Sunday, January 30, 2011

Spring In January

There is an old saying here: "If you don't like the weather in Texas, then wait 5 minutes, because it's gonna change."
We have had spring-like weather all weekend long.  It has been absolutely gorgeous the past couple of days.  We decided to take advantage of the weather now because it is about to get quite chilly here in Texas.

A nice day = a drive in the Jeep

 I have to say that I am very impressed with this Jeep.  Caleb got it Christmas morning and he has spent many hours driving it and the battery is still going strong. 

Look at that grin.  
He's actually trying to run me over.  Little stinker.

I don't know what Benjamin was doing here but I just love this picture.  He's so cute.  He loves being outside.  If you look closely you can see that he has about an 8 inch strand of drool hanging from his chin.
I wish all of you could know Benjamin.  Caleb tends to get a lot of attention on this blog and it's easy for me to forget to highlight Benjamin from time to time.

He is very much a 2 year old.  He has these lovely tantrums where he stomps his feet really fast, we call it his "Riverdance".  When he gets mad he head-buts me (or the wall, or the floor, or whatever is closest to him).  He can be so rotten and super challenging but he is also my little cuddle-bug.  He loves to sit in my lap.  He is constantly asking me to sit on the couch and read him books.  He talks constantly, with new words every day.  He is very much a momma's boy (so is Caleb).  He is my little helper, if I've got the broom then he wants to sweep too.

Yesterday he "helped" me wash the cars.  Mostly he just played in the water.
He was soaking wet by the time he was done.

I hope all of you had a great weekend too!

(Caleb has his neuropsych evaluation on Friday of this week, it's an all day testing.  It will take 2-3 weeks to get the results.  I'll keep you posted)

Wednesday, January 26, 2011

Taking the scenic route

 I am warning all of you ahead of time that this is long.  I'm asking you to avoid just "skimming" and glancing at the pictures.  Take a few minutes to read.  I think this will mean something to many of you.

I follow a lot of blogs, blogs done by other SB moms (and one dad) from all over the country...and a couple folks in Canada.  A shout out to you gals in Canada!  I love reading about all of these other kids that are living life with Spina Bifida.  I love reading about their many victories.  I pray for them when they are facing surgeries.  I care about all of these kids and their entire families.  Recently I have noticed that many of the moms out there are struggling.  It seems like the moms that have the younger kiddos, under 2 years old, are struggling the most.  It is to you that I am writing.

So many of you are hurting because your baby isn't sitting up yet, isn't crawling, won't roll over, can't stand up, and can't walk.  You are frustrated.  Beat down.  Exhausted.  Sad. 

You feel like you are giving everything you have to help your child reach these milestones, but it's not working.  Or maybe you are beating yourself up because you don't think you are doing enough.
It's your fault.

I remember those days so well.  I cry sometimes when I read your blogs and I hear the pain in your words.  That pain is very familiar to me.

I had several friends that had babies right around the same time Caleb was born.  And I can vividly remember how different he was, even as an infant.  Caleb struggled to keep his head centered, even when he was laying down, he would just look to the right or the left.  He had to work so hard to keep his head straight.
I remember having a play date with some former co-workers and their babies could hold their heads in the center, but Caleb couldn't.  Something so simple.  My son couldn't do it.  I remember leaving that same play date crying.  And honestly I eventually stopped going to play dates altogether.  I didn't want to be reminded of all that was different about Caleb.

So, getting Caleb to hold his head in the center became my priority. 

That was the goal we would work on.

As an infant, Caleb did not move his legs at all.  And I mean no movement.  They just flopped out to the side like a frog.
I saw how other babies would constantly kick their legs and could even stand up a little when held.  Not Caleb.  No movement, no feeling, nothing.  Just sweet little legs that flopped out to the sides.
That became my priority.  I just wanted him to try and use his legs.  That was the new goal.

Next was head control.  I called Caleb "bobble head" because the boy could not hold up his head.  It was just too heavy.
He required so much support.  I just wanted him to be able to hold his head up. 

That became my priority.
 My goal for him.

He was probably 7 months old before he could hold his head steady.
We bought him an excersaucer but he was just too unstable in it so we had to wrap blankets all around him. 
 His PT had to make him a special seat to go in his high chair so that he would have more support when eating.
It felt like we were constantly having to do things, adapt things, to help Caleb.  Things that every other baby could do with such ease, was such a chore for my son.  Everything was a reminder that he was different.

The next priority was rolling over.  I worked and worked with him.  Desperate for him to just roll over.  Begging him too.  Bribing him with toys just out of reach so that he would roll over to get them.  Nothing.  I was convinced that he would never roll over.  While other babies his age were sitting up, crawling, and even baby couldn't even roll over.  Caleb was 10 months old when he rolled over for the first time.  It was to get a teddy bear that was out of reach.  I cried.  Rolling became his means of getting around for a long time.  He would just roll across the living room to get to what he wanted.  He found a way.

And then came the milestone that I thought would absolutely break me. Sitting.  Caleb could not do it.  I did everything the PT told me to do, I worked with him daily.  I prayed and prayed.  I asked family to pray.  I was desperate for him to sit up.  I remember calling my mom and just sobbing because I didn't understand why my one year old son could not sit up on his own.  Caleb was about 15 months old before he could sit up well on his own.

With every milestone reached, there was another one that needed to be worked on.  For every mountain he climbed, there was another one waiting.

Each goal became my priority.

Each mountain became my focus.

I made myself a calendar that listed all the things that his PT wanted me to work on.  I put the list on the fridge as a reminder of what I was supposed to be doing to help Caleb reach his goals...which were really my goals to begin with.  I would highlight the things I worked on for that day.  And I would beat myself up endlessly on the days that I didn't get to everything.  I felt like a failure when I didn't work with him enough.  I carried a heavy burden.  Every day.  Every time I went to the fridge, I saw that list, the things I was supposed to be doing. 

A constant reminder that I wasn't doing enough. 

I wasn't enough.

I think us moms are way to hard on ourselves.  I know I am.  This idea that we have to do it all, be it all, every single day.  I think all moms carry that weight but us moms with special needs kiddos have additional weight to carry.  We have to be caregiver, nurse, advocate, physical therapist, chef, maid, chauffeur, teacher, administrative assistant, mom, and wife.  And that's just naming a few.  We wear a lot of hats.
We have to be experts in UTI's, shunt failure signs, tethered cord symptoms, non-verbal learning disorders, and more. We fight for our kids.  We argue with doctors who think they know more about our child than we do.  We push therapists to get our child the braces and equipment they need. We deal with stares from strangers.

I hear how tired so many of you are.  How sad you are.  You love your child so much and your heart is breaking because he/she isn't walking.  Or sitting up.  Or talking.  Or standing.  Or whatever.  It's always something.  There is always something to work on, a goal to achieve, a milestone to reach.  A mountain to climb.  It's exhausting.

Caleb is 5 1/2 years old now.  I've learned over the years that Caleb does things in his own time.  He works hard and he does as much as his body will allow him to do.  And I've seen him climb many mountains.  I've seen him find a way.  I've seen him succeed.
 I've seen him find joy in mobility.

Something that many people would considered a burden, a hindrance, something that he is "bound" to, means freedom and independence to Caleb.

I've seen him do things we were told he wouldn't be able to do.

I've seen him do things I didn't think he would ever do.  Like crawl on his hands and knees.  He crawled on his belly until he was 3 1/2 years old.  I had all but given up on him ever being able to get his knees up under him.  But he did it, he got stronger, he figured it out.  In his own time.

 I've seen him graduate from HKAFO's to just AFO's.

And I have seen him walk.  I have even seen him run.
I've seen him get stronger and stronger.  I have seen him use legs that he can't feel.
And I have seen him redefine.

I don't have it all together, I still worry, I still beat myself up on occasion.  As Caleb has started school, I have found new things to worry about.  New goals to reach.  But I'm learning to just appreciate all that he is and all that he has accomplished.  My burdens aren't his to carry.  He isn't sad, so why should I be? 

Caleb's a happy kid. He always has been.

Even when he couldn't hold up his head, he was still smiling.

Even when he couldn't sit up on his own, he was having fun rolling all over the place.

It didn't bother him that he crawled on his belly instead of his hands and knees, he still got to where he needed to go.

Getting a wheelchair didn't make him sad.  He loved it. It changed his life and his personality for the better.

So, to all of you moms out there that are just plain tired.  Beat down.  Sad.  Defeated.  Go look at your the precious child God has given you.  We have beautiful, strong, resilient, determined kids.  Our kids have and will achieve great things.  Our kids may never blend in with the crowd, they may always stand out, but they will change this world and the people around them.  They already have.  There is great joy in that.

Don't let yourself drown in the milestones.  Don't let each goal not yet reached consume you. Your little one will climb that mountain, just maybe not as fast as you would like.  So, take the time to enjoy the scenic route up the mountain, and anticipate the beauty and the joy that awaits at the top.

Sunday, January 23, 2011

Sanctity of Life

Every third Sunday in January our church (and many other churches) recognize the day as "Sanctity of Life Sunday".  Today was that day.  I know that I just made a post about Roe v Wade but the subject is still heavy on my heart so I'm going to post about it again.  It wasn't my intention to be judgmental of women who have had an abortion or of those that believe women should have the right to end a pregnancy if they want to.  And I don't approach this subject as someone who has never been in the position to choose.  I know what it's like to be 18 weeks pregnant, in love with the baby growing in me, and then to be told that my son had Spina Bifida and significant Hydrocephalus.  I know what it's like to have a doctor tell me that my baby will not walk, will not have normal intelligence, and may not even survive.  I know what it's like to have that same doctor offer termination multiple times.  I've been there.  Granted the choice was never really there, we never even considered ending the pregnancy.  But I get it.  I get why some parents chose to terminate when they learn that their baby isn't "healthy".  I think it's wrong, but I understand their fear.  Do I think it is easy for these parents to end their pregnancy when they are halfway through it.  Absolutely not.  I'm certain that they are absolutely devastated.  Their hearts are broken, I know because mine was too.  I don't think that most people take a decision like that lightly.  Not even for a second.  I also believe that many choose to terminate because their doctor gave them "doom and gloom" predictions for their baby.  I believe that babies could be saved if more doctors shared the good along with the bad.

I think abortion at any stage of the pregnancy is wrong.  Period.  Life is Life.  And all life has value.  I can't as Christian believe any different.  I don't think it is the woman's right to choose.  She didn't make that baby.  God did.  That is His creation.  He is knitting that baby together.  We have no right to destroy that life, for any reason.  I know that's not the politically correct way to think these days but it's how I feel.  I can't believe for a second that God thinks abortion is acceptable in any circumstance.  My pastor said something that really spoke to me today.  He said that God's word always trumps our opinions.

I know women who have had abortions, most of us probably do.  Some had abortions because they just flat out didn't want a baby, the pregnancy was a mistake so they ended it.  Some had abortions because they truly felt like they had no choice, they didn't want to terminate but people close to them backed them up against a wall.  And many end their pregnancy when they learn that their baby has a birth defect, or a medical condition, or a chromosomal abnormality.  I can't imagine that most women just forget all about it and never think about it again.  I think it hurts for years to come...maybe forever.  Maybe some would make a different choice if they could.  Maybe some wouldn't.

I don't think abortion will ever be made illegal again.  I believe it is here to stay.  Too many people want the right to choose.  Not enough of us speak up in defense of these babies.

53 million babies have been aborted since the passing of Roe v Wade.


Saturday, January 22, 2011

Woo Hoo! New Kitchen Floors!

We have been working on a home improvement project in recent weeks.  We've lived in this house over 7 years now and I wanted new kitchen floors the day we moved in.  I hated the linoleum from day one.  We talked about getting new kitchen floors many times over the years but things kids, other expenses, and just life in general. Other home improvements took priority over my need want for new kitchen floors.

It's not that I have anything against linoleum in general, I just hated mine.  The shine was gone from the floor so it was impossible to keep clean.  It had scratches and cuts all over it.  Well, I finally wore Glenn down and he agreed that we should get new floors!

So we went to the local home improvement store and picked out our new floors...and then we saw how much installation costs...yikes!!  The installation was almost as much as the flooring itself!  So, Glenn decided that he would do the floor himself.  He would be our installer.  I was a little concerned about it but we did tile both of our bathrooms on our own so I figured we could do this too.

Here is our new floor.
The boys had too much fun climbing all over the boxes.
We bought the floor on a Friday afternoon and I thought: "Woo-Hoo, I'm going to have a new floor by Sunday afternoon!"
Um, I was wrong.  Not that easy.

The floors before....
Caleb helping Daddy pull off the trim.  Those headphones really came in handy during this whole process.  All the drilling, sawing, and hammering would have been hard on Caleb without those headphones.

The first planks of the new floor going in.
This project really proved to be a big job for Glenn.  I quickly learned that I was absolutely no help. I didn't have the strength to hammer the boards in place.  Glenn did it all.
Some final touches.

The floors after...

Glenn did an outstanding job.  Poor guy, he did not anticipate how difficult it would be or how long it would take (3- almost 4 weekends).  He ran into so many issues and road blocks.  I heard him say on more than one occasion: "If this doesn't work, I'm going to cry."

Would professional installation have been faster?  
Would they have done a better job.  
Highly unlikely.  
Glenn was absolutely meticulous with everything he did.  The floors are perfect.
I think if he had it to do all over again, he would still install them himself. 
He's so proud of the shiny new floors.
Of course now he is so protective of the new floors, he doesn't want a single scratch on them at all.  I think he would prefer it if no one ever walks on the new floors.
We should just sit and stare at them.  Like a museum or something.

Friday, January 21, 2011

38 years, not an anniversary to celebrate

My last post was a celebration of 9 years of marriage.  
Today's post is about another anniversary, one not worthy of any celebration.
Tomorrow marks 38 years since Roe v Wade, the day abortion was made legal in this country. 

"We joyfully live with a hard and glorious truth: God purposes disability in his creation for his glory and for our good."

In today's post the author discussed abortions due to birth defects or "fetal anomaly".  Here is a list of some of the diagnoses that often result in termination of a baby.  He got this list from the website of a women's center that performs "late abortions" based on "fetal anomaly"

"...we have terminated pregnancies for fetal abnormalities such as 1) Central Nervous System that include: holoprosencephaly, encephalocele, encephalomyelocele, hydrocephalus, Spina Bifida, holorachischisis, Dandy Walker, anencephaly, holoanencephaly, absence of corpus callosum; 2) Cardiac abnormalities that include: Primary Pulmonary Hypertension, Hypolastic left and right ventricle, holoacardius, tetraloy of Fallot, Eisenmenger’s complex, transposition of great vessels; 3) Chromosomal abnormalities that includes a) Common: trisomy 13, 18, 21, b) less common: trisomy 16, short arm and long arm deletions; 4) Skeletal abnormalities: Polydactyly, Achondroplasia, Osteogenesis imperfecta, lethal dwarfism, 5) Kidney abnormalities: Adult and Infantile Polycystic Kidney diseases, Potter’s Syndrome; 6) GI abnormalities: gastroschisis, omphalocele."
You can see that Hydrocephalus and SB are included in that list.  I couldn't find exact statistics but I've heard that 70-90% of babies with SB are terminated.  Never given a chance at life.  Never given a chance at all.  And it's not just SB.  I read this article today that states that 92% of parents terminate their pregnancy when they learn the baby has Down Syndrome. 92%.  And would you believe that babies are terminated because they have a cleft lip!  Breaks my heart.  The fate of these precious babies is determined by their diagnoses.  That's it.  That's all they are. A diagnoses, a disability, a birth defect.

"Disability does that in this culture – individual human beings created for God’s glory cease to be recognized as people, and the sum value of their lives is entirely defined by their disability. So, we eliminate a disability, not a person. But every one of those listed ‘procedures’ was done on a child, cruelly in the name of ‘compassion’ to prevent suffering in the child or the mother."

"Disability is hard; I certainly understand that. But we should not wrap what is happening to our unborn children with disabilities in the pretty language of compassion, either for them or for their mothers. Once again, the strong are making permanent decisions about the interests of the weak. And the weak are being destroyed."
 I just don't understand how we got to a place and time where this is acceptable.  Where this is a woman's right?  How did this happen?  Our culture, this world, is so messed up.  The hypocrisy is astounding.  Heaven forbid if we cut down a tree, or refuse to recycle but it is perfectly fine to end the life of a baby.

I'm sorry, I know I am on a rant right now but this upsets me so much.  It upsets me that doctors tell woman awful, terrifying things about their baby and then push them toward abortion.  We were told horrible things when we found out Caleb had SB, and we were "offered" termination at least 4 times.  I remember the doctor being shocked that we had no intention of aborting.  But many, many woman do terminate because of SB, or Down Syndrome, or cleft lip, or even because they just don't want a baby healthy or not.  Millions and millions of babies gone.

Here is the child that was supposed to be "mentally handicapped and severely disabled".  Um, I don't think so.  He is a beautiful, perfect, smart, sweet, funny 5 1/2 year old boy.  His name is Caleb.  He is the way God intended Him to be, because God does not make mistakes.  People do.  And even if Caleb turned out to be what the doctor predicted...does that mean he doesn't deserve life?

I don't mean any of this to be hurtful to someone who has had an abortion.  My heart breaks for the women who made that choice or felt like they had to make that choice.

I hate that so many women make the decision to terminate because of SB, likely because their doctor has told them horrible things, false things.  Is having a child with SB easy.  No.  But neither is having a child with no medical issues at all.

That's why this "Redefining Spina Bifida" movement (and it is a movement) is so important.  We can change the way people see SB and the people that live with it.  Go to the site to buy t-shirts, hoodies, tote bags, and more.  I tend to focus on SB because that is so very close to my heart, but ALL life has value.  Everyone has a right to life.  Period.  We have to start defending these babies that can't defend themselves.

On another note, I have decided NOT to make this blog private.  At least not now.  I hate the thought that a parent expecting a child with SB might miss out on seeing this blog, seeing how wonderful Caleb is, because I decided to go private.  I wish I knew about blogs like mine when I was pregnant with Caleb.  It would have made a world of difference.

Wednesday, January 12, 2011

Celebrating 9 Years of Marital Bliss :)

9 years ago today, Glenn and I became husband and wife.  I can not believe it has been 9 years already. Time flies, right?
So, to celebrate our anniversary I thought I would take all of you on a trip down memory lane.  
I found some photos from our "early years", when we were:
Glenn and Cassie-"Super cute couple" 
Glenn and Cassie-"Super cute newlyweds".  
Before kids.
Before we became "mommy" and "daddy".

I apologize in advance for the poor quality of some photos, I had to scan a few of them in.

Glenn and I met on January 8, 1999.  He was 18 and I was, ahem...21.  I know, I know, robbing the cradle and all that!  He worked with a friend of mine and she invited him to go out with a few of us one night...and truly the rest is history.
This was taken at a Sorority Formal in the Fall of 1999.  We had been dating for about 9 months at this point.  I couldn't find too many pictures of us when we first started dating, which is fine with me, because I was about 45 pounds heavier than I am now.  You've heard of the "Freshmen 15"...well I gained the "Sophomore 45!"  Anyway, that's a story for another time.

This was our engagement picture.  What do you think about those matching sweaters?  Sweet, right?  We still have those sweaters!  Look how cute we are, and so YOUNG!!

A couple of pictures from the big day!

Ah, so sweet.

This picture cracks me up.  This was from our first Christmas as a married couple and we bought each other new tennis shoes!!  And then we took a picture of our feet in the new shoes!  Are we dorks or what?

This was also from our first Christmas, in our teeny tiny apartment.  This pictures was taken right before we went to Glenn's college graduation ceremony.

I call this photo: Rapunzel meets Feria.  Good grief, I don't remember my hair being that long...and that blonde!  That was when Feria Hair Color and I had a very close relationship.
This was taken on our 1st anniversary at this really sweet Bed and Breakfast.

This was taken at the same B and B.  Glenn had set the timer on the camera so we could get a photo together...and you can see that he didn't quite make it to the chair in time.
This was taken on a Newly Married Couples camping trip with our church.
I used to wear that hat all the time, Glenn bought it for me when we were dating.  I still have it.

Christmas 2004
This was the day we told family that we were expected our first baby.  Sweet, sweet memories from that Christmas.

We are almost "mommy" and "daddy" in this picture.  I think I was about 6 months pregnant with Caleb in this picture.

God certainly blessed me with a wonderful husband and 9 wonderful years of marriage.  It hasn't always been easy.  It hasn't always been fun.  We've been thrown some pretty big curve balls in the last few years.  We've had our share of valleys but we've also climbed a few mountains.

I can think of no one else I would rather share this journey with.

Happy 9th Anniversary honey!
I love you bunches.

Monday, January 10, 2011

80's band tribute

I can determine how well Caleb slept the night before by how his hair looks in the morning.  The messier the hair, the better he slept.  It's a fact. We have an ongoing joke in our house when it comes to Caleb's bed head.  When it is especially crazy we say: "Flock of Seagulls!"
Now, some of you young whipper snappers probably won't recognize this 80's band.  Hair was a BIG deal in the 80's and I mean BIG.

Here is Caleb's version of the "Flock of Seagulls" hairstyle.
I think it might make a comeback.  What do you think? Caleb could be the one to bring this rockin' hairstyle back into style.  It's retro baby!

Seeing Caleb's hair this morning was such a great way to start my Monday.  I know it sounds so silly but it's these little, silly moments that bring me such joy.  Our kids are such a blessing and they truly enrich our lives.  Sometimes I need to be reminded of that. Like when Benjamin is screaming at the top of his lungs because Caleb is LOOKING at him!  Or when Caleb is sassing me because I tell him it is time to turn off the Wii.  Or when the boys are wrestling and Benjamin falls, slamming his chin into Caleb's forehead causing him to bite into his own tongue and leaving a nice goose-egg on Caleb's forehead (yes, that happened this weekend).

But this morning Caleb wakes up sportin' his 80's band hairdo and all is well in the world.

Tuesday, January 04, 2011

Spittin' Image of his daddy

So I ran across this old photo of Glenn today.  If it wasn't so clearly an old photo I would have thought it was a picture of Benjamin.
Tell me that you see the resemblance?  Seriously.  Benjamin looks just like his daddy!
Too funny. 
Finding this picture made my day!

Next, I want to run something by all of you, my faithful readers.  I am considering making this blog private.  I have pondered the idea in recent months, mostly since Caleb started Kindergarten.  He is getting older, and while I don't think it would bother him now, there is a day coming when he might not like having his entire life written out on a blog!  I like to be honest about SB: the good, the bad, and the ugly, but I don't want to embarrass him with something that I write about.  I could leave the blog public and just never write about anything that could potentially be viewed as "personal" but I know the vast majority of you come to this blog because Caleb has SB. You have a child with SB so you like to read about another child with SB.  If I go private, those of you that want to can continue to come to the blog, you'll just have to be approved by me first.  The blog would be blocked to anyone not approved.  I'm still not sure what I am going to do.  I'm open to any thoughts or opinions any of you might have.

Also, I wanted to say "thanks" to the few of you that stopped by my new blog.  It was nice to see a couple of familiar faces there.
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