Sunday, May 14, 2017

Mother's Day in an Alien Land

Before I was convicted about some of my movie watching, I saw Twilight. I remember a scene where Bella and Edward and his brother were trying to get her to safety. They were driving in her truck running from a very dangerous situation. She looked out the window to see, in slow motion, her high school friends all coming out of a local coffee shop/diner. They were happy, laughing, just going on with their typical teen lives and she felt so outside of that, so removed from it, like that was her life and now this is. She felt alien to it.

That's so often what it feels like to be a special needs Mom. This weekend as families celebrated mother's day with flowers, fun meals, laughter, and more. I was giving my child with pale skin and huge dark circles under his eyes a breathing treatment trying to help him stop coughing so hard he couldn't breathe. I was giving him tube feeds because food just wasn't in the picture. I saw Moms, as I went to the pharmacy and the ER, laughing with their kids, walking with them, wearing cute skirts, and just having a wonderful weekend. I don't wish they knew this life. I am glad they have THAT life. It's just that it feels so alien to me to see such a relaxed situation, such ease, and I feel so removed from it.

Even when we were in the ER I saw parents bring in children with some typical pains and illnesses of childhood (a young girl got hurt on the soccer field, a young child woke up with a little fever and a slight cough but he was young and Mom was nervous, and a third child had a rash). I pray each of them feels 100% better today. But even then I felt so removed. I was wondering if the hospital had medicine that was safe for my son (sometimes they don't). I was contemplating how to get the medical food to the hospital because I DEFINITELY knew they didn't have his medical food for his tube feeds. I was praying we had a doctor/nurse/staff that wouldn't use the N word (needle) because that would set him off and I needed to prep him for anything that would hurt. I prayed he wouldn't beg me, AGAIN, to not "let them do this to me Mommy, please." because my Mom heart couldn't handle it.

I love my boys, as they say, to the moon and back. I adore them. I would walk this journey with them for a thousand years if that's what they needed and I had the ability. But it just seems the world keeps on turning, people keep living and breathing and smiling and laughing, and wearing cute dresses with kids in matching outfits and I am walking around with a thousand thoughts in my head wondering if anyone notices the medical food I spilled on my pants that morning as the med port of the extension popped open.

I am not looking for sympathy. It's just the feelings I have each day. I am so grateful I have a God that loves me through these raw feelings, these feelings of being so removed from reality and gives me strength to face another day of it.


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