"Faint-heart, what got into you?"

I barely slept last night.  The last two days, my eyes have been poofy, welling up with tears while I fight to hold it in.  I've felt beaten, overwhelmed, and very alone...

We received more diagnoses about Carson this week.  We found that he has scoliosis (curving of the spine) and a hip deformity that is common with cerebral palsy, and can lead to hip dysplasia (hip slipping out of the socket).  Both are "mild" at this point so we are not being referred to a Orthopedic specialist yet... yet... yet, not the most encouraging word sometimes.  There is nothing that can be done to fix what has occurred in his body... and nothing that can be done to "stop" it at this point... we are in yet another 'watch and wait' mode.  My heart and mind could not take in and process this new information well this week.  On top of this new information - we are struggling with making some major changes to his physical therapy program and are having to work through some other major issues which are difficult in themselves.

Its funny (figuratively speaking) how after a major 'valley' in my walk as a special needs mommy, I sometimes feel my faith so strong, that I am like Peter who says, "call me to come to you on the water."  I boldly step out of the boat, and walk towards the the Lord, even on top of rocky and crashing waves.  Then other times, such as this week, I find myself being distracted by the crashing waves, the darkness, the wind, the cold water - and I begin to sink and drown.  I struggle for awhile, going under the water, being crushed and tossed around by the waves and finally I see a small, blurry image of the Lord, standing on top of the water.  I finally say, with water spewing from my mouth, "Master, save me!"

And what does He do?  He doesn't hesitate. He reaches down and grabs my hand. Then He says, "Faint-heart, what got into you?"

Matthew 14:28-33 seems to be a picture of me... bold, courageous, then scared, overwhelmed and faint-hearted, leading to my crying out and being saved once again by my Protector.

What stands out to me when reading this passage is that God saves me, oh wait, Peter, by reaching out and pulling him up... he DOESN'T save him by stopping the storm and calming the waves (that doesn't happen until they are safely back in the boat).  So this week as I cry out, I realize that God pulls me out of the waves and the freezing waters, He doesn't stop the storm.  Jesus, thank you for not hesitating.  And thank you for the constant reminder of asking "Faint-heart, what got into you?"

Are you faint-hearted?  Do you need to call out to Him to save you without hesitation?

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Meanwhile, the boat was far out to sea when the wind came up against them and they were battered by the waves. At about four o'clock in the morning, Jesus came toward them walking on the water. They were scared out of their wits. "A ghost!" they said, crying out in terror.

But Jesus was quick to comfort them. "Courage, it's me. Don't be afraid."

Peter, suddenly bold, said, "Master, if it's really you, call me to come to you on the water."

He said, "Come ahead."

Jumping out of the boat, Peter walked on the water to Jesus. But when he looked down at the waves churning beneath his feet, he lost his nerve and started to sink. He cried, "Master, save me!"

Jesus didn't hesitate. He reached down and grabbed his hand. Then he said, "Faint-heart, what got into you?"

The two of them climbed into the boat, and the wind died down. The disciples in the boat, having watched the whole thing, worshiped Jesus, saying, "This is it! You are God's Son for sure!"

"Here is a baby with eyes of blue, straight from heaven, right to you." ~ Mr. Stork

I've been watching a lot of cartoon movies over the last 2 1/2 years..... one of the perks of having a toddler!

Recently I've watched two movies from the 40's and 60's that deal with a child that is different.... Rudolph the Red Nosed Reindeer (Adrianna's current favorite) and Dumbo both depict a sweet, innocent child that is "different".  Its been strange what emotions have brewed up from watching these movies.  A few specific things have stuck out in my mind....


#1. The children do not know that they are different, until the "adults" in their lives make them feel different.


#2. The parents go through extreme measures to protect their child from the cruelties of this world.  (Sadly in Rudolph, his father actually feeds the cruel measures a bit).


#3. In the end, these children show how truly amazing they are!!!

Its funny how I've watched both of these movies in the past but never truly "felt" anything while watching them... yes, we all feel bad for Dumbo; we all feel a bit sad for Rudolph... but it wasn't until having my precious boy who is "different" that I truly had a heart and an understanding for Dumbo, for Rudolph, and their families.  Its funny how a movie - even ones made out of clay and paint - and produced decades ago - can impact me today.


When I watch the endings of these two movies, and see Dumbo fly high in the sky and show himself to be a true entertainer - and to see Rudolph hitched to Santa's sleigh and lead Santa and the others reindeer - I am excited and hopeful to see what Carson is going to do - to see how God is going to use his "differences" to make a HUGE SPLASH!  Awesome!


And thank you Mr. Stork for saying it so eloquently... "Here is a baby with eyes of blue, straight from heaven, right to you."

Flat Road, Peaks, Valleys and all...

Peaks, valleys, and flat road... we walk them and we live them.  But what about when we seem to walk flat roads and peaks that seem to sit inside a valley?

Recently, well over the last 15 months of my life, it has felt like I've been living in a giant valley... one that has small peaks, flat portions, but are all in a giant valley.

As you may know, all the swelling issues we've had with Carson's shunt seem now resolved (hallelujah!).  AND his infantile spasms have not come back (hallelujah, hallelujah!).  Two very hard issues we were struggling through and now they are both "resolved".  What a relief!  What a blessing!  Two awesome peaks!!!!

A friend asked me, "now do you feel like you can breath?".  I told her yes, but the truth is no.  It seems like when we think things are evening out, that our path may actually be a "flat road", we find ourselves still in the valley... that those flat roads of "normalcy" are just flat roads inside the valley.

Right now we are facing a new challenge, a new low valley point... Carson's head shape is very long, narrow and crooked (many reasons that have contributed to it) but a few months ago, we learned a new big and scary word - Craniosynostosis.  What is Craniosynostosis (other than a word that is very hard to pronounce)? In an infant, the skull is not a solid piece of bone, but several boney plates separated by fibrous sutures. These sutures allow the skull to expand as the brain grows, and will eventually fuse to form a solid skull. Craniosynostosis is a condition in which one or more of these sutures fuse prematurely, causing restricted skull and brain growth.  Carson's particular craniosynostosis is of the sagittal suture.  It is the bone line/suture that runs from the front of the head, to the back.

The most common treatment is surgery performed by a neurosurgeon and craniofacial surgeon. There are three goals in surgery; open up the fused sutures to allow room for normal skull and brain growth, relieve any pressure that may be on the brain, and give the head a more normal appearance.

Because of Carson's VP shunt for his hydrocephalus, the surgeons did not feel Carson's protruding forehead was "bad enough" to warranty surgery (the hydrocephalus causes added surgical concerns).  So we decided to just watch and wait.

Over the last month, we have noted noticeable changes to his head shape, cheek, forehead and ear placement.  We have an appointment with both Neurosurgery and Craniofacial in October.  I am very eager for this appointment!

I am really struggling with this... I feel very low in a valley...

I keep asking myself WHY does this issue feel different then all the others that we've gone through.  I have come to this conclusion: because it's External.  I realize that all of Carson's other issues are internal - inside his brain and body... inside places that we cannot see without fancy EEG machines, MRIs, and CTs.   My sweet husband keeps reminding me that no matter how overwhelmed, sad or antsy I feel - nothing it going to change the situation right now.  He is encouraging me to just breath and release - and then meet with the Doctors in a few weeks and go from there.

So...... in the valley I seem to remain.

But, even in the valley, I also feel like I'm on a huge peak!  Probably the largest peak in this valley... Carson is turning 1 YEAR OLD in 8 days!!!  I cannot believe it!  Where did a year go?  How has it only been a year?  How amazing and awesome is my son?!?!

Wow.  So for now, I am going to enjoy this peak amongst the valley... and praying that someday I'll see the flat road and the peaks outside the valley again.  God is faithful.  God is constant. God seems to continually hold my hand, flat road, peaks, valleys and all.

I look up to the mountains; does my strength come from mountains? No, my strength comes from God, who made heaven, and earth, and mountains.

Psalm 121:1-2

As I sink in despair, my spirit ebbing away, you know how I'm feeling.  Know the danger I'm in, the traps hidden in my path. Look right, look left— there's not a soul who cares what happens!  I'm up against it, with no exit— bereft, left alone. I cry out, God, call out:  'You're my last chance, my only hope for life!' Oh listen, please listen;  I've never been this low. Rescue me from those who are hunting me down; I'm no match for them. Get me out of this dungeon so I can thank you in public. Your people will form a circle around me and you'll bring me showers of blessing!"

Psalm 142:5-7

Who Needs More Strength?

Today I had to ask myself... does Carson need more strength, or do I? 

Carson's physical therapy can be a struggle for me....

Some exercises we do are "simple"... Carson sitting in his bumbo and playing in his exersaucer strengthen his back and neck; sitting on my legs with little holding helps with his strength and his balance; stretching out his left hand that stays fisted. 

Then other exercises, I struggle with.  Right now, some of the things we are concentrating on, is getting him use to bearing weight into his legs (as he does not do that on his own at all) and getting him used to the feeling of crawling and bearing weight into his knees and arms.  Both of these take a lot of strength and perseverance from dear ol' mom.

Carson during tummy time

Today's "work out" was extremely hard for me.... physically and emotionally.  Carson is getting a lot more comfortable working on standing (he leans onto the couch and I keep his knees locked and hips aligned).  But it takes a lot of back strength and arm strength from me to keep him in proper position and because I'm sitting on my knees, trying not to let my legs go to sleep... all the while making sure he is aligned, comfortable and working.  

Carson's first time in front of cart...

Then I decided to have us work on crawling... try having only two arms and doing the following.... supporting his body from underneath him, keeping both his legs under him, locking both elbows on each of his arms to get him to bear weight into them - all the while keeping yourself from falling over.  AND THEN ADD a screaming, very upset baby to the mix.  Once we were done with the "torture" and I picked him up for a cuddle and rest time, I began to sob... all I could say was "Carson, I am so sorry".  I am so sorry that because of injuries to your brain, "simple" things that other babies can do, are such a struggle for him... that the "step" of sitting up, pushing up onto arms while on the tummy, holding head upright for a long period of time while sitting, sitting in the front of a shopping cart, crawling, rolling over, even using his vision for longer periods of time......... all of it is so challenging for him... exhausting.

And how challenging and exhausting is it for me, trying to push him to do these things...... and yet that's my job.... no one else is going to do it..... because of his visual impairment, he is not motivated by sight the way all other babies are.... so what motivates him?  It's my persistence, perseverance, motivation and cheering.... some days like today, I wonder if I have it in me to be that cheerleader, coach and trainer.

So especially after today's session, I had to ask myself.... is it Carson or I that need more strength?  Lord, help us both!

Our "Christian Optimism"

I can't fall asleep tonight... my mind is racing and my heart is aching for some friend's that are suffering through a miscarriage right now.

My mind is racing about how people, *especially* Christians, always seem to have "words of wisdom" to speak during times of hardship, crisis and grief.  Christians are so good, so programmed, to spew their Christianese during the hard times.  I have so many things I want to say to this family, about this horrible situation... so many "Christianly optimistic" things I can say... so many "its in God's hands", "God has a plan", and "there's a reason" phrases I can speak.  But when someone is in the middle of grief, do those phrases really help?  Do those phrases truly give Glory to God when used during those times?  I don't believe they do.

I continually struggle with this idea of "Christian optimism" as I'll call it.... when we always have the upbeat thing to say during times that are low, hard, overwhelming and dark.  Part of me says, "well, we are suppose to give Glory and thanks to God in ALL situations... so if someone is struggling, its our Christian duty to keep things pointed towards the Lord."  The other part of me says that "yes, as Christians, we are called to uplift, encourage, support and love on each other, but trying to be "Christianly optimistic" when someone really just needs an ear to listen to them, or a shoulder to cry on, or just someone to take up their sadness for a bit, trying to "point others to the Lord" through our Christianese, is more about making ourselves feel good, then truly helping the other person".  And that is wrong!   That is not what Jesus did and that is not what we are suppose to do.

Recently someone was telling me about the horrible physical ailments that their friend was suffering with.  They went on and on about all the physical issues and then just "tied it up" with a quick "but God has a plan".  What the hay???  Yes, to God be the Glory that He can and will take all things and use them for His good and His glory... but isn't there a time just to say "man, that sucks"; "that is so hard", "I'm just so sorry" or just to say nothing at all (what a riveting concept for most us Christians).

So.... where is all this leading?  I don't know.  I just know that I am sick and tired of my own, and others, Christianese "word vomit" during hard times.  Can't we just hug our friends, say we are sorry, and pray?  Can we actually stay quiet and just let the person know we love them?  I know that I am just as guilty as my eye-planked sisters and brothers in this area.  I just hope that my personal awareness of this, particularly with everything we've gone through and continue to go through with Carson, will help me be more aware of my need to speak my "Christian optimism" during times when I don't know what to say, and help me to be more silent and prayerful.

Lord - help me.  The one that you love is sick (in my need to spew words), and needs Your help!

Thinking Outside the Light-Box

Today a friend of mine and myself, started a Facebook Page called "Thinking Outside the Light-Box: Vision Therapy Support Group".  Its a page for parents that do Vision Therapy for a child with CVI.  A place where parents can share toy ideas, visual aid and therapy ideas, and ask questions in a place with other parents that "get it".  

If you know anyone that could benefit from this support, please have them look us up on Facebook!!!

Sticks and stones........

Tonight my feelings were hurt.  An old high school acquaintance who I've remained in contact with via Facebook, posted a very insensitive comment on something I posted.

Not only were my feelings hurt, but it just made the realization of future pain, more palpable.  It made me realize that people in our lives - our circle of influence and loved ones - are going to accept Carson for who he is.  They are going to see Carson for everything he is, not just any disabilities or differences he may have.  And yet outside of the security of that circle, there are people who are going to be judging and possibly cruel.  There are going to be people who may call him names, talk down to him, treat him wrongly.  I know that with any child, hurt is going to come.  Pain, sadness and hurt are all apart of this sinful world.  But tonight my heart is heavy for the hurt and pain that will mostly likely come to Carson, because of people's glances, comments, and words used.

I want to wrap my arms around my precious boy and block out the insensitivity, the foolish talk of others. Tonight I am in tears... and just a little angry.  I am going to take some time to give my hurt, my worries, my anger and my tears over to My Father, My Provider and Savior.  Lord, show me how to lovingly protect my son.  Show me how to comfort him when he is sad and hurt.  Show me how to encourage others around me, to be more sensitive and thoughtful.... teach me to be more sensitive and thoughtful.