Please Step AWAY from the Baby.

Random fact – a newborn’s optimal eyesight is approximately 7 inches.  That is also the space from a mother’s breast to a mother’s face.  Divine … God’s divine plan.  That a newborn sees his mother while she loves him in only a way a mother can.


So, I suppose it is natural for people to want to shove their faces into close proximity of a baby.  It is instinctual.  People want to see the cute baby and want the baby to see them.  People also feel this instinctual desire to touch or caress a baby.  They are so cute – you almost can’t help yourself.

News Flash:  Please Step AWAY from the Baby.

I know you mean well.  But don’t touch my kid.  Also – don’t put your face right in my kid’s face.  Let me explain it to you.

• Things aren’t like they used to be…. there are germs and illnesses you may be carrying you don’t even know about.
• There is this thing – called RSV.  I know… you’ve never heard of it before – please see above bullet.  In healthy children and adults it seems like a runny nose or cough.  In babies or medically compromised children – it can be life threatening.  Yes… I am serious.  Deadly Serious.
• I don’t know you.  Why do you think I want my kid to have your germs?
• Maybe you are a clean person…. did you use Purell or some other sanitizer after you touched the door to enter the building / check out counter / everything?…
• It is winter season.  Flu season.  Germ season.  I have 3 small children – who share germs. We don’t want yours.

This letter is an open letter to all well meaning people who see my children a child bundled up this winter and find themselves wanting to reach in, touch, and talk to this child.

Step back.  Away … from the baby.  Please. 

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.

The 2 headed Monster

I’m not bi-polar or manic depressive… although sometimes I feel that way. 

Mothers – picture this.  You wake up.  Babies are sleeping, and you make yourself a nice big cup of coffee.   You sip it leisurely as you catch up on your blog reading list for the morning.  You smile and feel completely blessed as you hear a soft conversation come from the children's’ bedroom.  You let them out and….


Everyone starts screaming for something different for breakfast.  They speak to you like you are a maid, not a mother.  You are given demands as one pulls another’s hair.  They wonder over to your freshly folded laundry and rip the towels down off their pile.  They tell you they want to help.  They scream and wake your youngest baby up.  They throw food on the floor and your house is demolished in less than 5 minutes. 

Bye. Bye. Tranquil morning.  Hello nightmarish day.  Feel a little rollercoaster coming on?

That light switch is constantly being turned on and off in my world.

My friend came into my room today and saw this:


She is also my friend on Facebook and knows that I spent almost this entire weekend force feeding a child that didn’t want to eat and couldn’t handle the volume of calories necessary for growth and nutrition.  In fact, last night we did something we’ve never done… we used the “pump” during the day.


She looked at my letter to my students and said, “How did that work out for you?”  I said, “Great!”  …. silence … She said, “Really?”

She saw what many people don’t.  The public persona versus the private worrier.  The *switch* that can occur on a moment’s notice.  The 2 heads of special needs.  I switch between feeling blessed and feeling frustrated. 

This morning I felt frustrated. Hours of phone calls with no answers.  A disagreement between doctors and pharmacists and a distrust of things that are not shown/explained to me will do that.  I don’t blindly follow.  I want explanations.  There is a discrepancy between the medicine dosage the doctor prescribed and the dosage we’ve been getting.  It is somewhere between 7 times too much and 7 times too little.  And somewhere in the middle is what Alexander needs. (Frustrated)

During my planning period I walked down to see the twins as they finished Preschool.  *switch*  They were all smiles and giggles.  They reminded me of why I fight so hard for my children.  They made me laugh as they showed me their latest project. (Blessed)

Later this afternoon, I called home to check on Alexander’s day.  *switch*  He’s eaten absolutely nothing.  sigh.  What happened to my little boy who ate pancakes?  Where are you? Slipping in and out of the land of “oral?” (Frustrated)

I take another phone call.   *switch*  Alexander’s been accepted into a “preschool” program.  It will be one morning a week and is integrated with kids with special needs and kids without.  I’m thrilled that he will get all that stimulation.  (Blessed)

On the way home… the feeling of exhaustion sets in. *switch*  The antihistamines make me tired and I’ve spent the day smiling.  I find myself reflective… not happy or frustrated.

I take a few minutes to re-charge at home and *switch* The blessings flow back into my heart.  My husband is healthy.  My children are all home.  Alexander is well cared for by his nurse.  The kids are wound up and running wild.  All is right with the world.  (Blessed)


Are you getting the picture yet?  Sometimes it doesn’t happen as quickly… sometimes the *switch* happens from moment to moment.  I decided to lay it all out on the line because I believe I am not alone.  If you ever talk or read something written by someone impacted by special needs… look closely… find the *switch*
It might seem like they fluctuate.  I’m fairly good at hiding the frustrating moments, but that doesn’t mean I don’t have them.  I just wanted to put a voice to all those who *switch* as life leads them… not the other way around.

Once again, I’m pouring my heart out with Shell :

The Unexpected Pregnancy

I heard the news today.  I don’t know how to tell you, because I don’t want you to think people are talking about you.  They are not… I was only told because, well, I would understand.  And I’m going to put this on my blog in hopes that God will lead it to the right people.

My heart breaks for yours.  As you carry this unborn baby from doctor to doctor, I know your heart breaks as well.   I know what those long days at specialists feels like.  I know what it feels like when your hope is chipped away with each new test, result, or consultation.  I know what it feels like to have that guilt weigh on your shoulders.

If you asked me a thousand times – 999 times - I would tell you, “it is not my fault.”  But that one time, when my guard was down, I would confess that I feel guilt over Alexander’s diagnosis.  I wasn’t taking prenatal vitamins.  I wasn’t doing the things I should have been doing.  I wasn’t prepared.  I ate the wrong things.  I was so “confident” because… babies are born healthy all the time. 

I should have known.  I should have done something differently.  I’m his mom.  I’m … his … mom… I just shouldn’t have allowed this to happen.  Those are the secrets of my heart.

What you feel it completely normal.  The waiting is so difficult.  Specialists can only tell you so much – and until you’ve held that precious baby in your arms… the bonding is not quite the same.  In time – we both will come to believe what our heads already know… there was nothing we did that could have changed this outcome.  God’s hand directs things in motion… for a purpose we are not always meant to understand.

Everyone must make their own choices; I’ve been told you are not going to terminate, and I can tell you that is a choice you will not regret.  Those specialists don’t know what a child can do.  Those specialists don’t know what God can do. 

We were told to allow Alexander to pass.  We were told he would never eat.  We were told he would not know us.  We were told children with his syndrome don’t walk or talk.  All of those things are false. 
So what if your unborn baby doesn’t cure cancer?  He probably wasn’t going to bring world peace anyway.  I can’t count the number of people Alexander has brought closer to God.  What if that is his purpose?  What if that has secured his place in heaven?  And the first shall be last and the last shall be first…

As I write you this letter, Alexander is crying.  He’s tired of the EEG wrap on his head and he wants to fall asleep.  Yet I tell you this, I would not have changed a thing.  He is beautiful in every way.  He has fulfilled my final dream to be his mother… just as I was meant to be.

I know this video has been shown before – but … I need for you to see it.  It is the life that has chosen me.  At some point, turning things over to God will bring peace to your heart.

Please know that I am here.  Feel free to read anything you want.  Feel free to come to me at any time.  I am always here. 
I wrote this letter in hopes that it reaches a specific person… but the truth is, so many mothers carry the burden of wondering if their unborn child will be ok.  Please feel free to repost this as you see fit… in the hopes it reaches all the people who need to read it.

I'm linking with Shell for the same reason....

Life Lessons… take 432

Those of you who know me in real life probably know that I’ve started to write “Letters to my Students.”  Most mornings I come in and write them a note on the board.  The students have really started to respond to them and it has been pretty cool watching them come in and look on the board right away.  Someday I will probably post my pictures of letters – but for now … there were 2 “Life Lessons” I talked to my students about.

Life Lesson 1 – You can see the glass 1/2 empty or 1/2 full.  Life is how you react to situations…. I choose 1/2 full.

Life Lesson 2 – Education is the most important thing you can ever have.  Without being too specific, I explained to my students how the doctors and I disagreed on several areas of “treatment” for Alexander.  I told them proudly how I don’t allow ANY doctor to talk to me like I am uneducated.  Because I am educated.  And… I am extremely educated about my son.  I have learned the tricks that work for him.  My education, my ability to think for myself – is what has given me the courage to stand up to doctors and get the best care for Alexander.  The next time they don’t feel like being in class… they should remember that they are learning to think for themselves as much as they are learning English or history.

We are home and doing well.  We love our neurologist.  I spoke to him today and he agrees with everything I said.  We will now get another EEG to see what these new shakes are.  We will get a letter in his file and to keep with him that says – “Give Phosphenatoine ASAP.”  Just as we wanted.  Because we are educated enough to persevere even when one doctor says it isn’t important or possible.



Today… when I bought our “winning Powerball ticket” because I was feeling awesome – I also decided to share the love.





Oh! Don't forget to link up tomorrow for Friday's Confession Booth!

Yesterday I Cried

Alexander had a seizure.  His first one since June.  Our third week back to school.  And I cried.
I cried as I left the building.  I cried as I drove home.  I cried when the helicopter told me I couldn’t ride with him, and I cried when we were stuck in stand-still traffic for over an hour on the interstate. There were moments where I felt such self pity.  I will not lie.  Why wouldn’t they just let me ride with him? Why wouldn’t they just let me ride with him?

As I posted yesterday… Everyone has moments where they just… break down.
My post yesterday wasn’t meant to demean those moments.  No matter your circumstances… we all have them.  No one’s “circumstances” are bigger or more than another’s.

In my world, I hear people complain about losing sick days. They complain about the interruption of their schedules.  I hear people complain about … everything … which was my rant yesterday.

But… my tears were just mainly for my baby.  He seized for 5 hours. The why wouldn’t they let me ride with him? – was for his sake… not mine.  They stuck him several times because I wasn’t there to tell them not to.  They gave him medicine that doesn’t break his seizures because I wasn’t there to tell them not to.  His poor little brain seized for hours because the drug that “breaks” his seizures couldn’t be given until we got there…and that took almost 2 hours in traffic.

I just want to kiss it all and make it better.  I want to hug him until the seizures roll by.  Mommies should be able to do that.  Mommies should be indestructible.
 
Truth – I cried for both of us. 
Truth – I cried for him.  Because in the end… I just want him to be ok / happy / feel better.
Today – I am thankful that he “outgrew” his medicine dose. 
Today – I am thankful the Keppra is still working (just at a higher dose).
Today – I am thankful his seizures have stopped.
Today – I am thankful I have a job and coworkers who cover for me when I have to leave.
Today – I am thankful this happened this week instead of last (see news story HERE.)
Today – I am thankful for the friends and family members who prayed for us …. over 100 e-mails, texts, calls, and Facebook messages (I counted.)
Today … I will push away the anger and frustration of a few moments and focus on those things still to be THANKFUL for.
Today – Alexander is crying because he’s ticked we are still here.  What a sweet sound that is.

I debated.  I wasn’t going to link up – because this post needed posted today no matter what day it was…. but – so many people over there have been following our journey – here it is.

*** We are Home ***

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. 

Run Around

(At the request of my husband - names of specific insurance companies have been omitted.)

Dear Insurance A,

I'm sorry my son needs so much.  I'm sorry you got stuck being our "primary" health insurance.  If you could please stop sending us those "coordination of benefits" forms for us to fill out - that would be a help.  Ray is older than me.  Next year, guess what?  He will still be older than me - thus... you will still be primary.  Funny.... age sort of works like that.  I realize you would really like to pass the buck on this one.... but - you are costing me man hours that I don't have.
So, you've basically denied almost everything we've submitted to you.  That's awesome, by the way.  You know I pay into my health insurance every month... right?  Again... sorry you got the short end of the stick.  You got stuck having to actually pay out rather than just collect.  

You denied our nursing hours, almost all of our extra medical needs, and here is the kicker... you just denied Alexander's stander.  Yup.  You don't think it is medically necessary for him.  Just a quick question - what criteria exactly do use to determine medically necessary?  Really? What is it about Alexander that makes you think he doesn't deserve a stander? 

Total hours on the phone with Insurance A for this one issue = 6 and counting.  We are in our second appeal.  Seriously... You've seen pictures.  How is it that he doesn't need the stander?

Dear Insurance B,
I'm so glad that I have you as my health insurance.  Seriously, you should be thrilled... you are the secondary.  Insurance A has to first deny us.  Oh, what is that?  You defer to what Insurance A says?  How convenient for us all.  So basically, if Insurance A approves our claim (and coincidentally pays for it), then you will approve it also... hmm - that costs you $0.00, right?  Or if Insurance A denies our claim (and decides not to pay), then you will deny also... hmm - that costs you $0.00 also, right?  How nice for you.  You do remember that I diligently pay my health insurance premium every month, right?  I mean... we are "teachers" - we get the best medical coverage there is.

Dear Medical Assistance,
Is it any wonder you get a bad rap?  You seem to be the only one who will approve us for anything.  Thank you for the nursing hours.  Thank you for approving the stander.  But it shouldn't be this way.  No wonder the tax payers are so upset.  You are the only one who seems to understand that Alexander has potential and should get some extra help. 

I'm trying to be totally honest here about our situation so you can really get an idea.  Ray and I should be on top of the world.  We are both teachers - so you know we have great health insurance.  Ray's is primary - Insurance A and mine is secondary - Insurance B. Then Alexander is also covered by medical assistance.

You know what we are?  Their worst nightmare.

I think a lot of families with extenuating circumstances are frustrated.  I read about this frustration all the time.  The problem is, most people have a really difficult time expressing these thoughts without sounding bitter.  And, maybe I sound bitter too.  I'm not.  A little frustrated.  It seems we are always on the phone with someone about some services.  Probably 3 hours total just yesterday... just getting the run around on this stinking stander.  Appeal after Appeal.  The truth is, my son will have the stander - and I'm not bitter - but I'm not a quitter either.  The insurance companies want to outlast you.  They hope you will give up before they give in.

If you've never been in this situation before - congrats.  If you end up in this situation - don't give up.  And ... if you are already traveling this path - we are right there with you. Out last them. You can do it!

The miracle of a medically fragile child

Tomorrow we will make our way to the geneticist.  I'm preparing myself.  I know what our conversation is going to be like.  We haven't seen him in the last 6 months.  To be honest... seeing him is probably a waste of a day.  The facts are clear:  no one truly knows how the specific genetics of the 4th chromosome work.  For those who have children with smaller deletions will tell you the smaller the deletion, the less severe the syndrome.  Those parents who have children with large deletions, like ours - will tell you deletions don't matter.  The only genetic news I would love to hear is this:  Alexander can do anything.  But we are going.. and will continue to go until we feel it is really no longer useful.

First round of AM meds

Here is the low down on the last 6 months.  This spring, Alexander continued to have uncontrollable seizures.  He was transported by helicopter 4 or 5 times to Hershey.  He is now in the process of being weaned off his third medicine in an attempt to control these seizures.  At this current time, Alexander is completely doped up.  When you wean from one medicine to another, you have a week or two where the body is overloaded with both drugs:  you add the new drug before you begin to back the old drug off.  Alexander is on one his largest doses of seizure medicines ever during this week and next week.  So what will the geneticist see?

A 14 month old 10.5 lb baby that lacks head control.  (He had head control until he put on 6 oz in 2 weeks and his muscles haven't compensated for that weight gain.)  He will not roll around, tolerate tummy time, tolerate the Wingbo, tolerate sitting for long periods of time, tolerate standing in his stander for long periods of time, or tolerate extended periods of oral eating.  Because he is completely drugged up and exhausted.

What he won't see....

Alexander sitting almost unassisted.

Alexander taking assisted steps

Alexander enjoying his stander - he can be in it for hours.

Alexander enjoying eating - or eating macaroni and cheese.

Or Alexander talking

Because Alexander will probably be too tired to show off those tricks.

But what he should see is this. 

Life through the eyes of a child.... He should witness the miracle of a medically fragile child.

Let me show you some miracles.  Medically Fragile children who have had life threatening stays in the hospital, who have pushed through the sticks, needles, seizures, .... the unbelievable pain of constant tests and medicines to try to determine and control a medical problem.  I don't want to share their stories... if you are interested, you can follow some of the links and read about their own special road they travel.  I do want to praise the miracle of God as demonstrated in these children labeled as medically fragile.

Mia.  4 months ago Mia spent over a month in the hospital.  The prayers that went out for her were amazing. Because her life was indeed "fragile."  She fought.  She barely cried. She was courageous.  She showed and needed love.
HERE is a video put together by her parents....

Tanner.  5 months ago Tanner spent time in the hospital for severe dehydration - even though he was receiving his nutrition via g-tube.  His color spoke volumes to the doctor.  It happened overnight. ... because his life was indeed "fragile."  Tanner didn't cry.  He didn't fight.  He was courageous.  He showed love and needed love.  Look at that face.  I screams, "love me!"  "I can do this!"  And he can.
You can read about his journey HERE.


Kaylee. 3 months ago Kaylee spent time in the hospital while doctors raced to place an emergency g-tube in her for nutrition.  She was not receiving enough nutrition, the button wasn't placed correctly, and her "medically fragile" condition was again evident.  She didn't fight.  She was courageous.  She just needed love.  Her mom has a blog - but you need to contact her privately to read their journey.

Bria.  The beautiful baby who inspired this post.  She is Alexander's soul mate.  You would never know that she was running a fever in this photo.  Or that she has several seizures a day. Or that she is running a little "competition" with Alexander on who can have a seizure the longest.  For several months this spring, Bria was in the hospital more than she was out.  She doesn't cry.  Not even when they continue to stick to find a vein because most veins are too small or blown.  She doesn't fight. She is "medically fragile".... but she is strong. 

And Magnolia.  Alexander's Twin.  Just last month, my heart prayed for her healing.  One day, she just became ill.  One day.  She was fine and the next she wasn't.  Just like all of these "medically fragile" children.  This image haunts me....... It haunts me because it has been all of our children. Magnolia is a fighter.  She is so tough.  I'm thinking about my twisted ankle from yesterday - that I cried for over 10 minutes about.  Magnolia does not cry.  She fights.  She is a miracle from God.  Yes.... medially fragile children exist.  Yes, it is a journey of ups and downs that these children experience.  BUT they are miracles.  They are courageous.  They can tolerate pain that none of us can even begin to imagine. You can read more about her journey HERE

Finally, my baby.  Is it any wonder he is not always at his best game?  We go forward.  We go backwards.  We sit, and take a break.  We stand, and take a break.  We are constantly fiddling with his medicine - just to find the perfect cocktail.  And we will.  But Alexander doesn't cry.  He doesn't complain or whimper or .... even show real discomfort.  He takes it.  He shows me how to be courageous.  He shows me that a twisted ankle should not leave me sobbing for so long. 



How can you look at this picture and not see a miracle from God.  Just look at him. He is perfect.n  They all are.

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? 

"How is Alexander?"

I get asked this question about a million times a day.  Maybe not a million... but quite a few.  It is sort of amazing.... to have so many people care about your little baby.  I want to answer this question. Honestly.

Let me back up for a minute.  Today a woman wanted to pray with me.  She is awesome and I was excited for us to pray together.  But her prayer and my prayer were starkly different.  I prayed for Alexander to not have any more seizures and for the happiness and contentedness of our family.  She prayed for complete healing for Alexander.  This is one of the things I wrestle with when answering how Alexander is...

Alexander - photos of Magnolia break your heart

Also, 3 days ago, one of Alexander's WHS friends suddenly became ill.  She is still in critical condition and for a few days ... it was very scary.  One minute she was just fine, and the next she was puking green bile.  A stark reminder of how medically fragile things can be.  You can read about her (soon to be recovery) HERE ... or you can just pray for Magnolia.  Trust me, this seemingless rambling will all make sense soon.

Finally, a good friend of mine suffers from a genetic disorder that makes her life very painful.  She posted this letter written by someone else with her syndrome.  It was beautifully written and explained the conundrum of having an "illness" that isn't always evident.  This was the final straw that led me to post "How Alexander is."

Alexander is great.  This is usually my response to the question.  That is how I feel.  He's doing great.  He is happy and we are not in the hospital.  I think these things are great.

However... All things are relative.  Alexander is not going to grow his DNA back.  I know that God has the ability to do this, but I also do not believe this is part of his plan for Alexander.  DNA doesn't just come back.  I pray for his health, growth, happiness, etc. I do not pray for his DNA to come back and his "complete healing to be a normal boy." (not my words)  I do pray that he will live life with as much ... amazingness as is possible.  Just because I say he is great doesn't mean he is "cured."  (I told you this would all tie together).  He is still medically fragile at this point.  He still has a feeding tube.. and needs it.  He still has major delays (although I think he's going to have a spurt soon).  He is by some standards - not great.

I guess what I'm trying to say here is that some things are not going to go away.  Alexander is, at least for now, going to have delays.  Alexander is going to fight the seizures.  Alexander is going to struggle to find the balance of nutrition vs oral feeds.

 BUT life is relevant.  When there are things that you cannot change - you learn to accept them. So they really don't even factor into the equation of "How is Alexander?"  They are the givens in the equation of unknowns.  Alexander is great.  He is doing well.  He is happy.  He is home with us.

Life is good.

The eyes that are always on us

It is sinking in.  (Please don't misunderstand this post. Our family needs for Alexander to get this service dog.  I will do whatever is necessary to make sure all of my children are happy and healthy.)  However....

The reality of how this will change our life is beginning to set in.  We will no longer even be able to attempt to blend in.  Allow me to explain.

As a mother of twins, people are always staring at you. When I was pregnant, people would say things about how enormous I was (and I was only 6 months pregnant).  People would ask really intrusive questions, like, "Did you use IVF?" or "Are they natural?"  It was as if people felt that had some right to blurt out things because the pregnancy somehow turned off the receptors between their brains and their mouths.  I was once at a store and had the check out clerk as me if I was going to try to nurse the twins.  Again.... totally inappropriate question to ask a total stranger.

Then you have the twins.  Now a whole new level of  "oohhhh... let me see" starts.   For those of you who aren't parents of twins, trust me - this actually happens.  I remember one mother telling me that some stranger actually asked her which child she liked better.  Or another mother recalling how a stranger said, "Oh good - you have a spare."  I know the majority of you are probably sitting there reading this with your mouths hanging open, but let me assure you it is true.  My twins were born at 33 weeks at the end of October.  It would be the dead of winter, flu season, and we would have to go get something from the store.  People would constantly walk up, touch my children on the face, and get right down into the stroller to breathe their germy hellos to the twins.  This might not seem like a big deal, but people - babies, especially premature babies do not have developed immune systems.  The point is... twins make you stand out.  People notice you.  People pay attention.  You don't blend into a crowd.

When I take all three children out now, we can almost blend in.  People want to come over and see the "new baby" - but, for the most part, we blend in.

Next year this time, our days of blending in will be over.  When we walk into a grocery store, we will have a service dog.  When we go to church, the mall, Walmart... we will have a service dog.  I will be so thankful of the service this dog will provide, but it is a little daunting to realize that we will not blend in again.  People will notice the unusual - the dog in a store.  It is ok.


The blessings outweigh the fact that we will once again be on the radar of people who stare.... but the reality is beginning to set in.  Eyes will always be on us.

Please pray for Magnolia

She is Alexander's twin, but more importantly - her family travels this journey with us. For as much as I can celebrate our blessings - we would not be here without the prayers of everyone around us.  Please shower this little girl with your prayers.  She is a fighter, but she needs help to pull through.  You can read her story HERE.
Please.... take the time you would have spent praying for us - and give it to Magnolia and her family. They need it.

The pump won the battle, but will I win the war?

I'm headed to bed. I have an arsenal of amazing pictures to sort and post of our weekend adventures. And yet, I'm stuck calorie counting and running the numbers again.

*UPDATE*

Prior to last week - Alexander took Trileptal and was completely lethargic. This medicine was making it so he would sleep almost 20 hours a week. He would eat maybe 1-2 oz a day orally. Maybe.... Then we had a seizure and things were re-evaluated.

Alexander was put on Depokate or Depokane or Valproic Acid.  Same drug - different name.  This drug does NOT make him tired and it has a side effect of increased appetite.  The combination of these two mean Alexander now eats: (drum roll please) around 8 oz of food a day.  This is stage 3 consistency baby food with some table food thrown in for practice.  Tonight he ate his entire piece of chocolate Ellaclare cake.  I mix duocal at a rate of 1 scoop per oz - so each ounce is about 50 calories..

We had also put Alexander on the pump overnight because of his total disinterest in suck/swallow.  Also - he needed the fluids and the calories.  He currently takes 12 oz in a 24 hour period.

Here is the FABULOUS conundrum.......

Before he was getting 100 cals from food + 400 cals from Ellacare + 50 cals from MCT oil (supplement) = 550 calories = 115 cal/kg  This is a great number for weight gain.

NOW.... he gets 400 cals from food + 400 cals from Elacare + 50 cals from MCT oil (supplement) = 850 calories = almost 200 cal/kg. This is extremely high.

How much liquid does he really need? should we try to get rid of the pump at night? we could bolus him some during the day to make a little up... and he could go back to sleeping through the night ....

The pump is just so.... *sigh* I hate that thing.  I hate to look at it. I hate to say we use it every night.  It is not what I want for my child.  However, it was a necessary evil.  I don't want to push Alexander too fast and I don't want to lose the ground we've gained by him being on the pump.  Also.... if this huge calorie intake makes him grow a little faster - then I will tolerate the pump for now.  BUT - it still comes down to - he is on a feeding pump every night.  As I type this, I find myself tapping the keys.  what to say - what to say?  Should I stop it?  Go back to bolusing during the day? How much actual formula liquid does he need if he is eating that much? Should we continue on with the pump and hope for a big payoff from these huge calorie intakes?

Thoughts?

Am I in Denial?

I've been pondering this question all week. 

There are some things I should explain.  I feel my heart growing.  I sit in the back yard with my kids and feel complete joy.  Even if you look back at my pictures from the last few posts, I think you can feel the happiness radiate through our laughter. 

I have also stopped thinking about our future.  Because when I do, I have a bit of a panic attack.  It was a great piece of advice given to me by a friend who has their own special circumstances... "don't think about life 10 years from now, you will drive yourself crazy."  I have worked very hard to push those images out of my mind. 

The national support group's connections .... I have all but severed.  I am still a member, but a superficial one at best.  We attend the conferences, but even the upcoming conference - I will be going for a different reason than we went the last time.  The last time, we went to learn.  To find out as much information as we could.  Now I just don't care. 

That statement makes it sound like I've given up.  I haven't.  I just don't care what anyone predicts about Alexander's future.  I don't care what the research says about LETM1 or any other gene on the 4th chromosome.  They can't give that material back to Alexander, so why fill my head with worries?  I really only care about different therapies we could use to help him.  Those are the things I fill my need to learn time with.  I believe it is my job to help him as much as possible.  So I strive to learn as many different techniques as possible and not focus on what any outcome might be.  I chase out the fear from my head with the emptiness that is bliss.

Which brings me back around to thinking about our future.  I'm fortunate - my closest friends around here have children with Wolf Hirschhorn Syndrome who are all young.  They all have this amazing potential.  And they amaze me every day.  Even though we are moving through things at super slow speed... we still try to focus on the cool things our children are doing.  Alexander ate almost 3 oz yesterday at a meal.  This is awesome! It is super slow awesome, but still awesome.  

The issues that some parents deal with when they have children who are older than Alexander became too overwhelming to hear about.  I have made separate places for myself to go - to be me in my little world of happiness (if I so chose) - or to support and ask questions of parents who have been down this road longer.  I removed myself from the daily e-mails asking questions that I had no answers to... only an anxiety filled heart.  I created a separate facebook page for Alexander.  Only Alexander's "friends" and my mother and mother - in - law are on the page.  Because I needed a place where I could voice my private concerns and not be bombarded every day with talk of seizures, medicines, and illnesses.  I honestly don't even check it all that much.  And I have kept it separate because I need to compartmentalize some aspects of my life. (If you are connected in this community - please don't be offended!)

So what brought on this internal debate into my happiness?  A discussion on respite.  I was discussing nursing care for Alexander with his nursing company and the topic of respite came up.  (This would be, for example, a nurse to watch Alexander while Ray and I went out to dinner.) At this exact moment, we still have people who will watch him.  But as his seizures become more and more prolonged... you can sense the anxiousness of people.  They want to watch him, but they are afraid something bad will happen.  Anyway, the head person from the company said we did not qualify for respite.  My response? "Why not?  He has seizures that last for hours, takes almost no liquid food, and must have a ton of things put through his G-tube... So how severe do you have to be to qualify for respite?" 

I was immediately upset.  I don't think about Alexander in that way.  I don't think about our family in that way.  I was planning for a "future" scenario that does not even exist yet. And we don't do that. 

So the happiness has seeped back in.... as I pushed the future out.  But the nagging question that sits on my shoulder and whispers in my ear is, "Am I truly happy? Or am I just in denial?"

I think the answer is I am happy.  I think that I am just being a good parent to all my kids.  I think I am ~ Living in the Moment~  ... but it could all be a sham.

Ok. I'm ready for it.  Want to weigh in?  Just be gentle if you are going to tell me I'm in denial - remember I'm just a mom.

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.