- Posted June 17, 2014 by
This iReport is part of an assignment:
Raising a special needs child
- Jareen, CNN iReport producer
Noah has a public blog for the last 5 years: http://www.noahsmiracle.blogspot.com
This blog post was written May 12, 2013:
I toured the Christian book store today, in search of a precious grandparent gift for Mother's Day for Noah's grandmother. The sales representative seemed to buzz me like a furious little bee, overly active, talking faster than I could digest and in a moment she stopped in her tracks looked at Noah and looked up at me with that look that I'm so familiar with. It's a recipe of a hint of sadness, a dash of I'm sorry, with a sprinkle of admiration, and a teaspoon of gratitude, hope and faith. She paused and waited as if longing for me to speak about what she was seeing, confirmation of knowing that something wasn't quite right with the child next to her in a stroller, with awkward movements and infectious laughter.
I looked up at her holding a ceramic angel in the palm of my hand, and said "it's like parenting alongside God. I don't do it alone." My answer must have comforted her curiosity and she went about the store collecting merchandise she thought I might adore. Her nervousness perhaps an apology for not being able to ask the questions that she had wanted to regarding Noah.
I'm sure there are lots of people who stumble upon us while we're coming and going from therapy, a trip to the store, a simple haircut to stop and wonder what life must be like for a mother of a special needs child. In some aspects it's very different than being a mother to a typical child, yet sometimes the experiences are much like all mothers enjoy. My heart still beams with pride over every little accomplishment Noah does; bearing weight on his legs, improved head control, or being able to grasp my keys for the very first time. I have hopes and dreams for his future, I hug and love on him just the same as any mother would do. There are also some big differences from other mothers. Our days consist of therapies and appointments, dealing with various agencies, therapists and doctors. Chasing down opportunities that don't otherwise exist for him without advocating for his needs. I puree his meals, make bottles, hold him, transfer him to chairs, car seats, the floor... thinking of creative ways to incorporate his limitations into a functioning world.
The job requires little sleep as my eyes remain glued and fixated on every breath he takes on a digital video baby monitor, my ears constantly tuned in for any sounds of a struggle indicating Noah is stuck in a position and needs to be flipped over or a sign that he needs comforting and care. I digest and evaluate every gag, sigh, laugh, and movement to make sure that it at all times is Noah's baseline and typical for him. I've masted the art of diagnosing a potential ailment or illness without a verbal child to tell me what his problems may be. I know his limitations, I know when he's sad by looking into his eyes, I know what each inflection of his laughter means. I remain on high alert and guarded at all times, there is no relaxing when you are a parent of a child with special needs. Other parents might be able to pacify their children with juice bottles and a snack, while I rush home quickly between appointments to hand feed a child who can't do it himself. Other parents may be able to negotiate with their children to calm down with promises for a candy or a toy, where I lack the ability to do that and retreat for the comforts of home for Noah when he declares he's had enough and wants to leave where he is at. It is a very purposeful way of parenting. A well oiled machine, fueled with love, synchronized to the care of your child.
But even on the most challenging of days, I am so grateful for Noah's life and that he is here with me. My boys are amazing and I am blessed on Mother's Day to have everything that comes with it.
No language can express the power, and beauty, and heroism, and majesty of a mother's love. It shrinks not where man cowers, and grows stronger where man faints, and over wastes of worldly fortunes sends the radiance of its quenchless fidelity like a star. ~Edwin Hubbell Chapin
- My life