"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.

Welcome to Holland

Today I was talking to my mom about a new friend I have. She has a daughter with brain damage and all that comes along with that.  She has been such an encouragement for me.  It has been so wonderful to have a friend in my life that understands the complexity of a life with a special needs child.  

Yet even with that understanding, I've come to realize that we can never fully understand each other's journey.  We are different people.... with different emotions, different personalities, different families and the ways we were raised.... different priorities, different interests, different minds.  Her child's needs and Carson's needs are not exactly the same.  Our children see a lot of the same therapy departments through early intervention and see some of the same specialists at Children's, but our journeys are not identical.  

We can understand each other and the journeys of being a mom to an extra special kiddo - yet cannot fully understand each others paths.  So how much harder is it, when asked by someone who has never been there, what it is like to have a special needs child........ its hard.  How do you put it all into words???

I've shared this essay on Facebook before... my mind comes back to it often.  I wanted to share it on here as well.  It is an essay written by Emily Perl Kingsley in 1987.  It is titled "Welcome to Holland".  It is the closest thing in my mind, to summarizing what its like to have a special needs child.  I hope you enjoy it.

WELCOME TO HOLLAND

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. 

Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. 

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. 

It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. 

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Guilty for Feeling Burnt Out?

Yesterday I felt very burnt out.  We had a great weekend celebrating Adrianna's 2nd birthday, but by yesterday, I just had enough.  I felt like a bad mom.  Until the evening came around, I did very little therapy play with Carson and didn't play much with Adrianna.   I had a hard time just picking up around the house.  Felt like I was just coping throughout the day.  I felt numb and emotional at the same time.  I had plans to run errands when Kevin got home, but that didn't happen either.

I felt like I needed a separation.  I needed some alone time... even if I was spending my alone time running errands for my home and family, I just needed a break.  Unfortunately last night didn't allow for it.

On top of feeling that need for a break - I felt GUILTY!  I felt guilty for needing a break.  I was almost fearful to speak the word "break" out loud... that it meant I was a bad mother; that it would be taken as I didn't love my children, or didn't love being at home and caring for the family.

I am still struggling with that today - but I did come across a blog post that I follow, that was encouraging to me!  Not sure my internal struggle has ended, but it was just wonderful to hear another mom say it "out loud".  Wanted to share it with you as well!  

Feeling a Little Guilty?

by Emily Coleman on 4/14/2011 11:31:34 AM

Do you like to read? Do you have a favorite hobby? A favorite TV show? Do you like to have a “date night” with your significant other, or a “girls night out” with all your best friends? Every time you indulge in your favorite activity do you happen to feel a little guilty? More than a little guilt? Well, if you answered yes, I can relate.

I think all parents feel some guilt when they do something for themselves and step out of the parenting role. This can be intensified when you have a child with a visual impairment. I spend a lot of time teaching Eddie and simply being his mom and I often think about the goals yet to be accomplished and how much teaching and parenting sits ahead of us. Really thinking about that “to-do” list could surely trigger a full-out panic attack.

There is one way that I avoid these melt-downs. I do something for me. I admit it openly and honestly. I have a few hobbies that I cherish, especially quilting. I love to read for leisure…that’s right…leisure. This means ignoring my dozens of books about parenting, self-help, or tactics for special-needs children. I set that pile aside and break out my latest “book club” read. Yes, I am in a book club, a quilting group, and occasionally enjoy an evening with my friends.

These activities do take up some of my time that could be devoted to my children, but honestly I think that is OK. My aunt, and close confident, once told me openly that her love of quilting also took away time from her children when they were young. She also said, “I was a better mom because of it.” I completely agree with her.

There are days when I am up to my ears in diapers, therapy goals, phone calls, doctor appointments, teacher conferences, etc. and I feel myself becoming overwhelmed. When all I want to do is either cry or take a nap, I know it is crucial to have some “me time”. Anxiety and stress is not easily hidden from children and as I’m sure most of us know, they pick up on it fast. Pretty soon all our emotions are escalating and nobody is happy.

In the interest of my children, I will stop feeling a little guilty. I will enjoy my favorite things and know that one day I can share those hobbies with my kids. I will keep my own identity for myself, for my children, and even my husband. Frankly, sometimes he’s begging me to go to my sewing room. He also understands that to be a good parent, sometimes we have to step back and do something for ourselves.

My beautiful bobbly eyed boy.

Tonight I was exhausted after grocery shopping.... not because of the shopping, but emotionally.

Yesterday we attended my nephew's 11th birthday party.  When we were leaving, one of the kids saw Carson's eyes moving all over (Carson has Nystagmus which is just involuntary eye movement) and said "look at his eyes, how weird" or something to that affect.  I did not hear it or witness it; I was just told about it by a few family members that witnessed it.

I thought about if I had been there, I could have used that time to just explain to the boy that Carson is blind and his eye muscles aren't very strong yet so they bobble around when he is trying to see.  No big deal.  I have had plenty of people ask me why Carson's eyes bobble the way they do.  I actually enjoy the questions and love to be able to talk about our little man.... both as a way to brag about him, but also just to make people aware.

Tonight at Winco, a nice older man came over and asked how old Carson was.  After talking for a couple minutes, Carson's visual impairment and brain injuries came up.  He asked some questions, responded nicely and we went our separate ways.

Later as we were checking out, the very nice checker kept commenting on how he was fighting sleep (he was opening and shutting his eyes trying to doze off).  While his eyes were open, his eyes were really bobbling.  The lady kept trying to make the fighting off sleep comments and scanning our groceries.  She also kept looking at him out of the corner of her eyes.... wanting to see what his eyes were doing but probably feeling too embarrassed to say anything.  I saw her discomfort and her wondering but I said nothing.  Typically I will make a comment that he's blind but tonight, I was just too tired.......

Too tired to go into it, too tired to explain.... and then I was just plain tired that I even have to explain anything sometimes...

Tonight I'm tired....  tomorrow I'm sure I'll be better and feeling positive about answering any and all questions, or dealing with inquisitive or strange glares from people.  But for tonight, I'd like to feel a little self-pity, so thanks for reading  :0)

Thankfully, Carson loves to snuggle!!!  There isn't a place he enjoys more, than resting his head and body on my chest.  After an emotional grocery shopping experience, at least I got to end my day cuddling with my beautiful-bobbly-blue-eyed boy!   :0)

Grieving

Recently, I've had quite a few conversations with different people - on the exact same subject... Grieving.

Now that word has not been the exact word used during these conversations, but thinking back to each conversation, grief was basically what it boiled down to.  Grief is usually associated with the sorrow and emotions of losing a loved one.  But grief can be caused by any loss - loss of a job, loss of a friendship, loss of a dream...

Life with Carson (ie: borage of appointments, worries about his shunt and brain pressure, working with therapists, researching about his disabilities, seeking our resources, etc., etc., etc.) is just the norm.  I don't spend each day focusing his "delays" or constantly worrying about what areas he's behind in or what his future will look like.  Carson is Carson.... loving, cuddly, funny, quirky, sweet.  We spend our days playing with his mirrors and beads, working on tummy time (kinda), mommy giving zerberts, holding him on my chest to put him to sleep, breastfeeding, being slobbered and spit up on, receiving slobbery kisses, changing a bazillion poopy diapers.  Life is life.  Life with Carson, and all that goes along with his needs, is just the norm around our house now.

Yet moments and emotions come from time to time, where the realization of Carson's development delays and issues, kinda hit me out of nowhere... and they hit me hard.  I'll see a video that someone has posted of their child around the same age, laughing and cooing.  I see pictures of babies smiling and making eye contact with the camera.  Seeing kiddos hold up their body strength (assisted of course) on their legs.  Babies that want to face forward.  And sometimes those moments make me realize the reality of where Carson is at... the delays that he has... the unknowns of the future. And at those times, I grieve for what I wanted for Carson; what I wanted for our family.  The dreams that I had.

Thankfully those moments are far and few between.

Just this week, I came across a wonderful blog, written by a mom with a special needs son (one of his disabilities is blindness, which is what brought me to her blog).  I was reading through past entries she made, and one really struck home in regards to what I've been discussing with many recently - grief.  Hope you enjoy it!  Thank you Emily Coleman, for sharing your heart!

Raising a Child Who is Blind and...

"Grieving" By Emily Coleman

As I work my way through school to become a teacher of the visually impaired, which I'm doing now, I keep running into information about "grieving." Most often we think of grieving as the actual death of someone, but we can actually grieve a great many things. Through brainstorming at school, different types of grief were mentioned including grieving a lost job, lost marriage, lost friendship, and even lost dreams.

As a parent of Eddie, that last one "lost dreams" is something that I have to realize and work through on occasion. When we were pregnant with Eddie we had a lot of hopes and dreams for our son and envisioned a future that we didn't know would not come. At least, not exactly as we dreamed. This hasn't been a grieving process that I went through once and now I'm healed. Many times I am thrown back into the realization that our life with Eddie is not "typical." That doesn't mean it is worse, but that it is much different.

Large milestones that are missed tend to bring about the hardest times for me. I grieved when he was 1 1/2 and still not walking, I grieved when he turned 3 and still didn't talk, and most recently I grieved when school started this year and he didn't go to kindergarten with all the other 5 year olds. Children who I watched stretch their Mom's tummy's while Eddie stretched mine walked into that school and I witnessed it because I was taking my 1st grader to school. This was extremely hard and still brings tears at the memory. A prime example of grieving the future that never came, even when I thought that was behind me.

As a note to parents like me, these days are few and far between. I don't always miss those "lost dreams" but now have found new dreams for Eddie. So much focus is placed on bigger milestones for typically developing children, but the small steps are important, too. Many times celebrating the successes of small steps is what keeps us moving forward instead of "grieving" the larger ones.

Thank you Emily!

Coloring and Avoidance and Coping, Oh My!

Coping versus Avoidance... is there a difference?  I think for me, sometimes avoidance IS my coping response to some areas of stress in my life... and I'm not happy with it.

27 weeks, 5 days ~ 7.9.10

The day we found out about Carson's brain injuries, along with a lot of crying and praying, I pulled out one of Adrianna's coloring books and crayons, and started coloring.  I colored for hours that day.  For about two weeks after, I colored in a coloring book, every single day.  I even went out and purchased a jumbo sized box of coloring crayons (the packet of 10 crayons that Adrianna had did not give me enough "range" in my art - haha).  

I often think back to my obsession with coloring.  I realize now, I colored because it was helping me "cope".  The coloring books are filled with pages with defined edges and images - borders and boundaries.  I could color inside the lines, create beautiful color arrays... the way I made the page look, was in my control.  I could color a teddy bear pink and green and a tree orange and purple.  I could take what is "normal and real" (ie: a green and brown tree) and make it different (an orange and purple tree).

During that time, I used coloring to help me cope with the fact that what was "real" in my life, was a baby whose life and health were out of my control.  I colored to help take my mind off of the searing pain, agony and fear that wanted to swallow me hole.  Coloring helped me cope during that time... a healthy alternative to other things I could have done.

Wendy (my bio-mother)

Then, there are times I use "avoidance" to help me cope with stressful situations.  Very recently, I connected with my birth parents.  I was adopted as a newborn.  My biological mother was 16 and my bio dad was 20.  It has been an absolutely surreal experience connecting with them, learning about them and their extended families.  Facebook and letters have been a God-send in getting to know these people that I am DNA related to (until I had Adrianna, I knew no one in my life with the same blood DNA... didn't matter at all with my family, but it was amazing when that realization hit). 

Morris (my bio-father)

Just this last week, my birth father asked to meet me and my family.  Wow.  Kevin asked me what I was thinking about that.  I guess I started in about "oh yeah, I think we'll meet at some point, but right now, things are very chaotic and busy... it'll probably happen at some point down the road.".  My darling husband who knows me so well said, "Um, what does that really mean?".  I had to take some time to think through why I was using such vague wording, in something so major and important.  I realized that by saying these vague words, I was avoiding having to make a decision... a decision so huge, so amazing, yet stressful.  If I used those vague words, I could avoid making a decision, avoid having to let my guard down and begin a relationship that is unknown, out of my control, "unplanned".

After much thought and hashing out my feelings, I realized that YES, I want to take the leap and meet my bio-father and his lovely wife (which will happen end of April I think)  :0)  But I realized, it was such an easy thing for me to "avoid" something stressful (the stress from pursuing something unknown, not the situation or the persons involved).  It seemed that using avoidance-wording came just as naturally to me as coloring.

Here's to continuing to let God teach me to cope with color, instead of hiding behind avoidance and vagueness!

God meets us where we are............

Today I was looking through my "Notes" on Facebook... I came across the one I posted, the night before going in for my c-section to have Carson.  September 28, 2010 was a strange day... one of anticipation that the next morning I was going to finally see my son.  And fear, that it would be the same day I would say goodbye.  Yet in the midst of clashing emotions, God met me where I was at.  God knows our needs even more than we do.... he sees our hearts when even we can be in denial about what our hearts are saying....  Here is the post:
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Tuesday, September 28, 2010

For those of you that read Sarah Young's devotional "Jesus Calling", tomorrow's devotional was written for me I believe.  I decided this evening to turn to September 29th - Carson's Birthday; just hoping that God would speak.  And He of course did.  And this devotional led me to Psalm 139 and I was able to put Carson's name in place.  Praise You Jesus that Carson is Fearfully and Wonderfully made.  Praise you Jesus in advance for the birth and life of my son.
~~~~~~~

6 weeks, 6 days old.... the first photo of our son

September 29, 2010 – Carson’s Birthday

“I am with you and all around you, encircling you in golden rays of light.  I always behold you face-to-face.  Not one of your thoughts escapes My notice.  Because I am infinite, I am able to love you as if you and I were the only ones in the universe.

Walk with Me in intimate love-steps, but do not lose sight of My Majesty.  I desire to be your closest friend, yet I am also your sovereign Lord.  I have created your brain with capacity to know Me as friend and Lord simultaneously.  The human mind is the pinnacle of My creation, but so few use it for its primary purpose – knowing Me.  I communicate continually through My spirit, My word, and My creation.  Only humans are capable of receiving Me and responding to My presence.  You are indeed fearfully and wonderfully made.”     
~Jesus Calling by Sarah Young~

~~~~~~~
Oh yes, you shaped Carson first inside, then out;
you formed him in my womb.
I thank you, High God—you're breathtaking!

Finally in my arms ~ September 29, 2010

Body and soul, Carson is marvelously made!
I worship in adoration—what a creation!
You know Carson inside and out,
you know every bone in his body;
You know exactly how Carson was made, bit by bit,
how he was sculpted from nothing into something.
Like an open book, you watched Carson grow from conception to birth;
all the stages of his life were spread out before you,
The days of Carson’s life all prepared
before he'd even lived one day.

~Psalm 139:13-16 Msg~

10 Reasons to Give Thanks for Your Child with Special Needs

I stole this from Julie Webster's blog.... I changed it up just a "smidge" as some stuff seemed a little too, um, harsh  :0)  Hopefully you'll read this with a little humor and not take it too personal  :0)


1.  You never have to worry about worrying over nothing.  Let other parents obsess over the little stuff. Your child will make sure you always have something to worry about.

2.  Developmental delays = more years of hugs, kisses, and the little-kid sweetness.

3. Maybe someday, Ty Pennington will come build you a house!  Extreme Makeovers: Home Edition loves families of children with special needs.  Your little one may be your ticket to a lavish living space!

4.  Any little milestone is a cause to throw a party.  Your child works so hard for every step, sit-up and syllable, giving you lots to be excited about.

5.  Every day is a learning experience.  Some days it's a pop quiz, some days it's a crash course, but life with your child is always and education.  Since becoming a mommy I've also become a therapist, doctor, nutritionist, transit authority, lawyer...

6.  You have the privilege of putting several doctor's children through college.  Someone once asked me how I had a certain doctor's cell number.  I simply replied "It's one of the perks of paying his mortgage and car payment."

7.  You meet a great group of parents in waiting rooms and support groups  Your child frees you from having to hang out with those snotty parents on the playground, and gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.

8.  You have an iron-clad escape excuse for any occasion.  You'd love to stay at that boring party, crowded event, endless church services, but, you know, your child just can't tolerate it.  It also moves you to the front of the line at Disney!  I overheard a little boy tell his mother "Thank goodness we have her with us!" as they approached the long line.

9.  Coming up with new strategies every day keeps your brain sharp.  They say doing crossword puzzles helps ward off Alzheimer's.  Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection.

10. Your blessings will always be fully counted.  You will never take for granted a gift that your child brings to you.  Not ever.

I found this awesome article written by Terri Mauro (http://specialchildren.about.com) and had to post with a little of my own experiences. Thank you Terri for this great list!

Join the Club

Everyone wants to be part of a circle, a club, the inner sanctum of something.

In 2003, I joined the "Barren Woman" Club.  It was not a club I chose to join.  It was not a club I wanted to be a part of.  The darkness, insecurity, fear, depression that you can tread through as you battle infertility, can be unbearable at times. As you watch friends and family become pregnant and give birth to their amazing children, you can suffer unimaginable sadness - and joyfulness for your loved ones - all at the same time!  What a mixed bag of emotions to carry.  And yet, being a part of that club, God changed my heart, made me look deep inside myself until I was able to say "Lord, I will love you even if you do not give me a child."  Also during that time, I met and shared with many amazing women who were thrust into infertility membership.

Adrianna Lucille ~ April 18, 2009

Then in 2009, I joined the MOMMY club!  What an amazing, wonderful, fantastic club to be a part of.  I know so many women who would give all that they own to be a part of this inner circle.  A club that has been around since, well, Eve.  Talk about the longest running club ever!!!  Getting membership into this club did not come easy for me... and sadly, I know many women who still have not received their "in" yet.  And even sadder, I've met women who have joined the club, then lost their membership through the loss of their child.  A membership that should NEVER be revoked.

But here I am - a bonefide card-carrying (well, maybe better said, "baby weight" carrying) member of the Mommy Club.  I have never felt so welcomed.  I have never felt so connected as I do now.  My children have given me meaning, have given me joy, have filled my heart with so much love - none of which I ever knew as I do now.  What an amazing circle to be a part of!

And now in 2010, I joined another club.  Not one I ever thought I would be a part of.... one in which I thought it could "never happen to me".  One, in which I did not realize how big the circle was.  One, where unless you are given passage into the club, would you ever know the secrets of the inner-sanctum.  I become a parent of a "special needs" child.  A parent of  a kiddo with health issues, developmental issues, a child who isn't "typical" (FYI for those of you that care to know - I am not one that offends easily by "labels" and terms used, but "typical" seems to be the PC way of saying "normal").

Darrell 'Carson' ~ September 29, 2010

There are so many aspects of having a child with special needs, that I never realized.  The emotional, physical, mental, spiritual toll it can have on you.  The worries involved.  The juggling of appointments.  The research and advocacy you need to do.  The medical things you have to learn.  The therapy and special treatment needed. The continual hoops you jump through for your child's sake and your families sake.  Seeing the world through different glasses.

And yet, even with all of the "stuff", there's an advantage to being in a club... it is knowing you are not alone; that there are other mothers out there going through similar things.  A very special mommy club.   I have been so amazingly encouraged and lifted up by moms that have been there and are still there; by moms who understand the struggle, what it means to have victory in the "small things", that can empathize instead of just sympathize.  To all of you mom's of this special club - thank you!  I am blessed by you!  Thank you for understanding me, for encouraging me, for sharing your struggles and your joys with me. 


"Therefore encourage one another and build each other up, just as in fact you are doing."  1 Thessalonians 5:11

A Baby Changes Everything: Carson's Story

I had been feeling so tired!  Kevin recommended I see a doctor if I didn't start feeling better in a few days.  I thought I should probably take a pregnancy test just to rule that out, as I knew the doctor would ask.  I grabbed two pregnancy tests from the Dollar Store and headed to work.  There, in my work's bathroom, on Tuesday, February 9th, were two bright pink lines.  I could not believe it!  Adrianna wasn't even 10 months old yet and we had battled infertility for 5 years.... there was no way we were pregnant, but the pregnancy test told me otherwise.

May 10th - It's a Boy!!!

Skip ahead to May10th, we learned that we were having a BOY!!!!!!!  We were so excited.  A prince to go along with our princess!

Carson was so amazingly strong.  His kicks and movements were so pronounced and powerful.  My tummy grew so quickly with this second pregnancy.  I knew he was going to be a big boy!

July 9th - 27 weeks, 5 days old.

I had gestational diabetes with both pregnancies.  With the GD, they needed to do frequent ultrasounds to follow the growth of our little man.  We went into our second growth scan ultrasound on July 9th expecting to hear that he was huge.  Instead, within minutes of the scan, our ultrasound tech asked if the doctors had told us there was anything strange with our scans.  Our life was forever changed from that moment on...

Sometime between 20 and 27 weeks gestation, an "unexplained event" occurred in Carson's brain.  Through the ultrasound and MRI, they noted numerous bleeds throughout his brain, hydrocephalus (water on the brain), severely damaged/dead brain tissue in a couple areas, and at the time, they believed his cerebellum had stopped growing (cerebellum is in the back of the brain).  It was the most devastating news I had ever received.  It was as though the world collapsed on top of me... there was no where I could run or hide.  There were no tears that I could shed to release the pain in my heart.  I could not understand it.  I could not fathom it.  I was beyond lost. Why Lord did you allow this to happen?

26 weeks along

Physically, the pregnancy itself, other than the gestational diabetes, was pretty uneventful.  Mentally, emotionally and spiritually, it was a daily battle.  Through ultrasound we could see Carson growing bigger and bigger, though the brain injuries remained the same.  During the 2nd half of the pregnancy, we were seeing our OB, high risk OBs, a geneticist, saw a pediatric neurodevelopmentalist, and a neonatologist.  We knew very little about what to expect with Carson.  We were told that he may not live to term.  We were told that if he was born alive and lived - that he could be severely handicapped.  But mostly we were told that he would probably be born alive but not live for very long.

We ran numerous genetic tests to try and diagnose why this happened.  They were certain it was a rare disorder where my body was fighting Carson's blood platelets. But thankfully, they ruled that out.  To this day, even through numerous tests, we still do not know the "why" behind the damage.

I have never poured out my heart to God, the way that I did during my pregnancy.  I have never pleaded, bargained, screamed, cursed, begged to God, the way I did during that time.  Taken from the story of Lazarus, "Lord, the one you love is sick" were words that I uttered many, many times.  Lord, spare the life of my son.  Lord, heal my child.  Lord, give us strength, wisdom and the ability to handle anything that comes.  It was a tough line to walk.... having faith that God could heal my son, but yet facing the reality of Carson's injuries.  I could never put into words, or even try, the emotional whirlwind during that time.  I was led to the story of Angie Smith and her husband, who were pregnant with a beautiful baby girl named Audrey who had a rare disorder.  Audrey only lived a couple hours after she was born.  Angie writes a blog, Bring the Rain, wrote a book and inspired a song that her husband and his group, Selah, sing called "I Will Carry You".  That is where I got the title of this blog from.  That song played on my iPod nearly every night as I fell asleep.

September 29th ~ On way to hospital

Towards the end of my pregnancy, Carson flipped to a breech position.  We chose not to try and flip him because of the trauma that can cause.  We were scheduled for a planned c-section on September 29th.  That day could not have gotten there fast enough, nor could we run any further from that day.  We did not know how to plan for that day.... the excitement and joy of finally meeting our son, the child I had dreamed about my entire life, and the overwhelming fear of what that day could hold for us.  Was I to give birth to my son, just to say goodbye?

Darrell 'Carson' Champine

Wednesday, September 29th at 11:04am, Darrell Carson Champine was born... kicking and screaming!  What a wonderful cry.  What a gorgeous baby.  20.75" long, 9lbs, 4oz of wonderment.  He was immediately checked over by the neonatologist and the NICU team.  He was doing great!!!  9 & 10 on his APGAR, breathing great, good coloring.  I will never forget the doctor coming over to me and telling me that "your son looks great". As he walked out of the OR, he told my mom, "there was no reason for me to be there".  We were elated.  Our son was here, he was gorgeous, he was beautiful.

We had a boat load of visitors at the hospital that day.  So many people who wanted to be there for us - no matter the outcome.  Our beautiful miracle was passed from one person's arms to another; each person just longing to hold the child that we had prayed for.

Grandma & Papa in NICU

Though he did great immediately after birth, Carson spent a week in the NICU.  He had difficulties with his breathing pattern and CO2 levels and battled with jaundice.  But after a week, our amazing doctor, Dr. Knox, felt there was nothing else they could do for him, and felt it was best for us to head home.  Even during that week, they were unsure how long we may have with our son.

Carson is 14 weeks now and is growing and thriving!  He is an amazing eater (he is HUGE!!! 18.5 lbs already), his CO2 levels are perfect, he moves, cries, coos and cuddles - all what a baby his age should do.

Our life now is filled with doctor's appointments, therapy sessions, research, etc..... it is also filled with poopy diapers, midnight feedings, two car seats, and getting to love on two wonderful children.  Each day is different.  Most days we get through the day just fine - loving on my kids, changing diapers, watching Dora, *trying* to work on tummy time. Other days (more like "times"), I feel overwhelmed and helpless; scared.  Carson, my son, I love you. (sorry, I was just looking at him so I had to add that).

So how is he doing physically?

Last week, Carson had a VP shunt put in, as his hydrocephalus began to get worse and pressure began to build in his brain.  His skull has grown very quickly over the last few weeks.  Thankfully the shunt is doing its job!  It appears to be draining fluid properly.  The shunt will be a "forever" issue we and he will have to watch and deal with.  During this first year, we will be facing the possibility of infection.  During the first two years, there is a 40% chance that he will need a revision (surgery) to his shunt due to malfunction.  His entire life, we will have to watch for headaches and others signs that will show us his shunt has malfunctioned.  But even though its another thing to "deal" with, I am so thrilled that we live in a time where shunts are an answer to the hydrocephalus problem!!!!

Carson has cortical visual impairment (CVI) and we are unsure of what he can see, or how much he can see.  Cortical means that his blindness comes from his brain, not from his eye.  Thankfully with CVI, some people have seen improvements with their kiddos through therapy, patience and time!  We are currently working with a well known vision therapist and will be seeing our Opthamologist at Children's for the 2nd time next month.  We have seen some positives lately with respect to his eyesight.  He responds to these silly red glasses I have, and an orange octopus that he got for Christmas. Carson does not look us in the eyes, or track things with his eyes. So to see him respond to something with joy, and with some resemblance of eye contact, is a thrilling achievement to witness!!!  I probably took for granted having Adrianna look at me, look around the world and take it all in.  We have definitely had our moments of sadness and disappointment that he will not be able to "take in the world" like we can.  So here we are - trying to navigate new waters of teaching him about the world through his other senses.  It feels overwhelming and daunting sometimes to take this on, but I love this boy so very much that I am excited to learn new ways to teach him about the "world" through his other senses.

Carson is so strong!  He moves both sides of his body evenly, and moves both his legs and arms which is great!!!!  We have had a couple medical folks tell us that they do see early signs of cerebral palsy and as much as he moves and kicks a lot, his muscle are slightly weaker than an average baby his age.  But as our physical therapist Eilene says, we don't worry about the diagnosis.... we just work with Carson as an individual!  For PT right now, we are working on tummy time (which he HATES with a passion), stretching his neck muscles (he only wants to look towards his left) and stretching his body so he doesn't end up in a "C" shape because of looking left.

Weekly, we meet with Nurse Pam, a Hospice nurse through the Carousel program at Providence.  We have come to love her - such a loving, wonderful, smart woman!  Very excited that this week, Carson moved off of the Hospice program, into the Palliative Care program - meaning that they feel he has a chronic disorder needing close supervision, but is no longer in decline.

We see numerous specialists down at Seattle Children's - Neurodevelopment, NeuroSurgery, Opthamology, Hematology, Audiology.  We have truly loved the care we have received from Children's.  As much as we don't want to *have* to need their services, to live so close to such an awesome hospital is truly a blessing.  I cannot imagine going through all this and living somewhere far away from such great help.

Who is Carson?

Carson is cuddly and loving. He has an amazingly sweet temperament.  He goes with the flow most of the time, but definitely will let you know when he is unhappy (ie: hungry).  Carson's name means "Fort, Rock".  He is definitely a boy with strength!!!!  I have prayed and asked the Lord to give me a life verse for him... but I have only been led to the story of Daniel and the Lion's Den.  I can see Carson already being a lot like Daniel.  A man with strength, who knows who he is in the Lord, strength in who God made him to be and his abilities.  Yet someone who is quiet, still, strong.  Someone whose faith in the Lord will keep them safe and will change the lives of those around him.


I do not know what the "plan and purpose" is for Carson and his life.  But I am so blessed that God chose ME to be his mother.  I am so excited to get a front row seat to see what he is going to do!  I love you Carson.

Selah: I Will Carry You

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who's chosen me
To carry you

Such a short time
Such a long road
All this madness

But I know
That the silence
Has brought me to His voice
And He says

I've shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who's chosen Me
To carry you