Wednesday, November 25, 2009

We Are Thankful

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Noah could quite possibly take first place for not sleeping through the night. I'm still up about every two hours and then it takes an hour or more to put him back to sleep each time. We've exhausted just about every technique suggested, and nothing works on Noah. We keep hoping that one night he'll magically outgrow his need to wake up so often, as he winning the sleep war.

Chris and I think that Noah is starting to expand his vocal noises more, still no words, although we still swear at times he tries to mimic mamma and hi, but we really aren't super sure. But at least he is acquiring different sounds so we are still hopeful one day he'll be able to talk up a storm.

I took Noah to Sears to get an outfit for his special meeting with Santa, and they had a coupon that day for free pictures. I inquired thinking that either the offer would be too good to be true, or Noah wouldn't be able to handle such an event. When I asked about it the lady was so very sweet and said they'd make any accommodations necessary for Noah. So I booked us an appointment the following day. They gave us our own private room for pictures, his own personal baby wipe sanitizing pack to wipe milk reside and his mouth bubbles, and they used hand sanitizer when they had to touch him in any way. They were going to try to get Noah to sit with the help of a sitting block, but she quickly realized he was going to simply arch right out of it. Noah doesn't sit at all, even with leaning up against something. He either arches out of sitting or falls over on either side. I mentioned Noah wasn't meeting milestones, and the picture lady was so sweet and said milestones were over-rated anyways, and that when you have your first baby you want them to get there quickly because you're excited, but then when you have your second baby you don't want them to meet milestones so fast because that means they are growing up too fast. It was nice of her to say such things, as there are times when the fact Noah can't do much does tug at my heart.

It's amazing how happy Noah was throughout the whole session, pretty much all smiles. I think the pictures turned out really well. In pictures you can't tell Noah has any difficulties, he looks just like any other baby. We could tell in his individual photos that he couldn't sit up (as his daddy was holding him under the blanket) and he was leaning a bit, and you can kind of tell with the way he holds his hands if you look closely that other babies don't position themselves like that.

I still keep holding onto the hope that the brain does amazing things. I read everyday amazing stories about how the brain can find ways to recovery. Hopefully as Noah grows bigger his muscles will get stronger and he'll find a way to do everything that any other child can do. He is thinking and understanding and that in itself is something they said he would never do.

We hope that Noah's update finds you all doing wonderfully this Thanksgiving Holiday. We send our best wishes, love and thanks to all that have helped us throughout the year. Our dear friends Bill and Marge who fed us scrumptious salmon and turkey and prayed for our family when times were the roughest, JoLynn and the Blue Canyon for making us a meal when we had the hardest time finding ways to eat through our pain, Claire who made us a meal and filled our freezer with meat, the love of my mother who must have paced and walked a million miles in my kitchen to soothe a distraught baby and always finds ways to continue to give of herself, the beautiful mothers I've met along the way, Lindsey, Pam, Susan, Alicia and their special needs children, my sweet dear friends Heather and Joey for hosting a benefit in Noah's name to help us with our medical bills and all that attended and gave from their hearts and donated to the silent auction, Pam and There with Care for their support, groceries and diapers for many months, all of you that sent Noah care packages, clothing and toys, Noah's therapists who cheerlead him on every week, Julie, Beth and Nikki, all of you that I wish to have the pleasure to meet someday that have left messages and filled Noah's guestbook with love, blessings and prayers. We will forever and always be thankful for each and everyone of you who come to Caringbridge to read Noah's story. We need all of you and are so thankful that God sent us such a team of wonderful people. God Bless you all.

Stacy, Chris & Noah

Wednesday, November 18, 2009

Scatter Kindness & Gather Love

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Noah had his occupational therapy Monday and he did pretty good. I think he put on a better show last week with his pumpkin pie eating, but Julie always has such patience with Noah's various moods. Noah is great about vocalizing when he's had enough of something and Julie is always quick to move on to something else to make his day happier. Julie is so very sweet and tender with Noah.

Noah needed a distraction to focus so we went and watched some other children doing their therapies in the big room. Julie of course being so very thoughtful even asked me if I felt comfortable with Noah joining the big room since we're trying to keep Noah germ free. It wasn't overly crowded and everyone seemed very healthy, but it was so nice that she asked, even though I really didn't give it much of a second thought. They have such respect for their parents at therapy. They never tell you your worries are too small, never make you feel like a shrinking violet when you just simply need to express you're having a rough day, they allow you the freedom to express your pain, and they genuinely share and celebrate our small achievements.

I've found tremendous joy and comfort over starting the holidays early. I put up both Christmas trees, one for Noah with little children's ornaments on it and one in the great room. I've never in my life started putting Christmas up so soon, but it feels fantastic, I'm excited and Noah's loving it.

I also heard today that Noah will be getting a visit from Santa at home! I am beyond over the moon about it. It was my family's tradition to always have Santa come to the house every year with a little bag of candy for me and my brother. I had to enter a lottery for Santa to come to our home, and I got the call today that we are winners! Santa is coming - a dream come true. It's going to be a very magical moment. Noah's grandma bought him a very special yard decoration, it's a inflatable Noah's Ark, it's the cutest thing ever, and quite fitting for our little Noah and his first Christmas at home. She also got him a snow globe that swirls continuously with music and his very first train set to go around the tree. He is fascinated. He loves the lights, and music and it's making my day so much easier because there are so many new things to show him.

Chris and Noah spent at least a half hour just sitting peacefully watching the train go round and round. Noah anticipating it coming around the corner for him to see each time. It was precious. I love the moments where I lose myself in bliss.

Noah got his very first "special card" today from his therapist Beth, I was so excited for him. Especially sweet since she had been the one to inspire the idea. She's always full of such positive energy and thought, and it's great to share concerns about Noah's development with her.
I found myself once again hunting the internet upon finding that one of Noah's bottom baby teeth is coming in discolored or almost black at the tip. From what I could find it could be a variety of things, and there apparently are a lot of moms that have kids with the same problem, which seemed comforting. I know it's not teeth rot, as Noah can't hold a bottle in the night, nor has he had enough sugar to cause that. Some articles said it was more likely from excessive iron deposits, general staining, or a result of medications or antibiotics that he was given during his hospital stay. In any event it sounds like something I don't need to worry too much over as it will not have any influence on his permanent teeth. I also stumbled on two sites that had some positive stories about children with HIE injuries at the time of birth. All underwent brain cooling, one little girl was without oxygen 14 minutes, while another boy was without oxygen 30 minutes, both today are leading normal lives, without any signs anything ever happened. I'd like to hold out hope that will be the case for Noah too. Of course I don't know if they met milestones on time or not, or if they looked like Noah in anyway as far as development. I know every person with a brain injury is different. Noah will get better, I just wonder sometimes how much better? Will he ever learn to sit, crawl, walk and talk? I keep waiting for him to learn to sit, but we feel so far away from that still, and we're fast approaching his first birthday, it feels like a race against time to see how much we can accomplish before his second birthday when all seems almost predetermined by then.

With the holidays coming I've seen so many organizations donating and gathering resources to help those in need. I can't express enough how important it is to help others. Without all the kindness and help we received we could not have made it this far. We remain eternally grateful. Please remember to give if you see the people ringing the bells, or if you get an offer in the mail to help provide a meal, or to help at your local church, it means so much to people in need. If you can help it could make all the difference in someone's life.

Thank you to all that continue to leave such sweet messages of support, encouragement and love for Noah in his guestbook, they mean so much to us.

I found this saying on a notepad I have and thought it was sweet:

"Scatter kindness and gather love"

Stacy, Chris & Noah

Saturday, November 14, 2009

Letters For Noah

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Noah has had an exciting week. Monday he was able to get a spoon with a looped handle to his mouth in therapy. Granted he still needed assistance, but he kept his elbow bent, something he rarely is able to do because his arms are so stiff. He stayed relaxed and focused on the Costco pumpkin pie at the end of that spoon. Unfortunately I was unable to order the exact spoon we used in therapy because it has been discontinued but found a comparable one instead. So for $3.49, we're waiting for it's special arrival in the mail. It is still my hope that with lots of work, Noah will one day be able to feed himself.

Noah has also becoming more aware of mommy by the minute and has decided he no longer wants to be in the stroller upon looking up through the mommy window and realizing I'm there. He instantly breaks out in hysterical tears until I pick him up and make his world better. So we've been doing walks in his snugglie, which is hard on my back considering he's getting so heavy. Right before the weather turned cold this week, we went for an afternoon walk. We walked down the bike path behind our house, and looked at all the leaves still on the ground, Noah loving the sound of them crunching beneath my feet. He also got to look at the famer's highline canal that has been emptied of water for the season. It's always so interesting to see what has landed in there during the year. Children's bikes lay lifeless and rusting at the bottom. Probably thrown in by a bike kidnapper. Dead branches from the heavy summer storm lay sprinkled about, trash and pop cans lining the edges, a bearly reconginzable baby doll laying sideways as if asking to be rescued.

Continuing on our walk we crossed paths with a older lady possibly in her late eighties. She had completely white hair, curly but not styled. Simple glasses that looked to have been recently cleaned as the sun caught them and made them shine. She had only two upper teeth but smiled big regardless. She stopped us as we were walking, gently lifted the brim of Noah's camouflaged summer fishing hat and said "that's quite the bundle you have there." I exchanged a smile, and she continued "he's a lesson for you, a lesson for all. He has been brought here for a purpose." Knowing nothing of Noah's condition, I didn't know what to say. I asked how she knew and she said she just did. I never did explain what made Noah different, she said she'd see me again and turned and walked in the opposite direction. I looked back until I couldn't see her any longer as she rounded the corner. Her lace blouse wispy in the breeze as she held a lavender winter coat with pink cuffs at her waist. I've been digesting that meeting for the last few days. I should have asked and talked to her more, should have at least gotten her name. I was in awe, left speechless by her unexpected message.

Wednesday Noah was able to do his physical therapy on the swing. I'm so thankful that platform swings exist. Noah is completely focused when he's on the swing and doesn't realize that he's actually doing therapy and working hard. Noah's therapist Beth is like having tea with a friend every week. We talk about small things, yet our conversations seem to keep me feeling grounded and connected to the outside world. She told me of a patient that onced asked her how her life was better for knowing her and what lessons she had learned from her.

That conversation planted a seed about a very special project I'd like to do for Noah. If Noah could talk, I think he would very much ask similar questions. What have I taught you? Why are you better for knowing me? How has my story changed your life? Noah's first birthday is in about six weeks, and Christmas only two days after. As a gift to Noah, I'd like to invite everyone who has come in contact with Noah's story to write him a letter or send him a personal card telling him how he's changed your life, what he may have taught you, or how special he has become to all that continue to follow his story. I want to gather these cards and letters for a special scrapbook that I'm building for Noah. It will be something that we'll be able to treasure for years, something that may help Noah discover his life's journey.

For all those interested please send these special letters and cards to:
Noah Mitchell Warden
c/o Stacy Warden
PO Box 746653
Arvada, Colorado 80006

We will put them in a special stocking for Noah so that he has them as gifts for Christmas Day. It's one of the greatest gifts for him that I can think of - to know how loved he is by many and encouraged by all to keep being the "The Little Engine that Could."

Stacy, Chris & Noah

Sunday, November 8, 2009

Always Live Out Loud

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This week has been reflection for me, I've looked back, looked at the present, and attempted unsuccessfully to avoid looking at the future. There is so much I need to learn about, services that Noah may be eligible for, help that could provide for our family better. There's no one to teach me these things, no college courses for mothers that happen to have children with special needs. Yet even if they did we wouldn't have the time to attend. All week long I've been terribly annoyed with the supplier of Noah's duocal supplement. They call me often daily for surveys and inquiries. Surely they can't be the only outfit in town that supplies duocal. And they send me the supplement like it's going out of style. Two cans weekly when each can lasts one month's time. Why? Probably so they can bill Medicaid for more money. No one explains our options to me, maybe they assume I already know, but I don't. I'm navigating blind. In any event Noah is gaining weight and they anticipate he will no longer need the supplement by year's end. And I will have an entire cupboard filled with this stuff by that time.

Friday evenings have almost become a ritual for me to handle our grocery shopping needs. I rush through stores in order to meet Noah's bath time schedule, knowing quickly that Noah could give his daddy a hard time at home at any moment. Yet as a hurriedly go about mentally trying to remember everything I need, I take notice of those few around me shopping. Some seem so happy, others tense with concern, while others focused reading ingredients and box labels. I wonder what their lives are like. Could any of them know what it feels like to be me on a given day? It is often a lonely experience having a child like Noah. You can't stroll with a friend for lunch, you can't celebrate milestones jointly when your baby isn't meeting any of them, you can't go anywhere you chose because Noah has travel, time and health limitations. Some days are so unbelievably hard physically and emotionally, sometimes it's simply better if you walk the road alone. Yet God is always there. Since Noah's birth my faith has grown increasingly stronger, I've found purpose that was not there before. While others have turned their backs, he has not and will not.

There is a book that I stumbled across after reading one of Noah's friend's posts. I would strongly encourage everyone to read it. The book is called Remembering Alexis by a Colorado author named Margaret Marshall Rhyne and can be ordered online or obtained at some local Costco stores which are listed on the author's website. I believe that you should live out loud. Although it exposes us to judgment I think it is more important to live the truth, regardless. We all have stories within us. This journey has dark corners, sadness, grief, but there are also joys and celebrations. Discussing this journey may help another, it may teach another, it may bring about understanding and compassion, or it may be as simple as just moving you in some way or restoring your faith. This book isn't just about what it is like to raise a handicapped child, but rather a life's journey from beginning to end, filled with all the characters that fill one's life's story, who contribute and piece together our "puzzle" as the author refers to it as. The book challenges perceptions and encourages personal growth through experiences.

The author's website for Remembering Alexis is posted below, for those interested in learning more, you can also read a personal email from the author under a link to Noah's friend, Julia.

"God doesn't play dice with the universe." Albert Einstein
Nothing in life is chance.

Stacy, Chris & Noah

Monday, November 2, 2009

Noah & The Time Change

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Noah's having a little bit of a time change hangover. Although he's sleeping a little better through the nights, I don't think anyone informed him that he should be sleeping an hour later and taking naps on schedule.

Since Noah hadn't taken a nap before his occupational therapy today, he wasn't the best participant. Julie tried offering him some peaches, motivating him to get his hands to his mouth with miscellaneous little gadgets and by sprinkling some on his fingers. He tried maybe for a bit but he wasn't really having much of it. Next week I'll have to remember to take some Costco pumpkin pie with me, that is Noah's number one food motivator. I still don't think he'll get it to his mouth on his own, but he might try harder for pumpkin pie.

I try so very hard to camouflage my worry about Noah's future, although I'm sure that his therapists can detect at times how uncertain I often feel. Maybe my brave face isn't working like it used to. I try very hard not to let on that part of me that aches for Noah to recover completely grab hold. That is still possible as all things are possible I suppose, yet I know realistically that Noah is different than other babies his age and may continue to be different his entire life. I'm trying everything I know how to help bridge those gaps in his motor skills. I can't help that feeling of wanting so desperately to fix it all for him. I have no magic wand, no genie in a bottle, no secret potion. All I can do is turn it over to God.

Noah's uncle stopped by briefly to pick up some things, and for a moment I felt like Noah had the ultimate life protector. His uncle Paul I think would be fierce when it came to protecting his little nephew from anything he could. His humor about Noah being different lifts my spirits, and reminds me that his tribe will take care of him. Between his uncle's good humor and his daddy's Noah stands to inherit a super funny personality.

His daddy knew I had a particularly rough day, a combination of so many elements. Chris never misses an opportunity to make jokes, just like he did when we were in the NICU at Children's Hospital announcing our arrival daily on the 4th flour as ladies lingerie. Tonight he was getting out a new trash bag to put in the kitchen trash can and turned to me all serious and said "Hey look at the new Costco trash bags. They are ribbed for the trash's pleasure." And Noah, when you're old enough we'll explain that to you, I promise. I cannot help but chuckle and instantly things don't seem quite as serious as it did moments before. I have to just keep remembering always laugh often.

Stacy, Chris & Noah

Sunday, November 1, 2009

Noah's First Halloween

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Noah had a wonderful time on his very First Halloween. His daddy played with him while I carved his three little pumpkins. One was a Noah's Ark pumpkin, another a mommy pumpkin and the third a cute little bat. I must have been terribly out of carving practice since I gave my fingers blisters carving.

His grandma brought us a country rib and corn bread dinner with a pumpkin cheesecake baked by his grandpa so we could enjoy the evening with Noah without having the extra worry of cooking while getting Noah gathered and in his first Halloween costume.

Noah was a little monkey for Halloween. I wasn't sure if he was going to like being in his costume or not. But he seemed to really enjoy it. He laughed and smiled and seemed eager to figure out what was next. Chris and I went out just as the sun had set so it was early enough for him not to get too fussy. We went to our neighbor Sue and Mike's house first. They have a really beautiful great dane and I think Noah was truly fascinated by him since he's so used to just looking at our little dogs. Noah also got to see his first kitty cat at their house too. I'm not sure he knew exactly what it was, but he knew it wasn't a puppy dog. Noah is full of curiosity about everything, and fears almost nothing.

After we left our neighbors we went to three other close by houses in the neighborhood, Noah's mini little basket got filled up to the brim. Noah knew that the basket belonged to him and I could tell his eyes kept getting wider and his mouth narrowed with excitement. When we got home we put him on the floor and dumped out his gatherings and he just played in them, all his prizes.

It was so great to be out in the world participating just like any other parent with Noah. I read Noah's friends' updates daily, we all share the same struggles, pain and joys. His friend MaKenzie's mom shared some of the pain that accompanies the feelings of being different at Halloween yesterday. As parents of special needs children we want so badly to have them participate just like any other child and often times what should be a normal event that any child participates in becomes something that is calculated, stressful, and hard.

The Sunday Toys R Us advertisement booklet had three special needs children models in it today. A little girl in a pink wheel chair looking through a telescope, and two down syndrome children. I thought it was wonderful. It's sending a fantastic message. I don't know if the average parent would notice such a thing or what they'd think of it even. But for special needs families it makes us feel like our children are included.

I've posted some pictures of Noah's first Halloween below. Chris and I remain very thankful that God allowed us to come this far, to share such sweet firsts with our little Noah.

Stacy, Chris & Noah

Noah's First Halloween Pictures

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Filling my Dad's Shoes

Daddy's Little Monkey

Check out my tail

Trick or Treat at my First House

My first House that gave me candy!

Smile I'm a Monkey!

Look I can make a face like a monkey!

Warden Family's First Halloween

Mommy and Me

So this is how you hold the basket?

Taking a nap so I can party all night!

The Mommy pumpkin

The Little Bat Pumpkin

Noah's Ark Pumpkin