When we have a baby our entire lives change. We're told that before they're born, but we don't grasp the reality of those words until we live it. The night feedings, leaky breasts, colic, runny poop down the leg of the baby when we're shopping for groceries, and cries that can wake the dead. Writer Anne Lamott says that a friend told her that a baby is somewhat like an alarm clock that goes off at random and is always tuned to heavy metal music.
Another surprise, though, and the reason that our species lives on, is the incredible feelings of love and attachment that these tiny beings evoke in us. It's what enables us to rise six times a night and live in a state of sleep deprivation. We learn what it's like to care more for the needs of another than we do for our own.
Plus, just when we begin to wonder how much longer our bodies can take the demands, our bundle of joy starts to sleep better at night, eat solid food, crawl and take steps, and woo us by saying "ma-ma!" The stroll down the normal developmental path is a pleasant one.
Nothing can prepare us for having a baby whose disabilities force us to veer onto a road with no signs and no maps. It can and often does feel terrifying. Eventually, though, even those of us whose kids have the severest of problems, begin to feel okay. We accept that life isn't what we imagined it would be, and we find the silver linings.
In fact, we get so good at managing that we begin to take ourselves for granted. We don't want to be viewed as saints, because we're not, and we certainly don't want our children to be pitied. So, we march on like good soldiers and do what needs to be done.
In my case it includes diapering a boy who is going to be five years old in a few months, giving him seizure medication twice daily, bottle feeding him when he won't drink from a cup, trying like hell to get him to take some solid food again, carrying him where he needs to go, and transporting his wheelchair to and from appointments and outings.
He can't get from place to place on his own, so I move him from the floor to the high chair so that he can play with his trucks. After awhile I carry him outside to swing. When I think he has tired of that (I have to read his body language and expressions, because he can't speak) I bring him in and sit him on the couch with a favorite musical toy for awhile. If I decide he and his sister might like to go for a swim, I wheel him to the neighborhood pool and then hang onto him in his floatie. I'm doing these things alone now, because I'm a single mom.
I've adapted and adjusted. All of the "special needs" have become routine and normal for us. For the most part, I go along feeling that all is well, and life is good.
The joy that his smile and his laughter bring me, the feeling of his talcum powder soft cheek next to mine, his little hands holding my neck...I'd gladly carry him anywhere and everywhere for the rest of my life.
There are times, though, that my need to "do it myself" puts some serious chinks in my armor. Usually, they are crisis times. When Daniel is sick and can't tell me what's wrong, what hurts or what he needs, I can become worn out from holding him, carrying him and guessing at what to try next. It's times like those that are most like reliving the newborn period. A four-year-old newborn can be a real challenge.
Then, if I get sick, the breakdown of family routine reaches a whole new level. If I need to lie down, my seven-year-old daughter is fine entertaining herself with her dolls and her books. Daniel isn't able to play quietly in his room for a couple of hours while mom recuperates. He needs me like a baby does, only even more.
Those times scare me. My extended family is far away, so calling grandma or grandpa is not an option. I am somewhat of an introvert, so I'm hesitant to ask already busy friends to come to my aid.
What to do?
Barbara Gill, in her book "Changed by a Child," has this advice:
Our first priority must be rest. If we have enough rest, then everything else will follow. To ensure this vital rest, we probably will have to get help, another pair of hands in the house. Contrary to popular belief, help is not a luxury, a self-indulgence, or a sign of weakness. It is a necessity. We deserve to have it. So start with the people most likely to say yes, and ask for the help you need.
Like it or not, I'm going to have to start building a "team" to help me. Gill likens our trying to go it alone to a net that only tightens around us as we struggle. I owe it to Daniel, Melody and myself to make sure I stay out of the net.
Carolyn Murray is the single mother of two young children, one with multiple disabilities. She formed the Daniel T. Murray Foundation for Children with Disabilities to help fund her online work at Daniel's Gift, a publication serving families of children with special needs. http://www.danielsgift.com
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