Guest blogger Lori McGahon writes about her child with special needs who is also, by his own admission, a beautiful butterfly.

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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