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.


Sara said...

Thanks Cassie. I needed to hear this!

Holli (and Mark) said...

oh Cassie, you have noooo idea how much I needed to read this right now, and I'm sure many other mamas (and daddys) feeling the same way. I feel like there is always something to focus on, work harder to get Alex to the next step and if he doesn't get there, I feel like its because I didn't work hard enough to help him get there, and then I realize I've lost focus on something else we should be working on when in reality, its just plain easy to lose focus on the BIG picture all together. tears streaming in gratitude for your words, and Caleb's amazing triumphs!!!!!

Charmaine said...

Thank you so much for posting this Cassie! A shout out to you too from Nova Scotia! :) Reading your blog is like reading my own diary. My son Emmett is now reaching 4 years of age. He is getting KAFO in the next month, and a wheelchair in the coming year. He just began to walk with assistance this fall. It is fabulous looking at Caleb (and your) accomplishments. I always give Emmett all of the credit. He pushes himself and he climbs the mountain, I am the rope that holds him steady as he goes.
Take care
Love Charmaine and Emmett in NS Canada

Heather said...

Oh Cassie, thank you again for another amazing post! I so relate to everything you wrote!

Haley said...

Thank you so much for so wonderfully writing the the exact thoughts so many of us have had! My Isaiah is 18 months old today and just got measured for his first wheelchair. I am sad and happy at the same time. I am trying to focus on how much it's going to help him and how much he's going to love it but it is still so sad that he even needs it. Thank you!!

Lisa Maksus said...

I am speechless for the right words right now other than thank you... For now

The Dugan's said...

Thanks for that post....such a great reminder!

Amanda said...

Thank you! Thank you! Thank you!
I know everything will happen in time, I know each kid has their own timeline. But knowing and seeing are not the same thing.

We all know how great Caleb is doing, but I forget that to get there you went through all the worry and stress I'm going through! It seems like such a battle some days!

Crying from Ontario!

Mary K., David and James said...

Thank you thank you thank you. Words God needed me to hear today, and I am so grateful for them!

JourneyWithTheCrosiers said...

Great post Cassie. Beautiful words that so many momma's needed to hear. The comments above show that for sure! While we are so unbelievably lucky with Beckett's progress, I sometimes feel worn out just thinking about all that I am watching for. I get caught up in wondering and worrying that I forget to celebrate the joys and obstacles crossed. I hope a new SB mom reads this and finds hope as I know this post would've got me!!
You are certainly doing your part to redefine Spina Bifida!

Kim said...

Beautiful, beautiful post. Thank you... :***)

Carrie said...

Cassie, Thank you - although some of it was hard for me to read because I think Toby may never reach any of those milestones - he will probably never crawl, he still has to sit up with assistance of his hand, I don't think he'll ever really walk, but I do not need stop beating myself up, I probably need to just stop pushing, and let Toby be Toby...still work towards goals, but just let it go and leave it on God's hands.
Thank you,

Selina said...

Beautiful post, Cassie. Man, i wish I coould've seen this when Maddie was 15 months old. She wasn't crawling in any way at all, and I felt like such a failure. Lots of tears back then. It is so reassuring to know we are not alone, it DOES get better, and these things will come in there own time. Thank you for reminding me.

Ray, Star, and Tanner said...

Oh Cassie...what a beautiful, touching post! Tears over here in AZ, because all of what you said hit home for me. I'm one of those mom's that has been struggling, so thank you! I needed this so much right now! I struggle so much between doing therapy and just letting Tanner be a kid and play.
I'm also SO hard on myself.
I'm amazed at your strength and at how far Caleb has come! Bless you both!

krousehouse said...

Thank you so much for writing this. I'm crying, but glad I read instead of skimming.

Joanna said...

Beautiful. Strengthening. Heartfelt. Emotional. Real. Uplifting. You are helping us all enjoy the journey as we climb this mountain together. :) Thank you.

Vesti said...

Thank you Cassie! Even with all we see in Davis, we worry, cry, and pray all the time!! You are so right...there is always something! I needed this today!

Hilary said...

Like the others, "I needed to hear that!" My daughter Hannah is 8 months old with SB and hydro - she is an absolute JOY. I am also a Christian and am so encouraged by your outspoken faith! Heb.11: 1 "Now Faith is the substance of things HOPED FOR the evidence of things not seen." And boy do we hope for a lot of our kiddos. But God is always so faithful. Thank you so much for yoru honesty and your encouragement. What a blessing. What an honor to "meet" you - my new sister in Christ! - Hilary Jabbour

Anonymous said...

Hi Cassie, Matt is already 14 and doing great but your post still brought tears to my eyes because you really verbalized my first few years with him. You really have a gift with words. Thank you! Karin

Jamie said...

Thank you for such an important reminder!

Elisabeth said...

Beautiful post! I am slowly learning, and I am sure will continue to slowly learn, what a delight it is to take the scenic route, enjoying every small success along the way. It is such a blessing to watch the joy in Wesley's eyes as he learns to do something new. He is so proud of himself and so excited to hear us cheering for him.

laura said...

Beautifully said... Thank you Cassie!

Chuck and Heather said...

Can I say that I didn't think that post was long at all? I actually wanted it to continue. You know like when you are sad when a good book ends? Thank you for your encouraging words to us moms (and my husband the dad?) ;-) You definitely do know what we are going through don't you? Still frustrated that Gwen isn't even army crawling or rolling at 16 months BUT she is standing with her braces and a push toy!! It may be a "little" thing to most, but gosh our SB friends sure know how big something like that can be. It was great to see Caleb in all of his stages of development too. Thank you, thank you, thank you for sharing your beautiful and amazing child.

Scasmflops said...

Cassie, you truly are a blessing. I needed this. I try to stay so positive on the outside and in my blog posts but hurt and struggle and cry as you said when I see the others doing it. I stare at Carson's little legs and pray and pray begging the Lord to let them just wiggle... anything. We are right at the age (14 mos.) where all the kids are walking... and we too are still working on sitting, and beginning to army crawl. It is hard and I so greatly appreciate having a friend who has been there and can give such hope. Caleb is a miracle, and a encouragement. THANK YOU! Can't wait till I can hug you both!

Tiffany said...

Cassie, this was such a beautiful entry!! I'm so sorry that I don't read your blog more. Well said and a great reminder to ALL od us SB mommas!! :-)

Ciara said...

Hi there
I am mom to Oisín aged 8 who also has Spina Bifida. We are travelling the same road as you and have two younger boys coming up behind.
Your blog is fantastic. I especially love this post.

fehret said...

Thank you. Thank you. Thank you for writing this! It was exactly what I needed to read at this very moment and you expressed everything that I've been fearing so beautifully. Our lovely little Lourdes is only 4 months old, but every morning I ask, "What can I do? What should we work on today? How can I improve her future ...?" etc. etc.

My first thought was that I inadvertently stumbled upon your blog while searching for information on cute, but comfortable baby hats (okay, shunt camouflage!). Now, I  realize that I landed on your site for a reason (after a terrifying shunt revision last week, the stress has been mounting and the tears have been flowing). But, after reading your words and seeing your beautiful boy(s) - I feel less alone and realize that I need to lighten-up for all our sakes.

Well, God led me where I needed to go today. I feel very blessed now and very grateful to you for sharing your story ... your strength. God bless you and your lovely family.


Jill said...

I keep coming back to this one. As you know, we've had a bit of a rough go lately. The day you posted this was a really low day and I could barely get through this post before I was a sobbing mess. It was just the hug I needed and still need. I should just tape this to my fridge instead of the list of things I'm not doing enough of. ;) Thank you, thank you thank you, from the bottom of my heart. I can't even tell you how much it touched me.

Lynn and Cameron said...

I cant thank you enough for this! Even if I did blub my way through. Its exactly how I feel and it just..well thank you, not much else I can say. Now I need to go cuddle my boy! :)

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