Wednesday, October 27, 2010

Buckets of Fun

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Yesterday on a last minute whim I decided to call McDonald's to see if they would help me provide Halloween Mr. Potato Head Buckets, which their happy meals currently come in, for all the kids in Noah's sensory class. They were so kind and helped me, so off I went to pick up buckets, with Halloween candy I had in the house in little baggies for those kids that were able to eat candy. The kids loved their buckets and did a great job putting Mr. Potato Head stickers on them. I'll have to send a thank you note to McDonald's for their kindness.

Noah was a little fussy in class yesterday, I think he's a bit tired, teething some bigger teeth, and the wind was clearly blowing both of our auras around. He's really trying hard in therapy. I know that things are difficult for him. He's making good efforts to sit for small amounts of seconds. And when I mean small there isn't enough time to probably even take a picture. He's also trying to stay in a crawl position on a wedge pillow in therapy with his head up, which is something that is still very challenging for him, head and trunk control still needs a lot of work for him. His upper body just seems so weak.

We went out to dinner with family last night, Noah always loves dinning out. He loves to people watch. And he probably always knows that I will order him something that he can eat off the desert menu! I think he gets that sweet tooth from his daddy. Sometimes I wonder how we'll do things like this in the future. It's a bit complicated now toting around a highchair everywhere we go, because Noah lacks body support to sit in the ones restaurants provide. He may never be able to sit in a chair without support, I just don't know. But those closet to us, always seem to pitch in and help us make it work, one holds a baby, the other the highchair, another our food in doggie bags... when you have a special needs little one there are never enough welcomed hands. And Chris and I always so grateful and appreciative for all the extra support and help that it often takes getting Noah place to place.

Noah has a much needed break from therapy today, we'll be playing together today and staying warm, he's had a very busy schedule and I know he really needs this day off just to be Noah. He's turning into quite the snuggle bug demanding to sleep now in our bed for naps, but I must admit I love to cuddle and it's so much easier than holding him on the couch during naps or having to bounce him for hours on a ball like I once had to for all of his sensory issues. We've come a long way with little things. Sure there are no big milestones yet, but I must admit looking back on how hard a neurologically challenged baby was to care for as a newborn, we've made progress - as small as it is. I honestly don't know how I did it, maybe I knew there was no other choice. I don't know. It was the toughest thing I've ever done in my life - in a lot of ways it continues to be, just in a different way. I thank God that he sent Noah a daddy that never left our sides, and was always my relief and second line of defense when all else failed. Noah will take a "village" to help him probably his entire life.

I read this quote the other day, and just fell in love with it thinking about Noah being a little pencil making a difference in this world.

"I am a little pencil in the hand of a writing God who is sending a love letter to the world."
~Mother Teresa


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

Monday, October 25, 2010

God's Sprinkles

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There is that phrase that you need to stop and smell the roses, that often times we're so busy that we fail to just bare witness to what is in front of us. Sometimes I wonder if I get so busy sometimes that I'm not listening to God's messages, and every so often he'll make sure that I do.

Yesterday I went to Target with my mom to get Noah much needed diapers. I waited until the last minute and the only one I had left was on his cute bum. We checked out with a sweet girl named Sarah. Her physical limitations were very noticeable. I had assumed cerebral palsy like Noah from birth based upon her speech and movements. I told her about Noah, and she explained to me that she had acquired a brain injury when she was eight years old and thrown from a vehicle in an auto accident causing multiple fractures in her skull. She said she spent 4 months in the hospital and was in a coma for sometime. That she had to learn everything over from eating, to talking to walking. Her left side still is difficult for her to use. But she had such radiance about her. Her smile sparkled. She said that she works three jobs, and often times gets frustrated that she can't get one side of her body to work right. But then she said she says to herself "Sarah, you got a second chance." And it makes it all okay. I don't know if someone taught her to have such a positive outlook or if she herself is driven from within to rise up no matter what her challenges are to be the very best she can be. She was such a joy to be with in those short few minutes. She touched my heart and reminded me there is still time for Noah to learn things. I don't know how old Sarah is now, I'm guessing maybe in her middle twenties, I'm sure it's taken many years of therapy and hard work to get to where she is now. I could have just hugged her. She was so genuine, sweet and lovely in every way. I hope I'll get the chance someday to see her again.

Occasionally God sprinkles people about who leave me important messages. It's been a very stressful time lately for our family, maybe I have been too busy to stop and smell the roses - simply just overwhelmed with many things that feel so out of my control. I needed Sarah's positive message. It was just the fuel I needed to start the week.

"There are no accidents. God's just trying to remain anonymous."


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

Friday, October 22, 2010


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God brings people in and out of our lives with purpose. They say some are reasons, seasons, or a lifetime. Or a combination even of the three. Along this journey for almost the last two years Chris and I have been blessed that God has sent so many to love us when we needed it the most, to hug us when things were uncertain, shoulders to cry on when we were sad, and those to lift us up when when we felt our knees weaken.

Noah's buddy Bill, is always so hopeful for Noah. He sees things sometimes I do not, or way before I do. He is a gift from God sent for Noah. Bonded forever over the power of prayer the day we took him off life support. The two of them will be connected forever. Bill is always faithful in reminding me "everything has a season and we are calling this one done and calling forth a new season."

When I was little my father would sing many songs to me as he sprinkled fake sand into my eyes convincing me the sandman had visited and it was time for me to close my eyes and find sleep. He'd sing Mellow Yellow by Donovan, Tuesday Afternoon by the Moody Blues, Bridge Over Troubled Waters by Simon and Garfunkel and Turn! Turn! Turn! by the Byrds. How relevant the song Turn!, Turn!, Turn! really is. Timeless songs that actually would come to mean more than I ever realized in my lifetime. My season, Noah's season, Chris' season.

The first vinyl album my father ever purchased for me was the Muppet Show featuring: Kermit the Frog and the Rainbow Connection never knowing that the ultimate rainbow would arrive for me December 23, 2008, accompanying the birth of a little boy named Noah. Maybe those songs were a prelude to events that lay waiting ahead for me.

There is a season for everything, just like Bill reminded me. Noah's life will have many seasons. By no means does that mean that this will be as good as it gets for him or for us. As one season ends, another begins. Patience...Patient I must be. As hard as it is, different seasons will come. I must wait for the seasons to change.


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

Monday, October 18, 2010

Patiently Waiting

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Where are the changes? I ask myself that a lot now. Do I see anything different that Noah is doing today that he couldn't do yesterday. I anxiously wait, for this continued miracle to come to me. Most days I feel like someone rips out my heart and shoves it back in and starts all over the next day. Noah is my soft spot, he probably always will be. He is the one topic that can bring me to my knees in instant tears and fill me with immeasurable happiness. Life is bittersweet.

There is a quote from my favorite book, The Thorn Birds, that I frequently think about:

"There's a story... a legend, about a bird that sings just once in its life. From the moment it leaves its nest, it searches for a thorn tree... and never rests until it's found one. And then it sings... more sweetly than any other creature on the face of the earth. And singing, it impales itself on the longest, sharpest thorn. But, as it dies, it rises above its own agony, to out sing the lark and the nightingale. The thorn bird pays its life for just one song, but the whole world stills to listen, and God in his heaven smiles."

Does it mean that without great suffering there is no beauty to this life? Do we search out our whole lives for things only in the end to die a with a sweet song?

The book says the meaning of that story is "That the best... is bought only at the cost of great pain."

I think Chris and I have enough pain already to last us a lifetime. I sit frustrated writing this, that I can cannot find a cure for Noah. Many parents tell me they wouldn't want to change their child or find a cure if one existed, that they're happy with their child's disability as is. I however, am in the category that would jump on the chance to fix Noah's neurological damage if I could. Recovery is beyond slow. I worry about our future, maybe prematurely, maybe not. I never imagined that I would have a child that would be wheelchair bound, or non-verbal. I still want to believe that he'll find a way to accomplish things no one thinks he can. But is it all just false hope? Do I cling to all this faith for nothing?

I tried to color today with Noah, tried to get him to hold a crayon and scribble in a book. He drops it instantly or arches backwards in protest. I tried to feed him a meltable wafer cookie today without success, something he can do occasionally but not everyday. I tried to assist him to sit only to watch him flop forward like floppy rag doll. They say this life isn't the sprint it's a marathon. But this marathon could take Noah's whole entire childhood. Years of therapy, days of trying, minutes of worry, seconds of sadness and celebrations. And where will we be five years from now? Where we are now? Will he be any better then than he is today?

My mom keeps telling me it's just Noah time. I want to speed him up. Maybe that sounds selfish, but it's terribly hard watching him struggle all day to do things, he can't even play with a toy or cuddle with a stuffed animal. There is nothing there a child his age should be doing. I want him to be playing in the fall leaves and babbling to me about what he wants to be for Halloween. I long to participate in ways with him that I cannot. I'm confined to holding him while he watches Elmo, Super Why, or Blues Clues. We cannot play cars together or play games like hide and go seek. Maybe Noah doesn't miss it, because he doesn't know otherwise. But I do miss it. I miss all fun things we should be doing together all day long. I know how I want things to be, and I cannot make them so. All I have are my continued prayers, but will they be enough? Will they all be answered? Will even some of them be answered?

"Waiting for the spark from heaven to fall"
Matthew Arnold


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

Thursday, October 14, 2010

Noah Walks Like an Egyptian

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We were off to Noah's warm water session today, when he re-opened a wound that he acquired on the back of his heel last week. I knew they wouldn't let him go in the water with an open sore, so we went and did other things today at the school instead. He sat in on a music class, and learned to walk like an Egyptian to the 80's song by the Bangles. Then he got to play on sensory equipment the school has, which I might say is some of the better equipment I've seen around. I'm very impressed with what they have to offer children there, especially those with special needs. It of course is a private school, so this is proving to be a very expensive venture for us. I've heard lots of feedback of why don't you just let public schools get a hold of Noah, or participate in early intervention programs and so on, but the thing is as a parent you have to find the right match for your child. And we've done that. This school is amazing for Noah and he's doing and learning so many wonderful things. He's responding remarkably well to these instructors. We've tried lots of different things with Noah and not all of them have been successful. And when you feel like you found exactly what he needs, you want to hold onto it the best you can. This school is the perfect match for Noah.

Long-term I really don't know how we'll financially continue to afford to do this, we wouldn't have even gotten this far for this semester had it not been for Noah's fundraiser. It's been extremely hard for Chris and I to put aside our pride and realize that when you have a special needs child you cannot do it alone. Children like Noah cost millions over their lifetime. And that is an honest statistic. No exaggeration. Insurance companies aren't there for us, the government certainly isn't there for us - we are on our own just like most other special needs families out there.

But to see Noah making these tiny improvements that he otherwise couldn't do on his own, makes us push to find a way. Chris and I are trying to do without everything we can to provide for Noah. He is our first priority. It doesn't matter if our clothes have holes or our shoes have no soles... we will give everything to him always. That's what any good parent would do. Even if you are starving you give your last piece of bread to your child.

I wish there were sponsors for children like Noah, you can find sponsors for race cars, sporting events, and groups. But no one ever sponsors a special needs child, unless you happen to subscribe to sponsor a child in another country that is starving and needs help from a television ad. They are really forgotten members of society in a lot of ways. I shutter to think about all the physical, mental and emotional gains all of these special needs children could have if only they had access to every single possible form of treatment and therapy that was financially obtainable to all these families. So many of us are limited in our options.

Noah started displaying a gag reflex while holding objects in his hands the last few weeks, something that is new, that we haven't seen before. His therapists tell me this is quite common for children with sensory problems. I feel like there really isn't a problem that Noah does not have. Neurological issues, sensory issues, physical issues. The brain is a terribly hard organ to fix. Yet I continue to cling to hope that the brain can change itself, build new bridges, and make connections. There are days when I do get discouraged that Noah still cannot do anything children his age are doing. He isn't sitting, cannot crawl, cannot get his head off the ground, still lacks total head control, isn't walking, can't hold a bottle, can't self feed or even hold food, he can't even hold a toy. But I still have hope that maybe one day, just one day he might.

I know that his two-year deadline is fast approaching. The date that most therapists and physicians measure is the end all be all of skills. If you don't crawl by two, you never will, if you don't walk by three you never will and so on... it's such doom and gloom. I don't think the medical community really realizes what a negative impact that has on both the child and the parents when you basically tell them give up hope, accept reality and realize that this is as good as it gets.

I was very fortunate in my childhood. I had so many people that believed in me, and continued to believe in me. They built my spirit and carved my confidence. They shaped me into what I consider a really great person. Most of all my parents never ever told me I couldn't do something, even things I wasn't good at. I never could hit a baseball, never could do a cartwheel, never could climb a rope, but no one ever gave up on me. No one ever said she'll never do it. I could probably hit a baseball now... well maybe after many tries, I can guarantee a cartwheel will never be in my future, and I might be able to climb a rope if there were alligators nipping at my feet... but the point is, no one ever says to a typical developing child you will never amount to anything and you can never do these things, so why do we instill in special needs children that they will never or can't do something? How terribly unfair that is to write them off so prematurely.

I want to run from those who say Noah won't or can't ever do something. I don't think that is positive energy for him to be around, it will never encourage him if he feels someone doesn't believe in him. He doesn't need people in his life that are going to give up on him. I don't want Noah to be just another number in the system. Another quota for a public school, another dollar sign for a government program. He is a person, and he deserves to have people in his life that genuinely care about him with all their hearts, that don't just make him a job. But a priority as if Noah was their child.

"Don't listen to anyone who tells you that you can't do this or that. That's nonsense. Make up your mind, you'll never use crutches or a stick, then have a go at everything. Go to school, join in all the games you can. Go anywhere you want to. But never, never let them persuade you that things are too difficult or impossible."
Douglas Bader.


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

Saturday, October 9, 2010

The Cutest Pumpkin in the Patch

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Noah Expressing how he feels about being a wind-blown pumpkin

Noah meets Marshall & Nipper (I think he thought he was going to get kissed)

The Pumpkin Patch

Perfect Pumpkins

Marshall & Nipper


The Cutest Pumpkin in the Patch

Mommy & Me next to our pumpkin!

Today we went to the Rock Creek Pumpkin Patch. Noah loved it last year, and even more so this year. It was also really great just to be out in the fresh air, and feel the dirt between my fingers, picking and sawing off pumpkins from the vine. I felt connected to the earth, to nature, to God. Circumstances have been so difficult lately, that it was just nice to be worry-free, and happy in a field of pumpkins, if only for a little while.

I took Noah's stroller out and 4-wheeled it through the pumpkin patch. He loved it. Other kids got to run and play, but he had his own kind of fun. Noah also got his first face to face meeting with horses. I had wanted to see if he made a connection with them for a long time. And he did. It was more interesting really for me to watch the reactions of the horses to Noah. There is an understanding there, an unspoken understanding. Those horses understood Noah, they recognized he was special in some way, paid extra attention to him. Their names were Marshall and Nipper. They are down here until the end of the month from Delta, Colorado to give hay rides. The handler was so nice and offered us a hayride even if we needed to tie down Noah's stroller he said he'd make any accommodations necessary for him. Which was a tremendously wonderful offer. It's so nice when you're included, when someone wants to go out of their way to make you feel like you're like everyone else. But the wind was terrible today, and it was all Noah could do to survive the pumpkin patch in the wind, we didn't think he'd be able to tolerate the wind on a hayride. Maybe next year.

Noah also was especially interested in the baby pigs, and talked to the sheep. None of the other animals really interested him much this year. He has his favorites and I'm glad he's making decisions on what he likes and dislikes.

I just loved Noah's little outfit for this year, a pumpkin hoodie set with a little pumpkin leaf on top his head. He was the cutest little pumpkin in the patch. My little pumpkin. We got Noah his own little teeny pumpkins for fifty-cents. Maybe he can bat them around the family room. Noah loves balls, kicking them hitting them. Of course he needs help doing that. It's more like you kick his legs for him or push the balls with his hands for him, but he loves it. He can't play without our help.

The holiday toys are coming out and I haven't found not one thing I can get Noah yet. He cannot yet play with toddler toys, can't hold anything in his hands, can't stack or push or pull, his fine and gross motor skills just aren't there. I'd love to get him cars or trains or all those toys parents get their little kids at this age, but just can't. And he's getting too old for the baby toys, not to mention they are quickly losing his attention probably out of boredom. There is a special wagon I'd like to try to get Noah for Christmas or his birthday. It's the Radio Flyer Comfort Embrace Wagon 3400. The first of it's kind with a five point harness. It becomes available this month for purchase, but I'm sure it will also carry a big price tag and may be something that is out of reach for us to get. But Christmas and his birthday are still a few weeks away, maybe by that time Santa will give me a brilliant idea on what to do.

I've attached some pictures of Noah's 2nd year going to the Pumpkin Patch. It was a beautiful and blessed day.


Monday, October 4, 2010

Noah Places his Order...

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It has been an exhausting week. My car has been declared a total loss, which I anticipated. Yet until you actually hear the words "declared a total loss" you somehow think, maybe it really wasn't that bad, maybe they can fix it. Maybe it's just part of that "hope" that I've tried to build over the last two years. Be hopeful about everything. I had a few hours where I honestly grieved the loss of that car. Silly I know. We should never attach those types of feelings to an object. I sat and remembered about putting my Nitrofish racing decal on it, when it was hours old. A decal that was a gift from my dear friend Eddie, who was like family to me, who since passed away. It was the first car I ever raced at Bandimere, I brought Noah home from the NICU in it, it was the car I met my husband in, it was the first brand new car I ever owned. It was the seventh model of it's kind sold and made in Colorado. Lucky number seven. I will miss that car, but really it's the memories that I attached to it. Of course I feel like it's just another dilemma for us, how will we find a way to replace a vehicle that we need?

Last week was busy for Noah and therapy. I suppose that was good, as it kept my mind off all these overwhelming thoughts of things I cannot change, problems I cannot fix. Noah is doing wonderful with warm water. He lets the teacher hold him the entire time, while I just remain his cheerleader on the sidelines. The water is so warm that by the end of the session his body becomes so lose and flexible. He is just so relaxed. It's so interesting to see him do things in water he cannot do otherwise. The way he moves his legs and arms, I hope that eventually that transfers over to things he can permanently do.

Noah has also decided he wants to talk and place an order whenever we go through a drive-thru for food or drink. It is the funniest thing and I cannot help but laugh every time he does it. He turns to the direction of the speakers and shouts as loud as he can in his own words, often times I have to repeat myself just to talk over him. But it is the cutest thing that he thinks he is ordering something, or has at least figured out you talk into the speaker and get something. I really wish I understood him. I keep thinking that surely this can't mean he's non-verbal. I want all of this to turn into speech someday.

Last Friday I thought I needed a sugar pick-me up so I took Noah over to Lamars for a donut run. I was semi-annoyed that all the handicap spaces are continually filled with non-handicapped vehicles. I know that people think they'll only be a few minutes and that it is okay for them to park there. But what takes the average person a handful of minutes, takes someone like me with a special needs child tripple the time. I had casually mentioned it to the store owner over small talk at the register that I wished able bodied customers wouldn't do that, he was so nice, although I know it's out of his control. He gave me a discount on a donut, and gave me a lamar's coffee tumbler. Although that wasn't my intention for mentioning it. It was just a casual, non-angry vent, as really that kind of thing happens a lot of places I go. But his kindness did not go unnoticed, and I will always remember that. Able bodied people don't realize that those spots really aren't conveninece for people like us, but a necessity. We often travel with so much equipment that we need the wider spaces. And I've always been honest about our handicapped parking. If Noah isn't with me, I don't park in those spaces. It is that simple. Not to mention my name certainly isn't on the handicap permit, Noah's is! I can walk, and if I don't have Noah with me I don't need those spaces. Walking is a gift. And I don't mind walking further even if that means I get wet in the rain, or snowed upon, or if I'm really cold and it's windy.

Although our load is heavy, we will always continue to hope for a better tomorrow.

“Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself... 'How did I get through all of that?”
Author Unknown


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