1. We’re exhausted.
Physically, mentally, financially, and emotionally drained. The exhaustion is much more than just sleepless nights, although we’d like a full night’s sleep too. 🙂 I am exhausted from worry, anxiety, and fear. I’m exhausted from daily cares, therapy, and appointments. I am exhausted from the constant unknown. I lay in bed at night and worry. Our worries never go away. As much as we try to live one day at a time it’s really hard not to go to places in the future. Will he talk? Will he be teased at school? Will he ever sit on his own? Will he be in diapers forever?
2. We grieve.
This is something that I wonder if it will ever go away? We grieve the child we planned. I mourn the loss of the life we thought our child would have. I still get pangs of pain when I see other children his age talking and running around. That could have been him. I grieve certain life experiences that he will not have; ones that we so desperately wanted for him. Call me crazy, but yes, I do grieve the first broken heart, drivers license, and wedding bells.
3. We’re lonely.
It’s true. To be honest, until I met my other “green face moms” I never realized how lonely I was. I longed to be a friend again and not just a caregiver. I missed laughing with the girls at happy hour. Inside jokes. Remember those? Memories and unforgettable silly moments with the girls. Moms of special needs kids have hectic schedules and getting out is incredibly hard, but we still value friendships so very much. We want to be included, even if we have to take a rain check.
4. We cry.
We cry tears of sadness but also tears of joy. We cry because it’s not okay what our children have to endure, and it’s plainly not fair. We cry because there is nothing more we can do to help our children. We cry happy tears when our child exceeds a therapy goal. Tears of joy when we hear a new consonant or vowel. We cry because this life is not easy. We cry because there are days when we aren’t sure we are strong enough to handle one more day, and when those tears come I remember that my 4 year old told me I was “a superhero without a cape.”
5. We wouldn’t change it.
Yes, we are exhausted, lonely, and emotional messes at times…but we are the lucky ones. I honestly believe this. My son has put people in my path that I never would have met otherwise. I am beyond blessed to have met an amazing group of women who I hope to be lifelong friends. We even have inside jokes. 😉 Our family has been blessed by complete strangers who love our son without meeting him. Tears stream down my face as I think about how amazingly blessed I am to be called his mom. I have been given the task of caring for one of God’s angels on earth. Who would want to change that?