Yesterday, Caleb’s teacher shared some photos with us of Caleb enjoying science class at school. Eric brought his phone to me, started the slideshow and my initial smile turned to sobs…mascara running down my face…can’t catch my breath…ache in my chest…sobs. He was absolutely mystified with my reaction because the photos…here look…
The photos are awesome.
Look at that face!
The head bent over his work!
The smile for his teacher! Pure and total awesomeness, right?
Eric was immediately just so P.R.O.U.D. of him, of how hard he works, of how far he has come, of how much he is teaching us all about what is inside of him.
But what I saw in those photos was what we have lost. What he has lost. What I saw was the little boy he could and should have been if only I hadn’t passed the wrong X to him. I saw a long life of him trying hard, harder than anyone should have to try, and still falling short of his peers. He doesn’t seem aware of it now, but I know he will be in the not too distant future. He’s very, very socially aware. He loves to do what the other kids are doing. One of these days…he’s going to know…and that’s what broke my heart. It will always break my heart.
I wouldn’t give up a single curl on that head for any amount of money in the world…and I still hate what fragile X has done to him. Seven and a half years post diagnosis and I want to be done with it. Done with all of it. I want to not even know fragile X exists. That is a pretty good explanation for being so quiet here, I suppose.
35 thoughts on “Two perspectives.”
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I love you.
I know 😀 and the fact that we both ended the evening in pain from laughing so hard totally off sets my initial breakdown <3
Thank you you just made me cry (again). I never look at your kids (my son) that way I always think to myself man they are going to be/do someone/something great! I love that fact that when I think about the struggles ahead I have such awesome and amazing people in “my ring” who will be there for me. I love you. Keep being the awesome mama you are! xoxoxo
This one was a tear Jerker because I feel the same way about my daughter
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He may not feel bad. You don’t know. He’ll just know he’s different and that some things are harder. Love is greater than sorrow.
Totally can relate. Ezra is in kindergarten and I teach kindergarten. I always knew this year would be hard for me, being around kids the same age as he is, doing things he should be doing. Damn that x.
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He is such a gorgeous child!
And ican totally relate … 🙁
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Melissa Welin- I understand. There have been times where I felt Josh was robbed because of my mutant genes. I see the joy friends experience when their children celebrate developmental milesstones and rights of passage. I cry for what will never be yet, I celebrate who and what Josh is; a super hero full of love and so much goodness. I too, wonder what could/should have been. I cry in the bathroom when Josh tells me he wants to go to college to learn about history. I cry when Josh tells me he wants to sing like Axle Rose and have a rock band. I cry when Josh tells me he wishes he could jump on a plane and go to NYC to see his sister. Fragile X may have robbed us all of ” what should have been” but, I refuse to let it take away my joy and appreciation for our wonderfully unique children. Hugs.
he looks as if he is a SUPERVISOR on the job checking on his employees doing their job. SO PROFESSIONAL <3
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Those same thoughts enter my head occasionally too. Hugs.