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.