What She Wore: blue jean capris; grey t-shirt from my first teaching gig; black strappy sandals. I know it’s time to do laundry if this is what I’m wearing on a Friday.

There’s been this preview on Lifetime for about a million years. It’s for this movie, Matters of Life and Dating starring Ricki Lake. Based on the preview, I’d say it’s a story of how a woman figures out life after a mastectomy. Just watching it, you get the feeling she’s triumphant in the end while still looking sexy and finding Mr. Right.

I keep watching and thinking that I have to figure out how to become triumphant after all that’s happened to me.

But then I got to thinking. . . and that always leads to trouble.

I don’t think that I’m supposed to triumph over all of this. I don’t think I’m supposed to get over it. In my humble opinion, I think that I’m supposed to learn to deal with it. For me, what has happened to Charlie is like a death in the family. Not exactly like a death, but I have definitely experienced a loss. I am mourning the death of a dream–the dream of a healthy child who snuggled next to me the day he was born, who never left my side, never felt pain, and whose potential is unquestioned.

When someone close to you dies, you don’t just get over it. You learn to deal with it. Slowly, the good days outnumber the bad. Slowly, you learn how to function with this new life. You may still miss the person. You may still weep. You may wish things were different. Mourning a loss is not the same as climbing a mountain, emerging victoriously at its peak. Rather, mourning is like driving through the hills in Mississippi: there are up parts and there are down parts.

I guess what I’m saying is this–figuring it out is a process, not a destination. I can be hopeful, but that doesn’t mean that I’ll never cry about what happened. Being sad doesn’t mean that I’m not moving forward–it’s just part of the process.

Seriously, blogging is the best therapy out there.

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  1. Oh hun as a mom who has walked only a bit of the walk you have ahead I wanted to run over and give you a hug. By the way serious bloggin is good thearpy–that I do know. You will learn many lessons and see charcteristics in you and hubby u never kenw were there in the months and years to come…each day is a chance to grow with him, yes we can mourn the loss of what might of been but who knows what they might become! It might just be better for them then our dreams. We both know we have fighters, and couageous children, at least I hopep you already know that about Bino.

  2. You do grieve for what you thought you would have, but you do still have Charlie and he is learning and growing and thriving every day. You will have your days. We all do, but they will be fewer and you will find that you will have more days when you count the milestones he makes and revel in his successes.

  3. Andrew is 16 and sometimes I still mourn the loss of who I thought he would be. Sometimes I feel ashamed of that fact. I thought I would “get over it.” This week I was at an autism training and I ended up crying again. Thank God I have also learned to celebrate his progress.

  4. Oh Katy. This was so well put. I think everyone has these standard expectations of what life with their babies/children will be like…and when things are even slightly different we don’t know how to act or what to think. But what you probably realize that most people might not is that God may have other plans. We don’t triumph over them, as you said, and we don’t change it and make it what is “normal” in everyone else’s eyes. We just DO it and we do it the best we can and I admire you for doing just that. Charlie is different yes but he’s still just the sweetest little thing and you don’t love him any less and you cherish every moment you have with him. You have a connection with your son that most people will never even have with their own kids. You are so blessed. But you know that. :) Please excuse my sappiness. Hope you’re having a great trip! Toni

  5. OH girl!
    I have said the exact same thing so many times. When we learned our precious perfect Jacob had autism, we grieved. I still have my moments. But guess what? He is still our precious perfect Jacob. We still have dreams for our special kids. They just shift a little.

    And I always say, what God calls us to do, He equips us to do it. He has called you to be Charlie’s mom and He will help you do it. He is your precious perfect Charlie.


    ((OH and blogging is very therapeutic. My hubby doesn’t really “get” why I do it, but he definitely reaps the benefits of having a less crazy wife because of it! LOL))

  6. You got it on the nail. It is the death of a dream, and when you come to terms to that you are then able to embrace the possibilities and the delights of the uncharted future. Think of it as an adventure. And to be honest what this sort of experience does to ‘you’ is make you stop and appreciate it ALL. Every step, every gurgle, giggle and when words come you would have them all etched in your memory because it is one more GREAT accomplishment that Charlie the strong has. As usual I go on and on. But this is how I feel having to experience the death of a dream myself.

    Just so you know I have new dreams and they are just as good and I know you will get them too.

    Your son looks like a joy keep on loving him and give praises to God.

  7. Delekatala says:

    Being the mother of a special needs boy, I can tell you it gets better. And someday soon you will be thankful because your parenting will never be boring!

    Here is a poem my sister sent me a couple years back:

    –Welcome To Holland–

    I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

    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 Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After 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 guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    Its 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…. and you begin to notice that Holland has windmills….and Holland has tulips. 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 will never, ever, ever, ever go away… because the loss of that dream is a very 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.

  8. I know you don't know me, but i just googled….toddler temper tantrum shunt…and i was led to your blog. I am determined to read your blog from the beginning as it seems we are going through a lot of the same feeling with a child who has a shunt. My Max had an injury at birth and due to a large hematoma he aquired hydrocephalus and a shunt was placed 2 weeks after he was born. This particular post took the words right out of my mouth. I am crying as I type this. I don't know ANY others who are in my situation and it is SO refreshing to read that there IS someone out there who really knows how I (and the husband) are trying to make the best out of what life has dealt us. Our Max is our world and I know you feel the same about your son. I look forward to reading the rest of your blog. Thank you. i really thank you.-Sara H.

  9. Kara Melissa says:

    It's just part of the process. Indeed. I've really enjoyed reading your blog this week, catching up on previous posts. A lot of what you say makes so much sense to me, as I've thought or felt it along our own journey.