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.

Swimming in Sunshine

While walking this morning, I saw a man on a bike.  It struck me... because the bike was old fashioned - without the extra "speeds."  It also struck me because ... from my vantage point, that man looked carefree.

• I want to ride a bike.  With no hands.
• I want to swim in an ocean of clear blue water. And lay my head back on a pillow of soft waves.
• I want to wiggle my toes in the sand.
• I want to taste snowflakes on my tongue as I spin around in a circle.
• I want to sled down a hill.  With no hands.
• I want to ride in the back of a pick up truck on a bumpy dirt road.
• I want to take a nap on the green grass.
• I want to feel the raindrops on my eyelashes and know they are not tears.
• I want to belly flop from a high low diving board.
• I want to spend an hour looking at purses and shoes.  Without guilt.

I want to unfurl the ball of stress from my shoulders. 

I miss the simple pleasures of my childhood. 

I'm in love with my life now, but there are these times when I long for some youthful daydreams.

Today is one of those days.  I'm going to jot down my selfish daydreams and come back to them another day.  Today, I will go home and be mom, wife, co-worker, and friend. 

Today - I'm going to give myself permission to smile in remembrance of my youth and embrace the responsibilities of today.

Is there something you "want" to do?

A Time for Everything

A time for everything: Ecclesiastes 3: 1-8

1 To every thing there is a season, and a time to every purpose under heaven:
2 a time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
3 a time to kill, and a time to heal; a time to break down, and a time to build up;
4 a time to weep, and a time to laugh; a time to mourn, and a time to dance;
5 a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
6 a time to get, and a time to lose; a time to keep and a time to cast away;
7 a time to rend, and a time to sew; a time to keep silence, and a time to speak;
8 a time to love, and a time to hate; a time of war, and a time of peace.


I love this passage, but if you are of my generation – truth be told – you probably picture Kevin Bacon with a bible in his hand speaking passionately about “a time to Dance” in the movie Footloose. 

For us, the time is not about dancing, but about preparing.  That is what I feel like we are doing right now.  We are in preparation mode….

Fall is my favorite season.  The leaves all start to change colors and the air becomes just a bit more crisp.

Many people see fall as merely a time to prepare for the holiday season.  I love fall… I love the scents, activities, and fun that Fall says.


Time to Prepare…. for pumpkin patches and scarecrows. 
 
I was looking for pictures from last year’s pumpkin picking adventure… and I couldn’t find any.  Then I remembered – it was because we got the mini-van stuck in the mud in a pick-your-own Pumpkin Patch and had to call my dad to come tow us out.  I wish I had pictures of that to share.

Fall means Friday night lights (the real ones… not the show.)  They mean lazy Saturday and Sunday afternoons as West Virginia Mountaineers and Penn State reign on the TV and the Stealers vs. the Ravens war continues.  I told you Ray and I were opposite in every single way. 

Time to prepare for Football Season.  Everyone has a jersey… (or several).  Allegiances are formed. And broken – based on who has more chocolate.

                      

Fall means getting ready for school. For all of us.  The twins are going this year - it is only a few hours a week… but it is structure.  It is time away from their beloved sitter.  It is time to interact with other kids.  In Preparation for big kid school.  A big step.  Back packs are filled with a few treasures.  Outfits are picked out for the first day.  And on this day we head in to meet their teachers.  (Monday is their first official day.)  The school is actually located at the high school where I teach.  The class is run by students and the Family Consumer Science teacher.  I’m so excited for them.  They are so excited.  They actually called me back to their room tonight after about 1 hour of “bedtime sleep.”  They told me they were done sleeping and ready to go meet their new friends at Playschool.

A time to prepare for that step into school.

Did I mention that their babysitter dresses them?  Seriously – how amazing is she? 

There are things Ray and I used to do.  Fall camping trips.  When the fire burns just hot enough and the air is just cool enough to make you appreciate a great sleeping bag.  As you can see below… we are reclaiming our life.  A time to prepare for camping.  For smores, roasted hot dogs, tent slumber parties, and all the excitement that goes with a camping trip.

Love this picture.  As for now – Alexander is not camping with us.  But the twins really want him to go – and I think Ray does to… so we shall see. At some point, Alexander will go camping with us.

A time to prepare for the celebration of Twin Birth.  33 weeks.  It scares me when I think of babies born at 33 weeks.  21 days in the NICU.  And perfectly healthy –almost 3 year olds.

These pictures were taken before they were placed in incubators.  Those are preemie diapers hanging off their little tushies.  Fun Fact – I have never given birth to a baby that weighs more than 5 lbs.  Addison Leigh – 4lbs 1 oz. (on Right) and Raymond Andrew V – 4lbs 11oz (on left)

One year later – we celebrated in grand style.  A Halloween birthday party and we were the Flintstones. Fun Fact – I made our outfits.  Go Me!

Birthday #2 was a lot more laid back. (I made the cake! – Go me!) But – only our parents were invited as we were still adjusting to our new life.  In case you haven’t heard… this year is a little bit more of a big deal. 

And finally, a time to prepare for Halloween.  When everyone plays dress up.  When we practice saying “trick or treat!”  When everyone stays up past their bedtime and my 3 munchkins will still allow me to coordinate their outfits.  A time for fun. 


And this year… preparing for more fun.  We will be cow “people.”  We have to try on our costumes because sometimes they have to get used to the outfits.  I’m not going to lie… I love fall. 

(Yes… play guns come as part of their outfits. No… I don’t think this is terrible. Yes… I played with them and turned out ok. No… we don’t allow them to point their pretend guns at anyone. Guess that covers our philosophy on playing pretend….)


To every thing there is a season, and a time to every purpose under heaven.
A time to Prepare… for all the fun that Fall has to offer.

What are you most excited about this fall?  Or is fall just a waiting period between summer and winter?

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?

It’s Just a Pipe Dream

I’m going to a writing conference.  BlogHer is partnering with Penguin Publishing and they are sponsoring this writer’s workshop.  I’m thrilled.  I’m petrified.  I’m both…. 

I want to be a teacher.  I want to write.  I want to do both….

I want… wow – I can’t remember when I have so vehemently wanted something so badly.

I want someone to say, “You can do it.”  And… although my friends and supporters cheer me on … I really want to know if a professional thinks I have any shot.

Confession… I have never done anything that I wasn’t good at.  If it was something that I wasn’t going to be able to do well – I just wouldn’t do it. 
I wasn’t going to go.  I was going to dream about going, make some excuse about leaving the kids and Ray, yada yada yada… and not go.  The real reason I wasn’t going to go was – what if they don’t like me?

Then a good friend asked me, “How many signs do you need that you should pursue this dream?”
Five minutes later, another good friend said, “I really think you should take those Letters to your students and write a book…. and my wife loves your blog.”
And finally… 10 minutes before school let out, a few students were reading my latest “letter” and said, “I think you should write a book.”

Huh? Really?

I came home. Talked to Ray before I could talk myself out of it. And paid the registration fee. I’m going.

I feel like the girl who goes to the party alone…. Please let them like me. (Oh wait – I am going alone.)

Maybe it will be amazing. Maybe they will tell me that I have a story people would like to read.  Maybe they will give me a signing bonus and tell me to write.  It is those maybe’s that I am excited for.

Maybe all the spelling, grammar, and writing errors will be pointed out.  Maybe they will tell me I have to commit more time to this blog.  Maybe they will tell me to come back when I’m a little more polished.  It is those maybe’s that I am scared I will hear.

I’m going to draw inspiration from my children.  They are amazing.  They never complain.  They are fearless.

Once again… my babies have inspired me to stretch, go, try.  My blessings overflow.

In my New Normal

I’ve started to follow this blog – Finding My New Normal.  I love how she writes and how open she is about her journey of dealing with her own demons. I had a rough weekend and was really worried writer’s block would keep me from writing anything worthwhile after my Big Post.  It turns out… I just needed a few moments to allow my “new normal” to unfold.

In my “new normal,” my life has some extra worries.  Thankfully, after I blog my fears away… they usually stay away.  My big fear has left. (pretty much.)  The other miracles that were laying on my heart have once again shown their strength and resilience.  One endured open heart surgery at age 4.  And. is. home. Our friends have been sick, battling seizures, and worrying about the consequences of the seizures.  In my “new normal,” these things weigh on my heart and follow me into my dreams.  But as good health returns to the members of our Wolf Hirschhorn family, my fears subside. 

In my “new normal” – those fears that remain… I try to write about in the hopes of blogging them away.  I found myself writing this post yesterday and then walking away from it.  Today was our first day back to school… and several students from last year asked me about Alexander.  I found myself repeating the same mantra I tried to instill in them all last year.  You can let life’s circumstances define you… capture you… bring you down.  Or you can rise above them… live out loud in spite of life’s circumstances … live out loud because of life’s circumstances.
 

As I found myself repeating those positive words all day, I remembered the healing power of the innocence of the young.  I found myself smiling, pushing those fears away, remembering why I love my job.  I knew I needed to come home and re-word this post. 

In my “new normal,” I rage against seizures, wrestle with my weight, worry about the amount of stimulation Alexander will get in a house without the twins, and try to be all things to all people.  In my “new normal,” I am learning that I cannot be all things to all people.  Just today, I forgot to order Alexander’s Prevacid (he is out of refills) and we almost broke his pump.  I was mentally preparing to get up every  1/2 hour to give Alexander his formula manually. (Pump is fixed… no worries there.) But, I am making lists to call the doctor and pharmacist tomorrow.  In my “new normal,” I have to remember to manage my time, find a space for me, be a positive influence for students, and remember that my family is a priority.

In my “new normal,” we celebrate the first back to school with an evening at the park.

He is so stinkin’ proud…. Just look at his face.  That expression says, “I’m cool, Mom.”

We rejoice in new tricks and old treasures found in – just being outside.

In my “new normal,” – we cherish our moments with our friends..

Yes… Andrew has a new girlfriend.  He asks about her almost every day….

In our “new normal,” we still get excited by small milestones that are met.  Alexander… riding in a cart – like a big boy. 

The stress will come.  I may launch myself over desks to answer a phone and feel pure RELIEF when it is not about Alexander.  I may forget to order medicines or schedule doctor’s appointments or even enter a grade.  I could dwell on the fact that I have a new normal… or I could embrace it.  I can chose to live. out. loud.  I can chose to dance in the rain.  I can chose to live the “life” I preach to my students.  I’m choosing it, baby. I’m choosing it.

I actually "cheated."  I wrote this post of my heart on Monday night, but - it is the follow - up to my last week's PYHO.  The post spiked at over 600 reads... I felt I should follow up with the I'm ok... in spite of fears post.