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!