This week has been reflection for me, I've looked back, looked at the present, and attempted unsuccessfully to avoid looking at the future. There is so much I need to learn about, services that Noah may be eligible for, help that could provide for our family better. There's no one to teach me these things, no college courses for mothers that happen to have children with special needs. Yet even if they did we wouldn't have the time to attend. All week long I've been terribly annoyed with the supplier of Noah's duocal supplement. They call me often daily for surveys and inquiries. Surely they can't be the only outfit in town that supplies duocal. And they send me the supplement like it's going out of style. Two cans weekly when each can lasts one month's time. Why? Probably so they can bill Medicaid for more money. No one explains our options to me, maybe they assume I already know, but I don't. I'm navigating blind. In any event Noah is gaining weight and they anticipate he will no longer need the supplement by year's end. And I will have an entire cupboard filled with this stuff by that time.
Friday evenings have almost become a ritual for me to handle our grocery shopping needs. I rush through stores in order to meet Noah's bath time schedule, knowing quickly that Noah could give his daddy a hard time at home at any moment. Yet as a hurriedly go about mentally trying to remember everything I need, I take notice of those few around me shopping. Some seem so happy, others tense with concern, while others focused reading ingredients and box labels. I wonder what their lives are like. Could any of them know what it feels like to be me on a given day? It is often a lonely experience having a child like Noah. You can't stroll with a friend for lunch, you can't celebrate milestones jointly when your baby isn't meeting any of them, you can't go anywhere you chose because Noah has travel, time and health limitations. Some days are so unbelievably hard physically and emotionally, sometimes it's simply better if you walk the road alone. Yet God is always there. Since Noah's birth my faith has grown increasingly stronger, I've found purpose that was not there before. While others have turned their backs, he has not and will not.
There is a book that I stumbled across after reading one of Noah's friend's posts. I would strongly encourage everyone to read it. The book is called Remembering Alexis by a Colorado author named Margaret Marshall Rhyne and can be ordered online or obtained at some local Costco stores which are listed on the author's website. I believe that you should live out loud. Although it exposes us to judgment I think it is more important to live the truth, regardless. We all have stories within us. This journey has dark corners, sadness, grief, but there are also joys and celebrations. Discussing this journey may help another, it may teach another, it may bring about understanding and compassion, or it may be as simple as just moving you in some way or restoring your faith. This book isn't just about what it is like to raise a handicapped child, but rather a life's journey from beginning to end, filled with all the characters that fill one's life's story, who contribute and piece together our "puzzle" as the author refers to it as. The book challenges perceptions and encourages personal growth through experiences.
The author's website for Remembering Alexis is posted below, for those interested in learning more, you can also read a personal email from the author under a link to Noah's friend, Julia. http://rememberingalexis.com
"God doesn't play dice with the universe." Albert Einstein
Nothing in life is chance.
Stacy, Chris & Noah