“I don’t know how you do it.”
I get those words a lot. I usually smile and reply, “You learn to deal with what you have to deal with.” That’s the truth, but there is a lot more to my truth that I don’t add. The truth in its entirety is just too much.
Holding my screaming, inconsolable son while people apply electrodes and monitors all over his head is too much.
Negotiating, convincing and sometimes fighting my toddler to sit for a tube feeding is too much.
Continually treating granulation tissue and hearing him say, “My tube hurts! I need cream on it!” is too much.
Needing to know what granulation tissue is and how to treat it is too much.
Exhausting every disciplinary option I can think of, but not getting anywhere with him is too much.
Repeatedly trying and failing to figure out an appropriate sensory diet for C’s needs is too much.
Rarely sleeping through the night because my son wakes up and needs me to lie next to him is too much.
Worrying every time he has a setback with his oral intake is too much.
Wondering if he’ll ever be able to sustain himself entirely on an oral diet is too much.
The ups and downs, the uncertainties, the medical supplies, the blends, the tube feeds, the doctor and therapy appointments…it’s all too much.
It’s too much to watch my baby boy experience all of these things in his short lifetime. This loving, funny, smart, sweet child who doesn’t deserve to experience all of these things.
What I don’t say about being a special needs mom is that it’s made me stronger than I ever imagined I could be, stronger than I ever wanted to be. I have this beautiful little love of my life to fight for, and even when I feel like I’m barely holding everything together, there is no other option.