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.