These past few days have been really hard for me.
Ellie is doing fine and I think she will be fine through these next few weeks...that is not it.
But seeing the CT images of her brain and then explaining a typical brain to the blog readers and her normal brain and her brain now sounds TERRIBLE. But it doesn't change who she is and how I love her.
Her normal brain is the way she has always been...nothing has changed there. But sometimes I forget. I only see a beautiful, patient, loving, smart girl. I forget that other people see person with severe disabilities and feel sorry for her. I forget that people wonder what happened to her. I forget that people don't know how to act or what to say around her. I forget that she is scary to most people.
I forget that it is not normal to change your 11 year old's diapers, carry them everywhere, feed them though a tube in their stomach, worry about them pooping, monitor vital signs, get up several times a night because alarms are beeping, etc, etc, etc.
Every part of my interaction with her is different than it would be with another 11 year old.
It is not normal, but it is normal for me and Ellie. I normally don't see her disabilities at all, I truly don't, and I like it that way. At times like these I am reminded of her disabilities and I don't like it. I only want to see her positive characteristics, her talents and her beauty.
I have found myself distancing myself from her these last few days (without meaning too) because I think deep down I am afraid of losing her and don't know how I will be able to bear it.
It will be fine and I will get back to normal when I can forget that Ellie has disabilities I just need some time.
2 comments:
I feel SO much the same way! I forget about the disabilities. I forget about the things that might bother other people. I even distance myself, also without meaning to, when something traumatic happens... even if it's not sudden, but the news of it is. I often try to think through traumatic scenarios with Becca, or my best guesses about what could happen. Mostly I think that no one... NO ONE... will completely understand and they will say stupid things and they will try to comfort, but it won't always. But I have to remember that Becca was sent here to ME and to Geoff and for her own good, not anyone else's. They will all understand what they understand and that has to be enough. I should let you read Becca's Patriarchal Blessing sometime. I think that is best done in person, but I think you will find comfort there, too. We sure love you guys! And we'll try not to say stupid things and try to understand the best we know how and try to support you with our prayers and encouragement. I am so glad you posted this! I thought I was the only one to feel this way!! <3
Thank you Mikael for sharing such personal thoughts. I love when you get so real like that.
I do wish I could say "I understand". But I can't truly say that. None of my kids have even had stiches or a broken bone, so I have no clue.
But what I imagine in what it must be like to have a special needs child does sound scary, hard, and challenging. And yet, it also sounds like a unique way to understand and witness Heavenly Father's plan, to learn divine attributes first hand and to have an intense connection to your child like no other.
I know you always say it's HARD having the challenges that come with having Ellie's disabilities, but in some small way, it seems wonderful too. I love all the things you and Ellie have helped ME to learn through your experience. You guys are amazing.
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