Not the Woman

I’m not the woman I once was.
That thought keeps gnawing at me.
Chewing at my heart.
Chomping on my self esteem.
Cracking my smiling exterior.

I feel fake.  Faking that former me.
I want to laugh.  I want to say, “Fine!” when everyone asks how I am doing.
I am used to shrugging when people ask me how I do it all.  I have the routine memorized…
Shrug. “You just do.” Smile. “We are very blessed.”
We are very blessed…. that part hasn’t changed. 

Just me. 

I feel like I am clawing my way out.  Nails scraping on the side of the walls.  Refusing to slide down. 

I’ve been unable to do it all myself.  And it sucks. People offer to help… but so often they really don’t know what to do.  I mean… they can’t come and stay up late at night for me.  Take away my mother’s worry.  Replace me at a doctor’s appointment.  Replace my attendance to the twins.  And I don’t want them to do that.

I might have figured out a way to relieve some of the stress.  But, I’ve had to ask for help.  And it sucks.

Not only that – but I’ve had to be very frank about Alexander’s medical needs.  Our familial needs.  When you list them out… WOW – reality check.

I hate to list that list.  Because that list is depression.  That list is pessimism.  That list is darkness. 
And right now – that list is our best chance.  At hope.  At optimism. At light. 

So… I’ve jumped into the well – feet first.  I had to jump.  To save myself.  I had to jump into that dark place.  And … now – I’m clawing out.  Hope by bit of hope.  Until that sunlight shines on my face again.  And I can be that girl I’m pretending to be.

The one who smiles and says, “No worries.”  “We’re amazing.”

Because the truth is – most of the time – we are amazing.  The rest of the time, I don’t dwell on it. 

It’s just that stupid list.  That list of all the things that are not “perfect.” … or even close. 

*Sigh* …

Old Friends, New Books, Painful Stories, and that darn Syndrome

Yesterday was a good day.  Most people who saw me would say, it was a good day.  I actually was really excited to go to a small group discussion on a book.  I was as excited to go spend time with old friends as I was to talk about the book.  So let's start with the old friends.

We all change since high school.  We evolve into these people .. with values, morals, and opinions that set our boundaries help form our personalities.  Most of us hope to evolve into "good" people.   Like the valedictorian who is so humble I forgot she was first in our class. She could have been a doctor or lawyer or nuclear physicist... but is an OT and Photographer and first - a mother... because she pursued her passions in life instead of monetarily motivated ambitions.  Or how about the sweet girl with a big heart who was everyone's friend.  Who decided to take her personal tragedy and find a way to help others? Who started a non-profit organization with no direction at all... except prayerful guidance from God and a mission in her heart?

Although I'm neither of those people... I think I'm evolving to a place where I can be proud of the person I am.  And... I have to say that I'm proud to be friends with those two.  I find inspiration in each of them.  I couldn't wait to spend some time with them and other moms.  So ... I read the book - to go to the meeting. The book....

Heaven is for Real.  First of all... the book is amazing.  Definitely read it.  I'm only going to reveal what is on the back cover - but the book is about Colton's (4 years old) journey to heaven and back.  It is non-fiction.  If someone recommended this book to me under any other circumstances, I would probably laugh them off and stop reading their craziness... but this book is so compelling.  The book is also comforting.  Amazingly comforting.  I left our little group feeling happy with life.  I had lunch with a friend, I spent some time with my dad; Alexander and I globe trotted around without a real care in the world.

Then I came home to write about the 4th of July.  I was going to post pictures of our happiness and describe this incredible feeling that was washing over me daily.  And that is when I saw it - the blog post - on wolfhirschhorn.org.  The story so close to the book I just finished.  The story told by a "I'm content because God loves us" mother.  A missionary who faithfully follows God and does not question.  She wanted to share - so that her son would not be forgotten - the story of her sweet boy.  Even when describing her son's passing, she offers praise to God for not allowing her son to suffer.  She is a person with morals, values, and opinions I could only wish to have.  That peace and comfort comes to me at sometimes... but the selfishness is so much stronger.  The story should have given me peace.  After reading the book, after spending the day with my baby, the story should have made me smile.  Instead... it struck me with such panic I had to leave the house.  I called up an old friend, raced to her house, ran errands, and almost missed dinner because the need for air was so strong.  The panic was so intense - I just needed a minute. 

When I came home, our house was amidst craziness.  The twins were running, shouting the Veggie Tales theme song, and basically in Ray's way.  Alexander was squawking happily ready to be fed.  I ate dinner with my family, I hugged my kids, I hugged Ray, and I blogged pictures of my kids hugging.  I couldn't really explain the emotions that came on this roller coaster ride.  You feel so confident, so sure - that you are ready for the turns and loopty- loops... you let go.  And then, just as quickly, you need to grab hold again.  Sometimes I wonder if the roller coaster will ever be so easy that I can just let go and enjoy the wind in my hair.... but for now - if my posts seem light hearted and then smack back into reality - it is because these posts are a reflection of my life.... usually light hearted and sometimes just smacked back into the reality that darn syndrome can give me.

"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.

Journal before the life lessons

I have a series of life lessons that came from Yesterday.  First, I’m going to write a journal entry of the events of yesterday and tomorrow I can post some of those life lessons.

Yesterday was a day to remember. Or forget, whichever you prefer.

Let’s start at the beginning….  I’ve been struggling.  Struggling with the blog. Is it for me? Is it too depressing? Is it real? Do I really want to be someone who has a bunch of people read my words? If so… do I need to “watch” what I say? *sigh*  I’ve been having a bit of writer’s block because I’m not sure how the blog is coming off. Or maybe it is because I’ve become to aware of how many people are reading it since people have started to hear about Alexander’s need for a seizure dog.  Either way – I have really been struggling with what to say here.

So, then yesterday smacked me right in the face.  Actually – the weekend smacked me in the face.  Here is a rundown.

Alexander’s seizure medicine is in the process of being tweaked.  He has been having these small, barely noticeable seizures.  Ray and I have watched and waited… to see if the medicine would take hold and put these seizures to rest.  The medicine is not the right combination.  This past weekend Alexander had a bunch of mini seizures.  It was becoming an issue that needed to be taken care of.

Yesterday began the chain of phone calls.  I called to discuss with the neurologist what changes to make in his medicine.  I also called the pediatrician about his formula, made arrangements to have his formula picked up, called our lawyer to finalize some legal documents, called the medical supply company to order our supplies, called the pharmacy (who knows us by name…), and made arrangements for the twins to get picked up because I had to rush home after work for Alexander’s PT.  I’m not saying all of this because I want sympathy.  Actually – sympathy is pretty far from what I want from anyone.  Sympathy almost rhymes with PITY and as much as I appreciate people praying for our family, at the same time it makes me sad that we need those prayers.  Yesterday was one of those days when I seriously didn’t know how I was doing it.  Some days are good. Some days are bad.

Some days you have to ask your father to stay over because your youngest son is having another uncontrollable seizure and you have to call 911 again, and he rides in a helicopter again (only this time I couldn’t go with him.), and we go to Hershey again. 

Yesterday I worked to not scare my children when the ambulance came.  I needed to explain why Alexander and I were leaving but they were not allowed to go in their most awesome vehicles.  You know what I told my kids last night as I kissed them goodbye? “Mommy has to go and tell Fireman Sam what to do.  She has a big important job to be the boss of Fireman Sam and I can’t wait to tell you all about it when I get home.”  It sufficed, but this morning Andrew asked me, “Mommy? Can you take care of me? Where am I going today?”

Yesterday was a day of lessons.  Yesterday, I was worried about something so insignificant as a little piece of cyber writing.  Yesterday, I realized that many people worry or become angry over insignificant things.  Yesterday, I just as quickly realized the power of words – to hurt and to encourage.  Yesterday I learned that I’m not a fan of helicopters that don’t let the mother of a little boy ride along.  Yesterday, I was not a fan of seizures.  Yesterday, I thought I just might break. 

Finally, yesterday has past.  Tomorrow I will take Alexander to do a 24-hour seizure watch.  An EEG, video recorder, my baby, and myself will hang out to see what happens.  Tomorrow, I’m going to pray for a seizure so we can get some real information about what is going on with my baby. 

And finally, tonight I just kissed my sweet babe goodnight.