It is So Much Work

I need to choose my words carefully.  I don’t want to offend anyone or misrepresent my true opinions.

Got everyone’s attention now?

There are these tools.  For children with special needs.  These … amazing resources.  They give life (literally) where life would not have survived.  They change lives. 

- In the literal sense… Alexander’s feeding pump has saved his life.  His g-tube has allowed him to be hydrated and nourished; I know he would not have survived the past year without it.  You have no idea how hard that is to actually say. Because the reality is I hate that thing.  I’m the mom that dreams of ripping that thing out. Who dreams of the day when we don’t need it.  Alexander didn’t use the pump regularly until last spring.  You can read that post HERE.  And…. then he just didn’t eat enough.  Went way down hill….. This past summer, there were days where he was not oral at all.  *sigh*

- In the life changing ways… we have standers, a wingbo, sensory toys, AFO’s, Vision therapy tools, a z-vibe, the iPad, and tons of other things to help Alexander develop skills he might never have gained.  I really feel these therapies are changing the things people (especially with Alexander’s syndrome) can achieve.  Sometimes older children are scary.  But, what if that is just because they didn’t have access to all the things we have now?

Ok. So here comes the controversial part.  To help a child with disabilities reach their full potential requires a ton of work. And… I’m not only talking about from the child. 

Don’t get me wrong.  Alexander is the hardest worker I know.  He puts more energy into sitting up than I put into any activity.  And often I find it ** tactless ** when parents of children with special needs whine.  This is a little different.  It is not a whine.  It is not a post about “why is this happening to me?”

But … on a very regular basis – I beat myself up because I haven’t done enough to help Alexander that day.


In case you missed it … Alexander is eating now. And I mean eating like a champ.  He is almost 100% oral.  I say almost because he is probably just shy of his caloric mark.  Here is where it becomes a lot of work.

* If Alexander is fed on the pump – all I need to do is calculate how many calories he needs, formulate a feeding plan, and pump it into his stomach.  (In all honesty…. easy)  There are other things that go into it… but you basically figure out  the best nutritional cocktail and serve it.

* I have fought the pump since the beginning and it has required a lot of extra time and energy.  And now… It is a ton of work.  Not only does it take him a long time to eat (time that I can’t do much else), but I must also count every single calorie and nutritional aspect of what he takes in.  Do you know how many calories are in 3/4 of an egg over easy? Or in 1/2 slice of bread? with a little bit of butter?  How about how many calories are in an oz of cheese? Or is it too much to give cheese and eggs on the same day because of protein overload?  How many calories are in “some” pizza? Or “some” pork? Anyway – you get the idea.  It is not easy to figure out how many calories he is getting during the day to recalculate how many he needs to grow.  It is so much work. I’m not going to lie. It is hard work for him to eat and it is hard work for me to help him to eat.

* The same respect, every piece of physical therapy equipment takes so much work.  Alexander has to work so hard to move those muscles, but I have to put his braces on, his shoes on, give him time in the stander, adjust the stander, put him on tummy time, help him roll over, help him grasp for things, make the signs for “more” and “all done” when he is eating.  We also have to use the z-vibe on him, mimic his coos, practice sitting, practice with the iPad technology…. practice.  It is labor intensive and … work.


It is really a labor of love.  I once heard a woman speak about how she spent 2 years touching her son on the shoulder to indicate when he should put the spoon to his mouth… until he was able to self feed. Two Years.

I am so grateful for all these things to help my son.  But, there are times when it still really lies on the motivation of parents to move past these tools… to put the tools to necessary use – so development happens – and they aren’t necessary anymore.  So much work.

So next time you see a parent of a child with special needs.  Celebrate any milestone you can. And give the child a high five. … and the mom a hug. Because she probably needs it. 


Thanks Shell…. For letting me Pour My Heart Out.

Somebody Catch That Elephant!

Problem:  I am a buzz kill.
Solution: None.


I went to a party last night.  I took my date… a very handsome man. 

And… I’m nervous.  A lot of people haven’t met Alexander.  Sometimes I just want to shake that elephant in the room. 

It’s not that people don’t know…. or that we can’t talk about it.  But… all these topics come up and conversations die out.

We are not a newborn… but we fit into newborn status.  People comment on how cute he is. Because he is.   People say how good he looks. Because he looks good. … but, he was tired. He didn’t want to sit up or hold his head up or play with anything.


And I could feel it… the worried looks.  That Alexander was still so “newborn.”

And that Elephant in the room is off and running.

Friends say things and it seems I can never have the right response.  I feel defensive, “he isn’t feeling well. He normally sits so big.” 

I don’t want them to pity me so I try to make light of the questions asked, “Yeah, nothing like forgetting to feed your kid.” or “here’s a photo for Bad Parenting Magazine – how to smoosh your kid on the couch between 2 fluffy pillows.”

I’m probably over sensitive.  I don’t want to be a downer because people don’t know what to say.  And the truth is… sometimes I don’t know what to say either.

I’m better when I can write it out.  I’m better when I can think before I commit words to a page.  I’m better when I have a chance to use backspace and erase words I didn’t mean to say. 

Dear Friends,
Please continue to invite me to things.  That Elephant is growing smaller… I promise.  I need to get out.  I need to practice.  I know I have to work on it.  I need to build a little more confidence.  I need to chase that Elephant out of the room.  Just… let me keep being “normal” until “normal” is all we are.
Thanks,
Owner of the elephant.

When No One Else Believed….

I once knew a girl.  She didn’t know what to do when she grew up.  We discussed this at length… because she was special.  She was The Darling Graduate. 

Along Came Alexander.

She is currently in college with a dual degree in Special Ed and Music Therapy.  She may decide to do something else… but I know she will walk through life touched by a miracle.


I once knew a girl.  She had to write a paper for a college class.  She couldn’t decide what to write it on… because the topics seemed so vast.

Along Came Alexander.

She is writing the paper on WHS.  I can’t wait to see how it comes out – maybe she will publish it here or on the WolfHirschhorn Site.


Each year there are approximately 200 students who learn that saying THIS word is wrong. You know why I feel compelled help them understand the power of words?

Because of Alexander

I know lives are being changed.  Because … Along Came Alexander.

It is amazing to see the outpouring of love that comes for our family.  If you haven’t had a chance to see how we would like to give back, please read THIS POST.

But… Here are some of the pictures from our newest tool to help Alexander.  Thank you. 

Alexander getting his new IPad …. Love – If you would like to see the results – click HERE.

        

Video of Thanks from us to you…  My first VLOG.  I’m seriously going to need to get better clothes!



And now… what you are dying to see. Alexander using the IPad for the first time.



I’m telling you… this boy is going to do amazing things. We thank you again… for not giving up on a boy despite what uneducated doctors told us.  For looking with us at potential – not limitations.  We love you for this.

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 :

I feel trapped.

This was a comment made this morning. By someone with a label. That broke my heart.

I wasn’t going to write this post.  It is in answer to a question about labeling. (Ok… I was debating about doing this writing prompt because I am trying to flex my “writing” muscles a little.)  But, I am in the middle of a picture heavy, happy fall post.  I suppose I was toying with the idea because I had words floating in my head, “what does labeling mean?” “is it fair?” do I support labeling?”

And then… a conversation that hit a little too close to home.  “I feel trapped,’ can you imagine?”  yes… I can.

Here were my original thoughts:

Labeling is essential in life.  As a teacher, there is no way I can appropriately teach you if I don’t know what “level” you are on.  Can you read? Do you need a big challenge?  How can I push you?  What are your interests?  How can I engage you?  How can I relate to you?  Everyone is different, but – grouping people into “sort of boxes” gives me the advantage of reaching people at the level they are. 

Example:  If you put William Hung in the same music class as Jackie Evancho, everyone might get frustrated.



Yes, inevitably everyone gets labeled.  The nice thing about our society is that we don’t live in a caste system.  You can move freely in and out of your label.  Athletic, musical, intellectual, social – you can be all at once or move into and out of your labels.

That would have been the gist of my post.  That would have been the stand I took.  My head still says… “We need labels! They are a necessary ‘evil’ in life!”  But my heart weighs in heavier on this one.

I Feel Trapped.

Mother, Father, Sister, Brother, Teacher, Administrator, Coach, Student, Child…. it could have been anyone.

Andrew. Addison. Alexander.

Alexander’s eyes say, “I feel trapped.”  I know he is cognitively aware of what is going around him.  He laughs.  He plays peek – a – boo.  He wants to do things that his body just will not allow him to do.  When I look into his soul… it says, “please, don’t let me stay trapped forever.” 



What if we would have listened to the doctors when he was born? What if that label would have defined him?  What if others let that label define him? What if someday we are not around to look into his soul and fight to release him?  I hate every label attached to him.  I hate the words “Mentally Retarded.”  I hate the words delayed.  All the while my teacher – self says those labels are necessary to get him the assistance he needs, my “mommy-self” screams those labels do not define my child.

Andrew and Addison.  They are the the siblings of a child with a severe disability.  They are close in age.  Where ever Alexander goes, they will also go.  And vice – versa.  I pray that they can stay together.  I pray that they support each other.  I pray they don’t have resentment for the things they have to or can’t do because of their circumstances.  Please… just let them love and support each other.

What if Alexander’s labels harm their feelings of self worth?  What if the labels that come with them change their feelings of self worth?  How can I prevent that?  How can I prevent them from slipping into a caste system where they can never overcome a label?

In life, I am a Mommy first.  I am their Mommy first.  I have some real concerns about the labels that are now innately attached to them.  I am afraid those labels could be so life defining that they won’t be able to attach themselves to other labels.

I’m linking up today with Mama Kat – and her writing inspirations.

Oh - And don't forget to link up tomorrow if you're "Confessing!"




So what do you think?  Labels a good thing?  A necessary evil?  Or – all together wrong?

I won’t take NO for an Answer

It is not an option.

It doesn’t exist in my vocabulary.

“Obstacles are put in our way to see if what we really want is worth fighting for,” unknown.

Here’s a letter I wrote to my students last week.





These are true statements.  There is nothing I can’t learn, do, accomplish.  Do you know what the rate of mg/kg of Keppra Alexander needs to currently keep his seizures under control?  It is about 45 mg of Keppra for every kg Alexander weighs.  This means that at 11lbs 8oz, he weighs 5.2 kg.  He gets .8ml of Keppra 3 times a day.  The solution is 100mg/1ml.   The ratio comes out to 45mg/kg. (actually closer to 48... but you get the picture).

I hate math.  I hate calculating things.  And yet… I calculate.

I also calculate calories.  A constant mental calculation of calories that Alexander eats.  Liquid calories, food calories, supplementary calories… calculate, calculate, calculate.

Because I can.  If I can inspire one student to believe they can do something they thought they “couldn’t” … Then I can be a satisfied teacher person.  I know I’ve been talking about my big dream, but really – I’m living my dream.  This dream of changing lives one person at a time.

Inspire. Dream. Inspire. Believe. Inspire. Push. Inspire… Don’t take NO for an answer. 

We had our IEP meeting for Alexander yesterday.  It went amazingly.  Don’t take NO for an answer.

Alexander will continue PT and OT
Alexander will begin the process for developmental therapy and speech therapy services.
We will continue the LONG process of getting a Gait Trainer for Alexander.
We are going to attempt to enroll him in a “daycare” / “playschool” for Alexander a few hours a week.
All of these are really more for the social aspect of his development more than the therapy.  I’m excited that more people will be around to give Alexander stimulation. 

*sigh* relief.  A meeting full of yes’s.  Because, honestly – “no” is not in our vocabulary.  An Obstacle is not the End… but the window into what we really want.

My children deserve everything I can give them.  My students deserve everything I can teach them.  Alexander is showing them why perseverance is so important.  And I’m proud of my baby. 

I’m linking with Shell today

Is there anything you won't take "No" for an answer?

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....

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 ***

STOP WHINING

Stop Whining.

I can’t take it anymore.

If I have to hear one more “woe is me” story about how terrible your life is because you have a child with special needs, I am going to smack you. Or Facebook defriend you (which is like the same thing.) Or just stop talking to you. Because – it not only makes me sick to my stomach, but it is really starting to piss me off.

Stop Whining.

No one feels sorry for you. Because they shouldn’t.  You know what?
Everyday – you wake up and get dressed.  You have a conversation with other people.  You walk around.  You eat your meal.  You don’t have seizures.  You don’t have special needs.
News Flash:  Your CHILD deals with these difficulties.  Your Child.  When I look at Alexander – he smiles.  Doesn’t your child?  And yet, You make references as to how difficult your life is?  Why?  Because you have experienced seizures that last for hours?  Why?  Because you have been poked and prodded and stuck repeatedly – because you have tiny veins? No. These things happen to your child. Where is the sympathy for your child?

I’m just tired.  We all struggle.  Lack of sleep, marital issues, feelings of negligence toward our other children.  We all understand.  We all want to support each other.  There are times when all parents have down moments. There are times when all parents need to vent, share, and express our worries.  But – your worries seem less about your child, and more about you.

I have friends, in real life and on the internet who live my greatest fear, and pity themselves less than you do.
 
I can no longer be friends with people who continue to pity themselves for struggles their children face. 
When a child is living, smiling, hugging, … begging for love – and all I hear is how tough your life is … I’m just frustrated.  Try giving your child a break.  Try empathizing with your child.  Try asking for prayers for your child.  Try not to ask, “why me?”  There are lots of people who would love to be where you are.  With a child who just loves unconditionally. And, frankly – I can’t take the whining anymore.

*Exception… Parents who just receive life altering news.  You are entitled to grieve in any way you know how… for the loss of your dreams, etc.  Having a child with special needs can be a lot to absorb… Everyone understands if it takes you some time to adjust to the news.

Ok. Go ahead. Let me have it. I know this is probably the most … aggressive …. post I’ve written. You can feel free to let me know if you agree or not.

Joking? I can’t believe you just SAID that….

Secret. When I was in high school I helped out with the special Olympics at my school.  I was a senior and … thought I was big stuff.  You know what I said while outside working the special Olympics? “That is so retarded.” True story.  I immediately was mortified.  In my defense, I was 16 and realized my mistake.  My face turned red, I walked away – so embarrassed that I would say something so crass at a function so important. 


I told you that story so you could know that I’m not standing on my perch preaching down to you. I’ve been there.  I’ve said and done and thought a million things I’m not proud of.  But… now –  things are different.   I believe I am hard to talk to.

Lately we’ve been spending a lot of time with friends, family members, and people we don’t talk to on a regular basis.  They aren’t used to spending time with me.  They aren’t used to having conversations with me.  Something is said and I’m offended.  Something is almost said and everyone stops.  Someone is talking to me and they suddenly just trail off….  I’m over sensitive.  The world is not sensitive enough.

I teach about social situations.  I HATE hate.  I try to live tolerance every day.  And you know what?  Other people around me live tolerance also.  I do not associate with bigots.   They don’t make crass statements about women, people of other religions or ethnicities, or just… people in general.  Except. the. helpless.  Why is it ok to make fun of people with special needs? People like my SON.

Oh – here’s a list of the things I’ve heard in the past week or so…


I stopped by a blog I thought would be awesome.  I was reading it and getting ready to comment on how witty she was.  And then – there it was – in print.  The “R” word.  Yup.  “When I run, I look retarded.”  Thanks.  Thanks for putting yourself out there with my SON who has spent every ounce of energy trying to sit up and I pray one day runs.  JERK.
I’ve seen first hand people using physical gaits, hand tics, and non – verbal sounds … (you know what I’m talking about) because they think it is funny.  That might be my SON someday.  JERK.
“That person is going to ride the short bus.”  Guess What?  My SON has a nurse that stays with him every day.  I’m pretty sure he’s going to ride a short bus to school.  JERK.
“That person is special.”  JERK.


*sigh*  That doesn’t even begin to touch on the number of conversations I’ve had where people begin down that path and realize what they are going to say and just …. sort ….. of ….. trail…. off…..

I can’t fix the world. But, women can stand up for themselves.  Minorities can stand up for themselves.  People of different religions can stand up for themselves.  Who will stand up for those who can’t stand up for themselves?

And stepping down from my pedestal – I’m guilty of things too.  How many times do I say, “You almost gave me a heart attack!” What if that person lost a loved one because of a heart attack?  Or, “If I hear that one more time I am going to shoot myself.” (If you are thinking of THIS POST – no worries) … but – honestly – how inappropriate is that statement?   Am I a JERK? 

What are we going to do?  Will there be a day when you can’t say anything without offending someone? 

I guess I’m just trying to wrap my head around this.  I hear it. I hear people say we are to “Politically Correct.” and I can see the validity in their statement. 

But then I hear the jokes.  I see the people making fun of … the person that could be my son. And my heart breaks.  My mommy gut shifts into high gear. I want to scream.  I want to lash out.  I realize I will alienate the other person… they didn’t mean it.  They didn’t mean to hurt my feelings. 
They don’t think about Alexander that way.

Truth…. Weather you like it or not – most of those things apply to Alexander.

What will that person (who thinks it is funny today to stiffen their arms and gait around and make noises that sound like words) do … if someday Alexander uses ALL HIS ENERGY to walk and manages a gait and ALL HIS ENERGY to talk and doesn’t enunciate his words properly.
I will clap. I will be proud.  Tears – proud tears of joy will stream down my face that Alexander is walking and communicating.
Will that other person feel pride? Will they continue to use the same joke?
Or… will people just avoid us because they are so worried they might offend us?

Thoughts?  What gets tossed around that you think should end – once and for all? Do you think I’m too sensitive?  Go ahead – give it to me!

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!

Why it is OK to be THAT mom.

I have a lot of "friends" now on Facebook who have children with Wolf Hirschhorn Syndrome.  Most of us have never met in real life, but we have formed a unique community of moms and dads who support each other.  We ask each other questions and offer answers - which is such an amazing thing.  I mean.... in less than 10 minutes, I can get a list of 30 seizure medicines, all I need to do is ask, "what meds are your children on to control seizures?"  I get the advice of every doctor that every parent of every kid has ever seen.  Of course, this advice is secondhand - and doesn't replace the advice of my own doctor, but it is a great place to start.

There is one area of questioning that I happen to be an "expert" in... it is also the area I should excuse myself from.  Education.

Let's imagine this.  You have a child, who uses a feeding pump.  Suppose that child can walk for short distances but uses a wheel chair regularly.  Maybe this child has a few words, but doesn't yet speak in complete sentences.  You go into school... the first time... for an IEP meeting.  What in the world happens?  What are your expectations?  What "education" should your school provide for your child?  Where should your child be placed?  What will you say?

No matter if you have a child with a severe disability or not, these questions run through your mind.  How intimidating it must be to be the lone parent in a room full of teachers and administrators discussing your child.

As a person on the other side of that table... there are some other things to consider.  If you have enough money for ONE speech therapist, how many hours a week will you devote to one student?  And... what if you have two students that both need services... one knows 4 words and the other needs pronunciation assistance?  In a perfect world, each student would get speech therapy every day.  But, if there are 100 students and 1 therapist... this just isn't possible. *sigh*  See the problems?  There is only so much money in the bucket.  Only so many resources that can be divided out - where do you best place them?  I feel I can talk about this because I know I will some day attend an IEP meeting on the parent side of the table. 

So why this post? A "friend" asked about her son's bus time.  He was on the bus for 1 1/2 hours before and after school.  She thought that was too long on the bus.  To be honest... that is a long time.  I'm trying to picture my son on a bus for 3 hours a day... not our "best educational situation."  We began to discuss what to do about this situation.  She was afraid to be THAT mom. I'm going to tell you all... It is OK to be THAT mom.  I WILL be THAT mom.  Allow me to explain.

Alexander is the hardest working person I know.  Just to sit up for 5 minutes is more work than I work all day.  Everyone gave up on him.  They said he would never blah blah blah.  I won't give up on him. Ever.  I know people who started walking in their late childhood or even teen years.  I will not give up hope that walking will some day happen for my fighter... but it won't happen without therapy. The same goes for eating and talking.  You never know when someone with a "delay" will master a skill.  That is why it is called delay - because the skill is achievable.  Alexander is a fighter.  He demonstrates more courage, effort, and "fight" than I ever could.  But I can fight for him.  In those areas where I can make his life easier, I will.  I will make sure he has therapies - even if I have to fight for it.  I will make sure he is included with other students - even if I have to fight for it.

I will trust my "mommy gut" and fight for all the things I think he needs.  I will be THAT mom.  And it is OK.  It is OK - because who else is going to fight for him?  Who else will stand up for him?

It is OK to be THAT mom.

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.