Double Duty

Mothers typically joke about needing a dozen more hands. In my case I think I need a hundred to handle the ever growing Noah. He just turned eighteen months old last Wednesday and is still not meeting any recognizable milestones. Still cannot sit, crawl, get his hands to his mouth, hold a bottle, walk or even talk. Yet we celebrate each day because he's alive.

My other set of wonderful daddy hands have been out of commission, leaving me pulling double duty. Chris injured his back which in turn has lead to medication, physical therapy and not lifting any more than fifteen pounds. Which leaves lifting and holding Noah off limits. I miss my extra set of hands dearly. There are days when I think my arms are simply going to fall off and my own back is going to give way. Noah is not an easy little one to carry all day long. I can't just put him down to sit, or crawl or walk. He's completely dependent. Sometimes I have the luxury of the assistance of a stroller, sometimes I don't. Sometimes Noah will play happily while laying on the ground, while other times his only sense of bliss is in your arms.

I can tell that we're nearing the point of communication frustration. I'm not really sure how to bridge that hurdle as Noah's hands and arms remain quite stiff and I can't seem to teach him simple sign language like "done" or "more." I've thought of trying pictures to get him to decide what he wants. Although primarily I know that he wants whatever I'm eating and not his baby food. We're pleased with his interest with visualizing things he wants, but Noah still isn't ready to start eating solid food. Sometimes I can appease him with a sip of my drink, other times I have to fake him out and bring out ice cream, sherbet or something he can eat that he thinks belongs to us.

Bed wetting is also a nightly occurring task; I've tried pampers, huggies, night-time diapers, everything - and the little guy continually finds a way to pee out of his diaper. I only have one flannel pad and two sets of bed sheets and mattress pads so I'm doing laundry for him quite frequently. Noah is also very particular on what he'll sleep on. It has to be soft and without pills so I have to find good thread counts. I assume that is also part of his sensory issues.

In addition to my increased laundry load, I've also taken over things Chris always just took care of, the birdfeeders, the lawn care, etc. And I admit I wish I had a genie in a bottle to rub, or a little elf I could call upon for relief. His doctor tells us that his weight restrictions and therapy will take a minimum of eight weeks. By fall I expect to have some super human arms.

"You don't get paid for the hour. You get paid for the value you bring to the hour."
Jim Rohn

Love,



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

Father's Day Weekend

Father & Son
Noah & Daddy at the Lake

Pelicans Leaving the Pond

Luau Party!

Daddy & Noah

Daddy's Cake With Flames!

Daddy's Race Cake

Daddy's Elmo Shirt

Chris had a beautiful second Father's Day. Noah started off the day by presenting his daddy with the best present in the world; and Elmo face T-shirt. Noah was tremendously proud as his daddy held it up to his chest. Noah also got his daddy a racing Dairy-Queen ice cream cake equipped with flames on the sides and the official NHRA drag racing soundtrack.

It was a wonderful day for the two of them. We all walked to the lake together and seen a handful of pelicans at the pond. First time we've seen them out here. They spent the entire day together, even taking a nap together this afternoon. So very precious and sweet. God couldn't have gifted Noah with a better daddy. He is simply the best dad in the world. He loves his son more than anything.

Yesterday Noah went to his first Luau Bar-B-Que Party. He danced, he interrupted conversations, and ate a lot. It was a wonderful time for us and for Noah. The food was beyond heavenly. I almost couldn't stop eating. My friend Joey makes this amazing guacamole that she always brings to special occasions, that I can't resist. Then there were these little tortilla roll-ups that I just went after like crazy. And Noah had his first taste this time. I fingered food gently into his mouth while he sat in my lap in the snugglie. He did excellent. Not a single gag or choke. He had some guacamole, jello mouse, potato salad, and of course an ice cream sandwich, and to wash it down I gave in and let him have a sip of my caffeine free cream soda. I of course made sure not to give him chunks of things, but he did better than I imagined he would with what I tried. Hopefully by taking things slow and steady we'll get Noah eating eventually like other babies his age.

Noah was particularly interested in my luau kabob. I think he found the skewer fascinating. It was the very best kabob I've ever had in my entire life! It's one of those recipes that you want to latch on and use every single time. I know the host told me that he marinated the meat in soy sauce, garlic, oil and something else! There is a forth thing but I simply can't remember. My memory simply isn't as sharp since Noah's birth... the tiny details often escape me. I of course asked Noah to help remind me, but he's keeping that a guarded secret. Which means I'll be sending an email asking for that forth ingredient.

He continued to play with the green lay that he received upon his arrival. I think he knew he was decorated and it made him feel quite important. Nothing like a little present to make you feel like you're a little star. By the end of the night he had that lay unraveled and worn. It had a short hour life, but was very loved. It was just so wonderful to be with such a loving group of people.


"My father gave me the greatest gift anyone could give another person, he believed in me."

- Jim Valvano

Love,

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

HAPPY FATHER'S DAY

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

Chances Are

Noah had his PT and OT this afternoon. I suppose I left feeling like Noah is making small achievements as I'm able to report new little things each time we go. It's nothing earth shattering, small tid-bits; inch-stones.

After therapy I decided to take Noah to the carwash since I had a free coupon that was going to expire. Noah has been to the carwash many times before, but today he was very upset and frightened by the water hitting the windows. Thank goodness it was a short carwash. I tried to get a beer at the gas station without success. I know many of you are probably scratching your heads; but Noah's mommy doesn't drink. True. But I was on the hunt for a single beer so that I could cook my chicken on the barbie in beer. The gas station attendant looked at me like she was trying to determine if I wanted to be intoxicated and then said, "dear we haven't carried beer in two years." I left with a smile thinking do I really look that worn down that I'm sending the signal I need to drink?

I went across the street to the only liquor store I know of that was close by, for my single can of beer with little Noah in tow in my arms. I picked out the cheapest beer I could find: $1.05 for one beer.

There was a lady ahead of me checking out. Very pretty and tall. She commented on Noah and him needing a nap. I told her the truth. He didn't need a nap. He's slouched in my arms because he's special needs and really has no other way to position himself. She said "I've been there for thirty-three years. I understand." She explained her daughter was special needs.

I inquired, asking as many delicate questions as I could quickly. I was hoping for a story of inspiration. To be told she grew up and learned to walk and talk and was just fine. But she didn't tell me that. She paused and answered very softly "Well, no, not exactly." My heart sank for a moment. I was searching for that story of hope today. I wanted it, have been craving it. Give me something God. A sign. Anything. Nothing is chance so why did you send this person to me today?

She told me of a book that was given to her that she read. Why Bad Things Happen to Good People by Rabbi Harold S. Kushner. I haven't read the book, maybe I need to. She said it changed her life and the way she viewed her situation with her daughter. She said you soon find out if you can handle anything or if you can't.

We made it to the edge of the parking lot. I asked her name. She said it was Elaine, I told her mine was Stacy, we hugged and had a brief crying embrace. I thanked her, as we both parted in tears. Our hearts spoke to each other, and our eyes flooded in response.

Of course my mother having this extra sense of when I need her the most calls and we talk on the phone about my "moment" as I still haven't quite recovered from my teary experience and my temporary aching heart. Sometimes what happens is all these emotions get stored up, all the worry and fears, all the pain and even the joys, the suppressed hard times and then the flood gates open every so often. Also compounded was my stress over our finances and reading so many blogs this week where parents have lost their children or are losing the battle with keeping their children from gaining their angel wings. I often feel tremendous guilt because my heart occasionally aches about Noah's challenges, but they are hurting far worse. They are having to say good-bye.

My mother in my moment of needing to find a glimmer of hope today says, "well didn't you hear about that boy that just graduated with special needs and they told his parents to institutionalize him and in his speech he said":

"I stand before you accepted into every institution of higher learning I applied to." He never spoke a word until the age of five.

http://www.youtube.com/watch?v=gSactvpsla0

So what is the lesson for me today? I suppose it could be several things. Never underestimate the power of a chance encounter. Know that all the messages mean something. Think about them, digest them, hold them tight in ponder. Then realize that you can do this no matter which way this turns out.

“Nothing happens by chance, my friend... No such thing as luck. A meaning behind every little thing, and such a meaning behind this. Part for you, part for me, may not see it all real clear right now, but we will, before long.” Richard Bach


Love,



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

Bring on the Wonder

Noah in his grandma's babies seat

Noah notices that Costco sells Elmo DVD's!

The beautiful sun on our walk to the lake

We had an opportunity to try Noah's grandma's special needs baby seat today when we went to Costco. It is a wonderful seat for him. Sits right inside the cart and offers him the back and head support he needs since he cannot sit unsupported and unassisted. It is a must have chair for anyone that has a special needs baby. I highly recommend it. I like it so much, that when Noah outgrows this seat we will consider having another custom made for him that is bigger.

The seat of course gathers a lot of attention from other people. Many were curious about it - full of wonder. I imagine that will happen more often the older Noah gets whether he is able to walk in a kidwalk or a frame if he ever happens to get that strong. People are naturally curious about things they don't see all the time or that are "different." It's okay really, Chris and I aren't at all embarrassed by Noah or all the special things that go along with being his parents. We remain honored that God gave us such a gift regardless of how that gift was wrapped.

Sure I'd be stretching the truth if I said this is easy. It's not, it's far from easy. Our days can be complicated and full of trials, but we're doing the best we can to get through all the bumps as a family. It's really all any of us can do. And I feel that there are so many people who genuinely love Noah no matter what he is physically able to do. They see past all that just like we do, to bear witness to that sweet spirit that resides within.

My mother is the most loving grandmother I think could ever walk the face of the earth. She loves him beyond all measure. She is so proud of him. And I love how she craves to be near him and love him, and make him happy every second she can. Love without any borders and definitions. The two of them have such a beautiful bond. It's like they've known each other much longer than Noah's short eighteen months of age.

"From wonder into wonder existence opens"
Lao Tzu

Love,

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

Cerebral Palsy Remix

Love everyone even if you think they aren't "perfect" Just because Noah has Cerebral Palsy doesn't mean he's not going to do great things!

Love,

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

Check Your Juice!

As a parent, and even more so of a special needs child that is often more times medically more fragile than the typical child, it is of great concern to me when I learned of a new recent testing of our juices and some baby food that tested positive for unacceptable amounts of lead. No amounts of lead are acceptable for any child. Please make informed choices regarding your children's health:

http://envirolaw.org/documents/ProductsTestedforLeadFINAL.pdf

http://www.kqed.org/epArchive/R201006101730

http://www.inhabitots.com/2010/06/11/85-of-kids-drinks-snacks-could-contain-high-levels-of-lead/




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

Rainbows After the Rain

The rain detoured Noah's outdoor activities this weekend. I was joking with my mother the other day that Noah can sleep through the worst hail storms, the loudest thunder, and the heaviest of rain like it's nothing. But can wake up to a pin dropping on the floor. She says it's because the weather is an act of God where the other sounds are not. Which is probably very true considering our little Noah.

We got the grandmas chair, but due to the weather being very cold and terribly wet for the last three days, we weren't able to try it out in a grocery cart. It's a wonderfully made chair, that has had a lot of effort put into designing it. I wish we would have found it when Noah was three months old. If you know of a very little special needs baby this is a must have. Noah however won't be able to use it for very long because he's getting so big, maybe six months at best.

Chris and I also noticed Noah doing one new thing this weekend. During feedings Noah will take his left hand and bring it up to hold my wrist, often time swatting the spoon in his efforts to do so. Food is launched all over the place, and the dogs are thankful that finally the baby is producing food on the floor after all these months. I think Noah is a southpaw. I had seen him leaning in that direction for awhile now. At first we thought Noah was swatting food, or trying to grab us in an attempt to signal either he didn't like what was on the menu, or was full. But he does it with everything including his summertime favorite; ice cream. We think it is Noah's first attempt at wanting to feed himself. Even still we have a long way to go, as he still isn't bending the elbow to get it to his mouth, he just knows he wants the spoon. I have a feeling mealtime is going to get a lot more messy for us, as I plan to let Noah explore even more now knowing he is interested in trying to feed himself. I also anticipate eating will take a bit longer if I encourage his help, but if he is now ready to try, I'm ready to help him in any way I can.
Bring on hundreds of wash clothes...

Noah also got a new toy this weekend courtesy of his dad who couldn't resist it in the store. It is a V-tech Skippy Puppy. It's a puppy toy that moves around the floor on it's own and if it bumps into something it moves backwards. Noah loves toys like this since he can't go after them himself. I think it gives him a sense of actively participating. He also has a V-tech ball that does something similar as it rolls around on it's own on the floor. It will move away from him and then sometimes back and forth as he bats at it or kicks it. It gave him something new to do since the weather didn't cooperate enough to let him be with nature.

"And when it rains on your parade, look up rather than down. Without the rain, there would be no rainbow." Gilbert K. Chesteron.

Love,



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

Ice Cream Days

Noah's First Ankle Supports

Noah's Theratog Suit

One of Noah's favorite things is ice cream and whip cream. We had a special treat when my friends invited us to go with them to Dairy Queen at the mall. It's so nice to spend time with them, they are so very loving towards Noah, and they offer me help when things sometimes get difficult during outings. It's so nice that they don't see Noah any differently. He's just himself however he may be and they love him and our family just the same. They have such faith and encouragement that Noah will one day talk and walk. I wish I could take pieces of their hearts and spread them to everyone.

Noah is loving the nice weather. He is such a nature boy. He is so tuned into the noise of airplanes and patiently watches the sky trying to match the sound with a visual. He watches the trees to hunt out the birds and listens to the clicking of our agitated squirrels that wish we'd go inside so they could continue to eat my strawberries in the garden. I of course love watching Noah get all excited. His movements do not match his age, nor do his vocal sounds I suppose. But I love watching him just the same. His eyes are always such a vibrant shade of ocean blue when we're outside. He glows with happiness.

Noah hasn't done anything super new in a while, yet I hear kids like him have periods of doing that. I was so thrilled with him learning to roll I suppose I figured that sitting, crawling and him becoming mobile was only a few weeks away, but recovery just doesn't happen overnight and I have to remain patient and hopeful that he'll still get there, eventually. It will make his physical accomplishments that much more wonderful when he gets there, it's worth the wait.

Noah's special shoes and theratog suit arrived today. I'm excited about his suit. I'm hoping it gives his brain some sensory signals that help with his trunk control and will give him the support he needs to get his head off the ground and put weight on his arms and elbows. Noah can't even army crawl until we get to that stage. I've always had in my mind there was a certain order to movement - that he'd learn to sit before he learned to crawl and then crawl before he learned to walk. I'm not sure that those things will go in that order for Noah. If he crawls before he sits, I'm fine with that, or sits and then walks, or just walks and then sits. He can do it in any order he thinks suits him. Noah also got his little ankle supports. They are cute and very little. And his special shoes which are a little big for him still.

Noah is growing day by day with his preferences. He loves watching Super Why and Sid the Science Kid on PBS, but as soon as Dinosaur Train comes on at 8am he screams with fright. Noah does not like dinosaurs - he makes that very known. So I have to make sure to have Elmo on DVD if I need to get in the shower during the 8am Dinosaur Train timeslot, or the neighbors will hear him scream for roughly 5-6 minutes until I get out of the shower. He also doesn't appreciate Curious George and the verdict is also still out on Barney. Sometimes we love him, sometimes we hate him.

We were able to get out yesterday for a stroller ride, without hysterical crying. Always a work in progress, but I keep trying until I find something that works. We ran into a couple and their little boy who knew Noah and I, a sweet gentleman who waved at us, and an older couple who said isn't Noah just precious. Noah however doesn't let me stop for long to visit, as he thinks he must be moving at all times to be happy. It's a bit like Driving Miss Daisy...but I'm driving Mr. Noah.

Noah's taste buds have also been particular this week. He's having strong cravings for country gravy and shredded cheese. I'm quite impressed he's able to handle little bits of shredded cheese. He mimics me when I show him how to chew, which I'm very happy about. Hopefully that will lead him to better eating abilities in the days to come.

"Rest is not idleness, and to lie sometimes on the grass on a summer day listening to the murmur of water, or watching the clouds float across the sky, is hardly a waste of time."

~John Lubbock

Love,

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

Noah Goes to Saturn

Noah had days this week where he'd roll over and over to get around until of course he'd get himself stuck in a corner or up against a potted plant and I'd have to rescue him. It's of course slow but steady rolling. He doesn't always do it as much everyday, but when he does he's sure great at it.

Noah and I had a new venture this week together. The car dealership. The first time we've really had to go just the two of us. The car suffered a ungraceful injury and needed repair. I've been a Saturn owner for as long as I've been driving, and have gone to the same dealership since. Over the years they've become a bit like family, I know most of them all by first names. They've all rescued me out of a lot of situations over the past years, and offered me tremendous kindness at the same time. Not many people can say they love dealing with car salesmen, dealerships and repair, but we can. They've been the simply the best over the years. Now that the Saturn line has been discontinued they are closing forever at the end of this month. Many of them have moved on to other jobs now, a few familiar faces remain. They've never met Noah before this week, although I've told them about him. As soon as he walked in, they knew him, told me they've been reading about him online.

My heart was touched that this wonderful group of people cared beyond just doing their jobs. They cared enough to know about us as a family. We will miss them all.

Noah of course hated the waiting room as soon as the lady he was flirting with left to retrieve her car from service, so we had to walk around the now vacant showroom. A spot that I had my picture taken with my first car is now empty. Cubicles that filled once energized salesmen are abandoned. The smell of new paint, rubber and upholstery has disappeared. There really wasn't much for Noah to look at, but he enjoyed the company and conversation from the receptionist and only salesman on the floor. He's very much a social butterfly - a gene I still insist was given to him courtesy of his grandmother.

Overall I think Noah had a great visit there, he always has enjoyed watching cars. He loves cars and airplanes a lot. I'd love to take him to the Runway Grill Restaurant that allows you to watch planes take off on the runway while eating at the airport when we have extra money to dine-out. I suppose that's the only advantage to living near an airport and continuous flight pattern. I think he'd have a great time there.

We just ordered a new seat for Noah that we're hopeful that would accommodate him better in grocery carts and restaurant highchairs. It's a special needs support seat from http://www.grandmasbabies.com/

All things considering in the special needs world it was something that wasn't over a hundred dollars and that we were able to safely put on a credit card. We're hopeful that it will work for him. It would be a wonderful find if it works. And something other parents might benefit from too. The seller also custom makes them for older children that need support and are not yet sitting unassisted. Hopefully it will arrive soon and I can give a better review of how it is working for Noah.

"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, a honest compliment, or the smallest act of caring, all of which have the potential to turn a life around." Leo F. Buscaglia

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 Memorial Day Weekend

Noah had a great Memorial Day weekend. He loves it when he gets to spend lots of time with his daddy and grandma. Noah is scooting around quite well on his back by pushing with his feet. Not the ideal mode of mobility, yet I still have relief in my heart that he's able to scoot about in any way. I've noticed that Noah's left side is visibly stronger than his right side now. It's very hard for him to try to put weight on his arms to prop sit with his right hand. He also of course has a preference on which side he wants to rollover with. And his rolling is still not graceful, as he puts his leg up in the air to throw himself backwards. I keep telling him there is an easier way to do it, but he still insists on rolling his way.

I think Noah could have the potential to crawl if he'd get his head off the ground. But it remains firmly planted there even when I try to coax him with a toy to look up. I still keep hoping that the older he gets the stronger he will get. I also think his theratog suit may offer him the support and feeling of security that he needs to possibly help him with that too.

I've had encounters this week with people that I haven't seen for several years. One person I hadn't seen for over seventeen years. People I once thought cared more than I suppose I actually realized they really did. I think I've learned more about people and their nature since Noah's birth. If you really want to find someone's true colors faster than letting them sprout on their own, have a special needs child and see how they react towards you. I could spend days being disappointed by people's caviler and cold attitudes, but Noah doesn't give me time to dwell on those who snub their noses at Noah's journey.

I'm more cautious with who I surround Noah with. Many pray upon families like ours as we simply mean money in their pockets. They don't really care about your child, it's just a paycheck - the medical industry who prays upon your weakness to seek out the best recovery possible charging thousands upon thousands of dollars for a "promised cure." Or even medical supply and equipment companies who know that you're stuck paying hundreds of dollars because you have no choice but to do so. It's not a friendly, loving system, it's like dancing with the wolves.

Then there are those like most of you who probably have come to read and know of Noah. Entering our lives instantly, but caring for him with such intensity that many of your hearts swell with kindness and prayer. We haven't had the privilege of knowing you all for years, yet you feel like you've always been there just waiting to give us that shoulder to cry on, that hug to lean on, those words of encouragement and love.

"People who soar are those who refuse to sit back, sigh and wish things would change. They neither complain of their lot nor passively dream of a distant ship coming in. Rather they visualize in their minds they are not quitters; they will not allow life's circumstances to push them down and hold them under."

Author Unknown.

Love,