Friday, June 1, 2012
Sometimes I want to measure progress in a sprint. I still have those dreams where I wake up and Noah is running to me babbling in sentences begging to go to the zoo or play in a sandbox. I likely will always dream that way - of what should have been. I continue to believe in all things possible, healing in all directions. I don't want to give up. I can't give up on him. The boys and I were watching Sesame Street today during breakfast, our usual television programming at that hour, and they had the story of the tortoise and the hare. They announce "slow and steady wins the race." Things are really just that for Noah. Slow and steady. But he is making progress and we just continue to try everything we can to assist him in his "personal race" toward neurological recovery.
Sure there are tons I dream of doing for Noah as I send inquires to see how much money it would take to get us to California to do ABM, how much Therasuit therapy would cost, how much it would take to get us to Florida for Dolphin Therapy, how much an Aqualift Bath lift would cost, how do I afford a Freedom Concepts Bike... and on and on... my mind never stops working when it comes to thinking about ways to help Noah. It's become my mission, my main direction each morning. Good morning world, now how can I help my precious child recover from a terrible birth injury?
Life continues to be challenging in all directions. I remain nervous about what is happening with Noah's benefits, his insurance and SSI. Chris and I are both worried about how we will fund Noah's hippotherapy long-term. Registration for the fall is in July and if we continue on we must come up with $1020 out of pocket and another $45 weekly for that therapy, and that is just one out of pocket therapy we attempt for Noah on a regular basis. Of course added stresses of yet another vet visit, adds to to the line-up of unexpected events and expenses.
I've spent many days this week saying to myself just where is everyone? Before Noah's birth I had lots of coffee dates, shopping escapades with friends, outings, phone calls from people... it's all gone now. No one calls to say hello, ask you to coffee or go to get frozen yogurt... we are loved in many ways I know that. And I know many of those who love Noah and our family dearly live often hundreds of miles away. Yet I do feel that we are essentially loved from a distance by all those that do have the ability to be there and aren't. They care - but want to care from a distance. Guestbook comments or entries to remind you they are around - but you never physically see anyone. There certainly isn't anyone I could call to go to the zoo with me or to a vet visit - all of which I continue to do on my own. Often leaving me feeling like the Lone Ranger. I understand that Noah's special needs are challenging - I get that, and I am sure that people are uncomfortable with what they aren't familiar with, but when you get to know Noah and be around him, he's quite the little sweetheart. I live it 24 hours a day, 7 days a week. I know that going places for us requires extra planning and attention, I know that Noah's needs are considered "high maintenance needs" but no one but us are willing to bend our lives to accommodate Noah's needs. People don't just think to themselves how could I include Noah and his family - what would work for them, how could we incorporate them in an activity?
If I have an emergency or need help I know that I likely only have my mother or Chris to call and if they are at work, then I know I'm on my own. No one is going to drop anything in their day to come to our rescue. That is reality. Maybe I should be bitter about it, but I suppose I'm not. I rather feel like the world is missing out on experiencing Noah in all the amazing things that God has in-store for him.
There is a quote that I love by the actor Will Smith: "If you're absent during my struggle, don't expect to be present during my success" I think it speaks volumes as to the heart of what true support should mean. Be there through not just the good times but the bad, the hard, the downright painful. Be the person you would want as a friend if times were reversed and this was your life, because it could be. At anytime life could throw any of us a life-altering curve ball. None of us are exempt, even though many go through living life as if they are.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Posted by Noah's Miracle at 12:01 PM