Monday, July 30, 2012

Leaving Eden

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One more step away; a mom in a grocery store, a stranger approaches and looks down at a child and calls him a cripple; one more step away.... feels like I'm leaving Eden.... (the exact feeling that the song Leaving Eden by Brandon Heath describes).

Three and a half years later, and you'd think that somehow I'd find a way to not let what others think or say about Noah affect me. Yet I think that 10 years from now, 20 years from now words can still hurt, unfavorable glances will still make me uncomfortable. I went to Whole Foods the other day to get a handful of items, it was destined to be a rather quick trip. A young man in his early twenties, buying his sushi and acai berry juice with coconut milk so that he could be "the healthiest human being in town," looked at Noah and said he's a cripple right? I was so taken back. I hadn't heard that reference in many years. A cripple? I guess that's kind of like sort of saying he is retarded without really saying it. I replied that he had quadriplegia cerebral palsy as a result of not breathing for the first 13 minutes of life. He thought that meant heart damage, so I knew I really couldn't educate this person, he clearly thought he knew what he was talking about. He paid and said to me "I'm so sorry you won't ever know your son and walked away."

The cashier smiled at me, teary. She knew. She knew what had just happened. But we both chose not to discuss it so we both didn't collapse in a heaping flood of tears. For every mean person, there is usually someone nice who makes up for it. The thing is I really do know Noah. I know him probably better than anyone could ever imagine.

I know he is outgrowing Elmo, and really only likes World World, AirBuddies, and Shrek Movies. I know his favorite color is blue followed by red, I know his favorite place to eat is Chick-Fil-A - the two strip chicken kids meal with fruit pureed. I know he also loves Arby's sandwiches and potato cakes, and that he'll eat every ounce of a good chicken pot pie. He prefers Liberte Yogurt, yet will eat Noosa if it's all I have. He loves trains and airplanes like any other three and a half year old would. He adores live music, and loves it when other children pay attention to him. He loves to flirt with blonde ladies and laughs if dogs bark in his direction. He demands to watch food network especially when drinking a bottle. His favorite chef is Anne Burrell he adores her animation and descriptions of food; he also likes Paula Deen but doesn't care for Barefoot Contessa. His little brother aggravates him when he plays with what he considers his toys. I know that he has two different squeals, one for pain, and one for when he's nervous. I know what his cries mean, which ones are typical toddler tantrums, and which ones mean he's hungry or wants a bottle. He loves Christian music played in the car at all times. I know that Noah would do anything for frozen yogurt or ice cream. He adores chocolate and shredded cheese. I know his favorite activity is taking DVD's off the stand multiple times a day. Noah loves to take walks outdoors and swing. He hates juice, and waiting of any kind. And the list could go on and on. I know him. He is after all my son. Any mother knows their child regardless of special needs or not.

There is no cure for people who open their mouths either without thinking or with the intent to verbally hurt another human being. It is sad that we live in a world where people think that it is socially acceptable to approach someone in this fashion. Not all experiences in public are bad, but they certainly aren't always good and you just never know which way it will go when you leave the house. And nothing can fully prepare you for what you might encounter along the way. And sometimes these more challenging comments can really knock you off your feet and just propel you into the land of hurt quickly. It's going to grow increasingly more hard as soon as Luke starts asking questions about how people respond to his older brother. I want Luke always to be proud of Noah and all how far he's come. I don't ever want someone's cruelty to fuel shameful feelings of what we face as a family.

Noah had his Inspiration through Art Foundation photographs with Lisa Kitto done and for every person that thinks ill of Noah, there is always someone else to come along that thinks the world of him. It is a gift that God sends us people along the way to remind us we are far from alone, and that there is tremendous love for a little boy facing so many challenges named Noah. These heaven sent people, without a doubt, join on this journey that we truly need to help us along the way. A warm smile, a hug, a - I understand and love you anyway helps us go the distance.

The world is a brighter more beautiful place because there is a little miracle boy named Noah in it. Please God let everyone see him for what he is, not what he isn't. Amen.


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

Sunday, July 22, 2012

Cowboy Noah

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This weekend Noah's daddy was invited to go to the NHRA Mile High Nationals at Bandimere with out of town company so Noah's grandma accompanied us for the first time to hippotherapy to watch Noah's progress. We also were blessed with an audience to cheer Noah on this therapy session by Bill and Marge, who came to watch "cowboy Noah." It meant so much to have them come, nearly 3 1/2 years later and Bill has never left Noah's side since holding his tender foot just minutes after coming off life support. To have people rally around Noah with tremendous love, hope and prayer always fills my heart. On our most difficult days it's nice to know that there are people who still care, who still love Noah... just the way he is.

Noah is loving having company visit him, he is full of extra laughs and smiles, and it's great to see how much he has connected with others. We took him to Joe's Crab Shack tonight for dinner. We were asked to wait while they found a table to accommodate a wheelchair. We were ignored for a long while until the hostess turned to me and said it would be a 35 minute wait. Although I knew what she was attempting to do was discourage us from being there and attempting to find a way to get us to leave as there was no crowd waiting to be seated. I felt the immediate pressure of how to respond and decided that I didn't want to make my guests uncomfortable and offered to leave and find another place to eat instead of fight it out and say we had just as much right to be there as anyone else did with a child - special needs or not. Just as I was getting ready to turn to leave, the waiter stepped in and said no I made a place for them. The hostess seemed flustered that I wasn't shushed out fast enough, but we were seated nonetheless. I felt a bit bad that others detected what a moment is often like for us when I'm out in public with Noah, you hate it when your difficulties overflow onto someone else. But so very thankful that they understand and love us for all that we are and accept our special needs journey and all the difficult moments that go along with it. They weren't a bit embarrassed to be with us, even feeling that we were initially not welcomed by the hostess there.

Dinner was great, and our waiter, Huong, more than made up for the rude hostess. His humor, kindness and amazing and friendly service was exactly what we needed. He even invited us all to get down and dance... so I did. After all, in the most difficult moments life has to offer, I always hope that my children learn from my example and can dance through some of the hardest and most painful moments in life.

SSI gave Noah two month's worth of back payments and have withdrawn the overpayment they were seeking form us. I relief, but we are still very cautious and guarded that another overpayment request could come our way at anytime. SSI also warned that Noah's Medicaid could temporarily lapse but that the computer system has been notified he is still eligible. They also "estimated" Chris' wages lower in attempts of preventing Noah from losing benefits in August. I'm not sure why they couldn't have done that sooner, although they say they always calculate higher so that it avoids overpayment problems - their "estimations" thus far have only resulted in us losing benefits altogether. However I'm going to take this good news, pray that it continues and just take things one day at a time.

"We, the one's who are challenged, need to be heard. To be seen not as a disability, but as a person who has, and will continue to bloom. To be seen not only as a handicap, but as a well intact human being."
-- Robert M. Hensel


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

Monday, July 9, 2012

Weekend of Anniversaries

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Noah happy at his Baptsim Anniversary Party

Wheelchair Rentals at The Wild Animal Sanctuary

A Tiger taking a Morning Bath

Baptism Annivesary Cake

This weekend was a anniversary celebration. Chris and I's wedding anniversary was Saturday, and we all decided to celebrate the anniversary of the boys' joint baptism on Sunday. It was a great weekend with lots of unexpected surprises. Much like last year we opted for Texas Roadhouse as our choice of celebration for our wedding anniversary, however this year we decided to actually take both boys there and in dine out. We knew a storm was brewing on the horizon, but figuratively we are rather used to storms in our life. I am amazed with the bravery and courage that Chris and I have formed in our marriage as a result of unexpected events and trials in our life. Sometimes you have this attitude if I got through all that - then I can get through anything ahead. And that's not to say that it's not hard along the way. We just refuse to stop going when it comes to all that life demands of us for the sake of Noah.

As we arrived to dinner the storm had hit bringing rain and wind in a fast and furious downpour. We should have realized something was a muck when we seen the staff feverishly running outside, but thought nothing of it. When we were done with dinner we realized what the fuss had been about... the parking lot had flooded with about 2 feet of water. Knee deep. And of course the one time we opt not to park in handicapped parking because a regular spot was closer and the van was in water. Luke and I braved it to the car with my flip flops suctioning to the asphalt as I walked through the water. I was able to get the car out of the water, and pull closer to the door so we could load Noah in safely. Noah had a great time, but maybe it's due to his namesake - water and flood don't really bother him. He was amused. And we have a memory of remember when we went to dinner and the parking lot flooded...

We decided to take the boys to the Wild Animal Sanctuary based upon recommendation, which is the oldest and largest nonprofit Sanctuary in the US dedicated exclusively to rescuing captive exotic and endangered large carnivores - who would have guessed it was literally in our own backyard of Colorado! We all got up Sunday morning, looked at the grey and cloudy skies and said to ourselves we have time to beat the rain. So off we went. God held off on his rainstorm Sunday and we were thankful, it provided us with cooler weather without sun for a magnificent morning outing. The staff was tremendously nice there. They give everyone an orientation before entering the mile walkway, and usually wait until they have a larger group to do so, however knowing that Noah doesn't do well waiting, did one quicker for us. I was also tremendously impressed that they have a wheelchair, walker and handicapped accessible equipment area there. In all the places I have been I have never seen handicapped rentals. To me that said instantly we have big hearts and we want to welcome everyone. And some of these handicapped wheelchairs are even powered. They have made it possible for all types of needs to go. I was in awe. There is not one set of stairs there. Stroller and wheelchairs are a breeze. And it is especially wonderful for Noah who can't get up to look at animals and here he simply can look down to see everything as you walk above all of the animals. It was incredible to actually see these tigers, lions, and bears in real habitats, there was something very different than viewing them at a zoo. They were all very genuinely happy, active and you felt like you were on safari. Listening to lions roar in all their glory, gives you goose bumps in how wonderful and powerful they are. We watched more bears than I could even count play around, tigers taking baths and playfully batting at each other, and wolves all huddled lovingly in their pack. You can tell a lot of love goes into the Wild Animal Sanctuary. They care about the lives of these animals tremendously. Some of them of course have their own special needs as many were neglected or abused so they are being rehabilitated in a sense to join others out in open space and are being lovingly reintroduced to larger spaces and prides by having adjacent large cage accommodations to get them better acquainted with their surroundings. There is also a large tent area at the end of the walkway that offers a covered area for eating. I would recommend packing a lunch simply because they really didn't have things that Noah could eat. They are great about having snacks to get you by in a pinch, chips, soda, candy bars and such - but they didn't have anything like ice cream in a cup or soft serve that Noah could handle. But there are three nice large areas where you can eat overlooking animals on this 720 acre lot and they welcome you to bring packed lunches. It is huge - sometimes so big you know you can see a camel in the distance or a lion sunbathing - but they were really out there on the plains. Noah had a great time. I think he was a bit bored in the beginning until he realized that he had to look down to see things. Then we seen the giggles and smiles.

After The Wild Life Sanctuary it was off for a quick haircut for the boys to make them handsome before we celebrated the annivesary of their joint baptism. We didn't do anything super big, just family and Godparents, it was a wonderful afternoon filled with lots of love. The boys got little gifts almost like a tiny Christmas which was extra special, and we were invited over to their Godmother's house where she thought of every comfort detail for Noah possible, a soft plush blanket rinsed and washed twice to make sure it was perfect for Noah and his ongoing nummular eczema battle. And even pulled out a blender knowing Noah would need pureed food. It takes a very special person to love Noah that much to think of him and what he'd need down to every little detail. I probably can't even count the number of people who'd be willing to love Noah in that way on one hand. They are the people that are treasures to us and help us on this journey more than they probably even realize they do. They are always there to lift us up, encourage us, and give us this amazing love regardless of Noah's many challenges. They don't ever see him as different. He is included as if he's just like everyone else.

Unfortunately the news on the SSI & Medicaid issues aren't as fantastic as our weekend was; they lost the paperwork I sent in for May and claim they couldn't read June's faxed paystubs. I emailed them documentation proving that I indeed did mail everything; down to a copy of the envelope I sent it in. They told me the reason Noah isn't eligible for benefits in August is because August is a five week pay period and they of course are guessing at what Chris "might" make, although I reminded them that they keep telling me their calculations are two months behind which would mean anything Chris made in June would determine August's payout. No response on that as I think they come up with different stories all the time - they really have no idea what they are doing and I think that there is no one competent at that agency. I was a government employee once I can guarantee if I mucked up someone's life as much as they are doing to us I would have been fired in a heartbeat. There should be some sort of accountability for doing a good job, and there isn't when it comes to SSI and Medicaid. I have no idea where we stand now. I have confirmation that they received my emails they said they'd get back to me that day and that was almost a week ago. Noah received no SSI benefits in June. However his Medicaid has not yet lapsed. They say we'll get something in July and then nothing in August. Although according to my calculations Noah is due benefits continuing on. It all feels like a waiting game until the next set of paperwork crap comes in the mail.

There is a way that nature speaks, that land speaks. Most of the time we are simply not patient enough, quiet enough, to pay attention to the story. Linda Hogan


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

Monday, July 2, 2012

Continual Hurdles

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As hard as I try, and I really do try, there always seems to be something lurking around each corner of our lives that just bring tremendous stress and complication to our lives. No surprise today was the day for my SSI notices. I am rather surprised they went a few weeks without correspondence rather than days, but I knew it was coming. I could feel it - sense that once again the bad notices were destined to hit my mailbox. Two notices arrived today, another overpayment demand for $52, and a notice saying that come August Noah isn't eligible for SSI, therefore again compromising his eligibility for Medicaid and once again risking him going uninsured. This terrible vicious cycle that I just can't get us out of. I have zero idea how they are coming up with these figures. They have to be guessing - or estimating or whatever they do because here it is July 2nd and I haven't even had a chance to fax them in Chris pay stubs for all of June. And if they run two months behind that means June would calculate what Noah would receive in August. I cannot express or impress upon you enough how broken this system is. I already fear Obamacare, as the reality of it is, who really cares about Noah and his benefits now? Do you think that it will be any better when we add millions of more people to an already stretched program does nothing to guarantee access to care, given the widespread access and quality problem which already plague the Medicaid program. Not to mention that only 60 percent of healthcare professionals will even accept Medicaid. Money has to come from somewhere, and they're already trying to cut Noah out of every corner.

Noah received his sleep safe bed this week. That was also an excursion and complicated process. His bed and toilet seat have been ready and available since the end of May, but because of vacations, excuses, insurance whatever the case may be we had to wait until June 27th for delivery. Of course as things often go I receive a call after the scheduled time for the items to be delivered informing me that they didn't have a truck big enough to deliver Noah's full size bed. They finally dropped off his toilet an hour late and then informed me that it was likely Noah's bed wouldn't even fit up our staircase. I was told I'd likely have to consent to ordering a smaller size or having it dismantled altogether. The bed then arrived two days later with zero problems with its size or getting it up our staircase. The toilet seat Noah still can't use because it doesn't have back sides, a vest harness or a commode container, all of which I will need to wait on. I don't feel like it's too much to ask for someone to just take an interest in making Noah's life better. To think gosh if this was my child, the service you'd want to make sure he got. But it just feels like he's another number in the system. Does anyone even care about what he truly needs, about making his life better? Equipment vendors see Noah as a dollar sign, SSI and Medicaid see him as a financial burden on the state, and I shutter to think what value Noah's life will have amongst medical professionals when they cut corners, costs and are flooded with people in waiting rooms. Will someone care about him then?

While we are relieved that the sleep safe bed came, Chris had to make some alterations to it to make it quit rattling as Noah moves around a lot in bed and likes to kick and hit the sides, he's like an acrobat in bed, flipping, rolling, turning. He most definitely needed a full size to move about like he does. Part of me is relieved that after years of waiting and trying that Noah finally scored something he needed while another part of me is slightly sad that he even needs such a bed - after all it's like a fancy hospital bed. The rollercoaster of emotions that you experience is phenomenal and I'm not sure anyone could truly understand unless you were living it. I crave more than anything to find ways to offer Noah a normal childhood, to be a normal child. I found a place willing to make Noah a handicapped accessible playhouse... but the starting price tag is $3820 and would go up from there with additions and accessories, I still dream of obtaining him a freedom concepts bike so he can ride a bike with Luke. I am trying so hard to put some "normal" in our lives. To feel like we're not so different, not so on an island of our own. But the price tags on anything for Noah is like buying a new car. It's so sad that they access these outrageous costs to families that really have the least due to what special needs does financially to a household income.

Yet tomorrow is another day, and I have to keep trudging on, I have no choices in this. As worn down as I am, as defeated as I continually feel, Noah needs me to keep trying for him. I'll contact SSI once again and see what recourse if any I have to fight the latest news in the mail.

"Courage is being scared to death - and saddling up anyway!" -John Wayne


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