Enthusiasm as a Skill

Grumpy man on his 2nd B-day

For 13 weeks now, Carson has been battling with sinus congestion that has left his energy depleted and him crabby.  Thankfully this last week, we've seen some small breakthroughs and really hope we are on our way to recovery.

His energy really perked up yesterday!  Carson had a good day!  Carson's only independent mobility so far, is while on his back on the floor, he kicks and rocks to his side so much that he turns himself in circles.  He might not 'go anywhere' but he just loves to move himself and it is hilarious to watch.  He had a renewed sense of energy yesterday and his circles were even more exaggerated.  It was great to watch.

Loves playing on the ground!

THEN, he chose to surprise me and our PT, Lori, with rolling over to his tummy!!!!  We have not witnessed him completely-independently rolling in forever!!!!!  I had to contain my scream of excitement as to not startle him  :)

On top of that, Carson was extremely verbal yesterday!  Even daddy was commenting all night on his talking.  Even twice during dinner, I would say "mmm mmm good", and he would repeat with a similar "mmm mmm mmm" version.  It was so wonderful to hear.

>>>>>My point of this post, other than just to brag..................

I have been reading a book called "Kids Beyond Limits" by Anat Baniel.  She is the founder of the Anat Baniel Method.  It is a therapy that is very different from other 'alternative therapies' out there.  We are attending a one-day workshop with Anat soon and then we are going to try out ABM sessions with a local practitioner   

What hit me hard this morning, was reading the '9 Essentials' chapter on Enthusiasm (her work is based on 9 Essentials that she's found with working with those with special needs).  She goes on to say that she isn't just talking about the Enthusiasm that comes naturally from really enjoying something, or being a fan of something... She is talking about "Enthusiasm as a skill that you can develop within yourself, one that you will apply in the service of helping your child overcome his limitations.... Enthusiasm as a skill is your ability and your willingness to acknowledge as important, the smallest of changes in your child, and for you to experience joy, internally celebrating those events or actions..... In that respect, Enthusiasm is not about paying compliments.... nor is it about clapping your hands to applaud something your child has accomplished .. but developing your ability to create and amplify your own internal experience of deep delight and appreciation for your child's tiniest changes and improvements."

This paragraph knocked me in the head and in the heart.... though my response isn't exactly what Anat was trying to convey, never-the-less, my heart was moved.  For many parents of special needs kiddos, it can be an internal struggle to outwardly brag, praise and share, the tiny accomplishments of your child.  Sometimes its due to fear - fear that your child will regress, fear that others with expect those accomplishments to become bigger accomplishments setting unrealistic expectations at that time.  Sometimes there is a sort of 'sadness' in only being able to find joy in the small things, instead of being able to rejoice in the 'typical milestones' of your friends.  Whatever the reason, I know that I struggle, and a few of my SN mommy friends, struggle with sharing and bragging about the "smallest of changes in my child".  

Then I think of God my father.  It is clear to me, that God rejoices, has enthusiasm for his children, even in our tiniest of changes and accomplishments.  The Bible says He delights in us!

So, reading the wise words of Anat of not just outwardly praising Carson, but working on the 'skill' of experiencing deep delight and appreciation for the 'tiniest changes' - and remembering that God delights in me his child, even in the little things.... I want to work on sharing my Enthusiasm!  I find its easier to post prayer request needs on Facebook, with my 'community', then it is to share the small accomplishments in Carson's life.... I am planning to change that.  So be prepared Facebook friends, lots of Enthusiastic sharing about Carson is to follow!!!  :)

His Compassion's are New Every Morning

Tonight I was trying to remember Carson's first week of life...  we spent that time at the NICU at Providence Hospital.  I was admitted to the hospital for a few days following my c-section and then spent the rest of the week in a family sleeping room on the same floor as the NICU.  One day, Kevin and I had a meeting with Carson's neonatologist Dr Knox, a nurse, a social worker and another person whose role I don't recall. During that meeting, we were told that as 'well' as Carson had been doing, because of different problems with his breathing, carbon dioxide levels, and just the amount of brain damage he suffered, they didn't expect him to live long.  They were recommending we go home on hospice care, and just enjoy every minute we had with him.  After that, we met with a wonderful pediatric hospice care provider Judy, and made arrangements to go home.  We stayed in the NICU for a couple more days after that meeting.

It is hard to recall fully all the discussions and decisions Kevin and I had to make after that meeting.  I know at some point we had to discuss whether or not we would call 911, if Carson stopped breathing.  We had to discuss what forms of resuscitation and life-saving efforts we would allow to help save him.  We had to discuss whether to keep morphine in the home for our nurse to administer when Carson would be at a place of just needing pain management.  I had a piece of paper next to my bed, where I had to jot down 'thoughts' and 'wishes' of a funeral for him.

Tonight I recalled a lot of those discussions... it seems like so long ago, and yet feels like just yesterday.  Tonight I sit here watching the baby monitor... watching my son, sound asleep in his bed.  Cannot believe in less than a month, we are going to be celebrating his 2nd birthday!!!  Now, nearly two years later, our discussions have turned from resuscitation and morphine, to preschool, a bigger changing table and what sounds he is going to make next!

Sometimes in life, we are hit hard and have to hold discussions we never thought we'd ever have to... sometimes we have to make tough decisions, without knowing which way life was going to play out.

I think about how God says that He has plans and a purpose for each one of us... yet, we don't know what journeys, trials and hardships that will entail.  Bad things happen in this natural life, in our broken human state and in our sin-filled world... people die, our bodies get sick, people are abused and abandoned, we are betrayed and beat down, we lose, we fall... and sometimes it is hard to know what 'plan and a purpose' God has for us in all of that.

But then God reminds me through my memories of Carson's first week through now - - - that even when things are hazy, confusing, hard, heartbreaking - He will see us through - He will bring us along our journey - He will use all of the 'stuff' as part of our plan and purpose.  I just hope that this blog post will remind me during the hard times - that there can always be a 'two years down the road' in the situation... that what seems unbearable and earth shattering in the moment, that God will someday bring me to a place of looking back and remembering that His compassion's are new every morning!  Great is His faithfulness!

God's loyal love couldn't have run out, 
     his merciful love couldn't have dried up.
They're created new every morning. 
     How great your faithfulness!
I'm sticking with God (I say it over and over). 
     He's all I've got left.
~Lamentations 3:22-24 MSG~

"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?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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!"

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!

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.

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!