Wednesday, September 28, 2011

I Just Need Possible

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"I don't need easy, I just need possible." Bethany Hamilton (Soul Surfer)

It is now fall and the crickets seem to echo at me. They do this every fall, when the weather is just a bit cooler, the window is cracked open and they sing this perfect little song as my mind wanders before I am able to fall asleep. I just lay there and listen to them, often fanaticizing about a little boy down the hall running and opening our bedroom door, jumping in bed with us, wanting me to read him a bedtime story, a boy that can wrap his arms around me and say "I love you mommy." Sometimes I imagine it to be so real, I want it, I crave it. I don't think I will ever stop wanting it. A piece of me feels so broken about where Noah is with his development, while another part of me remains hopeful and positive about all the possibilities for his future. Noah is such a full-time job. There is not a moment in the day when I am not networking, researching or even praying on his behalf.

Luke continues to speed along. I am in awe everyday about how fast baby development happens and how effortless it is. Luke doesn't need me to teach him, he just does things. He doesn't need me to navigate his hands to his mouth, or how to show him how to get his head up, or even to crawl. It's built in knowledge. Yet for Noah I continue to try to show him how to do things, only to have his body fight against him. And in a couple months he will be three. Three years ago that terrifying event and a fight for life. And three years later I am still fighting for him in so many ways. I imagine I will fight for him until my last breath... the life of a special needs mother.

I have had some wonderful friends pop in for little visits this month, which has has been nice. My sweet neighbor a few houses down, former co-workers, and even my new friend Sarah, who I latched onto at Target. You can tell a lot about a person if they love children and animals, even more so if they find it within themselves to love a special needs child. They hold Noah and talk to him just like he's any other little boy. They see past his differences which makes my heart just flutter. I feel he's accepted. Although I know everyone recognizes my life now is significantly different and permanently altered. I have a handful of people still in our corner. There are lots of people out there that are so unbelievably loving and kind. They sure balance out the ones that are completely the opposite. They are pieces of sunshine in my challenging days.

Chris and I continue to struggle a financially to obtain all we can for Noah. We tried to hold a garage sale during the summer, but it was a flop. I think we just picked one of those "off" weekends to do it, and didn't get a lot of traffic. Sadly we lack the time to try again, so what remains will likely be bundled off for the DAV. I've contemplated how to go about fundraising, or finding assistance, but it's not as easy as selling Girl Scout Cookies. I've tried to find help even through Noah's Early Intervention, however they tell me that their funding has been cut significantly and they can't help through their Family Assistance Program. I of course, being a mom directly affected by the lack of financial help, take great issue with the fact our government can spend millions throwing junk into space, paving roads like, Wadsworth, that were never in need of repair to begin with, and to top it off I have to listen to the nightly news about how our politicians dine lavishly, and use campaign funding for expensive gifts for themselves and others. It is almost like someone stabbing you with a dull fork. So many millions of wasted dollars, when there are so many people around the world struggling. The world feels so out of sync. It is estimated that there are 100 million people worldwide living with disabilities. A tremendous number. Often times I wonder if the majority of intention is not to provide rehabilitation to these individuals, but to simply say, you're not worth the time, effort or money it would take to make your life better. There is no doubt in my mind that Noah will make advancements with therapeutic help, and of course the love we hold for him. Granted, I don't know how far Noah will go, but healing is possible for him. Chris and I will walk to the ends of the earth and back to do what we can for him. We will do our best to leave no stone unturned.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Wednesday, September 21, 2011

Noah and the Attack of the Red Sisters

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I was feeling like a cooped up chicken today, so I braved it with both boys out into the world on my own. I tried to find a place that Noah would enjoy so I picked Sensory Park, the only "combined" park for both typical and special needs children in our City. Let's just start by saying the entire experience was disappointing. Noah loves to swing. It quite possibly is his favorite outdoor activity. Usually however, we have to place him on our laps, hold him with one hand and the swing with the other. A difficult feat for me, a bit easier for his dad. I had never been to Sensory Park so I really didn't know what to expect. I suppose I envisioned lots of fun and many things Noah could do. Not really the case. There is only one swing there with a reclined 5-point harness. And that swing has seen better days. There were no other things Noah could do at this park. The 5-point harness on the swing is overly stretched out, and shows signs of high abuse. Yet, somehow I thought I could make it work. I parked the double stroller close to the swing so I could supervise Luke, and swing Noah at the same time. I placed Noah in the swing, and attempted to buckle him in. The 5-point harness offered him no support so I attempted to angle him sideways and put his arm through one of the harness straps for some resemblance of support.

Suddenly out of nowhere the Red Sisters appear. Two overly precocious red head girls in pigtails. I am swarmed in seconds by these rambling obnoxious girls. One takes the break off the double stroller and makes an attempt to kidnap Luke while the other grabs the swing Noah is on and attempts to make him go faster and higher. I ask her to stop and she tells me "No. She'll do what she wants". Noah has a panicked look on his face, that says oh God, this little girl could kill me. I yank Noah out of the swing all the while hollering at Red number two who is trying to drive off with Luke as I shout don't touch the baby, he bites. Luke has no teeth, nor does he have the demeanor capable of biting anyone, yet it was all I could think of as a deterrent for a five year old terror. However her response was "cool" as she holds out her hand to see if Luke will play vampire. Where is the mom?, I keep asking myself. I turn to find anyone that looks like a parent. No one. What did mom do drop them off and run?

I had no other option than to pack up my crew and leave. The two intentionally block the bike path and refuse to move. It's like a stand-off. I should have rammed them with the double stroller, but instead my better judgment says throw it in reverse and go through the sand pit. Of course as soon as I hit the sand the double stroller is stranded. I look up to the sky and say "Why me?" I pick up the 27lb double stroller with both kids and their combined weight and carry it over the sand pit. No doubt my back will feel that tomorrow. The Red Sisters obviously annoyed that I found a way around them chase after me like piranhas desperate for a feed. Why won't they just go away? One shouts "the baby hasn't bit me yet", and the other reaches for a stick and throws it down in front of me intending for it to stop the double stroller like a police strip. Who are these girls and where did they come from? I tell myself God if this is a joke it isn't funny. I finally make it to the car and look back to see where the Red Sisters went. They are no where in sight. I sigh thinking I've reached safety, only to turn around to see one clinging to my bumper of my car. No way! I ask her to get her rear off my bumper so I can load my kids in my car. She gives me a dirty look and backs away. Defiant little things is an understatement. All I wanted was a little get away from the house and this was way more than I bargained for. A dog walks by on a leash and then off they go - saved by the walking Labrador Retriever.

I load the boys up and head for home. On the drive back I kept thinking maybe I expected too much out of the experience. Maybe there is no place that we will ever fit in or have opportunities for us like other families. But as I pulled into my driveway, I said to myself, my expectations are not too high. That park sucks. And anyone that thinks otherwise is kidding themselves. It is just like any other park. It doesn't have what Noah needs and he is entitled to the same fun as any other child. It needs better accommodations and at the very least a working 5-point harness, more than one swing and shade! Had the Red Sisters arrived before me, we never would have been "allowed" to get on that one existing swing. They are building another special needs park in the City neighboring us, however I'm not sure if it will be any better than Sensory Park. I wonder if they've even consulted with parents like us to see what activities our special needs children can engage in. I'm sure the response I would get is most children aren't severely physically affected as Noah, and they have to appeal to the "majority" which is slang for "it would cost us too much to accommodate your child." I think a real special needs park needs a swing capable of holding a wheelchair, ramps for wheelchair accessible play yards, shade and cabana for sensory issues, I'd also love to see a picnic area that accomodates special needs children and their families, and ditch the sand. How would someone like me even get to the playground with all the sand that is literally everywhere? It needs a rubber ground service everywhere. Sensory Park leaves out a huge amount of kids as it is far from wheelchair friendly.

I don't think we'll make an effort to go back. There wasn't anything there for us. Those "typical parks" are a dime a dozen. And I'd probably be looking over my shoulder the entire time wondering if the Red Sisters were going to strike again. I was clearly out numbered today.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Tuesday, September 13, 2011

The Irritating Factor

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Noah woke up at 5am this morning because there is a car in our neighborhood that refuses to fix a muffler problem. That car passes our house several times a day and without fail if Noah is sleeping or trying to sleep it is over. There are so many little things that now get on nerves that never did before simply because it makes life in the special needs lane more complicated. Like the teenager down the street that purposely lets his beagle poop all over the sidewalk down the entire street. Not so cute for a parent that takes lots of stroller rides to calm a upset child, or needs to use the sidewalk for a child in a walker or adaptive tricycle who can't easily dodge fresh poop. I think I even am starting to develop a short fuse for those who complain about literally nothing. Is it really a crisis because you burnt your dinner? Call for pizza. Try a REAL crisis. Try dealing with terminal illness, a special needs child, or a even a death, not everyone comes home each day to those they love - then tell me how serious your burnt dinner is. It feels like no one has any real perspective on how their actions or words affect someone else. We have such an egotistical society that it gets to me. We rarely help our neighbors or fellowman unless there is something in it for us. Or we use only a specific cause to be "nice" for a day. Cancer awareness day, or an Anniversary of September 11th... then everyone goes right back to forgetting what really should matter all the rest of the days of the year. Why can't we just all be in it for each other 365 days a year?

I get more annoyed that insurance agents, medical billing representatives and equipment vendors cannot seem to find the time to return my calls. Five minutes in my day is like an hour when you have to care for a special needs child. Hunting them down over the phone takes precious minutes I often don't have to deal with them. It also irritates me when I find a product I depend on and they discontinue it. There rarely is a substitute that works as good as what I liked. In the land of special needs that really is a pain. I also get irritated more when people put me off. They think if they ignore you long enough you'll go away. Little do they know the special needs mother is probably the most persistent creature walking the face of the earth. We will stalk you, bother you, and make you memorize our child's name until we see results to get them what they need.

And raise your hands if you know of someone who told you life just really isn't that bad? Not bad for who exactly? Not bad for the little boy who cannot do anything but lay on the floor all day? Not bad for the parent in ICU with a dying child? Even more ironic when you have a special needs parent tell you they just love the way their child is. Really? Who really hopes and dreams their child will face physical or mental challenges? Let's be honest. Totally honest about what this is like. Don't sugar coat it, don't say you're okay when you are not. It's okay to put your heart out there and wear it on your sleeve. There is no shame in pain. None. We all have it to some degree throughout our lifetime. Talk about it openly. God would want us to help each other through the mud puddles, and rough patches. He would want us to try to help heal each other. Yet so many just turn the other cheek... not their problem, not their child.

Noah may not be a child any of you gave birth too, but he is a small part of your life in someway if you are reading this. Whether you sit on the sidelines and are rooting for all his little achievements, or praying daily for continued miracles to come his way, whether he touches a soft spot in your heart with his tender blue eyes, or inspires you to help someone in need. There is a reason he is here, and there is a reason that you are reading about him - however you crossed his path. The biggest irritant is that there are so many that don't recognize that there is something much bigger than "us." So I ask that you don't worry about your burnt dinner, but worry more that your neighbor might be hungry. Pick up your puppy poo because a special needs child needs that sidewalk, and please... just please fix that loud muffler whoever you are so this tired mommy can sleep. Amen.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Thursday, September 8, 2011

Noah's AmTryke

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And suddenly fall is upon us, without much of a warning. The changes however that I want to come the fastest come the slowest. The closer we inch to Noah's third birthday the more I wish we were so much closer than we are to recovering gross motor development. Patience, I try to tell myself - but it doesn't work. I still feel so restless for all I want for Noah. Noah watches Luke now with such awe. He is quite aware that this little being half his size on the floor is gunning for all the toys he cannot play with. He now recognizes he must share my time and attention with someone else. Yet he remains lovingly curious about his little brother. Luke likewise has this amazing understanding of Noah's challenges and watches me intently as I feed or carry Noah from place to place. It is such an intriguing dynamic to have two very opposite children with very different physical abilities.

I found these fantastic little swim socks for Noah that prevent his feet from blistering while standing assisted at the bottom of the pool at therapy. I tried several swim shoes without success, they were simply too heavy for him and rubbed his ankles until they were raw. It's amazing how something so simple can make my day. Swim socks - who knew? Noah's daddy also finished putting his AmTryke Adaptive Bicycle together. Noah made his official debut today in his new bike. It was unsually comforting to watch his legs move up and down as any other child would... well with the exception that his feet were strapped in to simulate regular pedaling. It's hard to believe this little bike when you look at it, is as expensive at it is. It's much like something you'd buy at Toys R Us, except with adaptive hands and feet and a special harness. Noah had a great time. We decided not to strap in his hands yet to give him an opportunity to get comfortable with the fact that his legs were now doing something different than ever before.

I'm still trying to pursue getting Noah equipment, my never-ending daily challenge. I'm trying to still get him a free-standing toilet system, although the equipment vendor isn't responding to my inquiries. The seating system of course is still a problem, and his is quickly outgrowing his infant high-chair. It would be fantastic if I could find someone to custom make something just for Noah's particular body and needs. I also have been looking into seeing if I can get Noah and adaptive velcro spoon to work with self-feeding. Each spoon, left or right handed costs nearly $30 each.

Noah's attachment for his daddy is beyond words. I mean literally nothing to Noah as soon as he sees his daddy. Poor Chris can barely even get away to mow the yard. Noah insists Chris never leaves his side. I don't know what I would do without Chris. He is the most amazing father. The two of us are giving all we have for our two little ones.

I was at Target the other day, as it seems to be the only place I can buy Noah's particular brand of diapers, and found him a Crayola - Mess-Free Finger painting Kit. It is super neat. With all of Noah's sensory issues, touching regular finger paint drives him to the moon. It causes him to gag and cry, as he is overwhelmed with the texture. The mess free is so neat, you dip a finger in a little container filled with a uncolored substance that feels a bit like lip balm and magically color appears when you touch paper. No water, no mess, no fuss, and one happy Noah. I highly recommend this for any little one with sensory problems. We plan to paint a picture for daddy soon and post in on the refrigerator for all to see.

"Dear God, Please send to me the spirit of Your peace. Then send, dear Lord, the spirit of peace from me to all the world. Amen." Marianne Williamson


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.