Robbie didn't want to go to school today. i wanted to let him stay here so bad. That is the hardest part of this, continuing to parent when all I want to do is hold him and protect him. Keeping his life normal is my job right now so I do that but sometimes i really don't want to.
I don't know if you have read Welcome to Holland but if you google it, it will only take a few minutes to read and it is a real summary of how I am feeling, probably how anyone who's child is different is feeling.
Today I am trying really hardto focus on the good things in my life that are still here even if the future has changed the right now hasn't much. I am still angry and hurt and all those things but also acutely aware of the things in my life that are amazing.
I have alot of love and support behind me and not everyone gets that. I am still deeply in love w/ my husband. I have beautiful kids. All 3 kids have such unique and beautiful personalities. i have shelter,food,and water. I have today and really that is all anyone has.
Even though Robbie's future looks bleak and it is really easy to get caught up in that we can't. We have to remain in today fight for a cure or a treatment. I have to remind myself daily that just because they haven't found anything doesn't mean they wont. I cant get so wrapped up in the injustice of it all that I forget to enjoy my life.
DMD is not Robbie. Robbie has DMD but he is not the disease. he's a little boy whos life is going to be difficult in many ways. I can't change that even though I want too. What i can do is love him w/ every thing I have. I can teach him compassion and I can play along w/ his horrible knock knock jokes.
If you have spent anytime w/ Robbie think of a time he made you smile. Even if it was just something I said he said on facebook. Post it in the comments section. I want to celebrate his awesomeness today.
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ReplyDeleteI have many wonderful memories of Robbie!! At each and every playdate we attended together he was always as sweet as can be! He was shy but inquisitive at the same time. I can see him now peaking around a corner to look at me and when he saw I caught him looking he would smile as big as he could.
ReplyDeleteThe more we interacted over the playdates the more open he became until he would readily come up to me and goof around with me.
He is just truly one of the sweetest and gentle little boys!
I would say at his birthday when he got to wear a rubber pig snout that made him look like a lil piggy... I'm not just smiling, I'm laughing now at that image of him. So funny and cute =)
ReplyDeletelol Tara, that is the perfect description of Robbie.
ReplyDeleteAnna that was such a great thing. i will never forget everyone yelling and shouting trying to get the Pig race dudes attention. He still has that pig nose somewhere.
His Knock Knock jokes are the best! :) Not to mention his strong need for putting the bad guys in jail! Doesn't matter how many times I escaped, he found me and made sure justice was served... even if I thought I was falsely accused :P. But above all.. he gives the best hugs ever. Anytime I need a hug, I know who gives the best ones, with the added bonus of a kiss on the cheek from time to time! How could I say no to, "I wanna give you a kiss too, Aunt Nette". He is honestly the sweetest most loving little boy I have ever met.
ReplyDeleteYes I do love his knock knock jokes they always end with "That you eat!" Ronnie hugs can change a bad day into a good day.
ReplyDeleteI haven't seen him in a while, but I always think of his sweet grin:) and I always think of the story you told of him eating your spices out of your cabinet, makes me laugh every time I think about it!
ReplyDeleteI remember at a back to school brunch we were both at. It was before I had Luke and Madi was a baby. You had to hold her or do something with her. I helped Robbie cut up his food and after that we just hit it off. When we were walking outside he wanted to hold my hand walking to the car. He was so sweet he just grabbed my hand looked up at me and gave me a little smile. I called him my little buddy and he said yep and we walked to the car hand in hand. I will never forget that.
ReplyDeleteWendy, that is VERY sweet!
ReplyDeleteThanks everyone. My gosh it is awesome to realize the thing you see in your child everyone else sees too. thank you
ReplyDeleteRobbie has always made me feel special. Over the summer every time we saw you at the pool he would come up and talk to me, and find me in the water to play with. One of my favorite memories was at his B-day party holding him up and so the guy running the pig race would see him, calling out to, " PICK THE BIRTHDAY BOY". He had the biggest smile.
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