Friday, September 24, 2010

Angels are Still There

Bookmark and Share
Last night I met Brigitte, with Premier Designs Jewelry for a quick cup of coffee before Noah's scheduled bath-time. She wanted to give me the proceeds from the sale for Noah, and gifted me with 3 beautiful crosses, one with Noah's birthstone, and a ring that said "hope." It was such a quick little get together, but it was so nice.

As I drove home under the bright light of the full moon, I thanked God for Brigitte, for Tedd and Jolynn at the Blue Canyon, for every single person out there that has helped us or wanted to help us but couldn't, for those that have prayed for us and loved us. Minutes after I had finished my mini-thank you to God for all the incredible people he has brought into our lives, my car was struck from the front and side by a driver that had run a light. I did not see the car, but felt a terrible impact. The car grinded with a horrible noise instantly, and my body felt surges of pain like lightening in different parts of my body. But God sent angels, I could move everything, I could talk. The first paramedic to my car talked to me through my passenger side window. I think he probably asked if I was okay, but my response was I have a special needs son I need to get home to. I remember him saying he understood he had a special child too, but said that he would make sure that family got word so they could take care of him.

I looked at that hand crochet three-dimensional snowflake my mother made for me that hung by my rear view mirror when I turned sixteen and was able to drive. A mother's heart made in a lucky-charm designed for protection. The corners are starting to crumble after all these years, but it has remained a symbol of my mother's requested safety in all my years of travel. I looked down at the crosses that Brigitte had just given me, asking anyone that would listen that they please don't take the car before getting them out. I made sure that the metals of all the saints that were given to me after Noah's birth that I carry with me came. All these objects designed to make us feel like we are protected by ultimate love from all of those around us. I'm glad I was able to thank God before the accident, so he knew in my heart how genuine and appreciative that I was that he has sent so many people to help Noah. And I remain thankful that he allowed me to be able to come home to my little Noah and family.

The entire rescue team, paramedics, police that first responded, nurses, technicians and doctors were all incredible. They all took really good care of me, and were so kind and reassuring. I should heal in the days to come. The police department notified Chris that we'll need to replace Noah's car seat as once a car has been in an accident, the car seat is no longer safe. Please continue to pray for our family as we approach yet another challenging time in our lives with the loss of my car and dealing with insurance companies.


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

Sunday, September 19, 2010

Touched By A Miracle

Bookmark and Share

Tedd & Noah

The Best Hug

January 5, 2009, days before we even would ever know if Noah would get a chance to ever come home, I received my first story of hope in a miracle. A lady by the name of Judy received Noah's story from Chris Vanderveen, a news reporter at channel 9 news. The news reporter had done a story on her daughter's survival and recovery and put her in touch with our information. A story that started more than twenty-years before Noah's birth. A little girl named Jessica was born. At the time the neonatologist had pronounced Jessica dead, she had been brain dead and without a heartbeat for 45 minutes. Ten minutes after pronouncing her dead, with all oxygen and respirator having been removed, a doctor seen Jessica blink her eyes and he attempted to resuscitate her.

They gave her surviving daughter a very poor prognosis. They believed that she would be so neurologically impaired that she wouldn't be able to even suck her thumb, she could not swallow, they fed her by gavage method. Institutions were suggested to her parents, she had seizures and her muscle tone was poor. Her development was very delayed and she didn't track with her eyes. Little Jessica went on to have two cardiac arrests and seven neurosurgeries, she has hydrocephalus, and a shunt in her brain and also had a portion of the temporal and hippocampus portion of her brain removed to stop uncontrolled seizures. If that wasn't enough, Jessica also had a arachnoid cyst removed that was crushing her brain, and had pneumothorax in each lung because her parents chose to keep her alive with a respirator after she was resuscitated.

Although Jessica had many trials and difficult times in her growing years, she is now an an independent adult. Today Jessica has her Master's Degree, a full-time job, and lives in Las Vegas. And I had the privilege of meeting this Miracle for the very first time at Noah's Pasta Dinner Buffet. She traveled all the way from Las Vegas, and came with her entire family to Noah's Fundraising Dinner. She is beautiful, her personality radiates a room. She is so very loving, sweet and kind, not an ounce of bitterness resides in her heart for all those years of her personal struggles. You cannot detect that Jessica ever had the start that she did. She is what miracles are all about.

Having two very special people in one room, two that were not supposed to survive, two miracles years apart. I can only hope that twenty-years from now Noah's story will have the same effect on another mother just as Judy's story of her daughter, Jessica has had on me. That Noah will continue to grow and surpass all odds, that he too will one day be living independently, and successful in everything he wishes to accomplish.

It was so wonderful to see so many at Noah's Pasta Buffett, there are so many that I didn't know that came that gave of their hearts and time for a little boy named Noah. I wish I would have had an opportunity to thank everyone individually that came for him. And to even thank all of those who weren't able to come but continue to pray and think of our family always. Because of all of you, we're able to make our first deposit in paying for his sensory classes and warm water therapy. We could not have given Noah this opportunity without all of your love and support. We will be forever grateful to each and every heart out there that gave to help him.

Noah got a very special treat, and was held by Tedd, one of the owner's of the Blue Canyon Grill. Tedd is tremendously tall and Noah loved being up so high. He cuddled and hugged Tedd as if he were his very best friend. It was beautiful on so many levels. To watch Noah have the ability to hug, and to know that he was in the arms of a forever friend.

Tedd and Jolynn at the Blue Canyon have hearts of gold. They were so loving and even made sure each child that came last night to Noah's Dinner had a desert. I don't think either of them truly realizes how special they are. But they are the most amazing couple, and we love them dearly. None of this would have been possible without their incredible hearts.

"What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal.”
~ Albert Pike


Thursday, September 16, 2010

The Bleeding Heart

Bookmark and Share
I've shed plenty of tears behind closed doors. Today was the first time my heart flooded and the tears were uncontrollable in public. I hate that I exposed my raw spot. I try to keep it closed in a little box, and nurse those feelings carefully always in private. No one really wants to see a special needs mommy crumble. We're supposed to be little superheroes. Able to handle all that God throws our way. The strong shouldered, the habitually and overly positive, displaying bumper stickers and signs of hope, faith and belief in all things. We are to be the rocks that nothing breaks against.

Noah was very upset today over the kidwalk, possibly from having shoes on, maybe it just traumatized him in general. I really don't know. This is the second time he's been in one. The first time really went reasonably okay other than he was still a bit too small for it and didn't touch the ground all the way. Today he was pretty hysterical with lots of tears and snot. My heart is broken for him. I am broken. I am broken that he even needs such a thing, that he can't move on his own. That he can't sit, crawl, walk, or even talk to me. I hurt, I ache, I long for him to have everything that he should have had. The hardest thing for me to accept is I cannot fix this. I cannot do anything to make it better. I cannot undue the damage caused to him at birth. And then you feel like you're torturing him with all this therapy, trying all these things to help him. I can't handle it when he's distraught. I can't make it better, and that is my job as mommy to make it better. We were loaned the kidwalk which didn't fit super securely in the back of my car. Driving home I just kept asking myself how am I going to do this? How am I going to make this all work?

I feel like I could cry for an eternity. Life has compounded Chris and I with all of these unexpected problems. Never in our lives did we ever expect things to take this turn. We're doing the best we can with some really difficult circumstances. Putting on those brave faces each day, trying to come out swinging, you can't raise the white flag and give up. That's not an option, you can't bail out or surrender. You can't even ask for a timeout. That isn't possible when you have a special needs child. You trudge on.

I'm sure there are some out there that read Noah's story and take pleasure in our pain. To know that life isn't all cherries and roses all the time. Those that thrive on chaos. Chris and I love the problem-free life. We want our happily ever after. But I would be lying if I painted this picture all the time of nothing ever being wrong. We want Noah to thrive, and be happy, to recover in any way possible. Some that have CP tell me that I should be so happy for Noah, that CP isn't such a bad thing. But to a parent that watches their child do nothing but struggle it's a terribly crushing thing.

It's the same if you have a terminally ill family member, or someone suffering from alzheimer's or muscular dystrophy, or a cancer that slowly takes the person you love and know. It's the same pain. Because you are helpless to change it, to fix it, to make it how your heart says it should be. Is life about accepting it all? I don't know. I want the answers, I want that life book that God fails to provide you with as a guide. I want to know why some are so charmed while others struggle so deeply. I'm not mad. In all of this I've never ever sat down and cursed God for what he did to Noah. Not even in the beginning of those 17 days in the hospital. Never once did I ask why. Never once did I tell him how unfair this was, never once did I yell at him for what happened. I prayed hard he'd let Noah just stay, he did. I asked the angels to help him but not take him, and they did. Should I have asked for them to make him whole too? You just ask for a little, I got a little. Now I feel guilty I want more. I want Noah to be okay. I want to live to see him walk. I want to live to see him talk, to run, to play ball, to say I love you.

Please God, hear my prayer today and please put a band-aid on my bleeding heart.


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

Wednesday, September 15, 2010

Little Boy Blue

Bookmark and Share
Noah attended his very first official sensory class. I think it went beyond fantastic. There are only two other children and mommies in the class. All little boys. Noah is the most physically challenged, but each child brings this beautiful presence. Together the three of them make up a sweet little class. One of the little boys I suspect may have Autism, although none of us exchanged diagnosis with each other. I know his mother felt badly about his behavior and kept apologizing. When you're a parent to a special needs little one the last thing you ever need to do is apologize to someone who knows exactly how hard this is. I just wanted to hug her and tell her, she's doing the best she can do, and she's a great mom for trying all that she is. Maybe by class two or three I might do just that!

Noah read books and touched the fuzzy characters on each page, we played on therapy equipment, swings, trampolines, played with trucks and cars on a ramp, Noah would kick them down with assistance to the boys at the bottom and they would catch the trucks and bring them back up to Noah to kick down. I loved the fact that Noah was playing with other children, even if he needed help to do it. And he giggled and laughed and smiled the whole time.

We sang songs, played ring around the rosie, made a hammock and took turns swinging each little one in it. We also went outside and finger-painted in the shade. Noah came home blue, I came home blue, our clothes came home blue. But it was so worth it. I could care less really that we were all stained up. We both had a great time and that's all that matters.

I'm really looking forward to the rest of the classes, although it's just a six week class. I think it's going to offer us a little bit of fun for a while, and healthy stimulation for little Noah.

Next week we'll be adding the warm water to Noah's routine. Our already busy schedule will get a little bit busier. He hasn't been in the water for a few weeks, so I'm hoping he'll remember that it is a fun sensation and that we won't have to get reacquainted with it all. Noah will also be trying out the kidwalk again tomorrow, and with good luck will be using one on a trial basis the week after and then if all goes well my hope is that one will be ordered and he'll have his own. It's been many months since Noah was last in a kidwalk. He walked the first time in it, I hope he'll do it again.

"All this sensory input, which begins in the brain, has its effect throughout the body"
Norman Cousins


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

Wednesday, September 8, 2010

Staying Positive

Bookmark and Share
Everyday Chris and fight the good fight trying to make sure all of Noah's needs are met. We think of really nothing else but Noah. We've abandoned all our wants and dreams and turned our every intention into helping Noah. Every single penny we can rub together, every resource we explore. We've lined up various therapies for him, hoping insurance would help, knowing in many cases we were on our own to fund them. There are lots of things sometimes I hold back from discussing because sometimes you have that theory if you talk about them then the monster will grow or something you say will in some way be twisted and used against you. If somehow you can hide what lies underneath then maybe it will just all go away altogether and get better.

It doesn't get better whether you discuss them or not. What is, still is at the end of the day.

Social Security has chosen to audit us, something they say they do to everyone periodically, yet somehow I still feel like I have this red target on my back that I simply cannot see. I was re-interviewed on the phone, asked for all of Chris' original pay stubs, original letters confirming I had to quit my job to care for Noah. I answered the same as I did for Noah's initial intake nearly fifteen months ago, honest in everything I said. When I received Noah's reinstatement questions back in the mail for me to review I knew right away what was happening. They were calculating Chris' gross wages, not net, not his take-home pay like we were previously asked for. I called to correct a handful of minor errors, our telephone number, the fact that Noah couldn't have resided here since 2005 because he wasn't even born then, and to of course inquire about Chris' income calculations. I was told that Chris' gross income on his paychecks were the determining factor for SSI, and as such his gross put us over the guidelines from the very start of Noah's SSI. As a result we will now be required to pay SSI back, and that Noah's SSI award could go as low as $1.00 monthly if they even keep on SSI at all. It's so ironic that the amount you claim on your income taxes has no weight, no bearing at all. Two different government agencies using two different income guidelines to determine how much you made.

Chris' gross has to stay below a certain amount monthly and if it goes over we are disqualified. I know that is inevitable, as you can't go to any employer anywhere and say sorry can't work overtime, because it will kill my kids SSI benefits. The world doesn't work like that and SSI knows it. They know he's bound to go over their "specific amount" eventually hence while asking us for his monthly pay stubs from here on out. I don't know how this influences Noah's Medicaid, my gut instinct says it does or will in some fashion. You would think I would know all the rules inside and out about all of this, but I don't.

Nothing about our lives is secure in anyway. Nothing. Each day the rug gets yanked out from underneath us in some way. You'd think we'd get better rolling with the punches, but we don't. There have been many nights where Chris and I simply hold each other and cry together because we're trying so hard, working so hard, loving each other and Noah so hard. You start thinking is it time to find food banks again, do I call and cancel all the new therapy I lined up for Noah, what does one do? Taking SSI away is a huge. It will impact us significantly. It takes away what little we were able to do for Noah.

There are millions of us out there with special needs kids. No one is helping us like they should. Unless you are independently wealthy prior to your special needs little one you will struggle financially. All children are expensive, but you truly have no idea how expensive a little one like Noah can really be. Noah's parent toddler classes will be around $360, his water therapy if I pay weekly is $85, if I pay monthly or on another schedule it's $160 weekly. Insurance won't go near any of that. You still try to balance all your other bills, phone, water, utilities, food, trash, mortgages, car insurance, car repairs... plus all the additional therapy expenses.

Staying positive becomes often unattainable. I'm always waiting for the other shoe to drop. Because it does and it will, you just never know when.


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

Tuesday, September 7, 2010

Flight & Fire

Bookmark and Share

Noah has been very happy these last few days. He's been quite the little character. He was in his stroller and purposefully kicked at each of my hands with alternating feet on purpose. He was intentionally trying to kick each one of my hands when I placed them near each foot. He thought it was a game, and I couldn't believe he could attempt such a thing. We'll have to practice that more, maybe it might help him down the road with his legs and feet. I hope it is something I can get him to repeat.

Last night Noah got to watch the slurry fire fighting airplanes at the airport take off from the runway and load up for each run. The planes would alternate just as one was leaving one was coming in, they weren't skipping a beat trying to fight this fire that we have going on close by. Noah loved all the action, he loves any opportunities for airplanes. I of course covered his ears, He would have probably been fine otherwise, but it's what mommies are supposed to do - protect all body parts the best they can. And he didn't seem to mind my extra caution with his ears, he just was so into his airplane watching moment.

We're hoping that the fires get under control soon, we hear reports of property loss and hope that everyone closest to the fire stays safe. The smoke has been a little difficult to handle here at the house. It sounds like more slurry planes are going to be added to the fight today, however due to the smoke and the smell, I'm not sure we'll be watching the skies as much as we were able to yesterday. Noah may just have to settle for listening to the action without a visual.

Noah also had a long night last night, he was up for a good while for no good reason. Noah still doesn't sleep through the night, we've had maybe 2 or 3 times in his entire life where he managed to just by luck, but we're up at least once, most often twice each night giving him a bottle and soothing him back to sleep. Noah still doesn't put himself to sleep. We have to hold and snuggle him until he falls asleep. He still has that startle/fall reflex so when he falls asleep he'll startle himself awake, and he has a hard time calming his arms and legs down unless you're holding him. I often wonder if this will get better with age, or if we'll still be trying to hold him years from now so he's able to fall asleep comfortably. I try to take comfort in knowing that even children that do not have any physical problems like Noah, still aren't good sleepers at his age. Yet in the mornings it often leaves you feeling like there isn't enough caffeine in the world to help you make it through the day.

"I feel about airplanes the way I feel about diets. It seems to me they are wonderful things for other people to go on."
— Jean Kerr