Raising a special needs child is difficult. You try to be positive, and then setbacks take those happy feelings and stomp them in the dirt. You try to see the beauty in life for what it is, and then something ugly happens. It can wear on the nerves, stress out relationships, and affect your mental and physical health.
For the longest time, I have been holding it all in. I thought that if I put my heart out there for everyone to see, they would chide me for complaining. That being scared, unhappy, and hurting means that I am a horrible person or a horrible mother.
It's ok, I've been called worse.
But sometimes, the facade is tiring. Sometimes, I just want someone to look at me and say, "I'm scared too." So one of my friends recently asked me to "lay it all out on the line." To say exactly how I am feeling, no matter what the consequence.
I don't regret having my son. He is a joy, he is a light in my life. A light that will never be extinguished.
But that doesn't mean that I don't get stressed. That my husband and I don't fight about medical treatments and the way to talk to doctors. That I don't dream of the day that I won't scream at my child for wiggling during a feeding (trust me, wiggling during a tube feeding is a cardinal sin -- it brings on the puke and usually means I leave the feeding with half a cup of formula on my shoe).
I get scared when his alarms go off in the middle of the night, even with his nurse there. I get upset when his doctors tell us he just isn't growing properly, that things need to change quickly. I get even more upset when other doctors don't know what is wrong and dismiss our concerns like we are crazy.
I protect him from others. I keep him isolated for fear that he will catch something that will affect his little damaged lungs irreparably. I defend him when people want to know what is wrong with him. And the answer is, nothing is wrong with him, what's wrong with you?
I am always defending my choices. Even if others don't agree with the outcomes, I am satisfied because I know that 99.5% of those decisions are made with his best interest in mind.
I want him to win. I want something to get easier for him, whether that be gaining weight, learning to walk, deciding to eat.
So, I am hurting. But mostly because I am scared that he will lose, and that I won't know how to live without him.
Travel Mommy blogs over at The Travel Mommy, as well as 5 Minutes for Special Needs, Mama Manifesto, and the new DC Moms.