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.

3 am

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

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

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

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

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

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

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

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

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

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

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

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

My heart doesn’t have room for it.

I’m going to start a “Therapy” fund… ‘Cause they are going to need it.

I’m going to pour my heart out. Ready? I love my life.  Most of the time.

Look at how well Alexander is standing! Can you see that my fingers are not touching him? Only my thumbs and ring fingers.  I wish I could get a picture of him standing somewhere other than the tub… but – what can I say? He likes to stand there.


Anyway, Our life… the good, the bad, the ugly… I don’t mind sharing it.  I hope people will read it, identify with us, offer us hope, and find hope from the resilience of my family.  However… Ray would be just fine with our life being private … kept just to us.  Sometimes I share too much.  This week, for PYHO, I thought I would tell you a purely fictional story.  Because, there is no way 2 – college educated parents of 3 could have so many “mishaps” in one evening.  No way.  We only make great parenting decisions… so please remember that that this post in no way represents the people or opinions of this blog.



Once upon a time there was this family.  For sake of argument, let’s call the dad Ray and the mom Kristen.  And pretend they have twins named… Andrew and Addison.  And, maybe they have another kid named Alexander.  (This will just help us keep the story strait.  No way implying the people in this story are real.)

This family decided to go camping very soon.  They made preparations. 


They had tents.



This family was known for “testing” things before the big event.  In fact, they practiced hunting Easter Eggs before Easter, Dressing up for Halloween, and other events were serious melt downs could occur.  The Daddy decided he and the twins should “practice” camping in the back yard to ensure no “freak outs” happened during our first big trip.



First…. the Daddy set up that small, baby sized tent.  The twins eagerly asked, “Is that our tent?”  Mommy thought, “well… maybe they are going to squeeze into that tiny tent so no one is scared.”






Then…. the Daddy set up the big, family sized tent.  The twins eagerly asked, “Is that our tent?”  Mommy thought, “Probably Ray is just vacuuming out those tents for while he is messing with the camping stuff.” 


When the Daddy came inside, the twins asked, “Daddy – what tent are WE sleeping in tonight?”  At this point, I’m pretty sure Ray was suffering from some concussion or something … because he answered, “You twins are sleeping in the small tent and I am going to sleep in the big tent.”

He wasn’t joking. Seriously. He thought the twins would be sleeping in one tent and we would sleep in the other.  Have I mentioned that in this “hypothetical” story the twins are not yet 3 years old?

The Mommy might have gone a little crazy.  She might have started yelling things about slasher movies and John Walsh and ….. it might have gotten a little out of hand.  In the end – the twins and the Daddy might have decided to sleep in the same big family tent.

 

*Crisis averted*

At this point, the Mommy probably decided to go visit a friend in the hospital.  She probably dropped Alexander off with his grandma and headed down to spend some time with one of her lifelong friends.  She might have gotten home (with Alexander) close to 10pm.  Let’s just say… 9:50.  She turned off the headlights as she pulled in the driveway as to not wake her sleeping family.  Only, when she opened her door… she heard twin giggles and the screams of WWF style body slams.  I’m not going to lie.  If this story were REAL … it was hilarious.  They would shout to each other, “No! Don’t get me!”  Followed by a body slam.  Apparently Ray blew up the air mattress for them and they thought it was like a wrestling ring.  The Mommy couldn’t help but laugh and laugh because they were so cute. 


The Mommy went in to put Alexander to bed and clean a bit in the house.  She couldn’t turn on any of the lights because she was afraid the light would shine into the tent.  So … she cleaned in the dark.  Just as she was putting the finishing touches on the kitchen, she realized she had several soda cans left on the counter.  The Mommy decided to be a “good wife” and throw those cans in the recycling bin outside.  As she crept out the door, she heard the blessed sound of silence.  She smiled at the thought of her sleeping babies.  She carefully placed those cans in the recycling bin and turned to go back inside.

When she realized she had locked herself out of the house.  Completely out.  No jiggling of the door fix.  No hidden key. 

And she realized she would have to go wake her sleeping husband (who…. due to her insistence was sleeping right next to the twins) to help her break back into the house.

*There are no pictures of this …*

I would like to end the story here…. for the sake of the “kids” and anyone else who is reading.  No one needs to know what happened after this – except - the hypothetical couple were happily in love the next morning.

Because I couldn’t resist – here are a few more cute pictures taken today of the real Andrew, Addison, and Andrew … and our beautiful life. (Under the guidance of great parenting.)



So…. have any “fictional” stories that would make you look like Parent of the Year?  Come on… make us all feel better.  Did you suggest letting your twin toddlers sleep alone at a campsite?  Did you wake your entire family at 10:30 because you locked yourself out of the house?  Spill it. 

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!

You did this for us

A quick post:

Read Evan's Story on MSN

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

Thank you....

Miracles Giggle

Want a laugh to brighten your day?  Listen to this one.

Happy Wednesday!  Tune in tomorrow for stories of mishap, ill advice, and parenting!

Letter to Alexander… Explanation

Dear Alexander,
From the moment you were conceived – I loved you.
From the day I saw that double blue line – I loved you. 
From those first kicks – I loved you. 
From the first sign that all might not be well – I loved you. 
Your father and I moved mountains for you. 
We still had yet to meet you – but yet we loved you. 
I can remember the sheer excitement of knowing you would be arriving … and completing our family. 
There was never a moment where I didn’t love you. 
I have been frightened.  I have been scared.  I have wrestled with God over the struggles you might face, but please allow me to be clear on this one point.
 I have always loved you.
I wouldn’t trade you or the blessings you have given us for anything.  When Mommy writes about having a bad day or fighting with the doctors… it is because she is frustrated with those doctors.  Mommy has always been proud of you.
 My love for you has no end. 
There is nothing in this world that would change my love for you.
When mommy writes… please know that each word is filled with a letter of love… specifically for you.

Blogging Exposure - HERE
Personal Confessions - HERE

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!

Conversations with 2 year olds

While playing catch in the back yard....

Some things never change

Ray, "Andrew, go grab that baseball out of the bush."
Andrew, "No! The Big Bad Wolf is in there."
Where in the WORLD do they get this stuff?  We don't even own that book!

I'm trying to teach the kids their last names
Me, "Andrew, what is your last name?"
Andrew, "I don't know."
Me, "What does Mommy say when you are in trouble? ... Andrew .......what?"
Andrew, "Go get in the corner!"
Um ... yes - but not quite the answer I was looking for.

The kids are still not interested in pooping on the potty.  We went out to eat - I look down and Andrew had crawled under the table.
Me, "Andrew - What are you doing down there?"
Andrew, "I pooping.   McDonald's no have a potty.  I poop here 'cause McDonald's no have a potty."
Me, "Andrew, I think McDonald's has a potty."
Andrew, "No Mommy. I just poop here."
Ok.  I'm giving you extra credit for creativity here.  Good use of reasoning to get out of bathroom duty.

The twins... 2 summers ago. (or Addison yesterday)

One morning Addison walked out of her room, looked at me, and said:
Addison, "Who are you and what are you doing in my house?"
Um... Remember me? I gave you life.  I also pay the bills around here, so I think I'll stay.

Truthfully... Addison says a TON of funny things - I'm going to have to start a journal so I can post them later. 

Ok. No LIE.  - as I type this post -
Andrew and Addison are telling each other if they don't do something - they are getting a BIG REMINDER.  (Let's just say this is a punishment for when they are really bad.) I'm sitting here cracking up.

What funny things do your kids say?  I can use a good "my toddler says" laugh.

It might not be perfect, but it is real

Ray took this picture yesterday.  All of the kids are battling some sort of cold.  Alexander has it the worst - poor baby.  The twins get a little grumpy and their noses run.  Alexander.... needs fluids and you just want to wrap your arms around him and kiss it all away.  Anyway - yesterday afternoon I decided to kiss his boo boos away.  We ended up taking a nap on the couch together and my sweet husband snapped this picture.  I wish I was smiling - because trust me, my heart was content.
It might not be the perfect picture - one of those posed shots where everyone is smiling and every hair is in place, but it is real.

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.

A letter to God

Dear Lord,

Thank you.  Thank you for blessing us with Alexander.  Thank you for placing him in our care.  Life is so much richer now.

I know it sounds cliché, but the grass is greener.  Before Alexander, I did not know what LIVING was.   I was consumed with insignificant things.  I would have died without ever actually celebrating life.

Thank you for helping me to slow down.  Thank you for showing me patience in the smallest of blessings.  I can now say that I appreciate every moment with my children.  I love the sounds of twin giggles in the morning.  I stop and soak up every bit of laughter. 

Thank you for showing me that success is not measured in how many achievements you make.  Thank you for teaching me how to love through struggles.  One small baby ~ so many life lessons.

As I walk tonight, I think of the blessings that have come with this past year.  I feel the breeze blow through my hair.  I smile. I can’t stop smiling.  I see the children playing in their yard, couples weeding a garden, flowers blooming by a mailbox.  I pay attention.  Life is here.  I have walked this path a million times and not paid attention.  I was in a hurry – to finish the walk.  

Thank you for entrusting to my care this baby boy.  He has shown me that although the road may be long and windy, if I slow down, it can be a beautiful journey.   

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.

The Best Mother's Day Ever.

Yesterday was the best mother's day ever.  I woke up happy.  Truly happy.  My best friend (in her pregnant glory) was sleeping on the couch, the twins were chattering away, and my sweet baby was a year old.
 
We woke and got ready for church.  Yesterday was my "presentation" for our church.  I'm in the middle of editing the video of it - so hopefully I can get it up later today.

During the service - I looked out.  My childhood friends were in the pews.  My childhood "second mother" who babysat me and instilled great values in me sat in a back pew.  The "second mother" to my children - their own babysitter sat with her family in a pew toward the front.  Our friends and family were there to support us.  We are beyond blessed by the amount of support we receive.

But a mini miracle happened last night.  I wish I had my camera with me to capture this moment... but I didn't.  I wish I had a video camera to show everyone what Alexander did... but I didn't.

Instead I have this silly photo.

Yes, you are looking at the picture of a banana.  Because the part of the banana that is missing Alexander ate.  ATE. not mashed up. I cut it into quarters by length.  And he ATE EACH PIECE.  He chewed the pieces up and swallowed them.  What a wonderful end to a beautiful day.

I had one more surprise when I went to go back to bed.  On my pillow Ray had placed this essay.  I like this one a million times better than the Welcome to Holland essay.  Not only was it a beautiful essay to read on Mother's Day ~ it was such a kind gesture from my husband.  Sometimes I think it is easy for us to feel overlooked. (Isn't that what Mother's day is really all about anyway?)

 

It was the perfect gift for Mother's day... Acknowledgement. 

 Here is a copy of the essay:

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."



A beautiful # 1

Yesterday we celebrated the birth of a miracle. In grand style, with only 100 or 150 of our closest friends and family. (tongue in cheek).  It was the size of a small wedding… but it was perfect. You see, when you have thousands of people who pray for you and encourage you, 150 people isn’t really all that many.
We rented a pavilion at a local park.  The weather was perfect.  Our parents helped with the food. My father – in – law made  this incredible pork bbq.  My aunt made a cake or him. And it was perfect.  Everywhere you looked there were kids running around, laughing and playing.  On a whim, we bought play dough to put out on the tables with the “little kid” party favors.  We have some really creative teenagers!  The play dough was a huge hit while people were waiting for food or sitting around talking.  And there were these pods of people talking.  I looked over, and my aunts from my dad’s side of the family were catching up with my aunts from my mom’s side of the family.  In a corner, sat several uncles chatting about life.  Friends from all walks of life mingled and caught up with old and new acquaintances. 
If I could use one word to describe our celebration, it would be love.  I’m not sure how it felt from the outside looking in, but for our family – it was a day of love. 
The entire day had a flood of emotions.  The beginning of the day was very emotional for me; you can read about that here.  But, those moments were fleeting.  We started the day by helping the twins to understand that even tough today (as many days are) was “Alexander’s special day,”  - it was also a special day for them.  When I was shopping for our party supplies, I stumbled into a party store on their final day of business. SCORE! I found 2 firemen outfits that I squirreled away for this very morning.  We called it, “I’m a big brother” and “I’m a big sister” day.  So, first thing – they opened their I’m a big brother / I’m a big sister gifts.  They were a hit!

Yes… Fireman Sam and his partner, Elvis were in our house yesterday.

Here are some of the pictures everyone has been waiting for… Party pictures!
We has several offers from friends to custom make Alexander’s Birthday shirt, but in the end … things were too crazy the last few weeks for me to really focus on it.  So we had these instead…. and they were perfect.

My aunt made Alexander’s Birthday cake.  It looked like a large version of his invitation.  She even included the words to the song, “You are my Sunshine” on the side of the cake. Then Alexander had his own version of the Sun as his personal cake.  My camera died on Friday, so if you have any pictures of the party – e-mail me some good ones!  Here are some of my favorites.

I sat down with Alexander.  I did help him to get started with the taste of the cake.  Every mother that has walked this WHS journey before me helped me prepare for today.  One of the things I was prepared for was the “not eating” of the cake.  Alexander has limited oral desires. He has no teeth yet. He does not put food into his mouth yet. He has some sensory motor issues.  …. 

Guess what. He Defies all odds. 

There are times I am still surprised.

By my little guy.  

Happy Birthday … You are our blessing.