggling” dolls – who ended up with very low grades and I had to remediate them.  I differentiated before differentiation was cool! 

Alexander grabbing his feet this afternoon. 
Happy Baby in the grass.

So, now I will confess.  I’ve been wondering if school was really the place for me.  I wasn’t sure if I was spreading myself too thin.  Was my family getting enough of my attention?  Should I be spending more time with the twins?  Was I being an effective teacher?  Were my students learning enough now that my attention was sometimes distracted by my family issues?  These are the thoughts that have consumed me the past few months.  It is worse when Alexander’s health is in jeopardy.  It is better/worse when the people I work with are so understanding.  On one hand, it is such a relief that I work with such amazing people – they tell me I can take time when I need it.  On the other hand, it is another reminder of what I have on my plate at this moment.  This has been the topic discussed around our dinner table for a while now.  I believe the topic has been decided.

I’m staying in school! I’ve been off work for a week… and I’m bored.  I miss school. I miss my students.  I miss my co-workers.  I miss adult conversation.  This past week from school was exactly what I needed.  Between Alexander’s 24 hour EEG, Easter vacation, and a conference today – it was just enough time for me to miss my professional life.  I’m going back next year, and I’m thrilled to death about it.

So I have some new ideas I’m excited to try.  I teach in a technology-based classroom, so I want to do something new next year.  I want to teach in a classroom without desks.  I want to get a big piece of carpet, a few couches, some bean bag chairs, and some big pillows and create the ultimate “coffee house” classroom.  I want to put a few big round tables in the classroom for those students who would still like to sit at a desk… but really – why do you need to sit at a desk to learn?  My students spend 99% of the class time doing one of two things.  They are either engaged in discussion with me or each other OR they are working on an activity on the laptops.  So – in either scenario – what does a desk have to do with anything?  Being excited to learn is over ½ the battle.  And – I’m going to bet money that my classroom without desks is going to be exciting to learn in.  Can you picture it?  Students sitting around in little groups discussing communism in China or the social implications of reality TV?

So Picture a Combination of these 3 ideas in a clasroom ~

Replace the kids doing nothing with students working!

Students working like this - in a room that feels like the first picture

You stil need some desks for collaboration.

The other idea I really want to persue is bringing one of my classrooms into a “college” setting.  Some schools are partnering with colleges and offering college classes in the high school.  I am SO the person to do this.  The only issue standing in my way (ok… there may be several issues standing in the way – but one I’m not sure can be overcome) is I do not have my master’s in this content area.  I do have a master’s degree – but not in this content.  Don’t worry – I’m willing to push down doors to see if I can find a crack to squeeze through.  I just cannot take on more coursework at this juncture in life. (I mean… I just decided I was going to emotionally be able to handle going back next year!)

Finally – I saw this really AMAZING idea where students partner with other students in another country to become e-mail pen pals.  I am definitely doing this next year.  I am so psyched to be able to offer this as a learning experience.  I mean… how amazing would it be to e-mail about the culture while we are discussing culture in our lives?!?!? 

So…. I don’t often talk about school.  It is a huge part of my life, but it is difficult to decide what is appropriate to put in a blog.  I certainly feel my dreams for crazy ideas in the classroom are ok to share.  I hope you can feel my passion for teaching because I am re-energized to try new things.  I am going back to work.  My life’s calling since before I can remember what I wanted to do.  I will plan to change the world 180 students at a time for now until I can become a professional blogger and change it a few million a post.

Letter to Alexander

Dear Alexander,

You are my baby.  Literally and figuratively. You are not yet a year old and not yet 10lbs.  You are my savior.  Your birth cracked a relationship I thought was so firm – it would never be shaken.  And yet… I questioned why God would not grant my one wish – a healthy baby. 

But he gave me something better.  A perfect baby. You.  

This past year has been filled with changes.  Our family has grown, my heart was broken, my faith was shaken, and slowly… rebuilt.  Because of you.  Because your sweet face healed my broken heart, restored my faith, and saved me.  That is right. You saved me.

If Addison and Andrew made me a Mommy, you are teaching me how to be a person.  You are making me realize what is important in this world.  You are teaching me patience.  You are teaching me complete and unconditional love. You are making me the Mommy I always wanted to be.

You are a fighter.  You rarely cry – even when people are poking and prodding at you.  You smile and laugh and coo… even in a hospital bed.  You defied the doctors.  You do eat, you sit, you stand (in a stander) …. But more importantly – you love.

No one can understand the pure joy it is when a child that was declared “unworthy of life” reaches up and strokes your face.  When he looks at you and smiles.  As I watch you sleep, my heart fills up with love.  I want to spend every waking moment with you – just to touch you and hold on to the precious moment.

You already know how to deceive (a little trick you learned from your sister.)  When the therapists come and you don’t feel like working – you fake sleep.  It is the most unbelievable thing…. You can fake sleep, complete with snoring, until the therapist leaves and then you are wide-awake again.  You do the same thing when you don’t feel like eating…. Except when I point it out you start to smile in your sleep. 

You are an angel here on earth.  You were the ultimate gift to our lives.  You show us that a life is not measured by what you do or how fast you do it, but by your ability to open a heart.  Not only has my heart been opened, but you have also opened the hearts of everyone you meet.

Love, Mommy

Letter to Addison

Dear Addison,

You didn’t think I forgot you, did you?  I just had to get through some Easter thoughts before I finalized my love letter to you.  Yours was the easiest and the hardest to write.  You have every quality about me that makes me unique, and I could not be more thrilled about that. I love you. I love you like the plants love the sun.  Like a surfer loves the beach. Like a Mommy loves her daughter. 

You were my first-born.  You were the one my Mother warned me about.  You were the one she prayed I would have – “A child just like you.”  And you are.  And I love it. 

You are sneaky.  When I tell you not to do something, you will look at me, smile, and do it anyway.  And I love it.  When your brother is playing with something and you are bored, you will go get it from him just to see him be upset.  And I love it.  (Ok – that one I could do without, but you are 2 and that is amazing that you can be so deceitful!) And I love it. You are stubborn.  You can go on a hunger strike for days waiting for a desired dish. And I love it.  You “play” with your Daddy.  You will have some toy taken away as punishment and ask your daddy for it back.  You will bat these beautiful eyes and say, “pretty please?” and he will make you promise to behave.  Then you take the toy and resume whatever it was you were doing in the first place.  And I love it. 

Here is an example.  Yesterday, while eating breakfast, you decided you didn’t really care for the meal you were served.  You declared, “I all done.”  I told you that you would have to wait until your brother was done eating to get down.  This was fine until you heard the music from Elmo’s world coming from the TV in the living room.  You started shouting, “I get down! I all done!” I said again, “You will have to wait until your brother is done.”  This was followed by big tears and lots of shouting.  Andrew was just finishing up when the Fireman Sam theme song started to play.  He recognized his favorite music and said, “I all done! I get down.”  I started to get up to clean you both off when you stopped me, “No Mommy.  I not done. I need more milk.” And you picked up your cup of milk and slowly began to drink it. 

You are mine.  All these things are things I used to do.  They make a unique combination of traits that created this headstrong person who tries her best to raise you right.  Despite the fact you’ve never seen Mommy do these things, I can’t help but marvel at your ability to instinctively know how to do these things.  You gawk when you run.  You love to hug and be cuddled. You are one of the most beautiful people I have ever laid eyes on.  Do you know that people have said you look like a doll baby from the time you were born?  Complete strangers would come up to me and tell me how beautiful you were. 

You are Daddy’s.  You love your daddy.  You love to sit with him and snuggle him and more often than not you will say, “No – Daddy do it.”  When you were little, you had terrible reflux.  Your daddy used to sleep with you out on the living room couch because your belly hurt after you had a nighttime bottle.  You are content with playing alone.  You love to read or pretend to read.  You have this hilarious way of asking to do things until someone repeats your words and then you say, “ok!” like it was their idea. 

You are gentle. You are always hugging your brothers.  You include Alexander without being told or asked.  You are a compassionate 2 year old.  Who knew such a thing existed? 

You are amazing.  Beyond amazing.  I just cannot believe God has blessed us with you, and every day I thank my mother for wishing you upon me.  It was the best wish ever.

Love, Mommy 

The problem with little families is

This blog is completely for me.  For the pure joy I will have upon writing it.  The memory of today is so sweet; I don’t want to let it go without recording it.

I was raised in a big family.  My mother is one of 5 and my father is one of 6.  I remember those times when we would all crowd into a small house and cram ourselves around a table or two on a holiday.  I remember when we would all shuffle into the living room to tell a joke or a story about things my uncles and aunts used to do.  I remember when my cousins and I would rule a small area to play make believe something.  The problem with small families is – this world doesn’t exist.

My brother in law and sister in law have the ultimate blended family.  They each had 2 kids before joining their families, and have 2 more kids together.  They have 6 children between them who span about 10 years.  People make comments about how big families are so expensive and blah blah blah.  My family has 3 kids born within 2 years, so we also get random comments from people who feel they should have a say on our family decisions.  But they don’t have what we have.  A holiday like this:  Pick up softball in the back yard.  Kids everywhere in a tiny house.  Hunting Easter eggs together – big kids helping little kids.   Family photos when all the kids are filthy, sweaty, and wet…

The problem with little families is – they don’t have days like this.

 Our Family Photo.  Yes, this is the best one - trust me... someone was crying in every picture!

 Nana and her girls....

 All the girl cousins hunting Easter eggs with Nana supervising

 Cool fact # 57 about big families.  There is always someone around to help.  Brady is "Drew's" big buddy.  He is always ready to help Andrew... at Christmas, at Easter, whenever. It is awesome!

 For those of you who think Addison looks like me.  That is a wonderful compliment, but now you can understand why I'm always skeptical.  Check out her cousins.  This girl knows how to pose.

Addison is a dead ringer for Emmalee - in the purple

 Kimmy.  Too big and too cool to hunt eggs. But is doing it anyway because Nana counted her in.  What does that say about the character of a person?

 Josh - he only looks like he is living in the 1970's.  He is this amazing combination of athleticism and peace keeping, animal loving hippie.  He is probably going to become a vegetarian professional baseball player!

 Here's Brady hooking his little cousin up with a hard to reach egg.

 Like I said - 2 peas in a pod.

  Livie is the ultimate supervisor.  She is part of the "blended" family - the part that spends the most time away.  So when she returns she is the one who is high on energy and high on hugs!

 Someday I might get my two in a photo together. looking at me. and smiling.  Someday

He was so excited about fining the surprise inside the egg.

After the Egg Hunt it was time to PLAY!

 Kaity riding bikes.  She is such a princess!

 Olivia. Man. When did you grow up? What happened? How did it happen? *sigh* you are beautiful....

 Daddy teaching Andrew how to bat.  Now, for those of you who understand the mechanics of baseball - Left Handed hitters are pure gold. 

 When it comes to running the bases, Andrew still has a few things to learn.  Livie chasing him down as he runs for the neighbor's shed.  It was like a scene from the bad news bears.

 When was the last time your family did this? A simple game played with uncles, aunts, and cousins.

 Katy - Again... she is not camera shy!

 The 3 amigos digging in rocks.

 I love that they are all out there together.  I love this family memory.

 3 amigos turns into 4 amigos.  Look - Andrew and Addison - no interest in the camera.  Emmalee and Katy know just what to do when a picture is pulled out.

Families don't do this anymore. This simple act of playing softball is so nostalgic is makes my heart sing. 

 Addison learning from Emmalee = how to have balance while practicing her "dance."

 Kimmy and Brady.  Typical brother and sisters in a game of softball.

 Addison jumping on the trampoline.

When I was a child, I wanted this.  I wanted to have 5 or 6 kids just so I could have these memories for my kids and myself.  We are not headed for the 5 or 6 route – but we are beyond blessed that our in-laws did.  When added to our current 3, we become this crazy bunch of kids ages 1-14.  We are that family. And I love it!

The Cousins. *Love* *Love* *Love*