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~