Monday, October 29, 2012

Pink Skies

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Noah trying out his new sit-to-stand stander
Noah's Madagascar 3 Circus Wig
Noah's sit-to-stand stander arrived today. Noah usually loves or hates something immediately. And he happened to love his stander upon arrival. Was all smiles and very patient today when we made the proper size adjustments for him. I think he loves the fact that it raises and lowers him with a pressure pump. And I love the tray feature. It's the largest tray I've ever seen on these types of equipment and it would be perfect for artwork - playing with toys and objects or even carving a pumpkin! However the down side is that it's extremely heavy. At around 80 pounds and it's super wide which means we'd have to take all the baby gates down just to get it into another room and and it would take 2 people to lift it anywhere. I have no ramps in our house, something that is becoming more of a problem for us daily with all of Noah's equipment. The wall to wall carpet it certainly becoming more troublesome in our home as I can't roll these gadgets easily without a laminate/hardwood type of flooring. These small ledges that our home has to get from one room to the next also doesn't help our cause. So for now I guess it's going to stay in the entry way of our house because I have no idea where else to put it. I certainly can't move it myself.

Noah I think has finally adjusted to the change of seasons and winter routine. He's accepted that we can't any longer go on daily walks and has accepted his swing in the basement as an alternative. And once again he's changed his tastes in television programming. The current hit Fraggle Rock and anything Christmas. Noah has always loved Christmas year round. He especially starts to love it a bit more starting about July of each year. Chris and I always joke that it's because he was a holiday season baby. I'm sure he'll revisit his Shrek movies again next week. He likes to circulate his programming.

The pink sunset tonight held me in awe. The kind of painting only God can do. His canvas. It felt like he was trying to draw me a picture - presenting me with a message that I don't yet understand. Sometimes I find Him in my quiet moments - as I seek for answers on how to best help Noah each day. As the pink sky changed from minute to minute, I didn't want to let go of it. Almost like he was reminding me of His promise to Noah and to remember where there is beautiful light... that there is always hope. Noah has moments where he too himself reminds me of all he's capable of. I'll see him do something he couldn't do the day before, no matter how little even if it's putting a thumb in his mouth, or leaning forward with amazing head control in his car seat. Small earthquakes really that go unnoticed by everyone except his dad and I. But we watch and wait patiently for all that Noah is learning to do.


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

Sunday, October 14, 2012

Without Wheels

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The Sweet Pumpkin
Noah and Daddy in the Pumpkin Patch
Pumpkin Watching
Happy About Pumpkins
This week I've felt like I'm stuck in a glass jar - I can see out, but no one can hear me - no one wants to hear me. I'm simply exhausted from filling out application after application for foundation help, only to receive multiple denials time after time. I feel like I waste hours searching for help that will never come - help that isn't there - that will never be there for Noah. I write countless emails, make thousands of phone calls in the hopes of making Noah's life better - usually without response no matter how nice or how firm I go about it. Which frustrates me even more - being ignored. No one has the courtesy of good customer service, no one corresponds timely, no one returns your calls or even acknowledges your efforts - no one wants to help. I know that Noah is another name to them, I know he's no one's child but mine. I know that no one can feel our collective family pain, that Noah's quality of life matters to no one - I'll try to line up product trials for Noah to no avail. After all I'm stuck in this glass jar and no one can hear my pleas for help for my child.

We went to the pumpkin patch today. It was busier than I had expected it to be on a quiet Sunday afternoon. The layout was different, as it usually is from year to year. The new routes to the pumpkins were exceptionally bumpy and the ground was deeply grooved from one row of pumpkins to the next. Something I don't ever remember it being like before. Noah's small stroller did not do well in the dirt and he grew increasingly agitated upon watching his little brother move freely from pumpkin to pumpkin. How could he not get frustrated at watching something he only dreams he could do? So Chris carried him everywhere and he was happy that he had his dad's legs to work for him. Without wheels is always so much better. Many of the pumpkins were odd, broken, rotten or very disheveled this year. I looked on in a field of orange thinking that most likely these pumpkins would never be picked - they weren't perfect. Had no capabilities of ever being perfect. Green on one side, too lop sided to ever sit to display a carving, sunken in from being stepped on - not to mention overly priced this year at $6 a pumpkin - their destiny seemed doomed. I turned to look at Noah after having taken a picture of little Luke bending down to inspect a crushed pumpkin to find that Noah's daddy had put a small ugly green pumpkin in Noah's lap. Noah looked at it in awe he wasn't digesting the pumpkin's many imperfections but he was embracing its personal characteristics - enchanted with its difference from the sea of orange. Only Noah could truly appreciate that ugly green pumpkin - only he would know the true meaning of what it's like to be different and over-looked.

I don't know what the purpose of it all is. It seems unfair. This life I'm living seems so beautiful and tremendously devastating at the same time. It's almost as if God takes your most beautiful most treasured vase, also known as your life, and throws it hard to the ground and shatters it to a million pieces and asks you not to be sad about it, but instead asks you to put the pieces back together and look past the cracks and shards that have now exist in place of that once intact vase. I'm trying to not to be doleful about Noah's condition. But I can't help but carry this heavy heart with me always. It's a journey that I often have trouble putting into words, explaining to others. The challenges are great - the heartache even greater. I know everyone has their own set of pains. Although it's hard to relate to some people when their only crisis is that Starbucks didn't get their order right or that they forgot to fold their laundry and it wrinkled. And you wonder why God you couldn't break their vase? - you had to break mine...

Noah's moods have been somewhat pensive and yet focused. A transition of seasons still proving to be challenging. A lack of summer routine and activities. And changes in Noah of any kind are always distressing for me. I'm genuinely doing the best I can do and many times it feels like people don't recognize how hard I'm truly trying. I know that being a special needs mom doesn't entitle me to a pat on the back or a hey you're doing a great job - but sometimes you still crave that affirmation.


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

Monday, October 8, 2012

Instant Bravery

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Noah's Head Control at Hippotherapy!  MIRACLES!!!!
Noah Excited that his dragon is riding the remote control
Noah and Daddy and their dragon masterpiece
The weather has officially changed and we're now experiencing some cold temperatures that prevent Noah from his daily walks outside. He is very much like clock-work wanting to go after dinner and we've tried to find indoor places to stroll around in for warmth to make Noah happy. The transition of seasons is always challenging for us. Noah is just an outdoor kind of guy. Always has been and I think likely always will be.

Noah has been doing really well at hippotherapy. His head control continues to improve, and he's so proud of himself. You can just tell he beams for us knowing we're watching him in all his glory. I love his tender smiles that he sneaks in as he's riding in our direction. I think we're bonding better with Lightening. The really great thing is Lightening doesn't take after his name sake and is a really low-key horse. And sometimes Chris and I joke that he must have had his red bull drink because he does light up and really seem social at times. And if you say the word "carrot" in his direction he gets extra perky. I guess I know what I'll be getting a special horse for the holidays. Then we'll really all be friends forever. Noah is also really walking well assisted after therapy sessions. He's just trucking right along. We're rather hopeful that he'll be able to push a walker someday to walk. A dream come true for us. A dream we know and feel is possible with time, patience, and faith.

Since the weather this past weekend was a little less than desirable, Noah and his daddy finally built his Lowe's Shrek Dragon. I was out grocery shopping when they had their father son building bonding moment, but Chris took me pictures step by step of their building so I'd be surprised when I came home with their masterpiece. Noah looked like he was beyond excited and happy about his building project.

 On a whim Chris and I decided to go out to lunch. I don't think we've been out to lunch as a family since before Noah's birth - we've gone out to dinners but never lunch. We picked Mimi's which happened to be the perfect choice for us. Upon on our moment of instant bravery in loading up two children and a packed bag of Noah's lunch, bibs, and spoons from him to eat from we were out the door. Thankfully Mimi's was not overly busy and we were seated right away with amazing kindness from the staff. Sometimes when you show up with a wheelchair you get that look of how you just inconvenienced the world. They sat us at the front table closest to the door which Noah loved because he could watch everyone come and go. It was a day that had a lot of customers in their Golden years which is always exceptionally nice. I have found that those from an older generation usually have tons of compassion and admiration for our journey. Maybe it's because they've experienced a lifetime of their own joys, pains and loss and have learned the value of the true meaning of life's blessings - whatever it is, I'm always grateful for it because we're always accepted and welcomed with open arms. No one stares, it's simply all warm smiles and people even stop to talk to us and compliment Noah on how adorable he is. I love being embraced like we're just like anyone else. I wish we could afford to go out more often I think it's really healthy for Noah to be out and about and a part of the world like that. It was a perfect spur of the moment move that became a great family memory of a wonderful lunch date.

"You can't be brave if you've only had wonderful things happen to you" Mary Tyler Moore 


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