I’ve been told that people “don’t envy my life“. When I try to tell them that life with Nathan is wonderful, they think I’m either lying or in denial. They can’t see beyond the disability and all of its implications.
Yes, I can view Nathan’s situation through a different perspective and to choose to transform it into a gift. Yes, I can choose to focus on all of the positive way that being Nathan’s mom has changed me. Yes, we can treat Nathan as much as we can like a normal child and have tons of fun just living our life.
And this attitude is entirely valid.
But it wouldn’t be if there wasn’t an underlying foundation of reality. And truthfulness. And the truth is: it DOES suck.
It does such to have a child who can’t talk to me. It sucks to have a child who has no control over his body. It sucks to have a child who learns at about 1 millionth of the pace that other children learn. It sucks that he can’t play on his own or with other children. It sucks that he has a weak immune system and allergies and can hardly eat anything. It sucks for our life to revolve around therapies. It sucks to spend all your money and travel all over the place and spend all your time and energy trying to help a child and then have so little to show for it. It sucks that you will never be just another family, because there will always be so many more things to consider & deal with.
All of that is there.
When Nathan was younger I couldn’t see past this litany of complaints. As he got older and I matured in my journey, I couldn’t even remember these complaints because I was so busy transforming them into something positive. The mere thought of, “Oh I wish he could tell me about his day” was instantly replaced by “I love his nonverbal ways of communicating”.
Today I acknowledge the truth and reality of both. What’s happened to Nathan does suck. But I also refuse to stay stranded in the muck. I refuse to live my life in sadness and pity.
Instead I choose joy. I choose to acknowledge the reality and make the best of it. It’s like the monster in the closet. If you don’t acknowledge that you are scared by something in the closet, you will always be scared and run away from it. But if you acknowledge the truth of something that is scaring you, and you choose to confront it, you can then open the closet and realize it was just a fly. Then you live your life with a fly in your house, not a monster in your closet.
I actually just wrote a post about this (publishing it tomorrow).
You are right, it does suck, it sucks not knowing if what you are doing is right, it sucks (for me) to feel like you are grieving the loss of what you had imagined life to be when you are truly so grateful for every breath your child takes. It so sucks to have life revolve around appointments and doctors and to have the guilt of not spending time with your other kids weigh so heavily on you.
My recent struggles (and the post is very indirectly about it, but I can behonest here because they will probably never see it) are aound family members who are in denial that Nolen isn’t expected to make a full recovery. They want to chalk it up to “needing more time” or dismiss my concerns over his abnormal labs by saying “if the doctor isn’t worried you shouldn’t be”. I feel like they dismiss the effort I put into his care when they knock his needs for therapy and assistance.
Hang in there, you are doing a great job, you are taking care of Nathan and you are both lucky to have each other!