Thanksgiving Blessings

Oh sweet Noah, I am sitting upstairs listening to your daddy make you and your little brother laugh and squeal. Your daddy is just your world right now. He always knows how to make you happy. I love all three of you so very much. You had a really great Thanksgiving. You were able to eat small pieces of jelled cranberries and I pureed you a dinner with all the trimmings and chocolate cheesecake for dessert. You loved it. You looked on at your little brother with such curiosity and joy as you both watched your train go around the Christmas tree. These are the things memories are made of, Noah. I watched a documentary this year titled the "Life of a Turkey" on PBS. Many people probably would have found it a bit boring and maybe odd considering the timing of it so close to Thanksgiving and the fact that millions of turkeys are slaughtered across the world to find themselves on a dinner table for this holiday once a year, however I didn't really give it much thought that we'd also be serving up a turkey in relationship to watching it. To me it simply had some great messages about life. As mentioned in the documentary, as humans we fail to take life one day at a time, we rarely find the joy in each second - other creatures are able to do that. They aren't planning what they are doing today, tomorrow or even next year. They exist only in the moment. And because of that their worries are few, and their joys abundant.

I look at you and think you are a lot like that. You aren't planning your today, or your tomorrow or your next year. You have that joy about each moment you are here on this earth, you have something many of the rest of us don't have - a sense of enjoying what you have today, making the best of whatever it is. I wish we all had the ability to live in the moment, but we simply don't. You see I will always have to plan, to make arrangements, to figure out what comes next for you. That doesn't mean that I won't ever find that peace and pure joy. It just means my peace, joy and contentment will come from a different place. It means I have the hope that someday I can rest knowing your needs will forever be taken care of, that I have done my job to bring about the most independence I can for your life, to provide you with all the tools at your disposal to be all that you can be. Then when that happens I can sit back and exist only in the moment.


I can't exactly remember how the conversation was brought up, but your grandmother was telling me the other day of a bad time in history, during the Holocaust, where they killed thousands of disabled children in their Child Euthanasia Program. I learned of course of the Holocaust in grade school, but I don't remember them teaching us about that portion, some things in this world Noah are so horrific, that no one wants to talk about it. I of course didn't remember learning about it - so I came home and read up on it and sure enough your grandmother was telling me correctly - indeed thousands of children just like you were killed just because they were different. They deemed them "Life not worthy of Life - or useless eaters" implying heavily upon their burden to society. I don't understand humanity - how anyone could ever think that about someone like you. You are not a burden in anyway to this world. The world is a better place because you are in it. You are a blessing - a gift to this world Noah. Although these events occurred as early as 1939, I grieve years later for all the families that lost their special children. There are not enough tears in the world that express the magnitude of that pain. I am mad, sickened and filled with tremendous sadness all at the same time. The world must never ever let something like that happen to special needs children ever again.

I refuse to let you ever be mistreated by this world in anyway. I will fight through the stares, the mean comments, those that lack compassion and education. I will fight for you until my dying day to make sure that this world is appropriately kind to you. I will never give up on that mission. Your little brother will stand by your side always, he too will defend you long after your father and I are gone. He too will make sure that you will always be okay. We will stand by your side always.



Love,




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

Noah's 3rd Halloween

Noah's Upright Swing

Noah's Blues Clues Pumpkin



Noah the Race Car Driver



Noah had a good Halloween. He made a cute little race car driver. Noah refused to wear his hat, he isn't into hats... or hoodies even. I think it still goes back to his birth trauma and even potentially having his head cooled for days. He doesn't much like it if you fiddle with putting things on his head. Who could blame him? However, he's fine if you want to brush his hair, or kiss his head - or even give him a haircut.

I think Noah's sensory issues are improving, I haven't seen his gag reflex in about two months, and he's also welcomed his animated Elmo's back into his life, finding them fun and entertaining. He's even starting to blossom into different interests. I see him rolling around the floor to get to his toys and intently spends a lot of time swatting and attempting to reach for things. I think his head control is even getting stronger. When I carry him he is able to turn his head to the direction we are traveling now, something he couldn't do before. Things are slow, but we continue to work hard everyday to help Noah make gains. I still cling to the belief that miracles happen everyday.

Noah's grandma got him an early Christmas present. A swing so that he can have different motion than the platform swing offers him. Our basement has become much of a therapy gym for Noah. I am so tickled that we have a swing for Noah that we can also attach to a swingset in the summer months. Finally, Noah can swing like other children his age. I especially love the H-Harness, I think I much prefer it over a 5-point harness for Noah, it seems to offer him the stability he needs with softness and security.

I think I have hit a record with the earliest I have ever put the Christmas tree up. It was up November 5th - There is something so hopeful about Christmas, that I itch to participate in the season. A reminder as I walk the house, toting Noah in my arms that love, laughter and blessings are all around us. It is magical to see a child light up over lights, a train that circles a tree, gifts that have their names on them. All things seem possible at Christmas. A special kind of innocence that we seem to lose the older we get. The child-like awe and wonder amazes me. I gravitate towards it... I actually crave it... once remembering exactly how I felt at particular ages along my childhood. And now I am privileged to watch my own children create holiday memories. You must always draw upon all the sweet moments in life to get through the difficult ones. It is key to staying positive along the way. I am certain of it.

There is a quote that I just love by Annette Funicello, "Life does not have to be perfect to be wonderful." Chris and I are truly doing the best we can to find our rainbow in some often times very dark clouds. Perfection is overrated. What a life lesson to realize that you don't have to be perfect to be wonderful. One of the many things Noah is showing me, and hopefully showing the rest of the world as well. He is wonderful in every sense of that word.

Everyday I am simply in awe of how hard Noah is trying. If love can move mountains as they say, then watch out world because Noah is going to do great things in his lifetime. We are so dedicated to this little boy, he is the center of our world.

Love,





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

Share Your Story

Worry is just about the worst form of mental activity there is—next to hate, which is deeply self destructive. Worry is pointless. It is wasted mental energy." Neale Donald Walsch, Conversations with God



Worry and fear are powerful emotions that often consume large parts of my day. I also understand I could worry until the cows come home and it wouldn't necessarily change an outcome. But I don't know how to turn my worry and fear over to God. As mothers, to some degree we worry about our children, always. But to worry over a special needs child is a million times worse. It almost feels like a heaviness lays upon my heart. I am afraid to breathe, afraid to move, afraid the other shoe could drop at anytime. I am always on guard. I have grown into Noah's voice... his defender. I wish I could eliminate this immense worry and fear I have over Noah. I am scared for him - always.



It doesn't take much to put me on guard's edge. Noah grinding his teeth while readjusting himself in the night. A thousand things run through my head since it isn't characteristic for him. Is he uncomfortable? too cold? upset? possible breathing or seizure? My mind comes up with a million possibilities for simply hearing him clinch his teeth in the night. I wake up Chris briefly for his assessment to verify if I have pushed my inner alarm button prematurely. He reassures me all is okay, even getting out of bed to peak at Noah to help ease my concern. Yet I remain on duty. Wide awake listening for any potential signs of distress. An hour and twenty-two minutes later Noah laughs in his sleep and I finally give myself permission to close my eyes.



Everyday Noah has some kind of therapy with Luke in tow. My days are so fast often time leaving me really little time to even plan dinner for my family. My house has never been messier. Something that I am having trouble getting used to. Everything used to be so perfectly polished and cleaned. Now I find myself tripping over toys, baby gear and large therapy equipment. I am trying to learn to go with the flow. Everyday I learn something. Noah and Luke are my guides.



These are three things I learned today:

1) Don't write a therapy check in advance on a windy day unless you plan to sprint faster than a cheetah across 3 parking lots to chase after it.

2) It's okay to bring your child to therapy in his pajamas, even if you get a multitude of stares...

3) I will never ever have clothes that don't contain drool, spit, or splattered food on them ever again.


Noah and I were listening to a friend's Christian Music CD on the way home from therapy - Megan Isaacson, and her new CD titled The Living Room. We were in the car and I could have sworn I heard him try to sing to me. It was amazing. He didn't have words, but he was humming. Here I am at the drive thru at Starbucks crying. Because my little Noah was trying out his heavenly voice. The cashier asked if she could help me, I told her they were happy tears. She smiled and told me to have a good day. It took my breath away as I simply thanked God for just that small moment. I find such tremendous beauty in such small joys. There is nothing like else like it. It is the most intense feeling watching Noah do these miraculous things. I keep telling myself if he did it once, he will find a way to do it again.

Chris and I finally decided on Halloween costumes for the boys. Luke was easy... naturally he will be a little lion, Noah however was a bit more difficult. I've seen so many special needs networking postings with Halloween costumes designed around wheelchairs and walkers, however for Noah we're still in the in-between stage, as he isn't proficient in walking in a walker, nor has Medicaid "gifted" us with a pediatric wheelchair that will work for him. There are some mighty creative special needs parents out there who truly give a lot of effort and thought about making Halloween costumes that surround adaptive devices. We, however went simple and cheap this year. Noah will be Dale Earnhardt, Jr. #88, Chris' favorite NASCAR race driver. We found a new Dale Earnhardt, Jr. costume for a mere $4.97. And I think he'll be super cute. We almost went with Cookie Monster, but Noah was Elmo last year and although his skills are often infant-like, he is now a toddler and growing up, and a race car driver seemed maybe more age-appropriate for him.



And before I leave you with all my rambling feelings and Noah updates. I must share with you a story about a man named Christopher Coleman who pronounced dead at birth, and without oxygen at least fifteen minutes, much like that of Noah's long thirteen minutes, his story literally leaves me in tears every time I watch it. It makes me believe in infinite possibilities for my Noah. I promise never to give up on him. I will believe all things are possible for him. And I will forever and always ask for all that come in contact with him and our family... pray. Pray so hard and please don't stop praying for our little Noah. I would love nothing more if God called Noah to share his story. For now, I share that story for him. Someday I hope he will write the words.




(Remember to pause Noah's music to watch the video) You can also double click the screen directly for a larger view or cut and paste the Youtube link for viewing:
http://www.youtube.com/watch?v=6ERwwrK3I_I

Love,




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

I Just Need Possible

"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.


Love,



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

Noah and the Attack of the Red Sisters

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.

Love,




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

The Irritating Factor

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.

Love,



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

Noah's AmTryke

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

Love,




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