Today, it is my pleasure to introduce a new guest blogger, Lori McGahon. Some of you may remember Lori from a post she contributed in January, which was EA/TEF Awareness Month. If you aren’t aware of what EA/TEF is, check out that article. She and I are fellow members of the EA/TEF motherhood, so an instant bond formed when we met last December. Since that virtual meeting, my admiration for Lori has grown by leaps and bounds. As her guest blogger bio shows, (scroll down the guest blogger page to find her), she is a can do woman. But even can do women struggle sometimes, as Lori’s sweet post shows.
Beautiful Butterfly: Our Child with Special Needs
Another week of sleepless nights, as our son Brandon suffered another bought of respiratory distress which several days later brought on a bout of pneumonia.
Normal for Most Kids
For some children, it would be another bout of ‘normal’ childhood illness; for Brandon, it means the difference of being treated at home or rushed to the ER for medical intervention. Brandon was born with a myriad of complex medical issues and his airway has always been a challenge for us. I say US, because its seems in the four years we have dealt with the complexity of Brandon’s medical issues and how WE should deal with them, it seems a light bulb has gone off in my head.
Normal for Brandon, Our Child with Special Needs
All of this is normal to Brandon, this is Brandon’s life and he does not know anything different from this. He was born into the world this way, and this is how his world has been. He has adapted to his world and in most ways accepted what is ‘normal’ to him. After all, this is Brandon’s world as he knows it. So, I wonder why can’t I? Why is it so hard for me to adapt and to accept?
I Am the Beautiful Butterfly
As Brandon recuperates, I mourn the fact he is missing school and missing his friends. I mourn the loss of innocence and ’normal’ children moments. We do a lot of things during the week he is home, but one particular activity really hit home for me. We started to play the board game, The Very Hungry Caterpillar, and I start to wonder when my son will shed his cocoon and become a beautiful carefree butterfly. I start to think about how wonderful it would be to be hospital-free, medicine-free and able to enjoy the world as a carefree butterfly with my little man. No worries, no sickness, no hospitals, just carefree fun. As my mind wanders, I am brought back with the squeal of delight of a 4 year old who has just beat mommy in the game! Brandon looks at me, laughs and says, “I won, Mommy! I am the beautiful butterfly!”
Our Lives Are What We Make of Them
And it is at this moment I think, indeed you are little man, indeed you are! It is amazing how in such simple moments we can learn such valuable lessons from our children. I realize my little caterpillar is not missing out on life, but I am. My worries and fears for what Brandon is missing out on clouded my vision. But he is actually not missing out on life at all.
After all, our lives are what we make of them, not what people define them to be. Our lives may be stressful, and we may wish for more, or something better. You know, the utopia that all people seem to have with ‘normal’ children. Life is not about the definition that other people put on it, but the definition you, yourself create. I realize, Brandon would not be who he is today without all of the challenges he has been through. I can wish everyday that he did not have to go through these things, but the bottom line is that wishes do not change reality.
What a Beautiful Butterfly Our Child with Special Needs Is!
This moment was like a slap in the face to me. I am letting go of my wishes and living for the moment. I realize, I missed the moment my son went from caterpillar, to cocoon to butterfly. But…… when my eyes, heart and soul allowed me to see!
….. Oh what a beautiful butterfly he is indeed standing in front of me!
Leave a Comment for Lori
Do you think of your child with special needs as a beautiful butterfly? How did you get to that point? How can you get to that point? Please, celebrate your butterfly moment by leaving a comment for Lori.
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My little girl with EA is now 5. I felt so much better after reading this post. It’s always hard to watch her challenged by what she’s just eaten; when all I can do is comfort her. But I realize, I as much comfort myself as her. She often brings food back up and then says with a gigantic smile “mommy I throw up”…And yes so well noted here…this is their life. The many trips to the hospital for pheumonia; I see her with the nurses and doctors and she very dutifully puts out her arm to have her bp tested or get a shot. Such a tiny little trouper. She spent the first 8 months of her life in one room because she was on suction, until it was decided when and how to do her repair. Every day I would think…how sad, she can’t see the trees, she can’t see the sky, she can’t see dogs and bugs…but..I kept telling myself, she doesn’t know any different. This is her life as she knows it. They are all beautiful beautiful butterflies and we’re so fortunate to have them land with us…so lucky.
Thank you for this post.
Suzanne
Lori, this post is very inspiring to me. I absolutely get bogged down in wishing things for Easton. I find it very hard to snap out of it. It’s funny though because I find myself looking back at old baby pictures and thinking, “Wow, he was really adorable and he actually looks quite healthy. I wish I could go back and enjoy that day with him.” I find myself spending entire vacations worried that he will get sick. And once we are back home and I realize that “we made it”, I wish I would have relaxed and actually enjoyed it myself.
I will try to do better! Thanks for the story!
Beautiful story! The message is relevant to all readers. We can so easily be caught up in fears about a myriad of possibilities and miss the moment we are in. Moreso, I imagine, for parents of special needs kids. “The Beautiful Butterfly” encourages joyful living no matter the circumstances!
Lori’s words speak right to my heart. It seems we live the same life, have the same wishes, the same regrets, the same frustrations. These children are far more amazing than normal “butterfies”. I look at them in complete admiration. I see how they take all the things that would knock us down, make us loose our faith yet they just keep getting back up and pushing through it with a renewed sense of purpose. I can’t wait to see how they change the world as adults. These little caterpillars show an abundance of love, they show compassion, sympathy. The way they view the world astounds me. They are so positive and thankful. Its something to aspire too. Makes us all us “normal people” want to me more like them.
Thanks Lori and Jolene for yet another wonderful post!